Carole Blueweiss is a Doctor of Physical Therapy, Geriatric Clinical Specialist, and Yoga Teacher. She treats adults and children, and has received degrees from Tufts, Boston University and Northeastern University. She is a practitioner of the Feldenkrais Method® and the Anat Baniel Method® NeuroMovement®.
Carole hosts a podcast titled Wisdom Shared and is a posture coach and documentary photographer on a mission to help people stay tall.
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What do they wish they knew then that they know now? These parents share their insights and experiences with traditional and non-traditional professionals, their advice, and their wisdom. The lessons learned are valuable for all parents, health care workers, and educators.
In this episode, I’m joined by two special guests, harm reduction activist Julie Stampler and award-winning documentary filmmaker Jamie Boyle. We discuss the opioid epidemic through the frame of the incredible documentary Anonymous Sister, directed by Jamie Boyle, produced by Marilyn Ness, and executive produced by Julie Stampler. This is the story of one American family, but what happened to them could happen to any family. We learn about Julie’s brother, Jonathan, who died from a heroin overdose, and how his death led Julie into her life of activism and harm reduction work. We see two different paths to managing addiction and substance abuse disorder. This is a story told by two women who watched their siblings suffer. This show is dedicated to all the siblings out there who are anonymous witnesses.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/oD0vVqw-w6w
When a young woman turns to the camera for refuge, she ends up with a firsthand account of what will become the deadliest man-made epidemic in United States history. From the producers of Dick Johnson Is Dead and Summer of Soul, Anonymous Sister is two-time Emmy Award winner Jamie Boyle’s chronicle of her family’s collision with the opioid epidemic.
Anonymous Sister will be playing at IFC Center in New York June 2nd – 8th and Laemmle Theater in Los Angeles June 16th – 22nd, with more cities to follow.
Select screenings will be accompanied by special events and panels. For details and info about upcoming events:
Jamie Boyle is a two-time Emmy Award winning documentary filmmaker. Her work has played at Sundance, Tribeca, and SXSW. In 2019, she was part of the inaugural Sundance Talent Forum & Catalyst Lab and on DOC NYC’s 40 Under 40 list. She is the writer and editor of BREAKING THE NEWS, premiering Tribeca Film Festival in June 2023. She is the director and editor of ANONYMOUS SISTER, a personal feature documentary coming to theaters in summer 2023 and produced by Big Mouth Productions (DICK JOHNSON IS DEAD, CAMERAPERSON) and Vulcan Productions (SUMMER OF SOUL, THE REASON I JUMP). She was the editor, producer, and cinematographer of JACKSON (Showtime), winner of the 2018 Emmy® Award. She was the editor of TRANS IN AMERICA: TEXAS STRONG, winner of the 2019 Emmy® for Outstanding Short Documentary and two Webby Awards. TEXAS STRONG premiered at SXSW and launched on them. She was the associate editor and production manager of E-TEAM (Netflix), which won the 2014 Sundance Cinematography Award and was nominated for two News & Documentary Emmys®, including Best Documentary. She was the director, cinematographer, and editor of the short documentary TAKE A VOTE, which premiered at DOC NYC in 2020. She was the in-house editor for The American Civil Liberties Union and Human Rights Watch. She taught at the Bronx Documentary Center, as a guest lecturer at Columbia University, and served as a judge for the News & Documentary Emmy Awards.
Julie Stampler is a voiceover actress and harm reduction activist who is a National Harm Reduction Coalition Board Member. Julie’s harm reduction advocacy work aims to help people who use drugs stay alive rather than pushing for abstinence-only approaches. She advocates for the importance of overdose prevention programs, training people on when and how to use and distribute naloxone/Narcan, and advocating for overdose prevention centers that focus on keeping people alive with access to social service resources. Julie’s life-saving work stems from her brother Jonathan’s untimely death from a heroin overdose 20 years ago. In a twist of irony, her stepfather Jack Fishman was the scientist credited with inventing naloxone which can reverse an overdose from heroin, fentanyl, and prescription opioid medications—when given in time.
[00:00:00] Julie Stampler: Our stories are so different, but so interconnected. And when I say this work, it’s the harm reduction community work. It’s the overdose prevention work. It’s the trials and tribulations of addiction and substance use disorder. I would be hard pressed to find anyone that hasn’t been impacted in some way or another, whether it’s by a direct connection or an indirect connection.
And for me, it’s a direct connection from multiple angles. I had an older brother who lost his battle with substance use disorder in 2003, who ultimately overdosed and died. And that motivates my work in this area. And the irony of the story is that my stepfather, Jack Fishman, is credited with inventing naloxone, which is the opioid reversal drug that we’re hearing talked about a lot now in the form of Narcan.
So, in the work that I do, which a lot of the time focuses on training people how to reverse an overdose, for me, it’s honoring the legacy of my stepfather and the memory of my brother.
[00:01:17] Carole Blueweiss: Welcome to Season 3 of Wisdom Shared, where parents, their children, and siblings are the experts, and where connection inspires change. I am your host, Carole Blueweiss. You just heard the voice of Julie Stampler, a friend of mine, and she’s one of my special guests on this show. Julie is the mother of three children, a voiceover actress, a harm reduction activist, and executive producer of the documentary film Anonymous Sister, a story about one family told from the viewpoint of not only the entire family, but also experts and a Purdue Pharma executive who shares disturbing stories about how she was trained to sell and market opioids.
I am so grateful to have Jamie Boyle join us on this episode as well. She is an award-winning documentary filmmaker and the director and editor of Anonymous Sister. Jamie opens up a window for us and invites us inside to see her family’s space.
We’ve all heard of the opioid epidemic by now, but we might not appreciate yet the complexity of what actually happened. And how and why people became dependent on these pills and how Purdue Pharma played a huge role in misleading the American people. This is a unique story of one family, and yet the people can be anyone we know.
Jamie helps us see so much of what is usually invisible to the public eye. It’s like seeing what lies beyond the Facebook smiles. You know what I mean. Let’s listen.
Welcome to Wisdom Shared.
[00:02:59] Julie Stampler: Thank you Carole. And thank you for the opportunity to be here. We came together basically singing kirtans, which was magical and still holds a dear place in my life. So grateful that we were connected so many years ago. And then here you are bringing your wealth of knowledge to people and giving people like Jamie and I an opportunity to share our stories.
Jamie and I have a mutual dear friend who has become that for both of us. Marilyn Ness is an incredible producer, director, documentary filmmaker, and playwright. Been an honor to have been connected and to help Jamie share her story because as I know, I think I can speak for Jamie, as we do tell our stories, there’s healing in every moment.
[00:03:42] Carole Blueweiss: Let’s let Jamie describe, well, tell us about herself and about the documentary, even the name of the documentary and how that even became the name of the documentary.
[00:03:52] Jamie Boyle: Sure. Yes. I’ve tried to think about how to parse this down into a few sentences because the documentary does follow my entire life. But to make a very long story short, I started filming my mom and my sister about 15 years ago now when I was still in college. And I had just taken an intro to film course. I started filming them because they were both becoming increasingly dependent on the opioids they were being prescribed. I didn’t know that that’s what was happening at the time.
Of course, I had an inkling, but there it was wrapped up with so many other potential illnesses and pain and side effects that it was really, we didn’t know what to untangle. I just knew they were very sick, and we were worried about both of them and then worried about each other. So, I started filming just as a student kind of project, and about a month after I finished, my sister went to rehab, and then about six months after that, my mom was able to get sober with the help of medication-assisted treatment and did it at home by herself with my dad’s support.
But anyway, I graduated college and moved on, you know, tried to embark on a documentary career. By this point I really believed in the form, and it had provided so much to me in a moment of real distress and not knowing where else to turn. So, I started telling other stories for a living. Moved to New York from Colorado and met Marilyn, Julie’s friend who she mentioned, and actually was her intern to start out back in 2011 or 12.
And yeah, I came to her with the idea for a feature film using that footage and combined with present day footage and my family’s home movies and old archival and expert testimonial, and wanted to interweave our whole story with the larger picture of the epidemic with other stories, if that made sense, with kind of the macro view.
And she was completely on board and very supportive. Julie said everybody’s been touched in some way by this, and she was really interested in this issue from a lot of different angles, from the medical malpractice to the failure of, you know, governing bodies to the lack of support and resources for treatment.
So, she was really interested in it and, and a very accomplished documentarian. So having her come on as producer was phenomenal. And from there, we just gained support. Julie being a huge, huge component of that. And we’ve had various different versions of the rollout of this film, so it went to festivals all of last year. That’s a little bit of who I am. And yeah, I have done other documentaries that I’m incredibly proud of. They’re all in the social justice sphere.
[00:06:34] Carole Blueweiss: I did see a few Emmys in there. You’re very modest.
[00:06:37] Jamie Boyle: Yes. Thank you.
[00:06:38] Carole Blueweiss: You said nothing about us, without us, which we all know is a slogan that’s used in the disability community. And this podcast started off as interviewing parents of children with disability because I did feel that nobody was asking the parents. And then I started to interview the kids too, when it’s appropriate. And anytime I can, I will. And this slogan has come up and I think it’s a very important one.
And here we are talking about a story about the opioid epidemic as it’s come to be called. And yet we’re still coming back to why did this happen and whose story are we listening to? It’s very complicated. And yet a lot of the film was done when you were a child. Was your father like a professional photographer or videographer? Or he just was like a passionate amateur?
[00:07:32] Jamie Boyle: He would be so flattered by that suggestion. I always like to say of all my family members, like I’m the least artistic of all of them, although none of them made a living doing that. My sister’s a phenomenal singer. My dad is a writer and my mom’s a painter. And owned a feed store.
I come from a very working class family background and he actually got the top salesman prize, which happened to be a camera, or I think his feed store did. And he got the camera because it was only like three employees. So he ended up with that camera, which is a big question for people because apparently in the 90s you didn’t really have one of those unless you had certain amount of money.
So, people who were adults at that time are, how does he have this camera? And he loved it. I credited him with a cinematography credit because he’s a great shooter. And now that I know that world, I really recognize his talent, the way he followed my sister and I. So that, or the bulk of what makes this film so great, are those home movies.
Really that’s why we say 30 years in the making. So, it sat around for a long time, that footage, just not doing anything with it. And as the epidemic got worse and more and more stories came out, and I got more and more comfortable behind the camera and telling these bigger stories, I circled back to it and tried to figure out a way to use it all.
What I was gonna say to Julie was that I was feeling especially about, you know, five years ago, around 2016, that all of the media portrayals, or the bulk of them that we saw, all looked the same and felt the same. And it often would be people at their worst and sadly, their least recognizable. The hardest part of the hell of addiction is that, you know, when people are in the most need, all the things are working against them. Everything from behavior to hygiene to how they present themselves to everything, distancing people and society from them. And I kept feeling like all of the media portrayals really focus on that, just that part of their life.
And only the people, their family and their loved ones, knew their whole person, who they were before this, how they got into it, who they were after, if they survived, you know? And it was that whole picture that I really felt like was missing. So as painful as it was to offer my family’s intimate home movies, which now is pretty normal, but from the 90s, not so much.
Offer those up for the world felt like a big sacrifice and asking them for a big sacrifice. But it felt worth it because it didn’t feel like we ever got to see the whole person behind this issue and these stories in a way that, that yeah, everybody could connect with and see.
[00:10:08] Carole Blueweiss: I can say as a viewer, I was able to see the latest version of the film, and I feel like I read a 1000-page novel where I got every character in the story. And I could even see myself seeing this family in their Christmases, in July 4th, and in the living room and in between things and good times and bad times because you always had the camera also, or someone in your family always had the camera.
And if I didn’t know the understory, it seemed like the American family that everything is fine. Everybody’s happy family that does everything together and sings karaoke together and supportive and the sisters get along and the mother’s beautiful. And so, it almost played with my head because I’m seeing so much good and then so much tragedy.
[00:11:02] Julie Stampler: And I think that’s the magic of, one of the words that’s continued to come up during this process is courage. The courage of Jamie and her family to share their story. And I think that’s so much value. So yes, we get to see their, the family home movies, but we’re watching the spiral at the same time. And while we can hear all the news stories about the opioid crisis, coupled with the Covid pandemic, coupled with fentanyl on the streets, all of it. It doesn’t become human, right?
We can push it away, we can dissociate from it. But what Jamie has been able to do, and so wonderfully willing to do, is basically open up her family and her family agreed, thankfully, to share their story. And now all of a sudden, it becomes real. It’s like, wait, those people look like me or that looks like my family. And those are the kinds of things that we did. And holy crap, this could happen to us.
And I think that’s part of the hope for putting this film out there is that it does help. And we already know it’s helped. You know, one of the things that I don’t actually know that we’ve even given the name of the documentary of the film yet, but that was the seal of the deal for me, because the film is called Anonymous Sister.
[00:12:33] Carole Blueweiss: Yeah, I mentioned that in the beginning in one of my questions, so I’m glad you’re bringing that back, Julie. Perfect. I’m curious. I can make up reasons, but I, they would all be guesses why you decided to name it Anonymous Sister?
[00:12:43] Julie Stampler: And I think the answer could be different for everybody. For me, it is so deeply layered because through my brother’s substance use disorder, I was invisible or anonymous. So that’s like when we were talking about the film already and it was like, oh, this sounds interesting. I might be willing to get involved. And then I was told the name and that was it. That’s when I was like, oh, so this is a film for me. I understand. Right? And I had a different understanding of Jamie and a different, even getting to know Jamie’s mom and hearing more about Jamie’s sister and understanding, you know, there’s the 12-step program, which is Alcoholics Anonymous. Narcotics Anonymous.
So, there’s lots of different layers. But for me it was the sister component of the anonymity that pulled me in. So, Jamie, I don’t know if you want to share the story about how you landed on Anonymous Sister. I think that’s vital.
[00:13:41] Jamie Boyle: Oh, thank you. Yeah, I never knew that Julie, so I’m so glad to hear that. And I knew you loved the title, but you never told me that story. So that means a lot, especially feels fated because I wrestled with that title so much and I felt like it wasn’t clear enough and that I needed to come up with something better. And it really made, makes me feel like it was for a reason that it stayed.
So that means so much to me and, yeah, you’re exactly right. It’s open for interpretation and that’s why I loved it. There are probably like 10 different reasons why I settled on that title, and I’ll tell you the top few. The first one was, I was thinking of Jordan, my older sister who’s in a 12-step program that obviously has anonymous in the name. And I always wanted to do something with that. I just was fascinated by the program.
And then there was, there’s al-anon obviously for friends and family. But then my mom and people who use medication-assisted treatment were at least, you know, 15 years ago, a little ostracized from that community. And those are gaps that people are starting to bridge and I’m so grateful for that and working to bridge. I don’t have a direct experience, so I can’t speak so much to that as well as my family members could.
But the title really started to evolve to be more about me after that. And I think somebody said, oh, I figured the anonymous sister was you. And I was like, oh, maybe it is. Because I realized that I was playing with this theme of, people would ask me, why were you behind the camera and what made you film?
And then I think another filmmaker asked me like, were you hiding back there? Or I think you were hiding behind the camera. Even when she saw the videos of me little was that I just wanted to be behind this device. And I think as things started to get really bad in my household with my family members, I was so exasperated at times wanting to force them into getting help and nothing was budging.
And I felt so helpless in so many ways that it was like I had to be there, but I couldn’t fully be there. I needed something in between me and what was happening. Like I needed a barrier, and I needed a level of anonymity. And so, it gave me all of those things.
And then, you know, I really did not want to put myself in the film. I felt like I wanted people to see kind of as me instead of see me as part of it. And what I learned quickly through, you know, great test screenings and feedback was, it was actually more distracting to not have me there. And they were just wondering who is this person and wanting to connect. So, I did add touches of myself throughout to grab onto, but that feeling of wanting to be anonymous and also finding some release in that anonymity really carried the day.
And then what compounded it as well was feeling like I could be anyone. My mom could be anyone, my sister could be anyone, my dad could be anyone. And this feeling of you could be any sister, any family member, any loved one that felt like it should kind of define this film and wrap its arms around everybody, even tangentially connected to this issue. That was the goal.
[00:16:56] Carole Blueweiss: Yeah, well now it’s like, well, yeah, duh. Like, you know?
[00:16:59] Jamie Boyle: What did you think?
[00:17:01] Carole Blueweiss: Like I haven’t had enough time to really even think too much about it, but my first just response, anonymous sister was, it was your sister who was not understood and she was struggling in anonymity.
[00:17:12] Jamie Boyle: That’s definitely a component of it, I think. Yeah. Jordan and I are twisting mirror images of each other, as all siblings and especially sisters are, and she definitely struggles with feeling misunderstood and out of place and the kind of the loss of her in varying degrees, whether it be to substance use or just other life things has contributed, I think, to her feeling that way too.
[00:17:37] Carole Blueweiss: I thought it was really powerful to be with you behind that camera. Somehow you were able to show the feeling of not being able to help your family. Do you want to say anything about that, Julie, and you’ve experienced it in your family and what kind of reactions you get when you mention that you had a brother who had passed away from a heroin overdose?
[00:17:58] Julie Stampler: Everybody is always very, oh, I’m so sorry. You know. The prescription pain pill epidemic is a little different from someone who advances their substance use in a different path, which was ultimately the way my brother started. So, what we’re learning today, and especially, you know, the story in Anonymous Sister, is someone will go through an experience, whether it’s wisdom teeth, a broken ankle, surgery, whatever it might be, and they’re given a prescription for pain pills. Or they just have chronic pain.
And so, they begin a prescription for Oxycontin, for Percocet, whatever it might be, and then become dependent upon it and then get cut off. And when that happens, now you’re dealing with someone who’s physically ill and needing to fix that. And, you know, when people talk about getting their fix, it drives people to the street to get heroin, which is super-duper easy to get.
And unfortunately, the drug supply now is essentially poisoned with fentanyl. And if you don’t have any tolerance to fentanyl and you end up getting some heroin that has a little bit in it, you’re gonna overdose. So, the CDC came out with new rates yesterday and in the last, I think it was two years, the rate of overdose deaths that are related to fentanyl went up 279%.
So, there’s a lot that needs to be done. You know, one of the things that we were doing last year when we were on the festival run with the film is that we would do Narcan trainings at as many screenings as we could, and people would walk out with an overdose prevention kit. So, it’s, while the film illuminates the pain of this disease of addiction, we also don’t want people to walk out of there feeling completely hopeless. Right? We wanna give people power to save a life if they have to, to find resources for help if they need to. And that’s what’s really been an incredible part of the journey is, you know, we talk about, a lot of the time, we talk about the stigma and shame associated with substance use disorder.
So, someone to share their story, and that’s what’s so interesting is, again, it’s called Anonymous Sister, but the last thing you’re doing in this film is being anonymous. If anything, you are fully broadcasting your family. And I thank you repeatedly. And I think anybody who sees the film walks away going, wow, that was so brave.
And as you said, Jamie, in the beginning and, and as you say in the film, it could be me or it could be my sister, or, and so combating the stigma and the shame associated with substance use is tremendous. And so, we try to do that a lot with our language and how we talk about substance use disorder and people who use drugs. And it’s just a great arena for this to happen.
[00:20:58] Carole Blueweiss: I want to add to what Julie’s saying, Jamie, in that what you did so well in this film is show, not tell, you know? And the lines, I don’t know if there was very few or a lot, but the message from me hearing how your mom and sister were fighting this addiction, let’s say, and in the film you really feel that, I hate to use the word victim and I don’t know if you would agree with me or not, but the people that ended up addicted to prescription medications, whether they’re in a wealthy town or not a wealthy town, they were targeted and they were told that they don’t have a problem over and over again. And so, what are your thoughts on that, on the tragedy and the frustration? Like the people that you look up to, the doctors and the government, they just failed.
[00:21:51] Jamie Boyle: Yeah, I mean, it’s a really, that’s a really great question and it’s my favorite one to kind of untangle, although I could talk for way too long about it. Because I mean, first off, I really, I see, and I think we’re moving as a society to a place where I see everybody who has substance use disorder as a victim of a variety of social and economic circumstances.
It depends on the individual, but my family members’ path happens to be through their doctors. And, of course, that was enormously frustrating. I think that people who maybe have family members or loved ones who initially start with, you know, illicit drugs, the frustration is probably with their peer groups or their poverty level or their social circumstances. And that’s no less frustrating or hard to combat, I’d say.
But I think that this is, I think the sad, unfortunate silver lining of this affecting the population that it has, is that it’s forced people to look at substance use disorder in the correct light, which is as a disease that people suffer from for a number of reasons.
So, you know, that is, that’s the good of it affecting everybody, you know, primarily an upper-class white population, is that finally you have lawmakers and society as a whole paying attention. Now, whether they will treat any other drug epidemic similarly is, you know, up for debate. But I can say that the added component of having the entire healthcare system playing a role in this was enough to drive me nearly crazy from a, you know, high-functioning, almost straight-A cheerleader to you know, a very cynical, very depressed, very anxiety-ridden, panic-ridden, 21-year-old.
And it did certainly feel like no matter where you turned, I mean, this was, granted, this was 2009, but it was every doctor, it was every hospital, it was every hotline you called. There was no information, no resources, no help. To the point where, you know, finally when you make some headway and convince them to try to just taper down.
And I think my mom says it in the film, we don’t go into it very deep, but their doctors would drop them as patients. They would stop taking their calls and say, I legally can’t keep you on as a patient anymore because a family member called, or somebody expressed concern and it’s just too much of a liability. Really sadly, like nobody still knows how to treat people with opioid use disorder.
My sister, who was in the hospital giving birth, her and her friend were offered Vicodin and, you know, came to find out finally six nurses later that IV Tylenol works just as well, if not better. And you know, Jordan ended up with one nurse who said that, and she got IV Tylenol and her friend who’s in NA had a nurse who did not tell her that.
And she had to take Vicodin for a couple days. Thankfully it didn’t lead to relapse. She was okay and, you know, had her support group around her. But just mind numbingly frustrating. My mom was told before a knee surgery a few weeks ago that she had to go off her Subutex cold turkey or she would not be able to go into surgery.
And yeah, I mean, I could go on and on with the stories of how ill-equipped and, you know, it’s no one doctor’s fault, but it is important for people to know that this is the modus operandi at the healthcare system at large. They are just not equipped. So please inform yourself, inform your loved ones. The DEA did just come out with requirements that any DEA registrant, so any prescriber, now has to take an 8-hour training in substance use disorder, thank God, finally. By June 23rd, I think. So that’s a huge start. I actually signed up for the course, so I’m like about an hour in and seeing, because I really need to know what’s in that course and if it’s sufficient.
[00:25:56] Julie Stampler: I was just gonna say hopefully it’s not filled with misinformation, which happens all the time from government agencies. It’s just, I wanted to add that we are trained from a very young age to listen to your doctor. So, a lot of times we don’t advocate for ourselves because I’m not a doctor, so I’m gonna trust that what you’re doing for me, what you’re prescribing to me is the best course of action. And we forget that we just saw the well-manicured, high-heeled pharmaceutical agent walk out with her little wheely suitcase. And basically, what they were doing was enticing doctors to prescribe more and more and more.
And that’s what is an added bonus, I guess, in the film that there is a whistleblower who comes forward. That was her job, regardless of what she was potentially hearing. And that’s why you need to see the film to really understand the magnitude of what was happening with Purdue Pharma, that they were basically pushing their sales reps to push the doctors. And when somebody would say, 10 milligrams, they’re still in pain, oh, they need 20, then. No. Maybe we need to actually understand what’s causing the pain.
And when you do a little bit more research into the effects of prescription pills over an extended period of time. Now, it’s not to say there aren’t chronic pain patients who need a steady dose of pain pills, but there’s a way to do that safely, and there’s a way to make sure that people aren’t overdosing while they’re doing or using whatever they need to get through the day. You know, there are plenty of people who say, if I don’t have my fentanyl patch, I can’t actually walk the dog.
And it doesn’t mean that they’re in chaotic use. It means their pain is controlled. And that’s the interesting thing when you consider if somebody is in pain, a lot of the time the pain pill is doing what it’s supposed to be doing and they’re not altered. It’s when it becomes out of control and they’re increasing doses. And increasing doses just to get that effect is when people get into trouble.
[00:28:12] Jamie Boyle: Well, the other thing to add that’s really important, that’s so hard to understand, and it is absolutely individual, but, and I just have to say, because Julie hit on this perfectly. So, my mom, and you’ll see in the film, and sister were people who needed a fentanyl patch to get out of bed.
She says in the film, if I didn’t have my patch and I didn’t have the morphine, I would not be able to get out of bed in the morning. Now the thing about opioids that people are finally starting to understand, but the CDC hasn’t quite caught up. As Julie said, pharma has not only sent sales reps, the bribing that we all know about, but they have infiltrated all of our oversight committees.
This is just one example, but the man who approved Oxy in the first year in 1996, Curtis Wright, went to work for Purdue Pharma just a few years later. That story, time and time again with so many individuals and they, you know, the pain scale that is used in hospitals, it was implemented and funded by Purdue Pharma.
It’s still something that’s used all the time. But the point I want to make about chronic pain is that opioids are really interesting and really complicated, and I’m not a doctor. There are ways in which they can be used long term, but daily around the clock use is, the evidence is resounding that it makes pain worse, specifically because your tolerance is going up.
There’s no world in which your tolerance isn’t increasing. Even if you’re suffering from fibromyalgia or an autoimmune disease. That’s just how drugs work. Your tolerance is going up, so you will need more to get out of pain. Now, the problem people in chronic pain have is that they’re in pain without them and they’re in pain with them and they’re just barely functioning with them.
So, we have a real problem to combat in terms of how we treat it. People are looking into cannabis and physical therapy and acupuncture. Now it takes a long time. Both my sister and my mom had residual pain. My sister, for a year or two because she didn’t take medication-assisted treatment. And my mom for about six months.
Just random pains, back pain, pelvic pain. Now both are completely pain free and have no chronic issues. Getting past that first year, that is difficult. And trying to figure out what the opioids were causing versus what they were helping, I mean, my heart goes out to anybody embarking on that. I hope that our healthcare system rises to the occasion to help these people in the way they need it. Because yeah, Julie’s absolutely right. There are people suffering with pain that they need help managing.
[00:30:50] Carole Blueweiss: Tell a little bit of the story of, obviously people haven’t seen the film yet, but they can in June if they’re in New York.
[00:30:57] Jamie Boyle: So, she was a prodigious figure skater, nationally ranked, and yeah, the star of the family, the focus of our attention for a lot of reasons. And she got nerve damage in her foot, her landing foot. So, at first it started out just, you know, she can take a handful of Tylenol, handful of Advil she needs to compete. And then as she started developing pelvic pain around the same time. And it gets convoluted, but she was prescribed Vicodin. Actually, the first time she was prescribed, it was for UTI and pelvic pain that kind of went hand in hand.
And she was prescribed 30 days for that. And then between that and the nerve pain in her foot, there were a couple different isolated pain instances going on. And then that Vicodin prescription was re-upped. Or I think they start you on Percocet and then you move to Vicodin or Vicodin and then Percocet.
And, like before you know it, we were like three months or six months in and she needs it every day. And her pelvic pain is getting worse. She’s getting migraines and now she’s getting side effects from the pain medication. So now she’s often tired. So, she’s prescribed Adderall to wake up and go to class when she needs energy.
Now she can’t sleep at night, so now she’s prescribed something to sleep at night. Usually in combination with something like a benzo. So, then she’s prescribed Xanax because her anxiety is skyrocketing and now, she’s on this like cocktail. And that was just the beginning. That’s like the first six months.
Then we get down to the road of does she have Crohn’s disease, does she have fibromyalgia? Does she have, because she was just deteriorating physically and mentally, just spiraling and in horrible pain. I mean, couldn’t go over bumps in the car with her. She’d scream out. It was so obvious. Endometriosis, she was diagnosed with, she had laparoscopies all the time.
Just this continuous circle of trying to figure out what’s wrong, diagnosing things that aren’t testable. Anyway, by the end, she was on OxyContin just around the clock. Morphine for breakthrough pain or something to go to bed, something, a shot for when she got migraines. Just a constant cocktail to just, and the pain was all we talked about. All we talked about, and my mom was similar.
But it just very quickly, I think it’s helpful for people to know that what starts as an acute injury or acute pain very quickly becomes something chronic that is undiagnoseable that you can’t figure out the source of. And if they can’t figure out the source of it, which is very often the case, you know, a lot of those people I think would benefit from seeing how they do with medication-assisted treatment or something. But again, with the care and support that they should have.
[00:33:35] Carole Blueweiss: So, I just wanna bring you back. You had said that medication that your mother was taking, she was told to stop taking that in order to have her surgery. Can you just briefly explain what that medication was and why it was important that she not stop?
[00:33:50] Jamie Boyle: Sorry. I throw these terms around like just so easily now. She’s on Subutex. It’s a form of what’s considered medication-assisted treatment and in that class is buprenorphine. Methadone was the original kind of medication-assisted treatment where people have to go to methadone clinics. And around when my mom and sister got off opioids, they were starting to be prescribed at home because we saw this uptick in people with substance use disorder. Julie, you actually might be able to describe it better. You give it a shot.
[00:34:22] Julie Stampler: It is a maintenance drug, essentially, like a diabetic’s gonna always need insulin. Someone with substance use disorder could likely always need something like methadone or suboxone. And essentially, it helps with cravings. And a lot of times, that’s at the nerve center.
And so, it could ultimately help remove the pain because the pain is what’s telling you to call for the Oxy or the heroin or the meth, whatever it is you’re searching for, but you, you’re looking for anything to get rid of the pain. And the Suboxone and the methadone, the Subutex, helps remove the cravings essentially.
[00:35:01] Carole Blueweiss: So how do we know that we’re not getting addicted to that?
[00:35:05] Julie Stampler: Who cares is the answer. Really, who cares? If you’re functioning, if you’re not, you know, in chaotic use. If it’s not problematic in any way, who cares? Right? If I know for me, like right now, I need a spoonful of honey. And if I’m gonna need a spoonful of honey every day, for me to be able to have a conversation with you and me taking that spoon full of honey doesn’t affect anybody else around me, I’m gonna take that honey.
And if me not taking the honey ends up impacting other people because I’m coughing everywhere, I can’t get through a conversation, that’s what is called harm reduction. So, the honey for me in that scenario is harm reduction. The Suboxone, the methadone, the access to an alternative to substance use disorder is the goal, right? Do we want people to be dependent? If it helps them stay alive and helps them function in their lives? Who cares is my answer. That’s just me.
[00:36:09] Jamie Boyle: And they’re getting a lot more sophisticated all the time, so you can’t get high or euphoria off of them. Now granted, when you’re deep into opioid use, you’re not really getting high anyways. You’re staving off withdrawal. But they’re pretty sophisticated in that there are some side effects, but they’re pretty minimal and you can’t really get that euphoric effect. It’s a lifesaver for millions of people.
[00:36:32] Carole Blueweiss: So, you mentioned in the film that 2019 was the last time you were all together, and I just wonder if you feel comfortable explaining that?
[00:36:41] Jamie Boyle: Yeah, it’s similar to the title. There is, as in any family, there’s so much to untangle. There’s so many factors that have caused rifts in our family. My sister, I don’t think she’d mind me sharing, pulled away a little bit from the rest of the family during Covid. And the reason I include it in the film, which is what I find most helpful to talk about, is that I had so many people come up to me at screenings and in conversations saying that they were estranged from a family member, either because of substance use or totally unrelated, but they were so grateful that I put that in the film because they, again, it just, they felt like they weren’t alone.
Somebody saw them, and yet again, I was making this film about basically a love letter to her and my family, and that felt like an important component that like, if I could give people the opportunity to, again, say whatever your family looks like right now, it could happen to anybody. It’s okay. It does happen to everybody. We’re all there because I feel so alone in that estrangement, and these things happen in families, you know, but it’s horribly isolating and sad. But to know I’m not in it alone is everything.
You know, we’ve been through a lot as a foursome. And then Covid hitting, I don’t think it was a coincidence that another giant public health crisis hit, and those rifts started to creep back in. We already live spread out. My sister’s in Colorado, my parents are in Florida, I’m in New York. So that’s always been the case. And then all of a sudden, we can’t travel. Jordan can’t go to meetings, everything’s moved online. That is her entire support network.
And so, you start to see how, you know, these giant global failings and crises really start to tear at those very vulnerable things. We finally figured out how to sew back up and that, you know, it’s nobody’s fault. The systems are broken, but I just wanted to give people that reassurance that it we’re all in this kind of boat. Again.
[00:38:49] Carole Blueweiss: Thank you for sharing that because the story in a way could have been a happily ever after story, which stories never really are. So, putting that in there made me so curious about that you seem to have ended all on a good note, but clearly, it’s not the end of the story, is it? It never really is the end of the story and it’s very, very complicated.
And then just the idea that there was a Covid that ripped many people’s lives apart and, we know right, the more vulnerable people were the ones that suffered the most. It ripped through families.
[00:39:25] Julie Stampler: Well, and the accounts of overdose went through the roof during Covid because people were alone and using alone and that’s never a good idea.
[00:39:34] Carole Blueweiss: And people started again too.
[00:39:36] Julie Stampler: Yeah.
[00:39:37] Jamie Boyle: And people with Covid pain were being prescribed opioids. Again, I had a nurse in Florida saying, I’m giving Covid patients fentanyl. And you know, I was horribly worried about my family members if they had to come into contact with the healthcare system again that was just not prepared.
And you hit on something really important, which is what I was trying to say. And that is in so many ways, we are a happily ever after. They’re alive, they’re with us, and they’re sober. That’s unheard of. So it is, but, and I almost felt bad not ending the film that way, because that is true. And we’re so unbelievably, unimaginably lucky and so in the rare minority in that regard. But you know, it’s never that simple. And I think that was the point I wanted people to leave with. And so, I’m glad that that resonated.
[00:40:29] Carole Blueweiss: And we don’t see scars and yet they’re there and if they’re not exposed. So, what it almost feels like what you’ve done is you’ve told a story. And I think people will appreciate that it’s not a typical story where at the end there’s a certain type of tragedy. Well, there’s many kinds of tragedies. The visuals you used to describe the anonymous one, let’s say, becoming less anonymous in that little particular segment where your dad mentions some of the hardships that he noticed you were going through, that was very strong. How can you just watch all this happening? It’s got to have affected you.
[00:41:03] Jamie Boyle: I almost didn’t put that in the film, and that’s why Julie, you saying that and you feeling that my presence and my anonymity and, and that feeling of being a sibling or I know caretakers often feel this way, that level of just always putting yourself second, you have to, you just do.
And that’s just what happens. So, it doesn’t take like an exceptional person. That’s just the dynamic that develops and, but you do become the second tier. So, it was hard to put, it’s still hard to think about my own stuff in all of this. I think that’s hard for all of the siblings. Like people say take care of yourself. Take care of yourself. And you’re like, what does that even look like? Am I doing it now? I don’t know.
But yeah, after they both got well, I actually think this relates to a lot of what society is dealing with in the aftermath of Covid or aftermath, are we in that? I guess so. Is that, you know, my grandpa used to say like, you can shove it all in the closet or in a box, but like eventually there’s gonna be one little thing that pops that box open. It’s all gonna come flying out.
Yeah. About a year after my family members got off opioids, I had, I guess, what can only really be described as a nervous breakdown. And it looked a lot of different ways. It was like depression and panic when I never had those things. Anxiety and all of the things that I had felt during their using, but they were well now, and I had graduated college and I was supposed to be starting my life and I felt, what is wrong with me? Because I got them back. You know, my greatest dream came true. I literally felt like ghosts had gotten up out of the graveyard and come back into my life.
I mean, I had said goodbye to my sister. I had wrapped my head around that loss. And then she came back to me, and she was laughing again. When someone’s in the throes of substance use, like you don’t see them. I hadn’t seen her in years. Like I missed her so much. And so, I felt like, how could this be happening?
And now I’m so depressed and so just a wreck. And then I went to therapy and saw some great psychiatrists and they let me know, no, that’s exactly what happens. And that’s exactly why we tell caretakers and loved ones and siblings to give all of that care to yourself because that’s exactly how it functions.
It builds and builds and builds and, in some way, it’s gonna come out and it doesn’t make sense. The time, the place, the circumstances don’t always make sense. They usually don’t. It’s usually quite a bit after the fact. And the form is not always what you’d expect and not in line with your personality or, you know, however you perceive yourself.
And that’s part of it. And I haven’t dealt with a loss like Julie has, but I’d be interested, Julie, if you’re comfortable sharing how that looked for you when losing a loved one. Were you similar?
[00:43:49] Julie Stampler: It’s incredibly challenging to consider all of the things that might have been. It’s hard. I look at my kids and it’s, ah, if only your uncle was here. My brother Jonathan was an incredible musician, and I could see that they could all, they would all be sitting there jamming together and singing together. So that, it’s devastating to think about, but I think what a lot of people don’t talk about, because it sounds horrible, there was a sense of relief when he passed because I didn’t have to worry every time the phone rang.
I didn’t have to worry every time I took that turn and passed that corner where I might have seen him once panhandling or begging for money, right? So that relief feels so counterintuitive because I just lost my brother, but I also now know he’s no longer in pain, no longer struggling, no longer suffering.
And so, so there’s a strangeness that comes, you know, and I say this all the time when I talk about him, he’s saved the lives of countless people with his passing. And people have told me that, you know, years later, I’ll run into somebody who knew him, who will say, by the way, it was Jonathan dying that made me find help and get sober.
You know, I talked to my, when I talk to my kids and I talk to other kids about substance use and harm reduction and overdose prevention, what I handed my children, which is a gift from my brother, you’re in a situation where someone’s offering you something and peer pressure exists, it’s a thing. And you don’t wanna look like a loser. You don’t wanna look like a square, you don’t want. So, giving children language around a situation like that. Yeah, no man. My uncle died from that stuff. I’m not going near it. Thanks, though. No one’s gonna question you, right? No one’s going to point fingers and laugh at you and tell you that’s BS or whatever.
It gives kids an opportunity to get out of an unsafe situation. For sure. And I know giving a script essentially has been really helpful to them. You know, knock wood, everybody’s okay before they walk out the door, whatever it is that they’re doing. I always say make good choices. So, I repeatedly talk about how I’m devastated that my brother’s not here, but he continues to save people every day as a result of him not being here.
[00:46:37] Jamie Boyle: That reminds me of a story, a quick story I have to tell involving Julie. Julie’s at the center. Because his presence is so much a part of this film and its release through Julie. And Julie’s presence is beyond enough on her own, but I feel his spirit and the loss of him in all your work.
Because I had a friend who, I don’t think she’d mind me saying, was at our Denver premiere, which is where I’m from, and Julie was there with me. And this friend hadn’t shared anything with me. I hadn’t seen her in a while. She didn’t know my family had dealt with this, even though we were very close at the time it happened.
But that’s part of the stigma and shame. I didn’t share it with anybody. So, she found out through watching this film when she came to the screening and Julie shared briefly her story of her loss when she did our Narcan training after the screening. And this friend of mine came up to her and shared with her that her husband was having a problem with opioids that he’d been prescribed. And then, not prescribed.
Then after that, he’d ended up taking some of hers. But anyways, he was deep in the throes of a problem, and she was worried about him and confided in Julie and Julie for over a long time, gave her Narcan. And a week later, actually, like the night after Thanksgiving, she called me and said, I just used the Narcan on him and he is in treatment now.
If it weren’t for Julie sharing her story with the kind of love and passion that she has and Jonathan’s spirit, like it wouldn’t have happened. And I know this friend, she’s a fairly private person and she hadn’t shared that with me. She did after she shared with Julie. But it was absolutely her courage that led to that. And it was incredible to witness. And that’s one of, I’m sure, hundreds of stories about the work Julie does.
[00:48:29] Carole Blueweiss: Wow. And then, I don’t know if this is full circle or not, so Julie, your stepfather, he invented naloxone.
[00:48:36] Julie Stampler: Yes.
[00:48:38] Carole Blueweiss: I was under the impression after talking to you about that, that in part that was also inspired by Jonathan. Is that, no, that was a coincidence?
[00:48:48] Julie Stampler: No, not at all. No, no, no. That was totally coincidence. My stepfather was a brilliant, brilliant chemist, researcher, worked in a lab, and this is the story that has circulated in our family arena. And no one has corrected me yet. But from what I understood was that he was doing research on constipation caused by opioids and trying to figure out a way to combat that, and found that this little molecule kept blocking the opioid receptor, and while it didn’t do anything for constipation, it stopped somebody from experiencing the effects of an opiate.
And so, this was in the 1960s and essentially it came to be called naloxone and is basically in every ambulance, in every hospital. It’s remarkable what it has done in terms of just the world of medicine. My brother’s been gone almost 20 years, which is hard for me to even fathom. And my stepdad has been gone for almost 10, so it’s wild.
I’ve been doing this harm reduction work for about a little over 10 years and training people on how to reverse overdoses. It was October of ’21, I actually used Narcan on the New York City subway platform and it was the most surreal experience because this 19-year-old kid was gone. He was just splayed out, gone, eyes rolled back in his head. There was a nurse, thank goodness, who was starting CPR.
Thankfully, I was there, and I had Narcan on me, but when I watched this kid get up and walk away, I swear my stepfather and my brother were standing there with me. Makes me cry. It’s a testament to the work that we do because just that one kid, because this is the point, right? We share our pain with other people because we hope we prevent other people from experiencing the same. So, see the film, get some Narcan, save a Life.
[00:51:10] Carole Blueweiss: How do we get Narcan? I want to carry it with me.
[00:51:13] Julie Stampler: You could come to a screening at the IFC, the week of June 2nd in New York City, and we will be doing trainings after the screenings. You know, we just heard a big announcement that Narcan, the nasal spray version of naloxone, is going to be made available over the counter. But most syringe exchange programs, and you can Google and look for any in your area, will offer Narcan usually for free.
But make a donation if you can afford it. Generally, at least in the New York City area and most metropolitan areas, you can go into any pharmacy and go up to the pharmacist and ask for it. It will cost you. Some insurances will cover it. Some people don’t want it necessarily to be attached to your insurance, but if you want access to it right now, just go to CVS and say, hey, I need some Narcan.
And they don’t get to ask you why or what for, but you know, just say I have a relative with, you know, substance use disorder, or a kid who was prescribed an opioid, and I want to just have it in the house and you should be able to get it, no problem.
[00:52:17] Carole Blueweiss: One day, hopefully it’ll be available for a very low cost or.
[00:52:21] Jamie Boyle: Ideally, yes, free. Yeah, I know there are also a lot of states that have passed laws saying that you can’t get an opioid prescription without a Narcan prescription as well. I don’t know if that’s everywhere. That’s a step in the right direction. And then I also wanted to say fentanyl test strips are becoming more readily available and I actually just told a construction worker near my building who lost one of his young kids to a fentanyl overdose that he thought he was taking Xanax.
So I told him about, and he had no idea those existed. So, I just want to say, on the airwaves, so to speak, that those do exist. And there are groups that Julie is in touch with and works with that hand them out at bars and restaurants, put them in bathrooms. You can probably say more about how to get those, but they’re around.
[00:53:07] Julie Stampler: Dancesafe.org. You can actually go on their website, and you can order fentanyl test kits and you can order drug testing kits. That’s a component of overdose prevention trainings that I always talk about is know what you’re getting, know what’s in what you’re getting. Hearing that story about your construction worker’s kid, that’s what’s happening today.
Kids, young people, are buying street pressed pills, looks exactly like a Xanax, and unfortunately, it’s gonna have fentanyl in it. And part of that is honestly just lazy drug dealers who aren’t cleaning their equipment in between. So, it will get in there. But again, zero tolerance to fentanyl and you pop a pill, see ya.
And so, this is why it’s vital to have access to drug testing kits and fentanyl test strips. And we’ve been hearing a lot about xylazine, which is making its way into the drug supply as well. And there’s actually now xylazine test strips.
[00:54:08] Carole Blueweiss: Can you tell us about what xylazine is for those that don’t know?
[00:54:11] Julie Stampler: It’s actually a veterinary drug that is used for animals who are going under surgery. It’s an anesthetic, but unfortunately what it does in humans is it suppresses your breathing and knocks you out. You know, we have, in New York City, we have two sanctioned overdose prevention sites and it’s remarkable because a lot of times people are in these overdose prevention sites, they’re overdosing.
They don’t actually need to give them Narcan, they just give them oxygen and let them be. Because ultimately, it’s a supply of oxygen that ends up getting, the receptors get blocked, and you stop breathing. And so just usually it’s just oxygen in a corner is all they need.
[00:54:53] Jamie Boyle: Just to chime in for people using opioids for chronic pain or otherwise. My sister started noticing signs of oxygen deprivation that we didn’t understand was that till years later. For my sister, you know, when she would wake up, I remember her calf muscle, it was just rock hard. Signs we later found out were oxygen deprivation. You know, we knew that respiratory failure is how you die of an overdose. But, you know, adding up all those things, you know, we were in a mess.
[00:55:21] Julie Stampler: And one of the telltale signs of an overdose where fentanyl is involved is actually the chest wall becomes rigid. And the scary part about that is CPR becomes incredibly difficult. We always, we say, if you know how to do rescue breathing, add rescue breathing in.
But a lot of the times, Narcan can and should be enough depending on at what point you’ve arrived on the scene. People think when we talk about the overdose prevention centers, oh, well, you’re just giving people an opportunity to use drugs and no, actually what it’s doing is helping people stay alive.
It’s getting all of the paraphernalia, the syringes, et cetera, off the street, and it’s giving a person who uses drugs an opportunity to experience dignity and some compassion, and as a result, when they’re in this overdose prevention center because it becomes now a safe hub for them. There’s somebody there who can offer them resources for treatment, for housing, for work, right?
So as soon as we start treating people who use drugs as people, as a sister, as a mother, as a brother, giving them back their identities and taking away the horrible judgment of junkie, crackhead, dope fiend, all of that. We actually are giving people an opportunity to live. Isn’t that the point?
[00:56:49] Jamie Boyle: One thing I wanted to, I keep chiming in, sorry. Julie’s so inspiring.
[00:56:55] Julie Stampler: It’s good. It’s perfect. It’s perfect.
[00:56:57] Jamie Boyle: She’s so inspiring. Okay. No, it’s something I thought of this morning as I’ve thought of as I was, so I haven’t talked about this before, but you know, when I think about harm reduction and hear Julie talk about it, and I think about my family members, you know, our privilege, our race, our socioeconomic status. That was our harm reduction. Those reduced the harms associated with drug use for my mom and sister.
My parents were able to keep her housed. My mom was able to stay housed that kept them off the street, which means they weren’t assaulted. They didn’t get injection drug related illnesses, which can lead to a plethora of a million other harms that compound it, that make it impossible to get better.
Also, they had drugs that they knew what were in them because they were getting them from their doctors. My mom was controlling my sister’s supply and making sure she kept her drugs and doled them out. Now we were still in like very dangerous territory, but they’re alive because of those protection safeguard mechanisms they had around them that were in place until they were at a place where they felt like they could possibly combat or had the support to try to come off.
So just in thinking about that as a society, we were so lucky and so privileged in so many regards. And they’re here because of it and their own, of course, strength and resilience.
[00:58:25] Carole Blueweiss: Which is a testament to how a social community can also be so effective, which is often missing. Okay. So, the overdose prevention centers, you explained to me how that makes so much sense on all the levels that you already described and economically for the city. Can you talk about that?
[00:58:44] Julie Stampler: Here in New York City, anytime there is an overdose situation where 911 is called, not only does an ambulance show up, the police have to show up and when the police show up, there’s paperwork involved.
When an ambulance shows up, there’s paperwork involved. When the, an overdose happens at the overdose prevention center, guess what? You don’t have to call any of those people. In the year plus that they’ve been open, and they’ve saved, they’ve reversed, I want, I think it was now it’s gotta be probably close to a thousand overdoses.
I think EMS has only been called a handful of times. And those were for people who had other issues going on. But so, in the year, they opened in November of ’21, so since then, New York City has saved millions and millions of dollars in taxpayer money. 4 million bucks. That’s it. And if they’re open 24/7, imagine how much more money would be saved.
And it costs the city a lot of money. Someone dies on the street and/or if someone gets sick on the street and they’re unhoused. And they don’t have health insurance and they don’t have access to care. There are doctors in the overdose prevention center who will do wound care, who will do give you prescriptions, who, if you’ve got Hepatitis C because you’re an IV drug user, they’re gonna help put you on the regimen to cure your Hepatitis C. So ultimately, it’s a lifesaver and it’s an economic benefit to any city that they’re open in.
[01:00:22] Carole Blueweiss: That’s quite striking. Since you’ve both experienced, I want to use the word trauma, but is that a bad word to use?
[01:00:27] Julie Stampler: It’s a fair word for a lot of people, I think, and a lot of times when I talk about substance use disorder, you can usually trace it back to a trauma, whatever that trauma might be, whether it was a wisdom tooth extraction or a car accident or more sinister things. So, it is a trauma involved world. There were many instances of my brother’s substance use that absolutely were traumatic.
[01:00:57] Carole Blueweiss: For you, though.
[01:00:58] Julie Stampler: For me. For me and experiencing and having my mother call me and tell me that I, she’s about to go into one of the deepest, darkest, scariest neighborhoods in Florida to score some drugs for my brother. And I’m thinking, no, I guess I have to go with you. Terrifying! So yes, traumatic. Yeah. It’s a fair word.
[01:01:21] Carole Blueweiss: What would you like to say to people that need some help finding that? Like how did you guys actually eventually find that for yourselves?
[01:01:30] Julie Stampler: Honestly, it’s ever evolving, right? You have to allow yourself to explore what the experiences have left in you. We talked about scars earlier, right? And so sometimes I find a new one. Oh, didn’t know that experience left that mark on me. Let me look into that. So, therapy, huge proponent of therapy and I have found myself engaged in different modalities of therapy. EMDR and brain spotting of late, which has been incredibly helpful for me.
You know, dealing with post-traumatic stress related to different aspects of my childhood, but a lot of it related to my brother’s substance use disorder and, and what for a long time I considered my part in it, because that’s hard. And then there is this aspect, especially you know, for me, it’s survivor’s guilt. So, it’s trying to understand my place in the story and my place in the journey of healing.
And like I said in the beginning for me, sharing my story and being able to bring Jamie’s story, help bring Jamie’s story to light for other people, heals me every time. You know, just a little bit more. Yeah. Self-care is huge. Me carrying Narcan everywhere I go feels powerful. One of the first steps is admitting you’re powerless. I am not that anymore.
[01:03:14] Jamie Boyle: I couldn’t second everything Julie said more, especially finding your power in it and also being willing to, you know, look at the stuff that’s not so pleasant to look at. And being willing to recognize the ways it still surfaces in your life and in your soul and being, and I’m similar.
I have things I’ve adapted in adulthood that now I’ve realized on a random basis, oh, that, yeah, I wasn’t like that before. Now wait, was that becoming an adult or was that because of those years in which I became an adult? So, yeah, I think just therapy, again. The other thing is I’ve been asked this question a lot lately and I feel like I wish I had a better answer, but the only thing that comes to me is that there are no right answers.
I’ve been talking just at festivals across the country for the past year to people, family members, loved ones, even my own relatives and long-lost friends. And I hear a lot of the same questions again, and most of them are along the lines of, you know, what do I do with this person? What is the right answer? Is it tough love? Is it harm reduction? Where’s the line between enabling what they’re doing and not letting them hit rock bottom? The first thing I say is that something that was told to me and that was really helpful is that, often and sadly with where we’re at in this epidemic, rock bottom is death.
So, I don’t, I’m not a proponent of the old, traditional tough love ways. I think every individual is different though, and I think every relationship is different. So, if telling people there is no right exact way, there is no way to do this right or perfectly. Like that doesn’t exist, and trying to find that will drive you batty and it won’t make sure you are never taking care of yourself, you’re never thinking about your own wellbeing and you are just running yourself into the ground trying to figure out how to save this person or get this person back.
And there are no right answers. There’s a lot of information out there though, and it’s getting so much better, and the other thing is because so many people have dealt with this, if you start talking about it, I just keep saying talk. Talk about it. Talk to your loved ones about it. Talk to your family members, your friends.
If you can’t do that, seek out support groups. They’re everywhere and people love to talk and trade stories and it’s so healing. You never know where, not only the piece of advice that’s gonna get you through the next year is, or possibly save your loved ones, but the next thing that’s gonna buoy you or just give you that piece of healing or encouragement or something that you just need to keep finding your way through it.
But I just, for people who are in the middle of it, I just wanna affirm there’s nothing harder. And I think Julie spoke to this when she said, you know, it was almost a relief when she lost her brother because you lose them when they’re in the throes of substance use also. That is a loss. And so that trauma needs recognized and dealt with.
And also, yeah, so you are in the midst of going through a real traumatic loss while also trying to navigate a way out of it. And I think recognizing all that you’re shouldering as a loved one or a person going through this is just the first step to trying to figure out how to care for yourself. But it is very hard. It’s a very hard situation to be in.
[01:06:45] Carole Blueweiss: Well, I love that answer because as obvious, maybe as it could sound, like there’s no one right answer. It’s almost like a cliche, but I think to hear that is very soothing. As humans, we have a tendency to assume we’re, you know, especially when it’s difficult and it’s not helping that we’re somehow doing something wrong. But when things are complex, you know, it’s never gonna feel completely right. But just knowing that’s okay is very healing.
[01:07:11] Jamie Boyle: I mean, I’ll just share one other anecdote. One thing I try to tell people at festivals is, for the longest time I thought that this just constant iron fist of demanding Jordan get help, my sister get help and go to treatment, was what got her to finally go and she actually said in her interview, my mom, who was also using at the time, but insisted on just loving her through it all, on bathing her and getting her dressed and getting her fed and just wrapping her arms around her and saying, I understand, I’m here.
She was like, she was all I had. At my lowest of my low, I had her still. So we don’t know what it was or why it was that she agreed to treatment when she did, but who’s to say that it wasn’t that my mom’s love and, you know, non tough love approach kept her alive just as much, if not more so than me, because I was pushing her away and distancing her.
And that can be deadly. And things that worked for my mom, worked against Jordan, things that worked for Jordan, worked against my mom. It’s a puzzle. And anybody who tells you it’s not is just hasn’t done it.
[01:08:22] Carole Blueweiss: How forceful were you in your actions to telling your sister if you need help, you need help? Were you like, outright screaming at her to please get help or?
[01:08:33] Jamie Boyle: I was, but I was still coming around and I was still, you know, she was still housed. You know, a lot of parents will kick their kids out of the house and sometimes it’s for safety reason, a lot of times it’s for safety reasons. And so there, it would explode.
Things would explode at times and there would be a wall put down, but that never lasted, we’d always let her back in. You know, I’m the youngest of the foursome, so nobody takes me that seriously anyway. Jamie’s always mad about something or trying to stir the pot. So, they’re kind of used to it. It’s our dynamic.
And I could be screaming, and they’d all just be laughing at me. So, you know, that was part of it too, is I was adamant that she needed help, that they were addicted, but their doctors and everybody were like, stop listening to this 19-year-old in your family. She is terrified and unfounded. So that was part of it.
Yeah, so I don’t know if it’s not the same as if a parent says you need help and that kind of tough love, but it was certainly a component. I was a drumbeat in their ear, and I was terrified. It was constant. Well, you’re not gonna wake up. You’re gonna die. Like this can’t continue. Yeah, it was pretty constant for the last six months about.
[01:09:46] Carole Blueweiss: Yeah, I have this theory that there’s something about family members when they’re given advice by other family members, it goes into another part of the brain. It doesn’t go into the part where you’re actually listening and considering the advice.
[01:10:00] Julie Stampler: I concur.
[01:10:05] Jamie Boyle: And I’m sure even more so if it’s a younger sibling, it’s just like in one ear, out the other. Yeah. Which I think is why I screamed all the louder. But yeah, I’m not sure. I’m not sure that’s what did it. In fact, I’m pretty sure it’s not. But it’s all I, it’s all I knew at the time. Thankfully, now we have people like you both and a lot more information about what works and what doesn’t or what’s more likely, I should say, to work and what’s less likely to work.
[01:10:37] Carole Blueweiss: And if people want to watch the film, tell us how, when, where.
[01:10:42] Jamie Boyle: Yes. So, it will be starting at IFC Center, June 2nd in New York City. That will be running the 2nd through the 8th. And we will have a bunch of special panels and guests, including Julie and the fantastic array of experts and advocates she brings with her.
There will be resource handouts, like we said, so definitely go to our website, AnonymousSister.com and all, everything will be listed there. We’re also on social media, which can all be found on our website. And it will be in LA starting June 16th for a week, and with a lot more cities to follow. We’re booking those now.
And then in September, it will be available for rent on a variety of platforms. I think iTunes, Amazon, Apple Play, and, but we will keep those updated, but basically available to rent starting this fall.
[01:11:34] Carole Blueweiss: We will have in the show notes your website for anonymoussister.com and other resources. I want to thank you both so much for coming on and talking about this pretty serious heavy topic, but one that’s important to talk about.
[01:11:50] Jamie Boyle: Yeah, thank you so much, Carole, I so appreciate you talking about it. I was really heartened by the conversations that you’re having and I’m really grateful to be here and to be here with Julie. I think it’s so valuable. I know I second Julie in that regard, but yeah, talking about it in this way, especially, I think we’re talking a lot about the wrongdoing on the part of big Pharma, thankfully. But yeah, just the conversations between friends and family members, we definitely don’t get enough. I’m really happy to be here. You know, it’s the same reasons I made the film and those stories saved me and my family members, so thank you for this podcast.
[01:12:31] Carole Blueweiss: If you are in New York or LA, don’t miss seeing the documentary Anonymous Sister directed by Jamie Boyle, which will be showing at the IFC Center in New York City from June 2nd through June 8th, and then in Los Angeles from June 16th to the 22nd.
Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.
Melissa Conrey shares her story of living with drug and alcohol addiction and now, sobriety. A single mom of two, she worries about her children who have been exposed to so much. She went back to school to earn her degrees and is now a registered dietician. Melissa speaks openly about her challenges and her victories.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/yTUuE_L-L8g
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[00:00:00] Melissa: The best thing that I can do is to show up for him today as best as I can. Just be a role model. Show him what it looks like to be a sober person and he can choose to go this path or not. He’s gotta do his own journey.
[00:00:22] Carole: Welcome to Wisdom Shared, where parents are the experts and where connection inspires change. My name is Carole Blueweiss, and I am your host. And today, I have as my special guest Melissa Conrey. She is a single mother of two, an anti-diet registered dietician, nutritionist, and a certified intuitive eating coach.
She’s also a proud member of a roller derby team in California. Melissa has struggled most of her life with alcohol and drug addiction, and in this episode, Melissa shares her reflections and memories while she looks back at what it was like to raise a family while managing her own addictions. It was the fear of losing her kids that really prompted her to seek help and to work her way to sobriety.
I met Noah, Melissa’s son, in Alaska last summer where he was the guide at an ATV company and he said, “wow, you know, my mother has a great story. I had challenges growing up, and she would be a great person to interview.” A couple of months later, I got a text from Noah saying that his mother was interested, and that’s how I met Melissa, Noah’s mom.
I’d like to welcome you to Wisdom Shared, Melissa, thanks for coming on.
[00:01:46] Melissa: Thank you for having me.
[00:01:48] Carole: I usually start the interview with a question, and that is what is a childhood memory that sticks with you today?
[00:01:55] Melissa: I have a really big family and a very close family, so there was a lot of cousins and aunts and family members around. Three brothers that I grew up with, and I have a half-brother that I got later in life, and also a step-brother and a lot of cousins that were always around.
Our family’s very tight. We went to the beach a lot and camping and had picnics and going to the park and all kinds of fun stuff. I think just in general, I had a pretty fun childhood. A lot of people around having a good time.
[00:02:26] Carole: Do you have big Christmases?
[00:02:28] Melissa: We do, yeah. We don’t have a lot of small kids anymore for Easter, but Christmas and Thanksgiving are pretty special. My mom really tries to keep us together that way.
[00:02:38] Carole: How old is your mom?
[00:02:40] Melissa: I think she’s 70 now.
[00:02:41] Carole: She’s a young grandma.
[00:02:43] Melissa: Yes. I was 19 when I had my daughter. Yeah. I call my mom their baby daddy because they would take them for holidays. They love their Nana.
[00:02:56] Carole: Tell me about your children.
[00:02:57] Melissa: I have the two kids and I had my daughter first. Her name is Jamie, and then I had Noah three years later. Jamie’s 29, Noah’s 26. And I love them very much.
[00:03:14] Carole: I asked Melissa why she said yes to speaking with a complete stranger that her son had met randomly in the mountains of Alaska.
[00:03:21] Melissa: I said yes because I hope that this experience bonds Noah and I a little bit more and brings us a little closer with a little better understanding of each other. And beyond that, I’m hoping that somebody else will relate to our story.
[00:03:34] Carole: You know, I started off thinking that my audience were people that had challenges, which is most of the population.
[00:03:41] Melissa: Yeah.
[00:03:43] Carole: And that people who have gone through challenges, especially with their children, talk more about their children than themselves. A lot of the lessons that you’ve experienced with yourself and then with your son, with Noah, overlap, which makes it a little bit more complex because we’re talking about two people that have had very clear challenges. Tell us a little bit about your challenges.
[00:04:08] Melissa: So the challenge is addiction, alcoholism, and Noah shows signs of facing those same challenges. There’s so many people in my family who are addicts. Their dad is a drug addict, and he was out of their lives when Noah was a baby. I’ve partied a lot and it’s just so easy to get caught up and to start to spiral.
You think of an alcoholic as somebody who is in the gutters and is like a particular type of person, but we are one of those families that you wouldn’t necessarily expect to, you know, be struggling so much with drugs and alcohol the way that we do. Noah, for a long time, him and my daughter bonded and they took care of each other and didn’t rely on me, and they distanced themselves from me and excluded me from their lives.
Through it all, I’ve always thought I was prioritizing them, but thankfully with sobriety, I realized that there was a lot of times, obviously, that I wasn’t. When you get sober, you hope that everyone just notices and everyone finally forgives you and they just believe you that you’re gonna be better and it takes a very long time.
But luckily, we have a really great family. My sobriety date is October 1st, 2018. I am very proud to say that now. There was a while when it was very difficult and it makes me even more grateful for that date that Noah had so many nice things to say to you about me, because it wouldn’t have been like that a while ago.
And for me, it didn’t get better right away. We didn’t get closer right away and things didn’t magically get fixed right away or even in a timely manner that I would’ve preferred. It has taken a whole lot more time for my kids to trust me and to start to rely on me again. And to open up.
[00:05:52] Carole: What was your relationship like before you stopped drinking? What are your memories of being with your kids?
[00:05:57] Melissa: The strain happened pretty early on, and then as my kids became teenagers, they acted out even more and more. And so there was big fights and there was a lot of disrespect. There was a lot of turmoil in our house and I was able to excuse that away before I wanted to admit that I was an alcoholic to me being a single mom and me going to school and working at the same time, and me having a lot of burden of responsibility to raise these kids and do the best that I can do.
So I was gone a lot. I just had a lot of pressure and the kids were saying, you drink too much. I want you home. I want you to be, in so many words, they were telling me, I want you to be present as a mom.
And I really felt like I was doing a good job. And so as they became teenagers and they got even more rebellious and mean, and we fought a whole lot more, I attributed that to them being teenagers. And that’s just the way that it goes. But then Noah moved out when he was 19 and he moved to Hawaii.
So I didn’t see him a whole lot for the next four years. I went and visited him twice and then he went to Washington and then to Alaska. So he’s been doing a lot of moving around, and during that time, some of the healing has happened because of the distance between us. There’s still work to do, I think, because now he’s actually around me a whole lot more.
[00:07:24] Carole: What helped you get through your addiction?
[00:07:27] Melissa: It took a long time for me to even admit that I might have a problem. So looking back, what really helped is that for one thing, people didn’t give up on either being honest with me or being very supportive and loving and trying their best to guide me. I always felt loved.
I always felt important, and I always felt like I could be doing better. And even though I wasn’t living up to that potential, that message was in my head because that’s what I was told. I guess the takeaway message that I would hope to get out there is that, for one thing, addiction, alcoholism, I think that it touches everybody.
It really does. Anybody, anywhere, anytime. And I feel like that’s something that might be accepted and people are like open to really understand that. But the other side of that is that recovery also works. It also happens and it can happen to anyone, anywhere, anytime as well. And so I’m not probably a person you would look at and think, oh, she is an alcoholic or an addict because I don’t have that lifestyle of the people that you see in movies, where they end up in the streets and they end up losing everything in their life. They lose their children and all that stuff. I didn’t have to go through those things, but I definitely did have the -ism. I definitely had the addiction. I had some really serious repercussions in my life because of it.
But my life has changed and I am in recovery and I am recovered in so many ways, and I want that message to be really heard that you don’t give up. My family never gave up on me. My friends never gave up on me. The people who love me never gave up trying to support me and still help out. Once I was able to admit that I had a problem because nobody gave up on me and because people still believed I could make it through, that definitely planted all of those seeds that grow still today.
That’s what helped. Once I was able to admit that I had a problem, those little seeds started to grow and they still do. And that’s something that I would really want to express. As a person who is going through it, I would want people to hear that, but also as a parent, because now I have to watch my son battle the same issue.
And I have faith that the things that I say and do now matter and as much as I can sit around and regret the things that he saw or had to put up with when he was younger, when I was still actively an alcoholic and an addict, now I get to make amends with my actions, and I have over three years of sobriety and those changes in our relationship are happening because he can see me as somebody he can trust now. He sees me as somebody he can look up to. He sees me as somebody that matters in his life, not somebody he wants to keep out of his life.
[00:10:23] Carole: You used the word addict, is that the same thing as the alcohol or is that a separate addiction?
[00:10:29] Melissa: I think it’s the same thing. I don’t really know anybody who only drinks, so I don’t think alcoholics are exclusively alcoholic or just drinking alcohol or just an alcoholic. For me, I’m both.
And I did a lot of drugs and I tapered those off as my kids got older. And to me, that was a success. That was another justification of how come I shouldn’t give up drinking. I already quit doing meth. Why do I have to give that up too? Everyone else is doing it, but I was able to quit all the drugs. Mostly. Except recreationally. I go to AA now, I’m in the 12-step program.
[00:11:05] Carole: Do you have memories of what got you started the very first time?
[00:11:09] Melissa: You know what’s funny is I think about that sometimes, and the first time I got drunk was when I was, the summer that I was gonna turn 13. I was with my aunt and uncle and my cousin and they were partying and we were drinking wine coolers and Coors Light.
And my cousin, who is very close in age to me, she is the closest thing I had to a sister. We got drunk and it was super fun and we ended up throwing up and getting in a fight and it was just being stupid. And what’s funny to me is the year before that her dad was growing weed in their backyard and her and I were out there picking the weed and throwing it over the fence – “drugs are bad!”
I don’t know what changed. The next year we were like, we may as well smoke some weed and then start doing meth. And then start experimenting with drugs. So by the time I was 15, I had already been doing all these things and I don’t remember the first for a lot of other things but I do remember the first time I got drunk
[00:11:58] Carole: And the friends of yours that you did the drugs with, do you keep in touch with them? Are they okay? Did they take the same path that you did?
[00:12:07] Melissa: Let’s see. I started at such a young age. No, I’m not really friends with a whole lot of people that I can remember from back then. I have actually two friends that were my best friends from that age.
One of them partied like I did. The other one really never did. Everyone thought she did, but she did not. We stayed friends for all those years and the other one just cleaned up her act and she, I don’t think that she was an addict, alcoholic like I am. Not everybody is. Some people just party and eventually grow out of it and some people are, have the -ism.
[00:12:39] Carole: Just to stay in your childhood for a moment, just to try to understand, cuz it’s an interesting perspective, you being older now and you having had turnaround. For parents out there that might have kids that are experimenting and that are doing some partying at a younger age, it sounds like from what you’ve said, that it can be harmless and it could be harmful. It really depends on the person. It’s not necessarily, oh, you tried something young, you’re gonna become an addict.
[00:13:04] Melissa: Right.
[00:13:05] Carole: But you could. So what do you have to say to parents whose children are experimenting and being like the kid that you were?
[00:13:15] Melissa: That is a tough one because it’s hard to say what’s gonna turn into a full-blown addiction and what’s just the experimenting. I don’t really know if I have a clear answer for that because we were doing so much. I overdosed when I was 16 and ended up in rehab for three months and as soon as I got out, I started drinking and doing drugs as soon as I could get to ’em. I guess that is eyeopening. If your kids go to rehab, like that should be a red flag right there.
The rest of it, I worried about my kids every single day, and my friends who were still friends with me from that time were like, remember what we were doing at that age? And I’m like, I know, I’m gonna put them on lock and key. They’re not gonna do anything. And of course they do.
I didn’t have any healthy way of really monitoring that, especially since I was still drinking during that time that my kids were teenagers and starting to experiment on their own. Yeah. I’m not sure if that answers your question, but.
[00:14:11] Carole: Yeah, it does. I’m gonna go with my curious mind here and wonder if you often see on tv or you read books or you hear stories about people who become addicted, who had really hard childhoods or difficulty with their parents. But it doesn’t sound like that was for you something that was taken into consideration. It’s more you, superficially anyway, you were with your friends who were doing it. If they weren’t doing it, maybe you wouldn’t do it. Is that fair to say? Or is it more complex than that?
[00:14:47] Melissa: Yeah, I think when I went to rehab, the counselors were like, “oh, your parents got a divorce. You must be so sad.” And I was like, “no. That was actually the best thing ever.” They were looking for excuses of an unhappy childhood of why I would be deep into doing drugs at that age. And I couldn’t come up with any answers then, and I can’t come up with any answers now. I really liked it. I really enjoyed it. I really wanted to party and I thought that I knew what I was doing.
And I think you’re right. We do expect a person who becomes addicted to have all these traumas in their life and these reasons why they might be driven to that, but sometimes there isn’t that trauma. And there’s certainly unhappy things in my childhood, my parents fought all the time and I feel like I was an anxious child, and I think that might have been part of the reason why, because they were always fighting. It was a very tense environment between them. So I was very happy when they got a divorce because they both went their separate ways and we got a little more spoiled.
But I carried that anxiety around. And not to blame your parents, but these are just some of the things that created who I am and I don’t think that there was really any significant traumatic event in my life that I needed to run away from or hide from in the way that you can see it in these documentaries.
I was just like a regular kid going through some regular problems. But I come from a family of addicts, I come from family with history of that. And if I were to guess, that would probably be the biggest factor.
[00:16:15] Carole: Tell me more about that.
[00:16:16] Melissa: On both sides, my mom and my dad’s side, there’s addicts, there’s drug addiction, alcoholism on both sides. Neither of my parents necessarily would, I think, be considered that. My mom probably drinks a lot more than others, but she’s also now 70. And I always thought that I would grow out of it like her. Now she’ll have one margarita and she’s, “oh, I might be a little tipsy.” I’m like, who are you? That’s not the mom I remember. When do I get to be like that?
And my dad just always didn’t ever get outta control that I saw. He would like a whiskey after work or some beer and that was nice too. Sometimes we could have a sip of his whiskey or tequila or something. I just liked it. But my dad’s twin brother died from drug addiction. And on my mom’s side, some of her family members are recovered or yeah, most of them, they’re recovered.
And I tell my kids that too, cuz their dad’s a drug addict and that’s what I worry about for them. You come from that, be careful what you do. And that’s what I used to tell Noah too. When I saw that he was struggling, I guess I just wanted to let him know, it’s not your fault, this is where you come from and there’s a chance that you might take this too far.
[00:17:24] Carole: Do you remember when you said to yourself, oh, Noah’s not okay, or he might need some help or?
[00:17:33] Melissa: Yeah, both my kids started smoking weed when they were teenagers, and that was problematic for me just cuz I was worried, but it didn’t seem like a major deal. I didn’t see any major problems. Like I said, Noah didn’t live here, he lived outta state for all the last several years. And so I didn’t see him on a daily basis, and I don’t know if he was struggling before, but he came home in 2020 because he broke his back in Washington snowboarding and he had to come home.
He was living in Hawaii, his home was Hawaii. He was working a seasonal job in Washington and I live in California. So for him to come to a safe place to recover, he came back to my house and still had a place in Hawaii. But then Covid happened like the next two weeks. And so he was basically on lockdown and it was really hard to get him into a doctor’s appointment.
It was really hard to get him any kind of care, and they prescribed him some painkillers cuz he had a broken back and he wasn’t able to fill his prescription because there was no, I think we were able to get him Medi-Cal. But anyways, it was a real hassle. And so he says that he had to buy the pills from people that he knows.
And that is really when I saw a lot of problems. That is when I saw behavior changes, and that was when I was really scared for him and I didn’t know if this was already going on for him or if this really did start with him breaking his back. I asked him the other day, though, after we talked and he said that it really did escalate at that point because he didn’t have an option to get pills where he did. He got them off the streets and he didn’t really have care and he went too far.
[00:19:17] Carole: Well it certainly didn’t help.
[00:19:20] Melissa: Yeah.
[00:19:20] Carole: If you’re in pain and, huh.
[00:19:25] Melissa: Yeah. And that’s what he has been struggling with for the last couple of years, since that happened. And so he says now that he’s done with that, but we’re not out of the woods. We’re not, it’s, and I know that, but going back to my recovery, I also know that he can be okay and that recovery is possible and that the best thing that I can do is to show up for him today as best as I can and just be a role model. Model what I show him what it looks like to be a sober person and he can choose to go this path or not. He’s gotta do his own journey.
[00:20:09] Carole: And he has your example, he has his father’s example, so he knows what can happen if you don’t take the other road.
[00:20:19] Melissa: Yes. Yes, he definitely does.
[00:20:23] Carole: And I felt his wisdom, you know, when I was sitting next to him and he was talking. What is the relationship between Noah and his sister?
[00:20:35] Melissa: Oh, it’s incredible. I am so proud of them. So him and his sister are like best friends. They are, they’re best friends, and they’re bonded, and they really do watch out for each other and take care of each other. And it makes me proud because that’s the kind of upbringing I had.
And I feel like my mom, my parents, passed that on to us and we’ve passed that on to them. And I love seeing that. I already know that it’s an unbreakable bond because I have that with my brothers too. And I know they’re never alone. They have each other forever. It’s comforting.
[00:21:09] Carole: I assume after you became sober, you followed more your dream. I don’t wanna put words into your mouth, but why don’t you tell us what you were doing before and what you’re doing now.
[00:21:21] Melissa: Well, I’m very proud of my career trajectory.
[00:21:25] Carole: Tell us about it.
[00:21:26] Melissa: I was already going back to school and trying to change careers, but I am now a dietician. I passed my dietetics exam in March of this year. I was able to do my internship last year and I’m working as a clinical dietician at a hospital locally. I was a bartender for many years, which is a fantastic and fun job, and I absolutely love it. I actually still do it because the hotel I work for has asked me to still pick up shifts for banquets since they’re still short staffed and I’m like, okay.
So I work a couple times a month and, but yeah, it’s very different and I went back to school in 2016. I was able to get into Cal Poly. I was really proud of that. And then after I graduated, I struggled to get into an internship and I don’t know if I still would’ve made it through if I hadn’t gotten sober.
But I can tell you that I made it through at a much higher level and in a way that I’m so much more proud of myself because I am sober doing it. I’m able to show up every day. I don’t go to work worried about smelling like alcohol. I don’t worry about if it’s money that I’ve spent or the people that I’ve offended.
I was able to show up to all of the early shifts during the internship and go to all these different rotations and everybody had good things to say about me. I didn’t have to turn in work late. I didn’t have to make excuses for why I didn’t show up. Any of those things that came along with my behavior before, which probably held me back from getting into my internship before that.
[00:22:56] Carole: So when you were going through your undergraduate years, were you drinking a lot?
[00:23:00] Melissa: I thought I would go to college after high school. I graduated from high school when I was 17 cause I’m born in the summer and I met a guy and immediately – their dad – took off, wanted to party for a year and got pregnant.
And so college was definitely put on the back burner. Went back to college later and got my associate’s degree. And struggled through that and then waited several more years and then went back to school for my bachelor’s degree. I retook a lot of classes and I made a lot of excuses and I had conversations with teachers and had a sob story about why this and why that.
And I turned in work that was subpar. And when I got into Cal Poly, it really showed. For my bachelor’s degree, thinking that I was going to just jump right in cuz I’m older and so much wiser than everybody else. But no, not at all. I had to learn the hard way that I have to learn how to use a computer, having to retain all of this information. It’s really difficult when you’re also like drinking all night long and you’re learning something new in a totally new environment.
[00:24:03] Carole: Yeah. And also you had your daughter. You had young children. I don’t know if your husband was an active addict at that time.
[00:24:13] Melissa: Oh, we were never married and he was always an addict. He was not around to help.
[00:24:17] Carole: You were going back to school. That’s pretty amazing.
[00:24:22] Melissa: Yeah, single mom. Doing it, working restaurant work, which is why I loved it so much. You can work, it’s flexible, you make good money in the short amount of time, so going to school part-time, working basically full-time, raising the kids full-time, and it was definitely a big challenge.
But I did that and that’s where the big family comes in handy. They were always very supportive. My mom had moved up here, up to San Luis Obispo when my kids were very young, and if I needed money for sports or for any kind of activity they wanted, she would pay for it. And she didn’t have a lot of money either. She was struggling. My mom will do anything for her kids or just about anybody. There’s a lot of generosity there.
[00:25:01] Carole: Did you have any connection with her when you were getting off of all the drugs and alcohol?
[00:25:05] Melissa: We have an interesting relationship. We have this mother daughter dynamic that should be really sweet at this age, but it’s just not yet. And we butt heads a lot. So we don’t do well being in the same place for a long time, but I know that she loves me and I love her very much. And there’s a little bit of distance between us, but as far as like being there, she was there with the kids.
She was one of the ones who was very truthful with me all the time, sometimes very critical, and I felt like she was just being very judgmental and she would tell me that I was doing the wrong thing, and she would tell me that I wasn’t taking care of my kids and I wasn’t being a good mom.
And she would tell me that I’m partying too much and all this stuff. And I would just tell her, she she doesn’t know what she’s talking about cuz she doesn’t live near me. She doesn’t know my life and all this stuff and, but I look back on those things and I think she was right. She was right. She saw how I was living. She saw how the kids were so sad. She saw how much I was missing out on. She was right.
[00:26:01] Carole: Do you remember when the time was, like you said, I’m not doing this anymore. I’m gonna stop, I’m gonna change.
[00:26:07] Melissa: How I finally got sober? Yeah, I had turned in my first application to my internship that I wanted to get into, and I had been trying so hard for so long to live a healthier lifestyle. I picked up a sport. I hike. I do all these different activities. I went back to school, learned about nutrition. A lot of times my nutrition questions had to do with how drugs and alcohol affect your body and what metabolism has to do with that. If you take the supplement, do you get less drunk? Just wondering if that’s a thing.
[00:26:41] Carole: Can you explain that to someone who’s quite ignorant?
[00:26:44] Melissa: There’s just all these myths about if you take, I think the one was you can take like a baker’s yeast and it will break down the alcohol in your stomach before it gets absorbed into your bloodstream and then you won’t get as drunk. That’s, it’s not, I don’t think it’s true. It never worked for me. Probably just drink less. But college kids probably ask a lot of questions like that. I was an adult in college asking questions like that, so that’s problematic. Another red flag that I refused to look at.
There were a lot of things like that, and there were just so many moments when my kids had asked me to stop drinking. Noah had asked me, he had made me sign a contract before. And so I would quit for a month or two months and then they wouldn’t notice. And so I’d be like, what’s the point? There’s all these different things that would sit in my mind. And so I wanted to change my life and be healthier, eat well, take care of myself, do the right thing.
And then I had this dual life though, cuz then on the flip side, I’m like smoking cigarettes and drinking. I binge drink. I didn’t drink every day. That was the other tricky thing is that I was never like an everyday drinker. I’m a binge drinker. And so to me that was success. I would go a three or four or five days with doing all the hard work that I do. And then so what if I party for two or three days? And not every week, but at least every other week. It was really hard to keep that up.
And it wasn’t cute and it wasn’t fun, and nobody really wanted to hang out with me anymore. And it stopped being fun a long time ago. And so the defining moment was when I turned in my application for my internship that I had worked so hard towards and I was already drunk when I was sending it.
And I had forgotten to send my, I think, one of my transcripts. And so that was like a panic moment and I thought that I didn’t have one of my letters of recommendation in, and there was like so much panic behind this super important moment, why wasn’t I prepared? So that was really eye-opening.
And then I spent the next seven days getting super wasted, calling into work and not showing up. And after the seventh day, I was like, I just can’t do this anymore. And I had a therapist at that time who had already told me I was an alcoholic on the first day that I met him. And I was like, you’re wrong. I’ll show you. You’re wrong.
And so for, I’d been seeing him for months and so finally I was like, maybe I’ll give this program a shot. I’ll go to a meeting. I’d been to meetings before cuz I’ve had DUIs and I’ve had to go. But, I’ve been arrested, so I’ve had to go. I’ve gotten the nudge from the judge before. But this time I was like, I’m just gonna go because what else can I do?
And for whatever reason, I sat down and I read this thing that they handed to me and I listened to what they had to say and I cried and I just heard my story in what these women were saying. I went to a women’s meeting and I heard my story, and I heard this wasn’t a bunch of old drunk men is what I thought AA was all about.
I actually saw myself reflected in what was going on there, and I really felt like I was right where I belonged and so I wasn’t ready to admit I was an alcoholic, but it felt right being there. And so I came back and that’s what I mean by recovery happens and not ever to give up because you just never know when it’s just gonna hit just right at some point. Something that is said really resonates, and for me it was just that moment.
[00:30:00] Carole: I wonder what is your take on labels? Like the idea that you couldn’t identify with the word alcoholic, and maybe that’s a lot of times gets in the way that it’s a label as opposed to that inner revelation yourself. That’s, the way you describe it is more poetic. That it’s not a word that you were, it was something much more complex, not a word.
[00:30:26] Melissa: Yeah, I think the label itself, the alcoholic label, has so much shame attached to it, and so you feel worthless and you get this, at least I got this image of somebody living in a gutter, just some homeless person who just doesn’t care about themselves.
And also it meant giving up anything fun. Like alcoholics are miserable and just sad for their lives, and that’s just not the way that it is. How do you get around labels? We do this all the time, all day long. We label things and we put them in boxes and that’s how we know how to react to them, I think.
But that was a struggle. Once I was able to get past the label of being an alcoholic, I am proud to say it. I am so relieved. I’m so much happier now than I have been in years. I have that childhood enjoyment of my every day, of the sun rises and I have gratitude first thing in the morning, and that’s something that I hadn’t felt in forever and it feels so good to be able to do that again. And I wish the label didn’t deter people, but I get it. It does. Can I tell you about the first time I proudly said I was an alcoholic?
[00:31:30] Carole: Tell me.
[00:31:31] Melissa: Besides in the meetings, I started to accept it, but one day I was with a group of friends. I play roller derby. I don’t think I mentioned that. That’s my sport that I took up. And it’s super fun. I went out with the team afterwards and everybody, usually, most people who drink usually drink and I used to as well after the games. And I went out and they were like, hey, Muerte is my name. Do you want a glass of wine? You want a beer? And I was like, no, thank you. I don’t drink. I’m an alcoholic. And they were like, oh, okay, cool. And just moved on. And I was like, yeah. And I just wanted to say it again. I was like, yeah, I’m an alcoholic. I don’t drink anymore. And they were like, yeah, okay. And moved on. But it felt so good to me. It felt so empowering and I felt like now it’s a label that I can wear proudly.
I’m a derby girl, I’m a mom, I’m an alcoholic. I’m all these things that have made me who I am. And being an alcoholic has given me a lot of freedom. Now I get to be in those situations and just be like, oh no, thanks. I’m an alcoholic.
[00:32:32] Carole: My knowledge of roller derby is what I saw on tv. Maybe it was a movie. Maybe it used to be on as a sport when I was young.
[00:32:39] Male Announcer Voice: [crowd sounds at derby bout] Good teamwork by those devil girls.
[00:32:41] Carole: It’s very vague to me. So I remember women going around and around on these skates, like pushing and punching.
[00:32:50] Melissa: Your memory is accurate. Yes. Roller derby started out as not necessarily a sport, I can’t remember why, but it evolved into being like wrestling, very fake, very put on, and then it died out for a while and it has made a resurgence and it actually is a sport.
It has rules. It’s like football on skates, full body contact. And that is how you get around the track. And I’m not on a banked track. What you remember is a banked track. We have a flat track and we skate at a hockey rink, but you’re not allowed to punch anybody. You can hip check ’em and you can hip check ’em hard.
[00:33:28] Carole: What’s the object? What are you trying to do?
[00:33:31] Melissa: So there’s one skater and that’s called a jammer. And then there are four other skaters and they’re called blockers. And that’s your team. Your jammer is trying to skate around the track. And get through the wall of blockers on the other team, and you get a point for every person that you pass, and you all have to stay within a certain distance from each other.
You can’t just skate all over the place. You have to be within a certain distance. And then that jammer will skate around and get through, skate around, hopefully get through again, just get more points.
[00:34:00] Carole: The same person.
[00:34:00] Melissa: The same jammer, and there’s jammers on both teams. And so those blockers are blocking the other jammer at the same time as you’re trying to get your jammer through. There’s quite a few things going on. There’s no ball.
[00:34:13] Carole: There’s no ball, just your body.
[00:34:16] Melissa: There’s some people on my team who get really all dressed up and you can wear whatever you want. We all wear the same jersey. And then beyond that, we wear, a lot of times we wear booty shorts and fish nets if you want to. Otherwise, some skaters aren’t comfortable in that, so they wear like their capris or full leggings. But definitely some fun stuff.
[00:34:35] Carole: Now, you didn’t do this while you were under the influence, did you?
[00:34:37] Melissa: Skated under the influence? No way, no way. That would be death. I’ve skated super hungover though, and I’ve gone to practice too drunk to skate. I wasn’t allowed. Actually, I got the nickname, I think it was Drunk Thursday. Oh my gosh. Now I can’t remember it. My friend, it was a Beastie Boys song and it was a Thursday night practice and I was so drunk and so she was saying drunk on a Thursday.
[00:35:02] Carole: You get nicknames?
[00:35:04] Melissa: Yes. Yeah, your derby name.
[00:35:06] Carole: What’s your derby name?
[00:35:07] Melissa: Mine is Miel Muerte.
[00:35:11] Carole: Dead Honey?
[00:35:12] Melissa: Honey Death.
[00:35:14] Carole: Honey Death. Is there a reason you got that name?
[00:35:19] Melissa: Yeah. Well, I chose it, but my name’s Melissa and that means honeybee. And I wanted something honey, and people call me Mel, which was close to Miel, and the full name should have been like Miel de la Muerte or something like that, but it was too long, so I just shortened it. I liked the alliteration. It’s sweet and scary.
[00:35:39] Carole: Love it. First of all, for sure, you don’t speak for all addicts and for all alcoholics, so clearly this is just your story. For you being a bartender, you are, as you said, an alcoholic. I don’t hear many bartenders announcing that they’re alcoholics. I could see you doing that, but usually, maybe this is a stereotype or it’s wrong logic on my part that you just don’t wanna be around alcohol because you don’t wanna get tempted. Can you just try to interpret what I’m trying to ask you?
[00:36:09] Melissa: Yes, I can definitely say that it was highly recommended that I quit my job. [laughs] See, and I thought it was funny too, cuz I make good money and I was like, I’m not quitting my job. I will make this work and I did.
[00:36:28] Carole: Good for you. There you go. There’s the rules are just out the window. That’s refreshing to hear. I don’t think you hear these stories very often, like the messiness of it.
[00:36:36] Melissa: Yeah. I’m a sober bartender. I have a really great sponsor and I went to a lot of meetings in the beginning, and I always tell people too, I think that it’s a little easier for me because being at work isn’t necessarily a trigger. Cuz I didn’t actively drink at work. I would drink before work sometimes, or be at work and be so hungover, but I never actively drank at work.
[00:36:58] Carole: What do you do to take care of yourself?
[00:36:59] Melissa: I actually have gotten pretty good about some self-care. I am pretty active. I’ve taken up surfing and I play derby and I love to hike and I journal. I stay in contact with my sponsor. My best friend is also in the program, and so we go out to dinner together and I have a good social life, some really good girlfriends in my life and I stay busy. I love staying busy. It makes me happy.
[00:37:23] Carole: If you could tell Noah anything right now with where you are in life, what would you want him to hear?
[00:37:34] Melissa: Oh, my baby. Oh man. I just, I want him, oh man. I want him to hear that he is so special. You’re so special. You’re so amazing. Such a great person. I would like to make sure that he knows how loved he is and I think that he’s got these amazing qualities.
He is so adventurous and curious and fearless these days. He’s always out exploring. It’s my obligation, I think, to tell him to also be careful because all of these things and all the partying that he’s doing can be fun, but it also lends yourself to being in these certain situations and he’s already dealing with the bad repercussions of addiction and alcoholism, drug use and abuse and even though in life we can’t avoid all of these things, but these things can definitely be tempered just by being careful and I just want Noah to think about that. To be a little bit more careful and to nurture those things that are so amazing with himself. But to nurture the kindness.
[00:38:40] Carole: You want him to hear your motherly loving advice?
[00:38:45] Melissa: Yeah, I do because he is me and I can see that a lot. I see his behaviors are identical to me. If I hadn’t had kids at such a young age, I would’ve been out gallivanting around. Before I got pregnant, I was up in Sequoia working a seasonal job with their dad, and that was the first time I’d heard about jobs like that.
I was like, I wanna do that. And now that Noah is doing those things, I’m like, oh, he’s reliving the life that I didn’t live. But then he’s also very much the same personality as me, and I see him struggling with drugs and all that stuff in the same ways that I did. And looking back, as his mom, I know that I can’t tell him anything and he’s just gonna listen.
But like I was saying before, I know that at least I’m saying these things and if nobody else says it, at least I do. I want him to be somewhat careful. As careful as you can be. I don’t know if he, you’ve talked to him since he got home or since you saw him last, but he actually overdosed on Fentanyl while he was in Alaska, so it’s been really scary and it’s like my worst nightmare.
Thankfully, he seems to have really taken it seriously. While he was in Alaska, I knew he was struggling with pills and drugs and stuff, but I didn’t know to what extent. He, of course, would tell me everything is fine. There’s always signs and I know that I couldn’t confront him or force him to tell me anything until he finally overdosed.
And so with that has come a whole lot of openness and honesty and he seemed to have been really shook by that whole situation. When he went to Alaska, though, he seemed to be staying sober while he was out there and getting away from the pills and all that stuff that was around here. And then his friend came to visit and brought Percocets and I guess they were laced with Fentanyl, so his tolerance was down.
And so when he took the pill that he normally takes, this time, he overdosed. And that at the hospital they told me that it was pretty common for Percocets and Xanax to be laced with Fentanyl. They said those are the two that they see a lot and they said they had I think something like four other overdoses recently and they didn’t all live.
[00:41:04] Carole: Any advice to parents?
[00:41:07] Melissa: No matter how old your kids are, how you show up for them and what you say to them really, they’re still listening and I feel like I would want any parent to know that as well. Whether you’ve gotten sober or not, what you say matters and how you show up matters and you might know that already, but you might not really, really feel it. I feel it these days.
[00:41:26] Carole: What do you wish you knew then that you know now?
[00:41:30] Melissa: When I was doing all the things that I was doing, I was so arrogant and I felt like I went into decisions knowing everything about it and not caring. Doing as many drugs as I did, and taking the kids into places they shouldn’t have been.
I felt like I did that with intention and ugh, if I could just go back and slap the girl , oh my gosh. Yeah. Ugh. That arrogance. I regret that. I regret just feeling so, so sure of myself and being so selfish. I would do that over again.
[00:42:01] Carole: What would you like to be doing in the future?
[00:42:04] Melissa: I am working right now as a clinical dietician. But my longer term goal is to do my own private practice and practicing health at every size, practicing trauma-informed nutrition, and being like an anti-diet dietician where, you know, not just in the private sector, but in the schools, and in just in our community altogether, I feel like we are very weight centric and I wanna move away from that.
That’s what I’ve been exploring and a lot of that gentleness and kindness and personal growth and having more empathy and compassion towards others I feel like really developed through doing my step work and a lot of personal work with myself. And so I decided that my private practice name will be Simply Me RD, because I am just me.
I’m here sober. I’m here as an anti-diet dietician. I’m here just as me, every little imperfection or whatever that I have, it’s, that’s me. I wanna meet everybody where they’re at, and I want them to feel like they could be them too.
[00:43:12] Carole: Thank you, Melissa. You’re talking to a complete stranger through a screen. From one end of the country to the other, for other people to hear that you’ve never met before. I can’t thank you enough for sharing your story.
[00:43:25] Melissa: You’re welcome. And I wanna thank you for having me on and I enjoyed listening to your other episodes. I think the podcast that you have out here is a really special one too, and I’m sure your listeners are very grateful for what you’re putting out there.
[00:43:39] Carole: Thank you so much.
I learned so much from Melissa about addiction, sobriety, and then what can happen when you reach out for help. It’s never too late. Melissa makes it clear how addiction is way more complex and multifaceted than we are led to believe. We all have addictions in one way or another. I know I’m addicted to my cell phone.
It’s a huge topic. And in the media, we hear a lot about the drugs and the alcohol addiction that affect millions of people around the world. And of course, there’s the horrible Fentanyl epidemic that is out of control and killing all kinds of people of all ages every day. I think people addicted to whatever substance tend to be stigmatized and misunderstood, and these negative stereotypes and biases associated with addiction make it much more difficult to look for help and get access to the resources that they might need to recover.
Of course, Melissa does not represent all people with addictions, but she does show us by example how not to give up and how there is a light at the end of the tunnel. Labels are tricky and a common theme on this podcast. We love to talk about labels, and though Melissa had her way of embracing the label alcoholic, for example, not everyone can do that.
Words like junkie and addict, they can perpetuate the misconception that addiction is a choice or a moral failing, when in fact it’s a chronic illness that requires special attention and ongoing treatment and support. I hope this episode will bring more empathy. And also open up people’s hearts to the fact that everyone deserves to be understood. And if that’s not possible, at least accepted.
Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com. Or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.
This episode features mother and daughter Bobbie and Angela Singletary. This dynamic duo shares their story, full of hardship, resilience, joy, love, and support. Bobbie, Angela, and two of Angela’s kids all have achondroplasia, a form of dwarfism, as did Angela’s late sister Cindy. Listen how Cindy’s life at 33 could not be saved despite the huge sacrifices made by her mom and sister. We will hear how the Medicaid system failed them and how in spite of life challenges, including discrimination, systemic inequity, and personal struggles with alcohol, these women continue to advocate for others.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/1qFpEPqzdD0
About Angela and Bobbie
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[00:00:00] Bobbie: The doctors said, “you do so much for her. You’re just so awesome going around doing this.” To me, I was like, but I’m her mom. That’s what I’m going to do. Any mom would do. Just cuz I have dwarfism doesn’t change the way my brain’s thinking as a mom.
[00:00:19] Carole: That was Bobbie Singletary. She is three feet, 11 inches and married a man who was over six feet tall. They had two daughters, Angela and Cindy. Bobbie, Angela, and Cindy were all born with achondroplasia, a type of dwarfism, as were two of Angela’s children.
Welcome to Wisdom Shared, where parents and children are the experts and where connection inspires change. I am your host, Carole Blueweiss, and today I have as my special guests, Bobbie and Angela Singletary from Biloxi, Mississippi.
Bobbie and Angela sat down with me and we had a far-reaching conversation about many topics. For example, we don’t often hear the perspective of a sibling when it comes to what it feels like to have a sister or a brother that has medical challenges.
[00:01:13] Angela: I think any sibling of a medically complicated child feels like they’re in their shadow. That’s just normal because there’s always more need in that bucket than there is in ours.
[00:01:27] Carole: Bobbie, Angela and Cindy all chose careers where they could help others. Cindy worked in the school system. Angela is a bestselling author, a leader in her community and a certified life coach. Bobbie is a home trainer at apartments for people with learning disabilities.
This interview was transformative, both in words and stories they shared, but also in the energy and chemistry I witnessed between mom and daughter. A true dynamic duo.
[00:01:58] Bobbie: When I was growing up, the question I would get was have you worked in a circus? With dwarfism, it was the only job they could do was be in a circus. Now, they realize that we can do anything anybody else can do. Just give me a step ladder.
[00:02:17] Carole: The first question I always like to ask, is there a childhood memory that you have that sticks with you today?
[00:02:25] Bobbie: Learning to ride a bike. I remember it was a huge bike, and I couldn’t sit on the seat, of course. But kids that I was playing with had gone in to eat and so I was out there with the bike. And I just kept trying and trying until I did it. Like I said, I couldn’t sit on the seat, but I could ride the bike. And it was huge. It was bigger than me.
[00:02:46] Carole: And how did that feel?
[00:02:47] Bobbie: Wonderful. I just felt like I’d really done something.
[00:02:55] Carole: I’m gonna take this opportunity for each of you to introduce each other.
[00:03:01] Angela: Bobbie Singletary is my mother, and she is a social justice advocate, always has been. She taught me the core values of my social justice advocacy that I still see through the lens of today. And she is Gma to my three hooligans. And currently we reside together and we are really enjoying the relationship that we have built at this stage of our lives.
[00:03:35] Carole: Bobbie, would you like to introduce your daughter?
[00:03:39] Bobbie: This is my awesome daughter, Angela Renee Singletary. She’s my firstborn and words can’t explain how proud I am of her. She’s done more than I ever thought she would do as far as being a social justice person.
She’s blown the waters up. She has a beautiful laugh that she just lets go and enjoys life and I’m so glad she does cuz she has taught me to enjoy life. And I love the three grandchildren. Oh man. I love those little ones to death. She’s done a great job being a mother, too. I’m so proud of her. So proud.
[00:04:18] Carole: Tell me about your grandchildren. How old are they?
[00:04:21] Bobbie: Aidan is 13, DL is 11, and Maliaka is eight. And Maliaka is the youngest one and she rules the house. She’s the fashionista. We don’t go anywhere until we run it past her to see if we’re gonna look all right.
[00:04:37] Angela: It’s true.
[00:04:37] Bobbie: Yeah, I have come out of my room and she’s, “are you gonna wear that?” And then I went, “I guess I’m not!”, turn around and change. Then DL, he is funny. He is so funny. I love it, especially in the morning to get up with him. He’ll be sitting there on the couch and he’ll just say something off the wall and it just makes me laugh. And it’s awesome because that’s the way you wanna start your morning. You want your morning to be laughing and start your day good. And then Aidan, she’s a typical teenager. Yeah, she’s more serious. She can be funny. She reminds me a lot of me when I was a teenager.
[00:05:19] Carole: Angela, are your children of average height?
[00:05:22] Angela: My girls have achondroplasia, like my mom and myself. My son is average height. He’s actually tall. He’s not average height. Average height is the chosen go-to phrase, but he’s actually tall cuz their dad is 6’6″. So he’s above average height.
[00:05:38] Carole: How tall is he?
[00:05:39] Bobbie: He’s taller than everybody in his class.
[00:05:41] Angela: Yeah. Yeah, he’s as tall as some teachers. Taller than some teachers.
[00:05:46] Carole: And how old is he?
[00:05:47] Angela: 11.
[00:05:48] Bobbie: He loves to tell us too how tall he is.
[00:05:50] Carole: It’s interesting. I asked you if your children were of average height, which now I’m realizing is not a good question. How should I ask that question?
[00:05:57] Angela: No, it is, because, so the phrase average height is preferred to avoid using the phrase normal because, you know, what’s normal? So average is an actual thing, right? So there’s nothing wrong with that question. It just doesn’t, for this one situation, doesn’t apply. The answer is yes, he is average height because the intention is he’s not a little person. But he’s actually above average height.
[00:06:28] Carole: Angela sent me beautiful something that Bobbie wrote about her life.
[00:06:34] Angela: Last year, I led two anthologies, one covering stories from parents of children with dwarfism. I asked, my mom. Made her. And so she did me the honor of writing that chapter to be published in the Women with Dwarfism. And so this is where that essay resides.
[00:06:56] Carole: Do you want to pick a part to read out loud?
[00:06:59] Bobbie: Yeah. My parents did not treat me any different than my older brother. For example, when my brother went off to college, my dad lowered the handlebar to push the mower so that I could do the lawn. I went to a regular school class and to junior college.
My dad was an Iowa farm boy and an Air Force Master Sergeant. He didn’t take any excuses and believed there was always a way. We just had to figure out the path. And that’s who he was. And he always told me, Bobbie, you can do anything you want to. You just gotta find a way to do it. And after Hurricane Camille, I was nine when it came through, that was a long time ago. But we had to pull out nails out of the wood so that we could fix the house. We all did that. Everything.
[00:07:45] Carole: You were brought up in the 60s, is that right?
[00:07:47] Bobbie: Yes.
[00:07:48] Carole: A lot has changed since then. What comes to mind in terms of how you feel that society has changed for the better or for the worse, in terms of accepting people that are different?
[00:07:58] Bobbie: I think a lot more people have accepted people with disabilities and believing that they can do what other person could do and just maybe in a different way. But there’s still a long ways to go cuz there’s still people out there that still believe that a person with a disability may not be as educated as your average person going to college.
It has come a long ways. Definitely. Cuz when I was growing up, the question I would get was, have you worked in a circus? That was pretty much the job they thought that a person with dwarfism, it was the only job they could do was be in a circus. So now, though, they realize that we can do anything anybody else can do. Just give me a step ladder.
[00:08:42] Carole: And do you consider yourself as having a disability or being disabled?
[00:08:48] Bobbie: It’s hard to answer that because it depends on what I’m doing. If I have to reach something, then maybe. But I do think there’s people around me that are not much taller than me I know would get a kick out of, hey, I’ll ask them to reach something and they feel good that they get to reach something for somebody.
[00:09:07] Carole: Angela was your first-born and she had a sister?
[00:09:11] Bobbie: Yes.
[00:09:11] Carole: I would love to hear the story from you, how you met your husband and what your pregnancy was like.
[00:09:16] Bobbie: We’d go swimming in the river a lot around here. I was 19 and here comes these two guys, and needless say they were about 6’3″. That’s how tall my husband was. And he came over and started talking to me and I was in the water. And he was like, let’s go over here. And I was like, “well, I’m short.” And he goes, “that’s okay. I gotcha.” And then he went to let go of me. He goes, “oh, you are short.” I said, “yes.” He got my phone number.
At that time, I was still living with my parents. I was working and going to junior college, and he called me that night to make sure the number was right, because they didn’t have anything to write it down. So they were telling each other back and forth the phone number so he wouldn’t forget it.
[00:10:01] Carole: No cell phones back then.
[00:10:03] Bobbie: No. No cell phones. We just started dating. We dated for about a year and then we got married. We had a pretty big wedding and about nine months later, we had Angela. Which was awesome because I can still see my husband walking in with Angela in his arms when I had her little sister. That’s a vivid picture in my mind that I just wish I had a picture of cuz it was just the best thing.
I was laying there half dazed, but I can still remember that. And that was just, It was a beautiful, but yeah, I had no trouble with Angela. I felt good when I was pregnant with Angela and everything went great, and then her sister came along. And at first, everything seemed fine and we knew she had dwarfism.
People with dwarfism take longer to walk because the head is heavy, the legs are short, and the body is long, and so getting everything to move together. And she didn’t start walking. At two years old, we knew that something was going on, and so we started going to different doctors and nobody knew what was going on.
We don’t know why she’s not walking. And some doctors though wouldn’t even listen to me. I don’t know if they thought because my height or what? Or it just seemed like they just wouldn’t listen to me about she’s doing this and this, but not this. She can’t be doing that. Yeah, she is. I just felt like I was hitting a wall.
And this is when you didn’t have internet either. So word of mouth of people was how I learned about different doctors. I went everywhere. My husband at that time was working at Ingalls Shipyard. They were laying off, hiring, laying off, hiring, turning back and forth. And so of course at that time he was laid off and the first thing outta the doctor’s mouth was, we’re not a charity hospital and we can’t do this for free.
This was over in New Orleans, and I had my dad with me at that time, and Angela was with my mom, and I let out a string of cuss words. I had never cussed in front of my dad. I told that doctor what I thought of him. Yeah. My dad didn’t say a word. He just, okay. And we walked out and the nurse come up and she said, “I’m so sorry about that.” I said, “I’m sorry you have to work for him.”
But thank goodness we did find one at the University Medical Center in Jackson. Awesome doctor. And he knew right away what it was. And he went in and it was a spinal cord was being pressed with the spinal column. It was pinching it and so she couldn’t get the message down to her legs to walk, but by then it was too late. Atrophy had set in. But she was able to use her arms and she was very intelligent. Just like Angela.
[00:12:49] Carole: A wheelchair user, is that right?
[00:12:51] Bobbie: Yes.
[00:12:52] Carole: You were able to learn a lot, I’m sure, from her. From both your daughters, right?
[00:12:56] Bobbie: Oh, yeah. I have. Yes. I learned a lot of, don’t take anything. Yeah. [laughs]
[00:13:03] Angela: Stand up for yourself.
[00:13:04] Bobbie: Yeah.
[00:13:05] Angela: Advocacy.
[00:13:07] Bobbie: Yeah.
[00:13:08] Carole: It’s interesting the way you felt yourself as the mom, how you were being treated by doctors and then you had that experience to probably empathize that much more when you knew your daughters might have to experience that as well. I can’t imagine. I don’t know, would fury come into that?
[00:13:26] Bobbie: Oh yeah. I tried to teach them that just don’t let anybody run you over. Just speak your mind. Try to start out as, I can do this. I got this. Just get outta my way.
[00:13:39] Carole: What kinds of lessons have you learned from your daughters?
[00:13:44] Bobbie: To speak up for myself. Now, Angela once told me that I’m very outspoken when it comes to my family, but when I come to myself, I don’t do it as much and so I’m learning more about even still now learning more about speak up for myself. No doubt.
[00:14:07] Carole: Angela, what has inspired you that your mom has taught you?
[00:14:13] Angela: I grew up poor. We had what we needed, but we grew up in the lower socioeconomic neighborhood and because of that we had a lot of diversity racially in our neighborhoods. Honestly, it wasn’t uncommon for us to be the minorities when the kids were outside playing, and my mom taught me the value of equality and equity before equity was even a word through lessons with my friends, seeing the injustices that some of them would face or their families would face. She had very open conversations with me about racism and how it’s our job to make sure that A, we’re not continuing that, but then also that we are standing up and advocating for others.
And so having that experience to be able to see some of those things firsthand. Because the neighborhoods we grew up in and then coupled with her teachings, this really formed a huge foundation of my belief system and the way that I consider myself a humanist and really looking at people for who they are, what their intentions are, and what their needs are.
[00:15:35] Carole: Bobbie, what drove you to be that advocate? Was it something that your parents instilled in you or is that something you developed later?
[00:15:43] Bobbie: I think that my parents did instill some in me, and I think it grew more as I had my girls and knew that we were gonna have to advocate with them. I didn’t want to be just speaking for them. I wanted them to learn as they grew and they did. They were young and they would advocate for themselves, and I would back them up.
[00:16:07] Carole: Tell us a little bit about your philosophy and how that worked out for you in terms of letting your children be as independent as possible. As soon as they could in terms of their age.
[00:16:17] Bobbie: That was something that they would have to do things for themselves, and that included climbing up the cabinets to get the dishes down that they needed. Or we had a, what they call a kick stool. You could step on it and it would go down, it was like a library stool. And they’d get stuff out of the freezer or grab something to make something, like a big, large spoon to pull something towards you, like a jar of peanut butter or something. And Angie had chores. Her chore every evening was to wash the dishes. And she’s up on the stool doing it just like anybody else would.
[00:16:52] Angela: This is before dishwashers were in every household.
[00:16:57] Bobbie: Exactly.
[00:16:58] Carole: And then how was it for you having a sister in a wheelchair but you weren’t?
[00:17:02] Angela: It’s complicated. I think any sibling of a medically complicated child feels like they’re in their shadow. I think that’s just normal because there’s always more need in that bucket than there is in ours. But me being the older child, much like my oldest, I naturally fell into the little mommy role, whether it was asked of me or not. I didn’t mind that she had extra needs, but then there were times where I felt frustrated with it, and then there was some fear at times too when she would have to have surgeries because she would have to go to Jackson or Shreveport and I would be here or I would go. Either way, I didn’t fully know what was going on or what the result would be, and nobody wants to see their sibling in pain with IVs and all that, so it was a mixed bag.
[00:18:01] Carole: Were you close with your sister?
[00:18:05] Angela: Extremely. Very close.
[00:18:11] Carole: Bobbie, how do you take care of yourself?
[00:18:13] Bobbie: I go to work. Right now, I’m a home trainer at a group home and apartments for people with intellectual disabilities. I love it very much and pretty much it’s helping people that have a learning disability. They live in either, we have some apartments and they live there, and we help them with their budgets and with their money so that they pay rent. It’s a real apartment.
And then the group home, we do the cooking and if they need to go somewhere, we take ’em there, but they dress themselves and bathe themselves. It’s so much fun. I love it. I love it. These people are just so loving and awesome.
[00:18:53] Carole: You wrote about your relationship with your husband when it started to go not so well, and the reason I want to bring this up is just you had a way to finally free yourself of some of the things you described that weren’t going so well.
[00:19:06] Bobbie: Yeah. The one thing that I did start doing after we got Cindy situated with the surgery on her neck and everything, and it wasn’t a happy household. He was very stern, very I’m the husband, I’m the dad, this is my house, I’m paying the bills. And I grew up in a household where you get married once and that was it. You don’t get married again. Cuz it was a religious thing. I’ve changed that thought now, but it wasn’t a happy household and I started drinking and every day. My doctors called me a functional alcoholic. I was able to do what I needed to do. During the day, I could even go to the school and help with the students, the teachers, and nobody knew that I was drinking cuz after I got sober I would talk to them about it and everyone was like flabbergasted.
They did not know that I was drinking. But I drank every day for about almost eight years, and then I realized that my girls were getting older and they were pulling away. And I understood why. I would’ve too, cuz you’ve got a mom that’s drinking all the time and not being a mom.
And my husband had also killed himself. He took a lot of pills and alcohol and he was diabetic and we believe he didn’t take his insulin. They said it looked like he laid down and went to sleep. And he had tried before, many times, different ways. And so we thought that it was a possibility of it happening. And at that time, I had already separated. I was at my parents’ house with the girls cuz I wanted us to be safe and I had already decided I was leaving him. So I got myself into a rehab and got sober. I’ve been 23 years now sober.
[00:20:58] Carole: Was there something that helped you that stands out?
[00:21:01] Bobbie: Keeping my relationship with my girls. I did not want to lose my girls and I was afraid I was losing them. I did not want to lose that mother-daughter relationship cuz my daughters are my world and I could see it slipping away and could feel it. And that’s what made me go to the place and tell them I’ve got to check in. And thank goodness for my dad, he helped with the girls while I was in, cuz I was there for 21 days.
[00:21:28] Carole: So you went somewhere to a facility to help you?
[00:21:30] Bobbie: Yeah. There was a local one, yes. That was the only way I could do it. I do a lot of praying now and I did that then too. Whenever I felt it coming on. I wasn’t gonna lose my girls.
[00:21:45] Carole: Is there anything you’d like to say to Angela while she’s sitting right next to you?
[00:21:52] Bobbie: I love you very much. I’m very proud of you. Thank you for sticking with me. Thank you for being there whenever I needed you.
[00:22:01] Carole: How long have you been living together?
[00:22:04] Angela: Since Cindy died in June of 2019.
[00:22:08] Carole: That’s another big mountain of grief. How did she die?
[00:22:13] Bobbie: They believe it was her heart. She had heart troubles. It’s a big, long story about the Mississippi Medicaid had stopped and so she and I went out to California cuz it’s easier to get Medicaid and stuff out there. And we started going to doctors, but we didn’t get out there quick enough to get all the tests run and stuff to find out that her heart was not doing well. And I had gone to work that day. I was working at a veterans village for veterans that are homeless. It was like a camp. So I had left that morning and when I came back that evening, she had passed.
[00:22:52] Carole: I am so sorry. And it sounds like from how you told the story that perhaps that you had better access to medical care, am I understanding that correctly?
[00:23:00] Bobbie: Yes, very much, yes.
[00:23:02] Carole: Can you tell us a little bit about that for people out there that are in your situation and also people that aren’t, just to realize how unfair these things can be. We don’t hear these stories.
[00:23:12] Bobbie: She was getting social security and she also had a part-time job. She was an advocate. She would help students in schools to get what they needed to learn, to make sure that the schools were giving ’em extra time or maybe giving ’em a test the way that they understood. Cuz, you know, there’s some things that the schools are supposed to do and they don’t do it unless you push ’em.
But, and so she was very good at that. She was really good at that. I was her assistant and her driver. So I was receiving social security also for helping her. And somehow had thought in their mind that we owed them a lot of money and we didn’t, cuz we were very good about making sure we didn’t go over anything we shouldn’t.
And so when the social security stopped, the Medicaid stopped. So therefore she had no medical insurance at all. We were appealing, that’s the word, for the decision. And it took so long, she was just not doing well. And we had bought a house and we couldn’t keep it. And so we made a decision just to go on out to California. And so she and I drove out there in three days.
[00:24:24] Carole: And when you got out there, what happened?
[00:24:27] Bobbie: We lived in a hotel for a while. I already had a job. I had gotten the job here, and so I had that ready and I started that like two days after we got there. And so we lived in a hotel for a while. And we had just gotten a little apartment about a week, maybe two weeks before she passed.
[00:24:46] Carole: And you went out there specifically to get care that you were?
[00:24:49] Bobbie: Yes, because we knew that the Medicaid was a lot easier to get and that they had programs for people with disabilities that were a lot easier to get than in Mississippi. Mississippi is terrible about their programs.
[00:25:03] Carole: Yeah, I’m learning that in interviewing people in different states, how many people change their lives in order to get the care that certain states have that they don’t have in their state. And it’s mind boggling. Even major cities that aren’t as good as some smaller cities. So your intention, it sounds like, was to actually move to California because you could get all this care there.
[00:25:24] Bobbie: Yeah. That was why we moved, was to get her medical insurance and we knew that we could get her better and easier access to doctors.
[00:25:34] Angela: Better doctors.
[00:25:35] Bobbie: Better doctors.
[00:25:35] Carole: Better doctors. So did you have a time when she was being seen by the doctors there and it was just?
[00:25:40] Bobbie: Oh yeah. There, yes. We had started that. We had already gotten the Medicaid. We were getting on our feet. We were still struggling, but we were getting on our feet and she had Medicaid. We had seen doctors, we had started running tests, but we just didn’t get there quick enough to do enough tests in time.
[00:26:01] Carole: How old was Cindy?
[00:26:03] Bobbie: 33, 34?
[00:26:05] Angela: 33, yeah.
[00:26:06] Bobbie: 33.
[00:26:07] Carole: 33. And just to rewind a little bit, you are saying that you both had jobs, but am I right in understanding that in order to receive social security, you couldn’t make too much money because then you wouldn’t receive. Now, I imagine these jobs that you have aren’t paying you a lot.
[00:26:26] Bobbie: We were in Mississippi.
[00:26:27] Angela: She didn’t have a job.
[00:26:28] Bobbie: I didn’t have a job.
[00:26:29] Angela: Her job was taking care of Cindy.
[00:26:30] Bobbie: Yeah, I was Cindy’s-
[00:26:31] Angela: And Cindy had a part-time job.
[00:26:32] Bobbie: Right. And she was working part-time for a nonprofit.
[00:26:36] Carole: For a nonprofit.
[00:26:37] Bobbie: Yeah. And in Mississippi, you don’t make much money on nonprofits.
[00:26:42] Carole: I’m trying to understand this. So Social Security Agency, why were they saying that you owed them money?
[00:26:49] Bobbie: What it was that Cindy and I had worked before for a different nonprofit and they thought that our money together had made up too much money. I know it’s hard to explain, but we had write offs. Write offs, and so we had done that. We had, like with medicine, Cindy had a service dog and of course she could write the vet off, the food off and the care for the dog and everything.
And we did that and we kept everything and they came and took 10 years worth of paperwork and I had it. They were surprised I had it, but I had it. We kept up with everything.
[00:27:26] Carole: You were audited, it sounds like.
[00:27:28] Bobbie: Yeah. Yeah, I was audited. Yeah. Yes, that was, yeah, that’s what it was. It was audited by Social Security, yeah. But by the time that was over, the lady had called, said everything’s good, and they sent us back our paperwork, and this was, it’s about five years down the line, they decided that we owed them $94,000. Yeah. I’m like, no.
[00:27:56] Carole: So wait, so where’s the disconnect? What in your mind happened, or?
[00:28:00] Bobbie: Somebody’s not looking back at what the decision was, or is somebody changing their mind about the decision? I think it’s too many people making decisions is what I think it is.
[00:28:13] Angela: I think that the state of Mississippi had some severe budget cuts and they had to figure out where that was gonna come from, and so they started dropping people from Medicaid because they’ve since had a class action lawsuit where they’ve lost, but we weren’t a part of it.
And so the struggle is that these agencies can audit you whenever, however they want to. And they passed the 10-year audit five years earlier, and then came back again and said, now we are accusing you of overpayment and you have to pay us back.
[00:28:46] Bobbie: Yeah.
[00:28:47] Angela: And until you prove that you didn’t overpay, we’re gonna cut you off. And so between trying to prove they’re not needing to overpay and not being able to actually get an actual explanation, because nobody answers the phone and nobody answers your emails, because they’re all understaffed, because the budget cuts are so severe, then it just makes it hard to even truly know why to this day they are still saying that she owes, $90,000.
[00:29:19] Bobbie: Yeah.
[00:29:19] Angela: Her, herself. And it goes back and forth and she’s been fighting it since she got home.
[00:29:25] Bobbie: Yeah. And you never talk to the same person, so that doesn’t help. You don’t get like a case worker.
[00:29:31] Carole: Just like you two are sitting here. You two are both advocates. You two were basically doing so much for other people to help them because you empathize. And that’s just the kind of people you are. Are there lawyers out there that would help you advocate for you?
[00:29:45] Angela: Not pro bono.
[00:29:46] Bobbie: The ones I’ve talked to, they say there’s nothing you can do. It’s social security. They’re like
[00:29:51] Angela: too big to fight.
[00:29:52] Bobbie: Yeah.
[00:29:54] Carole: Do you see yourselves as being very resilient human beings?
[00:29:59] Angela: I think that’s an understatement. We’re like cockroaches.
[00:30:04] Carole: I mean, it’s just, can’t make that up.
[00:30:06] Bobbie: No.
[00:30:07] Angela and Bobbie: You wouldn’t want to!
[00:30:11] Carole: What advice would you have to people out there that have had losses and have had challenges, what has helped you the most?
[00:30:18] Bobbie: When Cindy passed away, Angie came out to California and got me because family is my support, there’s no doubt. And I didn’t have anybody out there. I had a few friends I made at work, but Mississippi has always been my support system cuz I have old friends here.
And so I definitely say stay with your support system and try to let ’em know that you need ’em. I like to go and shut myself up in my room and just stay in there, but Angela’s been really good about pulling me out and having me do things, which has helped cuz that’s made me a happier person. There’s no doubt.
So get out there and do things and it’s gonna hurt. Stuff’s gonna come up and you’re gonna remember, but just try to remember the good times too, cuz there were a lot of those.
[00:31:11] Angela: Yeah, I would say similarly, as a life coach, it’s important to feel your feelings. Trying to stuff ’em down doesn’t do you any good, and trying to hide from them, whether it be grief or just struggles, is gonna just fail in the end.
Lean on your support system and whether that’s the family that you were given or the family that you’ve chosen. And if you don’t have either, then it’s never too late to create one. It does take stepping out on a limb and creating that friendship, or if you already have that friendship saying, hey, I could really use some support. And that can be tough because you don’t want someone to say no or someone to say yes and then not be there for you.
But continuing to find those people who can be there for you to help you through that while you are feeling your feelings is key to resilience. And then once you’ve gotten past it, you can use those things that you’ve survived as evidence that when the next thing comes around, you will survive it as well because you’ve already survived the other things.
[00:32:19] Carole: Angela, you’re a life coach. Clearly, you have a lot to draw from, which I imagine makes you an extraordinary professional in helping other people. Were you drawn to that career because of anything in particular?
[00:32:31] Angela: When I first went back to school after I was married, I originally thought that I wanted to be a dietician because as a little person, as the sister of a medically complicated sibling, I understood the need for being healthy and how that can affect us as little people with our bone structure. And then, you know, everybody else as well.
And then could only find a program that was a day program and I had kids and so on, so I then was considering psychology because everybody has always told me I’m a good listener. I give good advice. But then once I started school I realized I don’t really like going to school. And so getting a Master’s or PhD was out of the question.
I was going to school off and on. My husband was going to school. I had kids, and then I was at Tulane and they opened a wellness coaching bachelor’s program and I was like, this is it. Like this marries the best of both worlds. And after I got divorced, my mom and my sister watched the kids at night for me and I was able to finish my bachelor’s and I started wellness coaching with a focus on health.
But then as I started to work with clients, I saw that health is the surface and the actual need is much deeper. And so that’s shifted into life coaching. So currently I help women ages 35 and older make themselves a priority again. Often women come to me, they’re overachievers, they’ve been giving themselves away, they’re people pleasers, and I help them map out goals that they have for themselves.
And work towards that. Start saying no, start eating healthy and exercising, because that’s a key part of it as well. I absolutely love it. And then last year I started A Little Perspective, which is a small publishing company and we have a podcast, we do books and we do public speaking as well. All focused on advocacy for marginalized communities.
[00:34:35] Carole: Can you explain a little bit your business model, coming out with these amazing books that have so much information? How did you come up with this concept of, first of all, little perspective series?
[00:34:49] Angela: One of my mentors was a part of an anthology, which is a book of essays written by different people, and she decided to lead her own, and hers was called Finally Free. And it was stories of women and men who have overcome something big and they feel free from having overcome it. And she asked me last year to be a part of it. And I said, no, thank you. And then she came back and she was like, no, I really need you to be a part of it. And being she was an important person in my life, I said yes and realized that it was fear that was letting me say no.
And so I wrote my first chapter and the experience that I had as a part of that, I can’t even put it into words because not only does writing that set you free already, putting it out there for the world, while it does make you feel like you wanna puke, it also helps you to see that what you went through is going to inspire and motivate others, and it does.
And then that coupled with the group experience of being with others who are going through the same thing, who are having all of those same emotions. Then to see those people, myself included, go on to do big things because it’s like something became unlocked. Once you’ve done that big hurdle, then you see all these other things that I wanted to do.
Oh, I can do that. That’s when the idea of the two books came to me to do. The parents, I think, was the first idea because 80% of children with dwarfism are born to average height parents. So that means that it doesn’t run in the family. Often, no experience with it because it is such a rare condition. Not everybody knows a little person.
And because of that and because of the way that medical doctors can be inexperienced as well, there is often a traumatic beginning to this child’s life, whether it’s in utero or directly after. Once it’s found that the child has dwarfism, it’s not uncommon for the suggestion to be to terminate the pregnancy. Simply because of the dwarfism, not because of any greater complication. And I felt impassioned to tell these stories for the 80%, my goal with this book was so that if another parent were to read it who finds out that their child has dwarfism, they are to see, okay, this diagnosis isn’t the end of the world.
There may be some medical complications, but they’re not as complicated as some of these inexperienced doctors are making them out to be, they’re certainly not gonna lead to being fatal necessarily, and all these scare tactics that it feels like some of these medical professionals put on. I really wanted a resource for these parents, but then also family of these parents. Because I have had aunts and grandparents reach out to me and say, do you mind if I ask you some questions? My sister just found out that her child is gonna be a little person. I don’t wanna bother her cuz she’s going through all this, but I wanna calm my fears and then maybe I can help calm their fears. So I wanted to provide a book that could really help that whole thing.
And then also the same though with the lady’s book, because, as we’re raising our kids, like you said earlier, struggle with how much is too much sheltering, how much is enough? We don’t want our kids to suffer, but there’s gonna be suffering no matter what. But being a little person, you have an extra layer.
And so I wanted these ladies to tell stories of some situations that they overcame themselves. And survived and are now thriving so that these parents could again see that, oh, okay, yes, they’ll be better in some senses from. So that’s how the books started. And then what I’m doing now is helping others who have the same kind of ideas lead their own anthology. So I have a trans woman, we are working on a book right now together, and then I have a book focused on the disparity of healthcare for women of color that I’m leading with a visionary. The idea of A Little Perspective is that considering myself a humanist, I think that often all it takes is a little perspective to understand somebody else’s world.
And if you can understand someone, then you can empathize. And if you can empathize, then you can either not judge or you can help. And both of those things are key to me for those of us in the marginalized communities. There’s a phrase called inspiration porn, and that tends to refer to average people using person with a disability, them experiencing their either average day to day as inspiration. I’ve been told that I’m so proud of you when I’m at a grocery store because I’m at a grocery store. But then it also goes towards exaggerating someone’s disability in order to, you know, clickbait, so to speak.
[00:40:30] Carole: What’s clickbait?
[00:40:31] Angela: Making things much more dramatic than they actually are in order to create a very pitiful image to create viewers, readers, whatever it may be.
[00:40:44] Carole: I see, to attract them, to listen or buy a story. You wrote about your experience with the doctor who said to you that you’re so awesome because you were taking care of your daughter, Cindy.
[00:40:57] Bobbie: Yeah, the doctors. They were like, just take her home, love on her, don’t look for anything else to help her. And he said, you do so much for her and you’re just so awesome just going around doing this.
And to me, I was like, but I’m her mom. That’s what I’m going to do, any mom would do, just cuz I have dwarfism doesn’t change the way my brain’s thinking as a mom. It just surprised me.
[00:41:25] Carole: Yeah. Angela, tell us a little bit about your podcast.
[00:41:29] Angela: The podcast started a couple of years ago. October is Dwarfism Awareness Month and in the dwarfism community, it’s not uncommon for us to post facts and information to educate throughout the month on social media. I thought, well, I can interview people in the dwarfism community, like my Facebook friends, people that I know, and show the different ways that in some ways we are the same, but then in some ways we’re not. You had asked if we have a disability and I think in some senses of the word, especially with achondroplasia, because we typically tend to be able bodied, we’re not usually in a wheelchair.
It is kind of a mix of an invisible and a visible disability. It’s obviously visible cuz I’m four foot tall. But people assume that that means that there’s nothing wrong. And while I’m lucky and I don’t really have many health issues, a lot of people with achondroplasia do. But then there’s also just the things that come along with being a person who’s only four foot tall. Fountains, bathrooms, doors, day-to-day things that can be complicated. So there’s definitely a disability aspect, and I wanted to highlight that, again, in a very humanizing, non-pitiful way to show, hey, we’re just like you, but we do have these certain things and if you know about them, you can advocate for us as well.
And so for that month, I interviewed, gosh, I don’t know, 20 or so people. With different types of dwarfism. Not just achondroplasia cuz there’s 200-400 types. And found that I enjoyed it. I really liked it and continued to do throughout the year, interviewing people, just posting it on social media and decided that it was something I wanted to continue, but that I wanted to step into the disability world.
We are larger as a disabled group than we are as a dwarfism group and a lot of disabilities have a lot of the same needs, which is why the ADA came about. My thought was if we could interview different kinds of disabilities and conditions, then we can start to, again, humanize these things, start to show the world that while yes, we’re asking for accommodations, what we’re asking for isn’t that much, and it’s more than just one or two people.
It would help a lot of people. And this season, this year, I asked one of the authors in the ladies book, Samyuktha, to be my co-host, and so we’ve been doing it this season together and she also has achondroplasia. She’s an American who is from India, and it is just a platform for people with disabilities to use their own voice to speak for themselves. Really humanizing each of these different kinds of conditions.
[00:44:37] Carole: So my last question, I’m gonna ask Bobbie first, who is your hero?
[00:44:43] Bobbie: Gotta be Angie. Who else could it be?
[00:44:47] Angela: Good answer.
[00:44:48] Bobbie: Yeah. Who else? Yeah, because she has come through so much and she’s still like Wonder Woman flying through it, and she’s this leader of all these people and she doesn’t realize how many people she’s a leader of. She just amazes me.
[00:45:07] Angela: Who is my hero? My papa has always been huge. My mom’s dad was very much a father figure in my life, very much the keystone. He was the solid rock. If all else fails, papa’s there, so I would definitely lead with that. We have so many women in my personal life that have begun to mentor me over the last few years and really provided so much kindness and guidance. And then I’m a big Ruth Bader Ginsburg fan. I appreciate all that she has done and the way that she did it.
As a mom, it’s hard to do all the things and not feel like a failure as a mom and her reminder that you aren’t going to be able to do all the things, it sticks with me because I want to be an amazing mom, right? Who doesn’t, but I also have a calling to be a leader, as mom says, if that’s what we wanna call it.
[00:46:15] Carole: Where can people listen to your podcast? Where can they buy your books and how can they find you if they want some coaching?
[00:46:21] Angela: A Little Perspective podcast is on YouTube. It’s a visual podcast, and next season it will be on all the audios as well. The books are on amazon.com. And life coaching, I have a website, it’s either purposebyang.com or alittleperspective.org. Both go to the same website and there’s a ton of information about me, my coaching packages, the books, and all that kind of stuff on there as well.
[00:46:51] Carole: Great. And we will put everything that you just said in the show notes so people can refer to that. I wanna thank you both for being so honest and sharing your wisdom. That’s what this is all about, and I really appreciate you both being on Wisdom Shared.
[00:47:08] Bobbie: Thank you.
[00:47:09] Angela: Thank you.
[00:47:15] Carole: I may choose my guests because they have kids with some type of challenge, but this podcast is not about the label. Rather, it’s to discover the reality behind stereotypes based on age, religion, stature, diagnosis, or whatever. The challenges are highlighted, but only to bring forth the idea that we all have challenges of one sort or another.
And how we manage them or deal with them is unique and worth sharing. I believe we can learn from each other so that a community of storytellers can perhaps make for less loneliness, less marginalization, and less pigeonholing. One way to do this is to ask questions. I admit, I find it fascinating to listen to how these amazing guests who I find in so many different ways, how they perceive their own realities and how they came to see the world from their perspective.
It’s like I’m discovering the nuggets of wisdom that would be buried if not for these conversations. I can now share my newfound bird’s eye perspective as these guests share their realities. Maybe you are wondering how I met Angela and Bobbie. Well, I love sharing how I met my guests because each encounter is a story in itself, and in this case, a coincidence, if you believe in such things.
Season two episodes one through three were interviews with the Curwins. Jillian, a little person and her mother Audrey, who is average height, maybe a little taller. Taller than me, at least. And when I posted their episodes on a social media group that consists of a collection of pediatric occupational and physical therapists from all over the world, run by the visionary, a New Zealander, Mindy Silva, a member of that collective, Sally Vicary, reached out to me to say she was the mother of twins, one of whom was a little person.
She explained to me how she had recently written a chapter in an anthology that included stories from 14 other parents of children with dwarfism. Angela published this book, Special Delivery from Pregnancy to Toddlerhood in her Little Perspective series. Angela had already been interviewed on many podcasts, including Always Looking Up, Jillian’s podcast.
Another coincidence. But when I spoke with Angela, I realized that I wanted to hear her mother’s perspective too. So I invited Bobbie, Angela’s mom, to join us in conversation. I would be remiss not to include here that during the interview I told Bobbie and Angela that I found them very inspiring because I did. But then I caught myself, worried that I’d crossed the line into inspiration porn. So this is how that went down.
You are both very, if I say you’re inspiring, that’s bad, right? Because, but you’re inspiring is like, I mean, I’m talking to you shoulder and up, so ,you know, and I’m talking to you as if you’re just average height. Cuz you are right now to me. And I’m sorry to say you’re inspiring. I apologize.
[00:50:12] Angela: No, there’s nothing wrong with being inspiring.
[00:50:13] Bobbie: There’s nothing wrong with that.
[00:50:15] Angela: It’s just being inspiring for the right reasons, as long as you would say the same to someone who didn’t have a disability, you know?
[00:50:24] Carole: Yeah, absolutely. It’s how you think and how you’ve gotten through the challenges that you’ve gone through, and everyone goes through challenges and then, you know, some you’ve done well, some you haven’t done well, but you’re just able to talk about it and wanna help other people all the time. It’s very, what’s the word? Very, it’s like a, it’s like a bright light.
[00:50:44] Angela: Thank you for your patience and all the changes and everything.
[00:50:48] Carole: Oh, no. I’m so grateful that we got to do this. I knew it would be worth the wait.
Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.
Lisa Greer is a mother of five, a former executive and business owner, a convener of charitable events, and the author of Philanthropy Revolution. We discuss her childrens’ diagnoses with cancer and adolescent-onset epilepsy and how that affected the whole family. Lisa explains how transparency fosters trust, something that applies to the worlds of charitable giving, healthcare, and parenting. There are so many impactful takeaways from this wide-ranging conversation with Lisa, as the wisdom she has gained in her variety of roles interconnect in sometimes surprising ways.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/KE1KrICHEPM
ABOUT LISA GREER
FROM THIS EPISODE
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The Wisdom Shared Team
[00:00:00] Lisa Greer: It’s the memory of the pain. It’s the memory of being pulled out of school. And in my daughter’s case, it was having a kid that everybody was talking about and trying to figure out how do I protect her from that? And is that good or bad to be known as the kid with cancer?
[00:00:19] Carole Blueweiss: Welcome to Wisdom Shared, where parents and children are the experts and where connection inspires change. I am your host, Carole Blueweiss. And today I have as my special guest Lisa Greer, a mother of five, a former studio executive at NBC and Universal Studios, and later the owner of an egg donor company that helped women who were having difficulty with pregnancy. Lisa sold that company when she suddenly became a member of the 1%, which allowed her to quit her day job.
[00:00:51] To learn more about Lisa’s story, you’ll have to read her bestselling book, Philanthropy Revolution: How to Inspire Donors, Build Relationships, and Make a Difference. While reading Lisa’s book, I was struck by how the advice in her book on how to best approach donors and ask them for money seem to mimic her approach to parenting and even speaking with healthcare practitioners.
[00:01:20] For example, she writes about the importance of curiosity, listening aggressively, and being honest. When her 10-year-old daughter was diagnosed with cancer in her sinus and then her teenage son with epilepsy, a seizure disorder, Lisa found herself in new territory where she needed to use her curiosity and listening skills to understand all the choices and to understand and empathize with her children.
[00:01:52] She had some help from her husband, Joshua Greer, who as a child he was diagnosed with a chronic condition called Crohn’s Disease, which causes inflammation of the digestive tract. His familiarity with the medical world helped Lisa feel less intimidated and more proactive when it came to speaking to the doctors and asking all her questions, but in spite of this familiarity, nothing prepared her for the multitude of challenges that followed her kids’ diagnoses.
[00:02:22] In this episode of Wisdom Shared, we will hear Lisa’s perspective on parenting and communicating with medical staff and her perspective on giving and receiving. We will hear about her insights, her struggles, her questions, her breakthroughs, and her advocacy. Let’s now listen to Lisa and her wisdom.
[00:02:46] Do you have a childhood memory that sticks with you today?
[00:02:49] Lisa Greer: My biggest childhood memory is my father saying to me when I was about 13 years old in front of a group of people. My parents were into events, like cocktail parties, and he looked at me and he said, “oh, it’s too bad that you aren’t a boy. You would’ve made a great attorney.”
[00:03:05] He was an attorney. I remember it clear as day, it’s one of those things where I think that shaped a lot of what I do. I’m a fixer, which could be a good thing or a bad thing if overdone, which I’ve probably done a little bit of both, but I can’t help myself. When I see that there is something in the world that isn’t being done, in my opinion, correctly or isn’t being done in the best way it could be done, I have tools to understand why it’s not right. Then I just go to fixing it, whether it be dealing with my daughter’s illness or dealing with my husband’s chronic illness or dealing with seeing that philanthropy in terms of charitable giving, in my opinion, is not being done in a productive way.
[00:03:51] Carole Blueweiss: And what does Lisa do when she sees that the world of philanthropy isn’t quite working as it should or it could? She writes a book where she describes how fundraisers tend to ask potential donors for money and how maybe they could be rethinking their strategy.
[00:04:06] Lisa Greer: It’s not as successful as it could be and a lot of organizations could fail if the way that it’s being done isn’t changed. So that’s why I wrote the book. It’s a blessing and a curse because I do see more things that need to be fixed than I could possibly fix.
[00:04:21] Carole Blueweiss: In her book, Philanthropy Revolution, Lisa explains why she thinks an intervention into the fundraiser community is needed. Her drive to fix what’s not right led her to focus on the non-profit sector, as she says, to save giving. Lisa also looks inward to help herself change in new ways. She learns from Stacey Barrows, a doctor of physical therapy who melds the Feldenkrais Method, Pilates, and her smart roller practice.
[00:04:52] I asked Lisa about her experience with the Feldenkrais Method, which you can find more about in the show notes. The irony here is that the method is about learning to try less hard and not to think about fixing, but to become more aware and move with less effort. So I was curious what Lisa had to say about that.
[00:05:11] I know from one of the ideas is that you’re trying not so much to fix. You’re trying more to do something different. So I wonder if your experience with the Feldenkrais Method is helping you in any way, or making you more aware of alternative ways to fix.
[00:05:29] Lisa Greer: Feldenkrais erased the panicking where every little thing that was wrong, oh my God, I’ve gotta fix that right now. My elbow hurts. I have to go to a arm doctor. I have to stop and take a breath and say, no. My body knows what it needs to do and I need to practice some of the Feldenkrais things I’ve learned that are very slow and very quiet and low key, and that things then work out. Maybe that’s why it’s working for me because it’s so diametrically opposed to how I do everything else.
[00:05:59] Carole Blueweiss: That’s when it’s usually most helpful is when you’re introduced to something that’s not like you usually think.
[00:06:06] Lisa Greer: I think that’s it. I also do reflexology and same kind of thing, go almost into a trance. So, if I’m trying to write an article, which I do a lot of writing, I stop worrying, and then I’m able to think creatively.
[00:06:22] Carole Blueweiss: You said you have five children.
[00:06:25] Lisa Greer: Right. The oldest was just 36, and then I have 16-year-old twins and two children in between.
[00:06:32] Carole Blueweiss: One of your children had cancer. Do I understand that right?
[00:06:35] Lisa Greer: Yeah, that’s right. My middle daughter was diagnosed with an extremely rare tumor in her sinus when she was 10 years old, and she was asymptomatic. We found it because she was getting braces early. She matured a little bit faster than other kids. They give braces to you earlier now anyway. And she went to go have those x-rays and they said they found something that they just thought was an unerupted baby tooth or a cyst, and not to worry. So I didn’t, and found out very soon after that what they thought was a cyst was actually the edge of a very large tumor that was in her sinus.
[00:07:10] Carole Blueweiss: And how old was she?
[00:07:11] Lisa Greer: Ten.
[00:07:12] Carole Blueweiss: 10 years old. From there, there was a journey of diagnosing and healing, and I imagine a lot of things going in a different direction.
[00:07:24] Lisa Greer: Yeah, yeah. Dealing with a child who has no symptoms and has just been told that they have cancer was difficult. I did it in a public place. We did it. We took her out to a deli. I felt it would be less hysterical that way. She wanted to know if she was gonna die. And then there were big surgeries, then there were smaller surgeries. Thankfully, she didn’t have to have chemo or radiation because her type of cancer was a cystic type where I guess it could have metastasized, but it was really contained within a certain area.
[00:07:52] She has had reconstructive surgery since then, and it’s an ongoing thing. Right now, she doesn’t have teeth in her upper jaw on one side, and so we’ve done a variety of different types of reconstructive processes to try and solve some of that. We haven’t found a solution yet that works, and so we will continue to keep looking.
[00:08:13] But at the moment, she’s content. Knock on wood. She’s fine. She’s free of all of that. She’s 27. You don’t forget things like that. So she’s got a physical piece that stays with her that you can see if she smiles really broadly. She doesn’t have pain typically, but there’s related issues like with her sinuses and things that seem to come up.
[00:08:32] And then as a parent, I don’t think you ever, ever outgrow or completely leave the idea that every stomach ache could be something else because it was such a shock when this happened.
[00:08:42] Carole Blueweiss: What advice would you have for parents that first find out of something like this? What worked best with you and your daughter in terms of coping with this traumatic news?
[00:08:54] Lisa Greer: I do think talking to other people is helpful. I didn’t really have anyone else to talk to, so I made it up as I went along. Dealing with other children was an issue. My other kids were totally freaked out. I had some friends that I didn’t talk to during that whole time because they were freaked out by the idea of kid had cancer.
[00:09:11] There were issues at school about people marking her as the kid with cancer, things like that. But I think talking to other people who’ve been through some of it is extremely helpful. And right now my daughter is part of the group at an organization called myFace based at right now at NYU in New York.
[00:09:29] And she, for the first time in the last year and a half, has been able to be part of a group of young adults who’ve had facial differences or facial issues, surgically or with disease, and who are able to talk to each other about what their lives are like and how they deal with stuff. And I think that’s extremely helpful.
[00:09:47] As a parent. I have to say, I felt totally alone. This is was my third child and I trusted that I was just gonna figure it out. Also, my husband was incredibly helpful because he had been diagnosed with a bad disease when he was a kid. So he was very familiar with hospitals and what different machines did and how that looked.
[00:10:07] And we also used the child life person at Children’s Hospital here, was phenomenal and explained things to us and I think that’s really important. People now who have kids who are in the hospital or even young adults, I try to offer them a lot of the advice, even if it’s unsolicited, that I know. Things like it’s okay, and in fact, you should ask for what you need. We had this one kid that I went to go visit who’d had a Crohn’s surgery, and I walked into the room to check on her. She and her mother were there, I think she was like 17. I said, how’s it going? And they said, fine, but she’s really cold. So I said, they have these wonderful warm blankets here and you can ask for those and, you know, just a minute, I’ll go get that for you.
[00:10:48] And they were so surprised that it was something you could do, that you could just ask and that it was something they had because they didn’t know, you know, and I said, and if you need more medication, it’s okay to ask. And these really highly intelligent, highly successful family, but they felt completely intimidated by this whole medical thing and by hospitals.
[00:11:08] And I find that that happens a lot. I used to be intimidated by math. My brain would just fuzz over whenever something math would happen until I got over it. And I think it’s the same here with hospitals and medical things, and some of that is maybe just loss of control. That’s part of the game, part of the whole picture.
[00:11:24] But you just feel very, very vulnerable and I think it makes some people freeze. And I would be happy if every hospital said, let us look in your database and find somebody who’s been through something similar that you could talk to. And for some reason, maybe it’s a HIPAA thing, I don’t know. But it feels like there should be something like that and some of the stuff we can get online, but you don’t really know who you’re talking to and that gets a little weird.
[00:11:47] And some doctors, if both parties agree, are willing to suggest that, find somebody that you can talk to who’s in a similar situation. It would’ve been nice. And I know for my daughter now, she’s very grateful that she has people to talk to even at this late date because this is something that she has to live with.
[00:12:04] Carole Blueweiss: I find that a lot of parents say that finally finding that support is huge. In this case, your daughter found her own support. Did you find support for yourself?
[00:12:14] Lisa Greer: Yes and no. I became involved with our hospital over time when we first started giving. And through that, I became very involved with both working with trying to find solutions for Crohn’s disease, which was a gift that we gave to the hospital, but also in terms of things with, like with my daughter and other people who’ve had issues.
[00:12:35] I’m around doctors a lot now and I don’t feel intimidated by them, and they seem to like that, so we’re able to have conversations. I can have lunches with some of them. We can talk about some of these things, and it’s so much easier when you talk about it. When you don’t, it just tears you up and it’s hard enough going through this in general and then managing other children and managing work and managing friends and relatives and all of those kinds of things.
[00:12:57] It would’ve been way worse if my husband had not been so familiar with hospitals. I just had this conversation with someone the other day whose kid at a similar age had to go through a back surgery and there’s a period of time where they’re in a not really waking state like that post-surgery and sometimes for a few days, and both of us were saying that our kids changed after that surgery and we don’t know if it’s something they heard or some vision they had or dream or something, I don’t know.
[00:13:26] But both of our kids changed in different ways during that time, like woke up on the other end with different interests. In my case, my daughter got super into creative writing and she had never been interested in that before. I’ve heard kids all of a sudden be interested in sports or whatever their favorite thing is, they’re just not interested in anymore.
[00:13:46] So that’s another interesting thing that happens. But I have to say that as I go through life, I keep meeting people who’ve had these kinds of traumatic situations with their kids and medical stuff. Even with themselves. It’s not like a thing that is buried in the past. It stays with you. It’s the memory of the pain.
[00:14:04] It’s the memory of being pulled out of school. And in my daughter’s case, it was having a kid that everybody was talking about and trying to figure out how do I protect her from that? And is that good or bad to be known as the kid with cancer?
[00:14:16] Carole Blueweiss: Did she look different when she went back to school after the surgery?
[00:14:19] Lisa Greer: Well, she couldn’t talk. She could make sounds, but until she got the right appliance for her mouth, which they had to wait until swelling went down. And luckily she had a surgery during the summer, so a lot of that happened during the summer and she was home and wasn’t a big issue. But we developed a little bit of a secret odd language between the two of us so that we could talk about things because she just couldn’t talk normally.
[00:14:42] She could write down things, but she couldn’t talk. And eventually after a few months, she was able to get this appliance in her mouth where she was able to speak. And yeah, it was difficult. She looked a little bit, I would, I don’t think dramatically different, but a little bit, but certainly she had to leave school, including college.
[00:15:01] There was always that issue of, can you go to, we live in Los Angeles, so can you go to New York for school? What if something happens? Are there doctors in these various places? And she’s a world traveler and a food writer. I had to really weigh in my head how worried am I? You know, what if something happens?
[00:15:17] And what if she calls me with a stomach ache, or she calls and says she has a headache and she thinks that it might be something coming back? That was always there. So as a parent, you weigh that and say, look, what’s a realistic concern and what’s good for my child’s growth? And I think she’s a very high functioning together kid now.
[00:15:35] There’s still, most people don’t notice that there’s anything wrong, but it’s because she’s gotten really good at looking at you at the right side and that kind of thing. As she’s gotten more involved with this organization and this support group, I noticed that she doesn’t worry as much about what side she has a picture taken on anymore because she’s seeing other kids with issues.
[00:15:53] Carole Blueweiss: I looked at myFace, which is the organization you were speaking about, which looks like an amazing organization, multifaceted, and I saw that they have a lot of articles that were published about that movie Wonder.
[00:16:07] Lisa Greer: Right.
[00:16:07] Carole Blueweiss: I wondered if your daughter was experiencing any of that, because I did see the movie and read the book, and that’s probably what most of us have a vision of in terms of facial differences. But I am, it sounds like in your daughter’s case, it wasn’t so much about the physical in terms of going back to school or being with her friends again afterwards.
[00:16:31] Lisa Greer: There’s a part of this that kind of skipped over that piece because we moved during that summer, we were moving anyway. My husband and I had actually just got married and we found out she had cancer the day we came home from our honeymoon.
[00:16:44] So we were getting ready to move to a different town and a different school. It was coincidental, but because of that, she went from being the cancer kid that people had known since kindergarten, because I think she was like in fifth grade then or fourth grade, to the deaf kid in this new town. And then once she started talking, that kind of just went away.
[00:17:03] But in terms of friends, there weren’t a whole lot of friends that she continued with in the new school. She made new friends. So I have to say there wasn’t a lot of continuity there. I think there was kind of a hard stop almost.
[00:17:17] Carole Blueweiss: And then she made new friends in the new school.
[00:17:19] Lisa Greer: Right, exactly.
[00:17:21] Carole Blueweiss: Is there anything that you know now that you wish you knew then?
[00:17:26] Lisa Greer: There still aren’t a lot of people who have what she has, but it didn’t occur to me that, oh, there’s other kinds of facial things people have and other kids who go through surgery and cancers, that there are support things. At that point, there weren’t the number of online resources that there are now at all.
[00:17:40] I also think those can be good and bad. They can also make you crazy and you don’t know if the people that you’re talking to are similar minded, or if they’re people who are just, you know, ranting and you don’t know if they’re telling the truth and that kind of thing. I might look a little harder for help, for resources, and who knows, maybe that’s the time with Feldenkrais, that I look to help other people. I wasn’t the person who looked for help from other resources.
[00:18:03] I just educated myself, learned how hospitals work, learned about medicine, learned what they were talking about, learned how to describe this disease, learned what kind of blood pressure cuffs and what kind of tools she needed when she went to CAT scans, if she was going to a hospital that didn’t have child-sized stuff.
[00:18:20] So it was, I was learning every minute of every day. I was also very conscious about my other kids being okay, and luckily they were older. So it was possibly a little bit easier for them, but they were also totally freaked out by what was going on. I think I came to the new school with her new teachers and the new town with a new outlook.
[00:18:42] I certainly didn’t feel like there were any resources available to me in terms of how I felt. You have to keep the worry under control, but you also want to feel it because it’s real. So, it’s an interesting dichotomy.
[00:18:56] Carole Blueweiss: So the way that you found to take care of yourself.
[00:18:58] Lisa Greer: And, by the way, I couldn’t read a lot about this because it was, there were like nine people in the country or the world or something who got it every year. They just said, just don’t even bother looking. Because even if I was to look on the internet today, there still wouldn’t be much.
[00:19:10] Carole Blueweiss: You were starting to say that there’s something that you would love parents to know.
[00:19:14] Lisa Greer: Yeah. We went to this therapist and I had spent, I also was mostly supporting, I was completely supporting my family at that point, and I had three kids and I was the breadwinner, so I had to deal with that kind of pressure.
[00:19:31] But having said that, I was still at every single appointment with her. I was the only person who could talk, who would understand her at some points because she was unable to talk clearly. But a couple years later we went to therapy together and she told the therapist that I had been absent during that whole time and that her father had been, her father and her stepfather had been absent as well, which couldn’t have been further from the truth.
[00:19:52] But that was really painful and it was really hard for both my husband and I for a couple of years. And she just kept saying, I don’t remember you doing anything. I don’t, I just don’t remember you helping me at all. And I was like, I don’t understand how that’s possible for you to say that and was pretty angry.
[00:20:09] And then you start thinking like, you know, have I been gaslit, I guess is what they would call it today. As she got older, it’s just all got back into place. It seemed like it was some sort of a teenage thing. She does remember a little bit saying those things. But she doesn’t really remember why she said them.
[00:20:23] She’s like, of course you guys were there every minute. Of course you helped me. Of course you were next to me. But that was like a sock in the stomach for a while. It was really hard and trying to figure out how did she see it. This was after the major surgeries were over.
[00:20:36] Carole Blueweiss: Did the therapist hear her say that?
[00:20:39] Lisa Greer: Yeah, and so therapist didn’t know if that’s what happened or not. I mean, my child was saying one thing and I was saying another, and I felt really weird to have to defend myself with that and, but it was just some trauma piece, traumatic way of dealing with trauma that she had come up with in her growing brain when she was, whatever it was, 12 or 13 or 14 years old.
[00:21:02] Carole Blueweiss: In my little experience with life, I know that kids like to direct their anger no matter what at their parents. Right?
[00:21:08] Lisa Greer: Right. But then when you’ve been through this kind of thing and feel beaten up and that you’ve come out of it okay and your kid’s healthy and you’re, you managed to keep your family together and be able to support your family, and then being told that is just like, wow, how did that happen? So that was a very difficult time.
[00:21:26] Carole Blueweiss: Yeah. I imagine, like that’s the last thing you ever expected to hear.
[00:21:30] Lisa Greer: Right. And I wanted to say that to your listeners because if anybody else, I’m sure it’s not an isolated case. There are weird things that happen as kids grow up and they deal with things differently.
[00:21:40] One of my kids ran screaming out of the hospital because she couldn’t stand seeing her sister like that. And she’s totally cool with everything medical now and she doesn’t really know why she did it, but she was a teenager and that’s what she did. So it’s fascinating seeing how everybody responded in their own way. And a lot of it was based on their own background and their age.
[00:22:00] Carole Blueweiss: Yeah. Yeah. And it affects different people differently. Right? So, just knowing that I think is helpful. There’s no right way or wrong way.
[00:22:11] Lisa Greer: Yeah.
[00:22:11] Carole Blueweiss: I wanted to ask you about a quote that you actually started your book with. It’s a quote by Christopher Penn. “Transparency is the currency of trust.” Why did you choose that?
[00:22:22] Lisa Greer: One of the biggest issues in the world of philanthropy and in giving, charitable fundraising, is trust. And there’s different organizations that do a trust report periodically. Every year, every two years. And the level of trust, I think this is an issue in our country as well, but related to philanthropy, that seems to be a big issue for givers.
[00:22:45] People who want to give because they’re afraid. And the biggest question I get from prospective donors is, how do I know if this organization is legit? They always say it the same way. How do I know if it’s legit? Either something bad will be done with it or the person will just not do what they were supposed to do.
[00:23:00] And so what I was trying to convey by putting the quote there is that a lot of that has to do with things being transparent, and if there’s transparency, and if you’re donors, and if you know both the good, the bad, the ugly, all of that about an organization. I mean, you don’t have to tell them every little teeny thing, but generally how you’re doing, you’re actually going to develop more trust.
[00:23:22] For example, I was just writing a piece about this, that if you go and someone’s asking you for money, and you say, tell me how your organization’s doing. And they say everything’s great. We’re wonderful. We just keep growing and growing. Everything’s wonderful. And say, okay, but where are the, what we sometimes call pain points, you know, where are the areas that are an issue?
[00:23:40] And they say, oh, you know, really nothing. We’re doing just great. Because they’re afraid that if you say something bad, then you’re not gonna give. And it’s actually completely the opposite because if someone tells me that everything’s peachy keen and fine, I think they’re lying because nobody has everything that’s peachy keen and fine. There’s always something that can be done better.
[00:23:59] Most fundraisers do not practice their job in that way. They’re more inclined to, and I think they’re probably told by the organizations, don’t ever say anything negative, but if someone says to me, you know, all this is going great, but we have this one issue that’s really tough, that we’re working on, A, I’m gonna trust them a million times more, and B, I’m gonna ask how I can help them.
[00:24:21] And so they don’t even have to say, I need money, because it’s gonna be clear they need money because they’ve got this problem or they need a referral or resource. So that is a very basic change that I’m trying to make in that world, and I think it will make a world of difference as people start realizing that makes a whole lot more sense.
[00:24:42] Carole Blueweiss: Hmm. That’s really interesting. One reason I ask that question is because me being in healthcare, I found that quote to be very transferable to that field as well. So I wonder, in your experience with transparency in your medical team, how do you decipher that in terms of what you experienced, good and bad?
[00:25:00] Lisa Greer: Yeah. I do think there’s a lot that happens in medicine. With my daughter’s situation, I feel like they were pretty honest with us. There were some things that some of the doctors told us that they were certain would go a certain way and they didn’t. And I think that’s a medical profession thing. They want to instill confidence in you so that you do trust them.
[00:25:21] And I did. But years later, we’ve had other doctors and that’s also a thing, is that we also learn that doctors don’t want to say anything bad about another doctor, but they do sometimes say, oh, well, you know, you really should have never had that particular surgery. And it makes you feel pretty crappy at that point.
[00:25:37] I always just think it’s hindsight is 20/20 and people have different opinions. And one of the neat things about medicine is that, especially surgical stuff, is that new technology comes out all the time, so things that seem obvious that you could do a certain way today, you might not have been able to do at all 10 years ago.
[00:25:52] So that’s how I rationalize that. I never felt belittled by the doctors. I did feel like they had some blind spots, especially having a young teenager. There’s a lot of stuff in the medical world that is catering to kids and there’s a lot of things that cater to adults, but there’s not a lot that caters to teenagers, that’s really in between.
[00:26:14] So I had to take my 15-year-old now to a doctor’s appointment a few days ago, and she had to have some type of test and it was at the hospital clinical kind of thing. I wanted her to go to a big person doctor and they said, no, she’s 15. You have to wait till you’re 18. So I said, okay, fine. The only other option was a pediatric doctor, so we went the pediatric doctor. He was great.
[00:26:35] He was very respectful and wonderful. But the room was clearly designed for a 3-year-old, and so we just laughed at it. But it was like you have one or the other. And that’s pretty striking to me that there’s plenty of teenagers or people, let’s say between 10 and 18 and 10 and 17, and they’re just caught in the middle.
[00:26:53] And when my daughter got out of a second big surgery, she was 15 at that point. I remember at the doctor had give me a couple different choices of hospitals, and I chose the one that had a new children’s hospital within a bigger hospital because they evidently had desktop computers and that kind of thing, and a lot of tech stuff that the kids could use while they were recovering in the hospital, could go in their wheelchair, whatever.
[00:27:12] And we were in recovery and I said, oh, we’re gonna go back. And I, so a few days before, I showed my daughter all the neat things online that this part had and that she was gonna go to this new pediatric thing and they had all this stuff for teenagers. And when we were in recovery, she says, oh, we have to wait a little longer because we’re waiting for a room.
[00:27:28] I said, oh, it’s okay. I said, but we’re so excited we get to go to this fabulous new room. And they said, oh no, you know, we really don’t have enough rooms for kids who are older, so you’ll have to go in the adult room, which was a completely different experience and horrible actually. So it was, that’s been made very clear to me over and over again, that kind of missing piece in medicine.
[00:27:50] Carole Blueweiss: You’d think there would be a specialty, right? Because definitely kids change. Like an adolescent specialty in medicine.
[00:27:57] Lisa Greer: Right? I don’t know if that even exists. My son developed epilepsy a few years ago, and it’s adolescent-onset epilepsy, which is a little bit different than the kind that you have when you’re baby.
[00:28:06] And they have an emergency medicine they tell you about. He was, I think he was maybe 12 when he was diagnosed. And the emergency medicine is something that you basically stick this thing in their butt and push this button. And he’s a 12-year-old boy. He’s not very excited about that. And I take him to, and he had this particular thing, they’ve now changed the medicine and there’s this alternate that you just basically use like an inhaler in your nose.
[00:28:31] But on a field trip when he was 13 years old, he’s in middle school. And I said, oh, but if there’s an emergency, you need to do this thing and you actually have to pull down his pants. He looked at me like I was crazy. Like, I don’t know if we’re comfortable doing that. And, you know, no one talks about that was just the way it was.
[00:28:49] Carole Blueweiss: Wow. That’s a whole nother challenge that you had as a mom having, is that one of the twins that?
[00:28:54] Lisa Greer: Yes.
[00:28:57] Carole Blueweiss: And how have you managed that situation? My listeners might be curious if many of them maybe are dealing with, I know there’s lots of kinds of epilepsy, but the one in particular that you mentioned is developed later in life. How did you start to manage that diagnosis?
[00:29:12] Lisa Greer: Yeah, it came from left field. We had no signs of it before, no anything. Kind of similar to my daughters as it just sort of happened one day and we were getting ready for a robotics competition and I didn’t know why he wasn’t ready to go in the morning, and I said to my daughter, his twin sister, I said, can you go check on him because it’s time to go. And she came down and she said he’s laying on the floor, he refuses to get up, he won’t talk, and he’s flopping around like a fish. And that’s, of course, my mind went immediately.
[00:29:42] I didn’t know a lot about epilepsy, but that part sounded familiar. And sure enough, he had had an epileptic seizure. He had fallen, tried to get out of bed, didn’t know what was happening, fell against his dresser, had a concussion, and it was pretty crazy. But, because of the past situations and my husband, I knew how to work with hospitals and obviously we called an ambulance and all that kind of thing.
[00:30:02] But, the biggest thing I learned there because lots and lots of people have epilepsy and this I’d also like to tell your listeners is that first of all, we had to go to different doctors before we found the right doctor. Plus we had to have somebody who would talk to him like an adolescent, like we just talked about.
[00:30:18] It took about two years and three different doctors for us to find the right person. He then developed migraines maybe a year after that, and all of a sudden one day he just said, I can’t see out of one of my eyes. And of course after having another kid with cancer, I was freaked out and turned out it was a migraine.
[00:30:33] And then there’s a connection between migraines and epilepsy, but there’s different doctors that handle those different parts that, so it’s not just a neurologist. And so I had to learn about all the different levels of neurologists and how that all worked. But it was, it…I think having the right doctor for that was really important.
[00:30:51] Now we do most of the interactions with the doctor online, which also for a teenager is much more comfortable. He didn’t want to talk at the beginning, but that’s been really awesome. And also there are lots of people with epilepsy, so it’s easier to find somebody to talk to about it, so that in that way it’s completely different than my daughter’s situation.
[00:31:09] The part that I found absolutely shocking, what I think a lot of us were told when we were younger, and you hear about epilepsy in the community, I’d always heard you put something in their mouth so they don’t bite their tongue. Evidently, that’s been proven to be dangerous to do, so you’re not supposed to put anything in their mouth.
[00:31:24] And I thought, oh, okay. That’s interesting. So sort of like, you know, when you have a baby and they say, put them on their stomach or put them on their side or whatever. So this is do not put anything in their mouth. Let them go through their thing. Just make sure they’re laying down so they won’t hit anything and hurt themself.
[00:31:38] So I said, okay, fine. And now I found out, what I didn’t know is that when I went to his teachers, when he was in, he was like seventh grade and he was going on a field trip. And I just assumed that all of the teachers would know that because they must know basic. I mean, I think they said one out of, I think it’s one out of every 20 kids or something has epilepsy, so there’s gotta be many others in the school.
[00:32:02] And it turned out they didn’t know that. And that really scared me that he was about to go on a field trip with different teachers. And I guess that was a faulty assumption on my part. So we had to very quickly put something together and make sure the teachers were trained. And yes, the district said they were supposed to be trained, but they weren’t.
[00:32:17] And it could have caused a real problem. So for anybody who’s listening who has a kid with epilepsy or knows somebody, I think it’s super, super important to make sure that teachers, and if they go on a trip and field trips and those kinds of things, that they’re aware of just the basics of how to protect a kid who has a seizure. And it’s not complicated, it’s just you need to either be told or you weren’t told.
[00:32:39] Carole Blueweiss: I think what you’re saying is, and it’s interesting for me to hear that you don’t want to assume that teachers are trained in all kinds of things that maybe aren’t a typical condition. Because these days, especially with shortages of staff and training, they might not actually have it.
[00:32:56] Lisa Greer: Right. I’m allergic to shellfish. I would like to believe that every restaurant has an EpiPen or knows at least how to administer it. Or every clinic I would go to would, and I can’t assume that, and I assume that people would know basics about CPR and I realized, guess what? And I think you’re absolutely right, I think with the issues about staffing now, it’s become even more of a concern. And so if your kid has something, you just need to find out is that something that’s generally people understand at that place or they don’t. So it was, it’s pretty surprising to me.
[00:33:31] Carole Blueweiss: What would you like to tell healthcare workers about? Sometimes they need to hear the honest truth. And you’re certainly an honest person. What do you think they could pay attention to more that maybe they’re not in your experience, and maybe that’s not a fair question.
[00:33:45] Lisa Greer: Well, no, I think it’s funny. I was reading a story yesterday talking about people who had been patients and overheard medical staff at a hospital making fun of them, conversations they weren’t supposed to hear.
[00:33:56] Or, oh, that mom’s crazy, she’s overdoing it with her kid. Or, oh, that kid just keeps whining and it’s all fake, things like that. I had a hard time reading it myself and but then there were some other people talking, saying that this is not the norm and there’s always some bad eggs. I was able to kind of put that to bed in my mind, thinking that, but because you do, when you’re in a hospital with a kid, you do go all mama bear on them.
[00:34:19] That’s just what people do and I don’t care what they say. I don’t care what they think of me. I just need to protect my kid. But that doesn’t mean that you’re rude to people. I had one point where my daughter was coughing a whole lot of blood, sorry to be graphic. And the nurse came in and thought I was pain in the ass, and she basically threw a towel at me and a bucket and said, here, walked away.
[00:34:37] And I was like, wow. That’s incredible. So for the healthcare professionals out there, if you have patient interaction, don’t do that. I think it’s the same thing as what I do in fundraising. I tell people in fundraising, don’t think of this other person, the donor, as an alien, and that you’re somehow this other type of human, or you’re the human and they’re the alien, whatever.
[00:34:58] And that you can’t talk to each other because you’re so different. And I think it’s the same thing with the medical professionals. I think that, you know, don’t think of a patient as an alien. You could be the patient yourself anytime. And there’s that, but that these are just humans, just like you and everybody.
[00:35:14] There’s all different types of humans and there’s all different types of you. But don’t make assumptions in either case. Don’t make assumptions about the other person because you really don’t know and you don’t know what the background is. You don’t know what they’ve been through. You don’t know what their level of understanding is. And the way to solve that in both working with a child in a healthcare setting and also in philanthropy is to just ask.
[00:35:37] And if the nurses just said, hey, tell me a little bit about how did this all happen, and where are you at and are you familiar with hospitals? Have you been in and out? And they’d have a little perspective of how to work with me as opposed to just assuming that you’re just a pain in the butt. Something like that. I think that’s a lesson for everybody to think about.
[00:35:54] Carole Blueweiss: First of all, your honesty when it comes to talking money and giving and receiving, well, I haven’t had a lot of experience listening to people talk about that in such an honest way, and so I really appreciated that honesty. And I wonder how much of that in terms of the philanthropy world and giving money, is related to also the idea of developing a relationship with the people and just the idea of how important it is to really get to know the person also relates to what you’re saying about getting to know your patient, even though everyone’s overworked, but how important that is, that relationship.
[00:36:36] Lisa Greer: It’s super important. And on the professional side, I think it makes your job more gratifying and pleasant if you have some insight into what they’re about and what their experiences have been.
[00:36:45] If you ask somebody, have you had a lot of experience in a hospital like the people with the blanket, and they said, no, we really haven’t. We’ve never been in a hospital. Our kids never been in a hospital before. Then you know they might not know that you can ask for a warm blanket, but if they say, yes, we’ve been in and out, you know you don’t have to talk to them about blankets because of course they would know that.
[00:37:02] But how are you gonna know that if you don’t ask? And philanthropy is the same thing. And how do you know that development and advancement mean that’s a fundraiser? I didn’t know that. But if all they had done is asked and said, have you been involved in this a long time? And I have to tell you that in both cases, medical or in philanthropy, just the fact that somebody’s asking you that question and showing that they care about you in that way, that they wanna get some perspective on you to do their job better, makes you much more likely to engage with them and tell them how you feel.
[00:37:34] Carole Blueweiss: Which is half the story in terms of diagnosing sometimes and also prognosis. If you have a patient that’s relaxed and trusting, there are studies that show that that goes a long way to healing faster and getting people out of the hospital quicker.
[00:37:47] Lisa Greer: This isn’t rocket science, right? It seems like it’s human nature, but for some reason, I think you’re right, might be because people are rushed or people just don’t wanna feel, they are gonna get that connected.
[00:37:56] And you always see things about homeless people and you say, how are you? Let’s talk for a moment. That’s priceless. And so I think medical professionals, and I think that fundraisers should do the same thing. I suggested in a lot of articles during Covid have the fundraisers just call some of these people or send them an email and say, how are you really, how are you doing during Covid? And that’s it. Not give me money, please now, but how are you doing?
[00:38:18] And that makes me as a donor much more likely to wanna give them money. And if somebody says in a hospital, how are you doing, mom? That means a lot to me. And that does happen sometimes and every single time it happens, I just love it. I’m like, oh boy, I feel a connection to this person. They really care.
[00:38:34] Carole Blueweiss: That’s why I think the book is so revelatory that if someone actually really sincerely is curious about you and wants to know more, that that goes a long way for what you’re trying to do with them, whether it’s healing or asking for something.
[00:38:48] Lisa Greer: That’s right, and I hope that’s something that everybody’s hearing because I think it’s really important. All sorts of things will run better if people just think about taking a moment and asking.
[00:38:57] Carole Blueweiss: It was very nice to read about the place in Los Angeles where you’re very involved. Cedars-Sinai?
[00:39:03] Lisa Greer: A lot of this research is done at Cedars and other hospitals. They’re coming up with all sorts of interesting things. The department that we founded, the research lab, started with one person. It now is 25 full-time people, and they created all sorts of personalized medicine. It’s pretty exciting.
[00:39:18] Carole Blueweiss: Is there anything I haven’t asked you that you’d like me to ask or that you’d like to say?
[00:39:21] Lisa Greer: I don’t think so, but this has been really interesting, so thank you so much. I have not had a conversation like this before, so it’s been really awesome.
[00:39:30] Carole Blueweiss: For me, too. This has been awesome. Thank you so much for joining me on Wisdom Shared.
[00:39:38] If anybody wants to get in touch with you, what’s the best way to do that?
[00:39:42] Lisa Greer: The best way is just to go to lisagreer.com, L I S A G R E E R .com, and that has previous podcasts on it. It shows how to sign up for our newsletter. It tells you how to get the book, how to get in touch with me, all those kinds of things. So that is probably the easiest way of all.
[00:39:58] And if anyone’s interested in the philanthropy side, my website, my blog, a newsletter is at philanthropy451.com, and you can just sign up there. And then for the other non-profit things, myFace, it’s myface.org and, and also these foundations, Crohn’s and Colitis Foundation, the Epilepsy Foundation, they have lots and lots of resources and information that’s really good.
[00:40:25] Carole Blueweiss: I hope you enjoyed that episode as much as I did. While editing this episode and the introduction, my mother went to the hospital and I had all of Lisa’s ideas in my head. Reflecting on what Lisa shared with me in the interview, I thought about how my experience was with my mother in the hospital.
[00:40:45] Honestly and gratefully, our hospital experience went just how Lisa would’ve envisioned an ideal hospital experience to go. One that showed caring, listening, transparency, and connection. The physicians assistants, the nurses, the RNs, the doctors, the transport team, the people who came to clean the room, and the people who came to bring the food, all of them paid attention to my mom.
[00:41:10] They asked my mother how she was doing. They seemed to really care. And the different medical teams introduced themselves to me and asked me questions, and I could tell they were listening. They explained things very clearly about what was going on with my mother, and they wanted me to understand, so I knew exactly what Lisa was talking about when it actually works and how it makes you feel when the medical staff ask you, how do you feel? What is going on? Tell me a story about yourself.
[00:41:38] And that’s exactly what the staff at New York Presbyterian Hospital did with my mom. This not so rocket science made all the difference in the world. Some of my other takeaways from this episode are health trauma doesn’t stay buried in the past. It stays with you.
[00:41:55] It’s important to find the right doctor. Online resources and support can be helpful, but it can also be very confusing. The healthcare atmosphere can be intimidating, but it shouldn’t stop you from asking what you need and what you want. Transparency is the currency of trust, and that applies across all realms.
[00:42:17] How you treat people has a lasting impression. Making a human connection is the most important thing anyone can do, whether it’s asking someone for a donation or treating them in the hospital.
[00:42:34] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to careoleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.
In this episode, we meet Patty Braendel, a special education teacher who is an adoptive mom, a birth mom, and also a foster mom. We hear about her journey to parenthood with all its ups and downs and learn how her experiences as a parent have helped her work in special education.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/6gINmxyiQ5o
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[00:00:00] Patty Braendel: With adoption, there’s brokenness. And with foster care, there’s brokenness. But out of that can come a beautiful putting together of lives in a way that wasn’t expected. I couldn’t think of anything other than having the kids that I have. So, I don’t look back and go, ugh, I just wish I had four biological children. We don’t think like that. Like we have who we have, and they were meant to be in our family.
[00:00:31] Carole Blueweiss: That was Patty Braendel.
[00:00:34] Patty Braendel: I am short, sort of blonde hair. I have two different colored eyes, brown and blue.
[00:00:39] Carole Blueweiss: You heard that right. Patty has one blue eye and one brown eye. I saw those eyes for myself. Eric and Patty are both white and they have four children.
[00:00:52] Patty Braendel: Emily is same height as me. When you look at her, you can tell she’s Thai. Basically the same size in clothes and everything. It’s funny. And then Luke, five-seven, super curly hair, brown eyes. Luke is brown. Then we have Gunther, who is six-one, is a carbon copy of his father. Looks just like him. Which I say is so not fair because I gave birth to one child, and he does not look like me at all.
[00:01:18] Then Hannah is not even five feet, and I think she’s done growing. She has super straight brown hair and has the very traditional Chinese-shaped face, her eyes and everything. Hannah has had a hard time with that growing up, looking different than her sister. We’ve had plenty of math jokes and people assuming that our Asian daughters are very good in math.
[00:01:42] Hannah does not like it. It is not her thing. When they were two, three, and four, we spent our summers at the pool. Cuz that’s what you do. You get the kids tired, you go to the pool. And so Gunther would get really tan. I’d have people asking me if they were triplets. No, no. They’re all very different in their own ways.
[00:02:01] Do I need to show you Gunther’s bottom to show you that he’s white? Because one time someone asked me if he was biracial, and I’m like, no. People say the craziest things. So, we all definitely look very different from one another. We’re proud of that. We like that. We keep people guessing, I guess you could say.
[00:02:19] Carole Blueweiss: Welcome to Wisdom Shared, where parents and the children are the experts, and where connection inspires change. My name is Carole Blueweiss, and yes, I have two blue eyes. Today, Patty Braendel is my special guest. One warm night, we were watching our two sons play baseball, and I couldn’t help but notice that on Patty’s lap sat this beautiful little Black girl with pigtails. She looked like she was about two years old. Yeah, she had me guessing all right. I admit it.
[00:02:55] Welcome to Wisdom Shared, Patty.
[00:02:58] Patty Braendel: Thank you for having me. I’m so happy to be here.
[00:03:01] Carole Blueweiss: Who is Patty?
[00:03:02] Patty Braendel: Who is Patty? Let’s start with I’m a wife, I’m a mother, and I’m a special education teacher. Been married for 25 years. I have four children. I’m an adoptive mom, a biological mom, and then I’m also a foster mom, so I have one foster baby with me now.
[00:03:20] And then I am in the special education field, and I teach at an elementary school close by home. When we had unexplained infertility, it was Eric who said, well, we will adopt then. And I was like, I don’t know if that’s the answer. It took me a while. With Emily, it happened really fast. We got a call and two weeks later she was in our home.
[00:03:40] She was so easy and so wonderful and so loving that it wasn’t scary at all. Like I know my mom was super concerned about it. Cuz you always will get the questions, what if they take them away from you? And of course, you have to know about how adoption works. We weren’t worried about it past a certain time, but I know my family was worried about that.
[00:04:01] It’s hard for people to open their hearts to a baby that could potentially be taken from them. So brought Emily home. She’s 20 years old now. And then Luke is 10 and a half months younger than Emily. So, we had those two. And then I got pregnant with Gunther. So, when I had Gunther, I had a one and a two-year-old at home. So, I had three under three when I had Gunther.
[00:04:24] Carole Blueweiss: There’s that aspect of adopting a child and that fear of them being taken away.
[00:04:29] Patty Braendel: Mm-hmm.
[00:04:30] Carole Blueweiss: And then what about the fear of getting attached to these kids that are foster kids, that you’re gonna have to give them away.
[00:04:37] Patty Braendel: With the foster children that we have, like we’re here at this time right now to be a safe place for them. They need to be bonded to someone. Humans need that, and so we want to provide that attachment and that bonding that they would otherwise not have. If you think about it, like bounce from home to home or even like in a group home, in a not safe place. We’re willing to put ourselves out there so that those kids have that chance.
[00:05:06] We had to say goodbye to two different sets of long-term placements. Both were hard to say goodbye to, but we know that we did our part in what we could do. And you always accept that you’re not a decision maker in the process. Foster parents do not make any decisions. We can only be an advocate for them.
[00:05:26] And just hope that the people who are in charge of their case, that they’re doing what’s right for them. We can do our part and we know we have a very specific part. And then past that, we know there isn’t anything sometimes we can do. So, my kids have gotten attached to certain kids. I know my oldest daughter, Emily, had a really hard time when one of the little girls left.
[00:05:48] That was also just an opportunity for Emily to learn and to grow, too. So, we’d look at it like that. It’s not easy and you’re sad and you do hurt, but is it okay? It’s okay for me. I’m an adult. I can hurt in order for these children to have a safe place and to have loving people in their lives for that time.
[00:06:09] Carole Blueweiss: At one point, did you have six kids in your house?
[00:06:11] Patty Braendel: I think the most we’ve had is seven. Lots of Costco runs. And I was home full time with them, so I was taking care of all of them. Luke is 19. He is our second child. We adopted him when he was about two and a half months old.
[00:06:30] Carole Blueweiss: Did he start off in foster care?
[00:06:32] Patty Braendel: No, it was a private adoption. So, he was with his birth mother for the first two and a half months of his life. She was working through whether or not she wanted to place him for adoption or parent him. And we had met her shortly after he was born. Acquaintances and friends had connected us, so we were not working with an agency or even working with an adoption lawyer.
[00:06:58] We got a phone call. We know a birth mother who’s looking for a family. She’s thinking about adoption, and would you be willing to write a letter, send pictures, and meet her? So, she read our letter. We met her and her mom. She was in her twenties. She was still trying to figure out what decision she was gonna make.
[00:07:18] We hadn’t heard from her. We had just assumed that she was not going to place him, at least with us. And then one day out of the blue, I got a phone call and she said, I’m ready. I want you to be Luke’s parents. Will you do that? And we said yes, absolutely. So, we drove up to Northern Virginia. It was about 45 minutes away from where we lived, and we went to their home, and we had a little hello and goodbye type ceremony. She read him a book and gave him gifts and stuff, and then off we went down the road with a little guy that we had never met before and he cried the entire way home, and then he pretty much continued to cry for most of the first year of his life. He came to us a very stressed-out little baby.
[00:08:01] We went through everything. Does he have colic, does he have this? He did have a cleft palette, so we thought maybe that’s why he’s so fussy. He’s on special formula, special bottle. He had surgery at nine months old to have that fixed and he was good to go. He could eat and drink and do everything all of the other little babies could do.
[00:08:19] He was just not very happy. I was home full time with him, with our other daughter who was a year older than him, and he cried so much that when Eric came home from work, it was my time to leave the house because I had heard him cry so much. We really had no idea just how stressed out he was at the time. We were just living it like day to day. Like we didn’t know what to do.
[00:08:44] Luke has been a great, great teacher to us unknowingly. He doesn’t know this, but we have shared this with him. We learned so much from being his parents through a lot of really hard situations. He is not attached to our family emotionally, currently, in a way the other three children are. He just really isn’t. And we did everything we could think of to try and form that bond with him. And we just didn’t. We just know that we did the best that we can. We loved him. We still love him.
[00:09:21] We knew we wanted another girl. We decided to adopt from China, and that is Hannah. Although at the time we thought it would take just a year to adopt her, it ended up from the time we put in our paperwork, it took three years to bring her home.
[00:09:37] Carole Blueweiss: Emily is half Thai and half white.
[00:09:40] Patty Braendel: Yes. Luke is biracial, he’s Black and white. Gunther is just plain white. And Hannah is Chinese.
[00:09:50] Carole Blueweiss: It just sounds so extraordinary to live with such a diverse family. It’s hard enough to raise a family.
[00:09:58] Patty Braendel: Right.
[00:09:58] Carole Blueweiss: That everyone’s similar, and then you have all the caveats of the adoption versus the foster versus born. You must have some interesting stories about how their race, each one of them, maybe they had to deal with life differently.
[00:10:13] Patty Braendel: Yes, of course. I’m white and I have children that do not look like me. So, a lot of the times early on the questions would be, are you the nanny? Are you babysitting? Early on, I would take offense to that because it was just like, no, these are my babies.
[00:10:28] We’ve gotten past that. We’ve had the really awful comments. I was definitely more sensitive to it than Eric ever was. Just different references to the kids’ color of their skin. Comments like, your children are already tan? No, they’re just brown. That’s their color. Different things like that, and you can just see sometimes it’s not even the words that they would say, it’s just how they looked at you. And depending on where I was, which if I was down south, it was different. If I was up north, it was different.
[00:10:57] Carole Blueweiss: What was your actual experience up north versus down south?
[00:11:01] Patty Braendel: It wasn’t received really well down south. I was one time in South Carolina at a McDonald’s, and I had all three of the kids with me, and the lady at the McDonald’s was just very mean to me. I know Luke probably would’ve been fussing at that time. But what I felt was she saw me as a white lady who wasn’t being kind to a boy who was not white, which was not at all what was happening. But you can feel that. You can feel how people are offended or how they’re looking at you. And some of the words, I can’t remember all of what she said to me, but it just was so not nice.
[00:11:35] And then up north, we would get comments. So yes, they’re adopted, but people would actually ask, are they adopted? Right in front of them. Often, they would say, do they know they’re adopted? And of course, they know they’re adopted. Our kids knew from day one that they were adopted. They don’t look like us.
[00:11:54] And just things like that they would say, and if I could have written down every comment, I could write a book. I remember sitting at a restaurant with a really good friend. And she had little kids. And I had little kids. And Luke I think was a baby at the time, and she said it would not be okay for her son to marry a Black woman.
[00:12:15] And I’m sitting there thinking, wow, I’m sitting here with children who are of color and you’re saying in front of me that it would not be okay for your son to marry a Black woman. And I was just like, wow. You’re saying that to me, I’m your friend, and I’m sitting right here with babies that are not all white.
[00:12:36] Just different things like that where you’d just be amazed at how people think. And that would’ve been probably 17 years ago, so not that long ago, but just certain people will surprise you sometimes. And then of course, obviously we got lots of wonderful comments and lots of very kind and loving and understanding people that were just like amazed and just really appreciated people who are willing to go outside of the traditional type family.
[00:13:02] A lot of people would say, oh, they’re so lucky to have you. No, it’s, that’s not it at all. We feel very fortunate to have them. Weren’t out to rescue anyone. We just wanted a family. I wanted to be a mom. He wanted to be a dad, and adoption is how we were able to start our family. We obviously have grown and matured and learned from a lot of different experiences with them, which then helps us with being foster parents.
[00:13:28] Carole Blueweiss: That makes me think that there was that stereotypical attitude or that there’s pity or, no, they’re just human beings just like everybody else. They’re just adopted or.
[00:13:38] Patty Braendel: Right, so they didn’t ask for that to be their story. And I would say there’s brokenness as part of their story, but that doesn’t mean that they have to be viewed as that.
[00:13:51] Carole Blueweiss: What is Luke doing now with his life? It sounds like you’re not in touch with him or?
[00:13:54] Patty Braendel: We are definitely not in touch with him daily. We’ve done so many different things. He was always in therapy or in programs or away in a private school. Different things that we were just hopeful that would help him just make better decisions in life and to be a better version of himself.
[00:14:11] So to back up, he was in a therapeutic wilderness program for about two and a half years. It was in Pennsylvania. They’re living outside in cabins. It’s a lot of hands-on learning. It was all boys and they worked through their issues. We are all part of a team. He would be gone for five weeks. He would come home.
[00:14:32] And it was all part of a process to see if he was making progress on the different goals that he had set to go. And he had to agree to go to this program. You don’t send them there kicking and screaming. They need to buy into it. They need to agree that it’d probably be a good decision to make. We did this before high school.
[00:14:52] We knew where it was headed. It was not gonna be a good situation, and he was making bad choices. And we wanted him to be safe and we wanted to be safe. So, we put him in that program and usually it’s about 18 months long and our son took two and a half years to graduate out. And even the graduation is all a team decision, too.
[00:15:12] It’s do the parents feel that he’s making progress at home? Do the counselors, all of the above, does Luke think that he’s making progress? He came home and I will say when we had the meeting right before graduation, my mom was there, Eric’s parents were there, and we were all sitting in a circle with the director and the counselors, and they asked Luke to speak, and he didn’t speak.
[00:15:33] And I knew. Everybody like went up there super excited. Luke’s finally graduating, he’s coming back. And he didn’t speak, and he didn’t have anything to say, and I knew at that point he probably hadn’t changed, but we were hopeful. So, he came back home, and it didn’t go well. Just decisions that are not okay in our home.
[00:15:52] Carole Blueweiss: Can you give an example just so we can understand?
[00:15:54] Patty Braendel: Let’s see. So, he had zero concern for schoolwork or anything. He had a lot of trouble with any authority. So, he was starting to make decisions like where we couldn’t trust anything that he said. And he had a lot of anger. I don’t wanna be in a home with almost an adult who I don’t feel safe with.
[00:16:15] So a lot of explosive anger at the time, slamming doors or different things like that. And it was escalating to the point where we’re like, is it going to get physical? We don’t want that to happen. We just have certain things like, yeah, if you’re gonna leave the house, we need to know where you’re going, what you’re doing.
[00:16:32] To the extent that teenagers will tell their parents, but he was not doing anything in school, and it was living in a house with a kid who never spoke to us whatsoever. He wouldn’t talk to us. He would not talk to us. So, he’d be in his room, which was in the basement. He wouldn’t speak to us.
[00:16:48] Carole Blueweiss: Was that the case when he was younger, too?
[00:16:50] Patty Braendel: Yeah, a lot of it, yes. But he was always very friendly to family members or strangers, like way more friendly to them. And that’s part of what we’ve learned over the years, especially with foster parenting, is attachment. He didn’t have healthy attachments and kids that don’t have healthy attachments tend to be overly comfortable with strangers or people that are not close to them, and that’s how Luke was.
[00:17:18] And we didn’t know at the time that was what he was struggling with. And just like things like with girls that he’d be dating, we didn’t trust him. We didn’t trust him to treat who he was dating in the right way. We knew him and we were just, we’re trying to raise a gentleman, we’re trying to raise a good human being and he fought us on like everything. We, at the time, we knew he hated living with us.
[00:17:41] We knew he didn’t wanna be around us. So, we said, if you, he’s 17 at the time, we said, if you can find somewhere to go, a friend, some other place, if you want to move out, you’re 17. You’re almost an adult. You can do that. Like we’re not forcing you to stay here. And he had off and on throughout the time that he was in the therapeutic wilderness program, talked about his birth mother and had talked about not liking the fact that he was adopted and not liking his story.
[00:18:13] He didn’t really ever share that with us, and he wouldn’t talk to us about it, even if we tried to talk to him about it. We were not parents that, oh, let’s not talk about the adoption thing. We wanted him to talk about it. We would not have been hurt if he said to us, I didn’t want to be adopted. He didn’t ask for that. He didn’t ask for that to be a part of his story.
[00:18:33] We just wanted to help him work through it. And he felt very abandoned. And so, for him, a huge word for him is abandoned. He in his heart felt abandoned by his parents. So even though Eric and Patty Braendel provided a safe place for him, a loving home, brother and sisters, loved him, everything we could think of, in his heart and in his mind, he was an abandoned child. He was abandoned. And so, he lives that.
[00:19:01] So then therefore, he did not form an attachment with us. So, I offered to help him when he was in the program. We did invite his birth mother over to our house. We had always kept in contact with her, and we said, we think it would be really good if you were to sit down with Luke. He was 16 at the time. And can you please tell him your reasons for placing him? Can you tell him your thoughts, your feelings, what you want for him in life? And she was, of course, willing to do that. We knew what type of person she was. She wanted the best for him.
[00:19:33] She did not want to be a mom on welfare. She didn’t want for him to be raised by a single mom who was gonna struggle every step of the way. She wanted him to have two parents, and she wanted him to have opportunities in life. So, she came to the home, and she sat there with both of us, Eric and I, and Luke. And she explained everything and asked him any question you have, I will answer.
[00:19:59] He didn’t have any questions for her. He did sit there the whole time crying. A lot of times he would just have tears rolling down his face, but he wouldn’t talk. He wouldn’t say anything. She asked him to forgive her, he said right away, yes. And then she even said, you don’t have to forgive right now, but we don’t want it to just be an automatic yes, you need to work through that.
[00:20:19] After that, I think it started in his mind what life should have been like and I should have been with her all along cuz she’s a lovely person and she’s married, she has little girls. And I think he’s thinking, why wasn’t I good enough? So, I think that just drove more of his anger. And so, I said, we know that your birth mom said it would not be a good idea for him to live with her right now. She would not be willing to do that.
[00:20:48] So I said, do you want me to help you find your birth father? And he said yes. Because it had gotten so bad at our house. He just didn’t wanna be there. And so, I located his birth family on his birth father’s side down in Georgia. And I put him in contact with his grandmother and he got a phone call. And really, we were trying to find the birth father, it turns out he was actually living with the grandmother at the time. And he asked could he come live with them? And they said yes right away. We sent him down there for Thanksgiving just to visit. He talked with them further and he had decided by Christmas time he was gonna go live with them. So, he did. We have to help him pack up his stuff and we sent him down there.
[00:21:36] That lasted not very long. Not even a year. It did not go well. And Luke actually was then going into an all-Black high school, an all-Black neighborhood. Just a very different community than what he was used to. So, it was a very different experience for him. And we also think he was also struggling all this time with being biracial.
[00:21:59] Do I identify with being white or being Black? How does that fit? He didn’t know how to work that out. He, I think, always felt like he didn’t know where he fit in. He was in Georgia, and it was a very different environment than what he grew up in. So that didn’t last a full year, but he had turned 18. So, during that whole time, he kept in contact with his birth mother, and I will say the birth mom and the birth dad do not get along. So, there was that whole aspect of it.
[00:22:28] So she had agreed when he turned 18 that he could go live with her. So, he moved up there to Virginia to live with his birth mother. I don’t know how long it was before it fell apart there, too. It did not work out. Just breaking the rules that she had set. And one of the rules that she had was agreements they made is that if you come live with us, you’re gonna be in therapy.
[00:22:51] And I think he would do that for a little bit and then stop. But he was just drinking too much, threatening to harm himself. Just like some really dramatic stuff that he had never done with us. And she decided it wasn’t safe for him to be at the house. So then, He left, and she helped him get hooked up with a group called Hope Mission or Project Hope, I can’t even remember the name of it.
[00:23:13] What they do is they help teenagers in Luke’s situation where they suddenly find themselves homeless. They help them finish high school, find them a job and a place to live. And so, you have to agree to be working to then be a part of the program. And so, they had it all set up and Luke was working, and he was gonna graduate high school and I guess he didn’t want to work anymore, so he was asked to leave the program and he chose to go live at a homeless shelter.
[00:23:44] So he is now, what we’ve last heard, he’s in a homeless shelter in Virginia. But he, we think he’s gonna finish high school. Before Eric put him on a plane to go to Georgia, he was sitting in our living room and I had said to him, is there anything that you would’ve wanted us to do differently? And he said, no.
[00:24:02] And he said it with tears down his face. He’s a very sensitive kid. Eric just looked at him and he tends to listen to Eric differently than he does to me, and he said, Eric just said, can you please finish high school? We just want you to finish high school. Luke said, yes, that’s my intention. In Georgia, I think you can drop out of high school at 16.
[00:24:22] So we knew there was a chance when he went down there that he could just say, I’m done with school. But he has stayed in school, and I think he’s ready to graduate. I think the last time Eric talked to him was about college money or something like that. But he’s not a part of our family in that way.
[00:24:38] So does he call us on holidays? Does he say happy birthday? Happy Mother’s Day, happy Father’s Day? No. He started referring to us as Eric and Patty. So, it’s very strange. I have cried a lot over this. I have been hurt over and over again. Just our hearts have been like shattered by just wanting, like, just pouring everything we could into helping him and loving him. And it just never, I don’t know if the word is clicked or it just never, he just didn’t want to be with us, but he never spoke badly of us either.
[00:25:17] So in the program he was in, most of the kids had many words to say about their parents, whether it was adoptive or not. But one thing the counselors would always tell us is that Luke always spoke very highly of us and had great respect for us, and so, that just helped us know that we really are loving him and trying to provide the best opportunities in life for him, just to be the best version of himself.
[00:25:43] And he just can’t get himself there. It’s not us. When he actually packed up his bags, friends are saying, how could you let him go? How could you let him go? You don’t even know where he is going. And we’re like, he’s basically an adult. And this is what he needs to do. We’re gonna let him do it. We’re not gonna fight him on it.
[00:26:00] I’m not gonna keep him here under protest. And we’re okay with that cuz there’s no holding on to him. He’s gotta go and figure out what it is in life that he wants. And so, going back to how can I foster kids and then let them go? I’ve had a huge example of that with someone that we raised from two months old to 17.
[00:26:20] We had a lot of people in our lives be really hard on us when it came to Luke’s behavior and what was going on with Luke and why isn’t Luke doing this and this and why are you having so much trouble with Luke? My own father-in-law, lovely man, wonderful. I don’t have anything bad to say about my in-laws. I love them. But even them, he one time wrote us a letter saying, I think you need to hug him more. And we were just like amazed. So many people were trying to figure out why is Luke the way he is, and we can assure everyone. I love babies, so of course he was hugged and held and all of that. I look back, could we have held him more? Could I have done what some people do now? Where you wear babies on you all the time? Probably yes, but we just were parenting the way that we parented Emily and the other kids.
[00:27:14] Eric, he was even still talking about fostering, even in the thick of it with Luke. Eric had this brilliant idea. We have more to give, and we have the ability to love more and we can do this. And I’m looking at him like, you really have lost your mind if you think I can take on another whole situation of unknowns and put myself out there again. I am a very sensitive person. I do love deeply, and Eric does too. If there’s a weaker of the two, it would be me. He just kept bringing it up and I would say, no, not now. You’re really gonna ask me this when Luke is going? So, we started fostering while Luke was still in the home.
[00:27:59] As foster parents, we would sometimes do respite, which is taking care of children that are already with a foster home, but the foster parents need a break or they can’t take them out of town with them, just different reasons. At one point, we had a sibling set of three, two of which were children with special needs. We had them for a couple of weeks, and it’s just a matter of saying yes, just to help another family out. We would do that off and on. Those are really short-term placements. We’d also say yes to long term, so you never know when you say yes, you don’t know how long it’s going to be.
[00:28:33] Carole Blueweiss: The plan for the second long-term placement was for Eric and Patty to speak with the foster parents who were taking care of these two brothers and to ask them some questions.
[00:28:43] Patty Braendel: The foster mom that had them just temporarily, she took them in on an emergency basis until they could find a home. That happens, too. She had four of her own kids, too. She just couldn’t do it. But we were told boys doing really well. Very well adjusted, doing well in school. They told us no major behavior issues. They’re not on medication for anything. And so, you learn as you go to sometimes read between the lines. Eric and I have gotten better at that. Reading between the lines, what they don’t say often speaks louder than what they do say.
[00:29:19] We had a very short honeymoon phase with the boys, and that happens most of the time with any placements that you get, where things go really seemingly smooth. They’re really trying to behave. They’re scared. They don’t know what’s going on, and just trying to keep themselves together.
[00:29:37] Carole Blueweiss: The day before the boys were set to arrive, they got a call from the caseworker. And there was a problem.
[00:29:44] Patty Braendel: They had just been to the doctor and the boys had scabies. I had no idea what it was. They were getting medication for it, and would we still be willing to take them? And of course, we’re all like, Google, what is that? What do we do?
[00:29:58] We didn’t wanna say no. When we got to the office and we brought them home, they met the rest of the family. Everybody was running around playing. And it actually was good to have that many kids at the house. The boys had someone to play with, but that night, as we go to get them ready for their first night at our house, both Eric and I had to help them get cleaned up.
[00:30:19] They were seven and eight at the time, and then we both had to help them take an entire tube of this medicated lotion and put it all over them. And I’m sure the boys were totally horrified. They handled it really well. It was bad, and it is very contagious. So, you put them to bed, they slept in it, and then they wake up and then you have to wash everything that they’ve touched.
[00:30:43] So that was the very first night that we got them with scabies, and we were freaking out for several days after, thinking, oh my goodness, I hope it doesn’t spread to all of the other family members. And I don’t know how many weeks it was, but it quickly started to go downhill with one of them, and then we realized, wow, what have we gotten ourself into? These kids have a lot of trauma and they don’t know how to handle themselves.
[00:31:12] Carole Blueweiss: Their behavior started to change. Tell me a little bit about that.
[00:31:15] Patty Braendel: It usually started around bedtime, and they didn’t want to go to bed. They had a hard time falling asleep. They used to always have a TV on. In our home, our children that we raised never had TVs in their room, and it was just a house rule, and it was our house rule, and we weren’t going to change that for anyone. So, they had to learn to fall asleep in the quiet. We read books with them. They were in the same room, and they had a really hard time falling asleep. So quickly, it turned into out of their room a lot, and then it turned into banging on the walls, banging on the floor, slamming the door. So, it was a lot of that negative attention that they wanted, and the more we tried to get them to stay in the room, the more they wanted to not stay in the room. So, we’d have to stay outside of the room and wait until they fall asleep. And it took hours and hours. Meltdown after meltdown. A lot of screaming, a lot of banging of the door, all just stuff like that. And they can’t explain to you why they’re doing what they’re doing. They’re just doing it. Once we get one settled down, the other one would start. So, it was a lot of work for both Eric and I.
[00:32:23] Carole Blueweiss: And what was happening with your other kids at that time?
[00:32:26] Patty Braendel: Emily, Gunther, and Hannah were actually used to that because Luke had gone through some of that same type of stuff growing up, so they were not at all surprised by the tantruming. So actually, they handled it really well.
[00:32:44] Carole Blueweiss: Do you get training on how to deal with that?
[00:32:46] Patty Braendel: We just finished a 16-hour course on trauma-informed parenting, and that would’ve been a class that would’ve been really super helpful for us to have had way back when we started. Just learning about the term behavior is communication, so they’re trying to communicate something to you.
[00:33:06] They don’t always know what they’re trying to communicate, but it is a way of communication. And just how to see children through the trauma lens. You’re not going to see these children in the same way that you look at the children that you’ve raised from day one. So just learning how to see their behaviors and what is going on from a different perspective.
[00:33:29] And to be able to handle that, incredible amount of patience has to be involved. We didn’t always handle it perfectly by any means. A lot of times we had no idea how to handle it, but we did our best. Kids are really only supposed to be in foster care for a year, but you always hear the stories that it goes longer because they can extend, and so we had them for so long.
[00:33:51] They had family members fighting to get them, but they were all denied through the court process. They were all denied. So of course, they were asking us if we would adopt them, and we said we do not feel that this is the right fit for us. We felt that they needed to be in a different area of where we were living, for them to have chance at being able to start a new life, because at the time it must have been, yeah, nine and ten, so they were six and eight when they came with us. They had to be able to start over in a whole new family and where we lived, it would be easy for them to bump into people that knew them or were related to them, and that was really hard for them. So, they found another family that was willing to adopt them, and it was a special education teacher.
[00:34:41] They were super excited. We did the transition of short meetings, then overnights and all of that, and the boys were super excited. They were going to live in a home on five acres. These boys were outdoors boys. They raced four wheelers. But these boys were doing this at a very young age. They were a racing family. That’s where they came from. So, then they were brought to our house and we’re, no, we don’t do any of that. So that was a very hard transition for them. So, we thought they found a really good fit for the boys. And here Eric and I aren’t sitting across the table with the adoptive family trying to tell them everything we could about the boys.
[00:35:21] What do you wanna know? I can tell you this is where they struggle, all of the above, and they were like, we got it. No problem. We got it. Eric picked up on it before I did, that they just had an idea of what they thought they needed to do.
[00:35:37] Carole Blueweiss: When you say they weren’t receptive, you mean that you intuitively felt like they weren’t really listening?
[00:35:42] Patty Braendel: Right. Yep. Yeah, they didn’t want to know what worked and didn’t work for the boys. I think honestly, what ended up happening was they thought we had fixed them and were sending to them two very well-adjusted boys, which at the time with us, they really were. But that was after us going through so much with them, and they had finally settled in.
[00:36:06] They felt that they could handle what they were getting into. I found out that it did not go well, and they gave up on them, so then they were back in the system again. Fast forward to like a year after that, another couple is adopting them, and I’m hopeful, and I think they’re doing really well. We keep in contact with the foster mom who had originally had their other two siblings, and so she adopted their little sister. Their older brother was adopted by another foster mom. So, I think they’ve all been adopted at this point. So that was really hard for us, makes it a lot easier.
[00:36:47] Carole Blueweiss: What do you mean? What do you mean?
[00:36:48] Patty Braendel: So, we have a certain set of standards for how we would raise a child, what would be acceptable to raise them in the environment, what we provide for them, and what is, what the state has to require of a biological parent in order to get their children back. It has to be really low.
[00:37:10] Because, and one lawyer said if the standards were such, not the standards they are currently, he said something to the effect of, let me get my bus out. I could drive around and be picking up busloads of kids right now from their homes. And they’d be in foster care. So, it’s not how my kids’ grandparents are. But do they love those children? Yes. Would they raise them how we would raise them? No. But would they be safe and okay? Yes. They just didn’t win out in court and it’s sad to watch. And as a foster parent, there isn’t anything you could do about that. So, you just sit back and watch it all play out.
[00:37:47] Carole Blueweiss: So, are you saying that it’s not in the children’s best interest to go to that situation or that it is?
[00:37:54] Patty Braendel: Sometimes it is, but state doesn’t agree. Like it’s interesting. So, in this situation with these boys, extenuating circumstances if you have a criminal record from whenever ago, sometimes that can just be something that excludes you from getting the children, and that’s really sad because sometimes people change, and that could have happened years ago.
[00:38:19] Certain things like that, or just education wise. So, the boys had a lot of trauma. They had a lot of triggers. They had a lot of behaviors that were troubling that whoever was going to care for them needed to know how to handle those. But the grandparents didn’t understand that. But it’s not because they didn’t want to understand, it’s because they have not been educated in that way.
[00:38:42] Carole Blueweiss: You’re saying, what do these grandparents have to learn? Let’s teach them.
[00:38:45] Patty Braendel: Yeah. And if they’re willing, why not? And they would be safe with them. I felt so bad because he was so attached to his grandfather. His name was Papi. He loved him and actually he was like a carbon copy of him, and he had this very rare type of condition that he was of lower IQ. He had, what it was is some kind of chromosome issue. He had a bunch of extra little folds in his brain, and it just caused some learning disabilities. When you met him, you would know something’s not quite right with how his, let’s say executive functioning. But when you meet his grandfather, he’s a carbon copy of him.
[00:39:29] So they’re not gonna notice that something’s different about him because he’s very much like him. So, it’s things like that where that could be seen as a negative on the biological family’s part, but they didn’t know. I had to help him get all of the services that he needed in the school system, whereas they were just like, oh, he just has a speech impediment. It was so much more than that. So, things like that can be held against parents, but sometimes the parents don’t know. They just don’t know. And I’m talking about grandparents in this situation.
[00:40:00] Carole Blueweiss: So, when you were telling the story, I was trying to figure out are you saying that the state, the standards are so low that they will let the child go back no matter how terrible the circumstances?
[00:40:12] Patty Braendel: Yes.
[00:40:12] Carole Blueweiss: Which is what we hear in the news.
[00:40:13] Patty Braendel: Mm-hmm.
[00:40:13] Carole Blueweiss: Or are you saying that the circumstances might not be perfect, but they could be good enough. But still, the state is just being so ridiculously nitpicky that they’re not gonna let that child go to where probably they would be better off?
[00:40:27] Patty Braendel: The first case we ever had, absolutely, we were very shocked that they sent a four and a two-year-old back home. We were like, wow, you are really sending them back? Yes, they did. Then you fast forward to the next case that we have. We’re thinking, wow, what’s it gonna take for them to get their kids back? So, it’s amazing how they say there are standards and guidelines and rules, but our eyes have been open to so many different situations. And so, when you go into this, you just honestly never know what’s gonna happen.
[00:40:59] Carole Blueweiss: It isn’t consistent one way or the other. It can go either way.
[00:41:03] Patty Braendel: It can go either way. And just like with the little girl we have right now where we thought that she was gonna reunified, turns out, no, she’s not. They’re changing it to adoption. So here we are again in a situation where they’ve asked us, will you adopt her? And we are not sure that is the right choice. We’re still waiting to see if they have a relative placement. They don’t tell us a lot. A lot of the times they don’t tell us anything, and so we’re still waiting. But meanwhile, we have a sweet little girl in our home that loves us, is very much attached to us, and I will be sad for her to have to transition to a new unknown family member.
[00:41:51] But then if that’s where she’s supposed to be, we would want her to be with her family member. So that’s a situation that we’re with now. Like Mom just did not do what she should do in the timeline that was given to her, and they’ve decided they’re not going to give her any more time. And so, we’re waiting to see if she’ll go to the paternal grandmother.
[00:42:15] We don’t know, and she just loves us. Both Eric and I, we talk about it. We just, we feel bad. She very much thinks that she’s our child. If she does move, she will go through a transition. She’ll be introduced to the family members. She’ll spend time, and so they try to do it slow, but then slow sometimes is hard for them to handle depending on the kids’ age.
[00:42:39] We’re sitting here waiting to see. What are they gonna do? And they don’t always tell us. They definitely don’t ask our opinion. I had a year break of being a foster parent and he signed us up again for training cuz we had to go through the training all over again in Florida cuz it’s different state by state.
[00:42:54] So I’m like, I’ve just started working for the first time in the school system in special education and now you wanna foster again. You’re crazy again. He’s like, we can do it. We can definitely do it. And so, we are. But I understand it’s a whole different world. It’s not easy, but I guess Eric and I go back to, and it’s mostly Eric who would say this, but if not us, then who?
[00:43:22] So if not us, then who’s going to do it? If we take our number off of the do not call list right now, which we’re on a do not call list because we have a placement and we are not accepting any other placements right now. If we were to just take our number, go ahead and call us, our phone would be ringing. The need is so great.
[00:43:41] I was sitting on a Friday night with Eric. We had two placements. Then he’s getting text messages from the emergency number saying we have three kids that need a home for the night. And I’m like, Eric, don’t respond. We cannot take three more children into our home. There’s just no way. Where are they going to sleep? What are we going to do? At first, he goes, okay, fine. All right, I’ll tell them no. Then he looks at me like not even 10 minutes later, and he looks at me and says, are you sure? And so, I’m like, yeah, I’m sure, like you’re crazy. So, he texted them back and within the 10 minutes or however long actually, he said yes, we can do it. We will make it work. We’ll figure out a situation for where people are sleeping. I’m pretty sure he probably volunteered Hannah and Gunther to give up their beds. And within that timeframe, he got a call back from the on-call person and they said they were actually able to put a safety plan in place for the children to stay in the home that they were currently in.
[00:44:43] And that is code for whoever was the abuser or the aggressor in the situation, that person left. And so, they were able to put a safety plan in place where the kids could stay in the home with the other parent or family member, and the one that was causing the issue was removed. So, I was like, phew, okay, good.
[00:45:05] At least they’re staying so I can sleep tonight. You know, you have a hard time saying no, and then you wonder what’s happened to the children. And Eric’s, if they don’t find a home, they’re just gonna be sitting up at Safe Children’s just in the office, just waiting for a home all through the night. And I said, I do know that, but I don’t wanna think about it. Because that is what happens. If they don’t have a home, the kids will go up to the office and sit in there. And they will stay there until they find a place or a shelter or a group home. And it’s super hard to think about but that is what happens. So, we can do our small part.
[00:45:43] Carole Blueweiss: And now back to the beginning. Remember when I said how Patty had me guessing cuz she had this two-year-old Black girl on her lap while we were watching our sons play baseball? Well, I got to ask her to please tell me the story of this child and why she was with Patty and Eric at all the baseball games.
[00:46:00] Patty Braendel: She is going to be two in September. She came to us when she was about nine months old. She’s Black and she is full of energy, full of life. Her sister came with her. She was very much parentified. That means sister was raising baby. So, they take on the role of parent, and you can tell that really very easily when you’re around the two of them. So, imagine a nine, 10-year-old with a baby on her hip and she’s doing everything for that baby. So, she came, we’re told that. And so, our goal was, okay, you’re here with us.
[00:46:39] We can take care of the baby. We got it. We’re the parents. And you just do your thing. That you’ll be fine. But it didn’t work out for her older sister to stay with us. That was a whole other situation, running away several times from us. She has been in the system for a lot of her life and knows how to get removed from a home, so that was new to us for sure. I have never had a kid run away from me like that.
[00:47:03] That little girl sleeps 12 hours a night, and she still does. That’s amazing. But she didn’t hug us, and she was not affectionate to us right away. It took a long time, and we noticed one day she would pat our back and we were like, wow, she’s patting our back as she lays her head on our shoulder. That’s huge. She’s forming a bond with us. She’s showing affection.
[00:47:28] You look for those things as a foster parent. So, she has really settled in with us. She maintains visits with her mom. They were a lot more frequent when she first came to us because the goal was to reunify them. And when kids go to visit their parents and then come back to the foster home, that’s always a hard transition because typically it brings up behaviors or past things or trauma or triggers or all of the above.
[00:47:56] And so if she was visiting with mom and sister, she would come back a different kid, really feisty, super aggressive. I know toddlers will bite. We know that. But like the hitting, the pulling the hair, the pinching, all of those things, she was very aggressive in that way. We had to warn Hannah, okay, if she comes up close and she, you think she’s gonna hug you or just lay her head on your leg, be prepared that she might be trying to bite you.
[00:48:25] She goes to daycare, which is just good for her, for structure. I would love to be home with her. That’s not where I feel like I should be in the sense that I just started working and I think that there’s a need for me to be in the classroom with the kids that I’m with. And she is loved and cared for and happy at daycare. We don’t know how much longer she’ll be here. I don’t know what it’s gonna feel like if she leaves. We ask our kids what they think before we say yes to anything.
[00:48:53] Carole Blueweiss: Are there any issues that come up because she’s Black and you’re white?
[00:48:56] Patty Braendel: Not directly. When we go to church, everyone is, oh my goodness, she’s so cute. And they’re so loving. And so, there’s never anything at church, although we go there and we’re like, we don’t want to be at a church with only white people, if that makes any sense. And it’s not that it’s just only white people, there are other people there, but we’re so conscious of it. It’s important to her to be around people of the same color.
[00:49:23] You’re sitting in a doctor’s office where it’s strictly lower income people. It’s just really eye opening. It just makes you think we’re very fortunate in what we have, so it’s just different. Because I see that in my school too, being in the Title 1 school.
[00:49:39] Carole Blueweiss: You’re a special ed teacher. Tell us about your classroom and how what you’ve learned through fostering and adopting and just being a parent has helped you as a special ed teacher.
[00:49:50] Patty Braendel: I could go on for days, but I won’t. So, Title 1 school and I’m in an L 300 school. So, in Florida that means our school is in the bottom. So that means the amount of kids in the school that are below poverty that need to be provided those meals, if they’re not gonna get those meals at school, they’re not going to be getting enough food at home.
[00:50:11] I just so happened to be subbing and accepted a long-term position in this class, and I had no idea what type of class it was. And I started in the classroom, got to know the kids, got to figure out where I was, get myself situated, and I knew I wanted to be teaching. I didn’t know where and what, but I just landed in the class and Eric was like, I think it’d be a great idea for you to be in special education.
[00:50:38] No day is the same and you can prepare for everything and then not be prepared for anything. It’s just that’s the way it goes. So, I’m in a K-5 class, so I have kids that could be any of those grades. I could have a kid put in my class whenever or pulled out whenever. You just don’t know. They have all different exceptionalities. Autism, I had a kid with Down syndrome last year. I have intellectual disability. One kid last year was visually impaired. He was legally blind. He had to have a one-on-one aid. Other health impaired, which is ADHD to like the extreme. We’re not just talking about kids that struggle with ADHD and may be able to handle it themselves or take a little bit of medication and they’re good with general education curriculum and all that. These are kids that are just like really incapacitated by ADHD, and they just cannot get themselves together. They’re not comfortable in their own skin.
[00:51:32] And because of the homes that they come from; a lot of these kids would end up in foster care because they’re living in such crazy situations. Like show of hands, how many of y’all have your own bed? Maybe one or two of the 15 kids will raise their hand. Some of them don’t have a bed. Some of them share a bed with three of their siblings. All kinds of situations. Some live in trailers. I don’t run from that, and I don’t think differently of the children because I’ve been a foster parent. A lot of times, these kids cannot get to a point to even learn because of all of the stuff going on at home.
[00:52:11] Carole Blueweiss: How do you teach math to a class that’s kindergarten through eighth grade with all different types of disability?
[00:52:17] Patty Braendel: It’s an impossible situation. So, you have to work in groups. So, I have a teacher’s aide, we break ’em up, we go, okay, you four are at kindergarten level, even though you’re like second and first grade and a third grader that’s in kindergarten level. Okay, so we’re gonna work through the kindergarten curriculum with you. I’m gonna do a lesson and work through with you. Meanwhile, my teacher’s aid’s going to be pulling another group working through second grade curriculum with the fourth graders. It just all depends.
[00:52:45] There is never a time where I am standing up in front of an entire class of kids and doing a whole group lesson. It’s impossible. Last year, I had 17 or 18. I have 15 right now. And so, you just are doing the best you can. I do have kids that are doing really well, and they go to the gen ed classes for certain subjects. So, they do that. They’ll push them out.
[00:53:06] Carole Blueweiss: What does VE stand for?
[00:53:08] Patty Braendel: Varying exceptionalities. It’s like a puzzle. How can we get this group over here to be doing this? And I’ve learned that I have to push for things, and I have to be an advocate for these kids, too. So just like I am as a foster parent, as a teacher in this environment, you have to advocate for those kids because these kids are considered the bottom of the ladder for the school as far as abilities.
[00:53:33] A lot of people will say, oh, it’s easy to be a special ed teacher. You’ll always have a job. You’d never get fired. And I’m like, trust me, I’m not here just sitting in a corner doing nothing, because I know I’ll never get fired. I work really hard because they deserve that. They deserve someone to be in there who cares for them.
[00:53:51] And so a lot of it’s like being a parent all day long. And I know teachers in general, especially in elementary school, you’re a parent a lot of the time. You know your kids in that way where you’re trying to just teach them life lessons and how to be a good human and all of that. So, I spend a lot of my day doing that, too.
[00:54:10] Carole Blueweiss: They’re lucky to have you. The danger is burnout. You have a child who has autism, a child who has Down syndrome, a child who can’t see, processing, ADHD.
[00:54:19] Patty Braendel: I just try to make sure that they all know that they’re loved and cared for. And tomorrow we’re gonna have an ice cream party because they were so well behaved for the lesson today. So, we have to do lots of rewards. And did I bribe them? Absolutely. Did I say that they could have ice cream if they were super quiet and raised their hand and were not out of their seats during the lesson? Absolutely. And you know what? For 35 minutes, they really behaved, and I was amazed. So that’s a little small part of my week in teaching.
[00:54:54] Carole Blueweiss: What advice do you have for other parents who are thinking of either adopting or fostering?
[00:55:01] Patty Braendel: Adoption doesn’t have to be like second, plan B, second choice. It could be plan A is what I would say. It doesn’t have to be second best. A lot of people are capable of more than they think they are, but then not everybody has to feel that I need to foster.
[00:55:18] There are so many other ways that you can help a foster family. So, if you can’t be a foster parent, you can help support a foster parent. So, like a meal, anything, any type of help. And with adoption, there’s brokenness. And with foster care, there’s brokenness. But out of that can come a beautiful putting together of lives in a way that wasn’t expected.
[00:55:44] I couldn’t think of anything other than having the kids that I have. So, I don’t look back and go, ugh, I just wish I had four biological children. We don’t think like that. We have who we have and they were meant to be in our family.
[00:55:56] Carole Blueweiss: What have you learned the most from your children?
[00:56:01] Patty Braendel: Patience. I am not by nature a patient person, and I did not grow up in a home that was like full of that, and I still have more to learn when it comes to that, too. Not having to panic and chaos, but to be like, No, we can be calm through this. And we can be patient and we can have peace through this situation. And so, I think that’s what we’ve learned. I can be standing next to a kid in my classroom or in my home that’s flipping out and most people would be like, oh my gosh, I need to make this stop.
[00:56:35] And we can sit there, and we can sit with them. And be beside them. And I’ve learned that from my kids. And it helps us with our foster kids too, just in all kinds of scenarios. I’m not perfect, so it’s not all the time, but more so than I ever would’ve been coming from like the type of family where just like all go from zero to a hundred real fast and let’s say we don’t go from zero to a hundred anymore.
[00:56:59] And Eric’s really good about it. So, I’ve learned through just watching him how he handles it. You can be calm and at peace through that situation, even though they’re not. So, I guess that’s what I’ve learned the most. I’m sure I’ve learned lots of things, but that’s what’s coming to mind right now.
[00:57:18] Carole Blueweiss: Thank you, Patty, for telling your story, and I know that my audience will appreciate just hearing the inside story of what it’s like to foster, to adopt, just to be a mom, to work in special education, all these ways to grow as a person and help others. It’s amazing.
[00:57:35] Patty Braendel: Thank you. I’m happy to share.
[00:57:39] Carole Blueweiss: Now for an update. After one year, the two-year-old Black girl in pigtails who was sitting on Patty’s lap at that baseball game, well, she was placed recently with her paternal grandfather, and though Patty and Eric and their kids can’t see or talk to her ever again, they find comfort that she is now where she’s supposed to be. [sounds of small children playing]
[00:58:02] Eric and Patty’s foster parenting continues. [sounds of kids playing] Patty explained to me that after two children are placed in a home, technically that home is closed to more placements. But the people at the agency know that Patty and Eric will say yes to difficult situations. And so, when they got a call that two boys were sitting at the welfare office at 4:30 on a Friday and that they needed a home, well, off they went. And that is why now [sounds of kids playing] the Braendels have four kids under three in their home. Two for short-term placement and two for long-term placement. That’s three boys and one girl. [sounds of kids playing] The eight-month-old boy was born to a 16-year-old mother who also had a child at age 14. There just aren’t enough homes right now, Patty told me.
[00:59:01] [sounds of kids playing] For more information on fostering or adopting a child, please go to the show notes. [sounds of kids playing]
[00:59:22] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.
Kathryn Paylor-Bent has a lot of wisdom to share and we cover a lot of ground in this conversation. We talk about her experiences as a disabled woman, wheelchair user, and the CEO of two successful businesses. She uses her disability as inspiration for her successful career as an adaptive fashion designer and as a consultant to other organizations.
She shares her experiences with ableism, including medical and digital ableism like shadow banning on social media and examples from her personal life. In light of some of these negative experiences, she also shares solutions as an advocate and suggests how we can better understand the disability community. Another important part of Kathryn’s story is being a mother to Tom, her son with autism and mental health challenges. She shares her vision for Tom’s future as well as the future of other young people with disabilities through her business Seated Sewing.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/rpJslXjawTk
FROM THIS EPISODE + RESOURCES
FIND AND FOLLOW KATHRYN
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[00:00:00] Kathryn Paylor-Bent: Nothing for us without us. If you are designing something for the disabled community or opening a shop, then don’t assume what we need. Come and talk to the disabled community. Come and let us tell you firsthand what it is that we need.
[00:00:24] Carole Blueweiss: Kathryn Paylor-Bent should know. She was once a nurse and non-disabled. Now, she is disabled and a permanent wheelchair user, which doesn’t stop her from living a full life. She travels, mothers, paints and sews, and she is the CEO and founder of two successful businesses. One is called Consult Seated. This organization allows Kathryn and other disabled experts to help other businesses with accessibility and inclusivity in both digital and physical spaces. Her other business is called Seated Sewing. There she is the chief seamstress and designer. She sews clothing for people with any disability, anywhere in the world. Kat is married to Nathan and they are both the proud parents of their teenage son, Tom, who was diagnosed with autism at about seven years old.
[00:01:16] Kathryn Paylor-Bent: We had known for a long, long time that there was something not quite right, but any time that it was raised, we were always given the reason that it was my disability that was causing Tom’s issues.
[00:01:32] Carole Blueweiss: It’s hard to wrap my head around the idea that somebody would accuse a mother of causing their child’s disability. And yet that is exactly what happened to Kathryn. If I hadn’t heard it from Kathryn in her own words, I would not believe the story. Stay tuned. I also want to express my appreciation for Kathryn because she expresses so much from her point of view, which is a very unique and important point of view. Unique in the sense that she was once non-disabled and now she’s disabled. Two, that she’s the mother of Tom who has autism and three, because she’s on a mission to speak out against what she considers systemic misunderstanding of people with disabilities and a lack of effort by many, not all, to try to understand and include disabled people in policy and community decision making. Nothing for us without us, that sums it up.
[00:02:28] Kathryn Paylor-Bent: Ableism is its name. And it’s where people who are without disability assume they know what is right for us. It’s very common in society. It’s very common in design and it’s not always done out of malice and badness. It’s done out of lack of education. It’s a sad state of affairs if we can’t get it right by just having open and honest conversations with the community.
[00:03:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents and children are the experts and where connection inspires change. My name is Carole Blueweiss. And today I have as my special guests Kathryn, the CEO and founder of Seated Sewing, her son, Tom, and their dog, Shadow.
[00:03:24] Welcome, Kat, to Wisdom Shared.
[00:03:26] Kathryn Paylor-Bent: Thank you very much. It’s lovely to be here.
[00:03:30] Carole Blueweiss: Tell us about the name of your company.
[00:03:32] Kathryn Paylor-Bent: My company’s called Seated Sewing. I’m all the way over in the UK. Not far from Scotland, north of England, over in Durham. I was on a sewing retreat with a designer in the UK. And I had explained that I’m disabled and a wheelchair user.
[00:03:50] I couldn’t find the clothes that I wanted. So I used to make my own, and I said I wanted to turn it into a business. So we spent the weekend throwing ideas around and we wanted it to reference the wheelchair in some way and my passion for sewing. So over the weekend, we came up with Seated Sewing.
[00:04:11] Carole Blueweiss: What happened that puts you in a wheelchair?
[00:04:14] Kathryn Paylor-Bent: 15 years ago, I picked up my son who was only six months at the time, out of a playpen. And I herniated a disc onto my spinal column, which needed emergency surgery, but the surgery actually went wrong and damaged my spinal column instead of fixing it. I spent nine months in hospital with them trying to fix things. I ended up with multiple infections and, unfortunately, it couldn’t be repaired. And I ended up as a wheelchair user.
[00:04:47] Carole Blueweiss: Do you have use of your legs at all?
[00:04:50] Kathryn Paylor-Bent: I have got use of my right leg. My left leg, I have no feeling, no sensation, because they don’t get the proper signals to them due to the nerve damage that was caused. So, my chair is my legs now.
[00:05:07] Carole Blueweiss: I usually try things on standing up. How does it work for someone in a wheelchair?
[00:05:11] Kathryn Paylor-Bent: It’s quite challenging because shops aren’t really set up for wheelchair users to try on clothing. Fitting rooms tend not to be large enough. We might be able to get a chair in, but actually being able to turn, being able to have a carer come in and assist you, there tends not to be that space. So, a lot of our shopping is done online and we’ll try on at home. I used to go out for shopping days with my friends in the old days, and we’d be trying all sorts on and pulling outfits. That doesn’t happen anymore. Shopping is just something, very much like food shopping, it’s done online. It’s delivered to the house and we deal with it all in house. So it is not great. It’s not fun. And there’s certainly not clothes out there that are suitable for people that sit all day.
[00:06:05] Carole Blueweiss: How did you learn how to sew?
[00:06:09] Kathryn Paylor-Bent: My grandma, my mother’s mom. She was a seamstress and she made dresses for everybody. If there was an event, then Grandma would be making you an outfit for it. And I just vividly remember her house always had the sewing machine on the kitchen table. There was threads everywhere. There was fabrics everywhere. If you had any questions, if you weren’t sure, you went to Grandma, ’cause she’d be the one that’d be able to show you how to fix something.
[00:06:38] And my very first sewing machine was a little Singer that actually it wasn’t even electric. It had a little handle you had to turn. So my mom could sew as well. And it’s always just been in the family. Just something that we grew up with, you could sew and you could knit. And it sort of went from there. And I think the fact that I’m 5’11” and the child of the seventies, we didn’t have tall ranges. So I had to make a lot of my clothes because my legs and my arms were too long for traditional shopping. It’s not something that was new to me when I became disabled. It had always been in my life. And yeah, just, I just had to think of it in a completely different way. And so that’s been fun.
[00:07:31] Carole Blueweiss: Now, do you make all your clothes?
[00:07:35] Kathryn Paylor-Bent: Not all of them. I normally wear maternity pants because they fit really well if you’ve got a colostomy. They sit lower. So around the house, I’ll just be in maternity wear because it allows my bag to grow, my catheters to sit right. But if we’re going out to an event, then I have a lot of clothes that I have made myself. They are what my going out clothes would be. But everyday stuff, no, I just wear maternity clothes.
[00:08:07] Carole Blueweiss: Can you tell us a little bit about clothes that are suited for you?
[00:08:11] Kathryn Paylor-Bent: The problem with sitting all day is clothes are designed by the designers to be stood up in, to be walked in, to be showcased standing. And they never think about the practicalities of sitting. So one of the problems, for example, with trousers is when you’re sat all day, you actually need your waistbands to be in a completely different position. So they need to be lower at the front and higher at the back. Otherwise we end up with this very drafty back.
[00:08:45] If you get too much material just sat against your body, it can rub and you can get really bad pressure sores and irritations. So the whole dynamics of how you design clothes is completely different for somebody with a disability or who is sitting all day long.
[00:09:06] Carole Blueweiss: There are different disabilities that also, I’m guessing, different specific modifications.
[00:09:15] Kathryn Paylor-Bent: Yes. For example, I’ve got catheters and feeding tubes, so I need to be able to access those. So I’ve got clothing that instead of having a central zip at the front will have a zip either side. And it’s sort of like a flap that comes down. Very much baby drawers really, just in a different, more fashionable cut. But it’s very much going back to thinking about how changing nappies on babies and that sort of access that you would require, we need it in our clothing as well. Elastic and things like that has, and fabrics as well have changed so much in the last 20 years even. It’s not just disabled, it’s elderly, it’s infirm, it’s older generation. They all benefit from having accessible clothing.
[00:10:09] Carole Blueweiss: Are there any stores in the world that you know of that actually focus on this population of people with disability?
[00:10:18] Kathryn Paylor-Bent: No, not a mainstream store, there isn’t. I do know that Tommy Hilfiger has an adaptive range. Tommy Hilfiger Adaptive because he’s got a child that has a disability.
[00:10:32] Carole Blueweiss: How do you find Tommy Hilfiger’s clothes?
[00:10:35] Kathryn Paylor-Bent: I haven’t personally tried them. I am aware of them because of the networks that I’m involved with. I do quite a bit with Open Style Lab, which is a US-based advocacy service, who I’ve been doing some work with recently. So it was one of the ladies on that that I was talking to. She uses them ’cause she’s got dwarfism. They’re perfect for her because the kids clothes are fashionable and funky. And she loves them. From my understanding, is that he covers a wide base of disabilities, but I haven’t personally been to any of the stores to have a look.
[00:11:16] Carole Blueweiss: If Tommy Hilfiger were listening to this podcast, what would you like him to know?
[00:11:24] Kathryn Paylor-Bent: I’d really like him to know that there are adaptive designers out there who are working really, really hard in the field, but are so unseen at the moment. And because he has an adaptive range and because he’s got disability in his family, he has got the power to collaborate with us, to shine a light on what we do, and to make a bigger noise in the sector than is being made.
[00:11:56] He needs to invest in the little people and he needs to bring them along on the journey. And open his range up because it’s very specific at the moment and it covers a limited number of disabilities. So open it up, be more inclusive, be more size inclusive. And come work with us. There’s some amazing designers that have got some fantastic ideas, but our voices just aren’t heard in the mass huddle which is fashion.
[00:12:29] Carole Blueweiss: I guess it’s more fun and more economical for you to make your own.
[00:12:33] Kathryn Paylor-Bent: Yeah, I do like just to make my own. And it’s price point as well. We’re heading to London for the week after next. So I’m hoping that we can pop to his London stone and have a browse and see what there is.
[00:12:49] Nothing for us without us.
[00:12:53] Carole Blueweiss: Tell me what that means to you.
[00:12:55] Kathryn Paylor-Bent: If you are designing something for the disabled community or you’re bringing a range out or opening a shop, then don’t assume what we need. Come and talk to the disabled community. Come and let us tell you firsthand what it is that we need. And it will succeed. Where we have a problem is where people assume that they think they know what it is that we need, or what would be suitable, without doing proper research or having proper dialogue with a community, and then expecting us to just go, oh, lovely, thank you very much.
[00:13:35] Carole Blueweiss: You experienced that?
[00:13:38] Kathryn Paylor-Bent: Yeah, quite quite a lot. Ableism is its name and it’s where people who are without disability assume they know what is right for us. It’s very common in society. It’s very common in design. And it’s not always done out of malice and badness. It’s done out of lack of education, but we’re in 2022 now. It’s a sad state of affairs if in 2022 we can’t get it right by just having open and honest conversations with the community.
[00:14:15] Carole Blueweiss: Can you give some examples?
[00:14:19] Kathryn Paylor-Bent: For example, digital ableism is something that we’re impacted with quite heavily on platforms like Facebook and Instagram, because they changed their algorithms in 2018 to protect the disabled community from trolling and hate speech, which is very admirable of them. But in doing that, the consequences were it’s actually heavily affected our reach and what we can talk about as a community. So anything that mentions disability or health conditions, medical procedures or devices, is really heavily controlled. And so if anything like that’s mentioned, our posts are banned, our adverts aren’t allowed.
[00:15:11] And so in their way of trying to help us, it’s actually caused a lot of problems for us. My understanding is they will have put a bunch of words into their computers and said, if it says this, we can’t have this. If you say this, this can’t happen. But across the board, that means there’s a swarth of the community that can no longer talk about things that up until then were fine. We can’t beat the algorithm.
[00:15:43] A better example was when I had my peg fitted, I was in hospital and I was documenting my journey all the way along, but anything that actually showed the peg – not that I was showing anything gruesome – I was literally showing a bit of plastic. Or anything that referenced why I needed it due to condition, those posts were not allowed, they were banned. So it would come up straight away saying that there was an error and you couldn’t post them. Or there’s something called shadow banning where they will suppress your reach. So if you regularly get a thousand people looking at your post, they would suppress it down so maybe only 20 or 30 would actually see it. I’ve known people that have been shadow banned for months. So yeah, it’s really difficult to have free speech when you’re talking about your everyday life. I’ve had photos of me and my wheelchair that have been banned. I’d love to not show my wheelchair, but my wheelchair’s my legs.
[00:16:50] So it’s like, how do I document what’s happening in my life and show how I live and how I get around being disabled and make a go of it when I can’t actually, because a computer is telling me I’m not allowed, or AI is telling me I’m not allowed.
[00:17:12] Carole Blueweiss: It’s shocking and scary. I never even considered that. That’s one of the reasons I want to make my podcast, which makes maybe podcasting that much more powerful because not yet anyway, no one is –
[00:17:24] Kathryn Paylor-Bent: Shadow banning.
[00:17:25] Carole Blueweiss: No one’s shadow banning podcasts yet.
[00:17:28] Kathryn Paylor-Bent: And that’s the beauty of LinkedIn as well. LinkedIn allow us to show our pictures, to talk about what we’ve got, and there is no issue on there. So there’s a lot of disabled activism that is happening on LinkedIn because it’s allowing free speech and open conversations about it.
[00:17:48] Carole Blueweiss: This started with the idea of that quote, saying nothing for us without us. So you’re saying that Facebook, for example, could have sat down with a bunch of people with disabilities and asked how can we serve you as opposed to just banning everything?
[00:18:05] Kathryn Paylor-Bent: Yeah, exactly. Just having the conversation. Hands up, there are some extremely vulnerable people within our community. So the reasoning for doing it, fully understand, but there’s also some people who aren’t vulnerable and who are up for taking on the challenge and supporting others. And it’s those people that I think are, and I’d class myself as one of those people, who are willing to take on the conversations that people don’t want to have.
[00:18:38] We’re willing to have the discussion and explain ableism. Or explain anything that people want to ask us. And it would’ve been nice to have that opportunity rather than the blanket of, well, you know, you’re disabled, you’re vulnerable. I don’t class myself as a vulnerable member of society.
[00:19:00] Carole Blueweiss: That brings up that idea that all disabled people are to be pitied, so to speak, even without the conscious realization that you’re doing that. Even out of a good heart, however, it’s not a positive outcome for the people who are disabled. And there has to be that understanding, well, why? Right? You might think you’re saying something kind, but in actuality it’s quite caustic, right?
[00:19:25] Kathryn Paylor-Bent: Yes. Yeah, very much so.
[00:19:29] Carole Blueweiss: What does that mean to be vulnerable to these trolls? What’s the danger?
[00:19:33] Kathryn Paylor-Bent: So everyone always likes to give the disabled community advice. Have you thought about drinking green tea? Have you thought about having a bit more sunlight? That will solve your problems. And it’s like, okay, thank you. But we don’t need that. Or people would say things that they knew were offensive, they knew were just the wrong things to say. And if you are getting that over and over and over again from complete strangers who have no idea about your situation, your mental health, your condition, it really starts to affect you.
[00:20:10] And people have really badly hit with depression. There’s been suicides and it’s wrong and it’s really bad. But there is a section of the community that actually thrives on this trolling and causing people hurt and pushing people to the limits. And that is what they were trying to prevent, which that’s right. There should be some controls over that, but at the same time and it might be controversial, but if you’re gonna have a Facebook account and you’re gonna put yourself out there, there is a certain part of it that you have got to be prepared for criticism. You’ve got to be prepared that what you say, people don’t like, and if you are not prepared to accept what people’s comments, are you really strong enough to have an account like that? Or at least an open account that’s open for anybody to see.
[00:21:16] Carole Blueweiss: Tell us about your son.
[00:21:19] Kathryn Paylor-Bent: My son is 15 now. And he is diagnosed autistic, ADHD, comorbid anxiety, and he has severe mental health challenges. We’re in that glorious puberty age, which is a nightmare anyway. And then a bit of neurodiversity, it’s fun. Very fun. So we’ve currently got a 15-year-old who’s six-foot-four, but actually has a learning age of a 6-year-old.
[00:21:54] And it is very frightening and scary because he doesn’t want to be a big boy. He doesn’t feel like he’s a big boy, but his body is doing otherwise and saying otherwise. And so we are dealing with all of that. The grieving of not being a little boy, even though he still thinks that he is, and just him not understanding what is happening to his body and why is it changing. Yeah. So, that’s difficult at the moment for him.
[00:22:22] Carole Blueweiss: How old was he when he was diagnosed?
[00:22:26] Kathryn Paylor-Bent: He got his official diagnosis at seven. We had known for a long, long time that there was something not quite right, but any time that it was raised, we were always given the reason that it was my disability that was causing Tom’s issues. Not only are you trying to adjust your head to yourself being disabled, you’re then sat there with all the guilt of my child is behaving in this way because I’m disabled. So actually that’s my fault as well.
[00:23:00] Carole Blueweiss: Wait, whoa whoa whoa whoa whoa. Let’s just back up on that for a second. For a moment, did you believe that?
[00:23:08] Kathryn Paylor-Bent: Yeah, because all the professionals were telling us that. We’d raised it when he started nursery and then he went up to school. We’d raised it, consistently raised it, and all of the professionals always came back and said, he’s an only child and you’re disabled. He’s with adults all the time. So he was used to only being around adults.
[00:23:36] So the excuse for his very, very advanced, I mean, he spoke like a gentleman at the age of three. His speech was way beyond what a normal three year old was, but we were told, well, he spends a lot of time with your dad and your dad’s very eloquent. There was always an excuse. There was always an excuse of it’s ’cause mom’s disabled.
[00:24:00] We believed it for a long, long time. Over here, we’ve got teachers called SENCos, so there’s special needs coordinators in the school. And the idea is they’re the specialist in the school. So if your child has a special need, they would pick up on it and they would bring all of the extra professionals in to help you.
[00:24:21] So he was in the SENCo’s class for a full academic year. She never picked up on the fact that he had any condition. She just classed him as a dreamer, as a loner. And it was blamed on us again, it was bloomed on my disability.
[00:24:39] Carole Blueweiss: Wait, but wasn’t he in that class because they noticed something?
[00:24:44] Kathryn Paylor-Bent: No, that was an educational psychologist had come into Tom’s class to meet another child who was going through the process of getting a diagnosis. And he walked straight in and went to Tom, assuming Tom was the little boy he was going to meet. Because he hadn’t met anyone in the class. And the teacher’s like, oh no, you’re not here to see Tom, you’re here to see whoever. And he says, well, when am I seeing this little boy? And the teacher said, oh, there’s nothing the matter with him.
[00:25:12] His mom’s disabled. He’s an only child. And she give the whole da, da, da. And he turned around and he said that little boy’s got autism. And she’s like, no, no, no, no, no. He’s fine. And he said, I’d like to do an assessment, just to prove you’re right. And he went for assessment and he aced all of it.
[00:25:32] And he came out, it took three years of going through assessments because the process in the UK is not fast. But yeah, it was the biggest sigh of relief I think we’ve ever breathed because finally we understood that it was nothing that we could have done being parents. It was nothing to do with the fact that I was disabled. This was a condition that we had no control over. And the relief from just getting that diagnosis was unbelievable.
[00:26:09] Carole Blueweiss: If I heard this story secondhand, I would not believe it.
[00:26:13] Kathryn Paylor-Bent: Right, yeah.
[00:26:13] Carole Blueweiss: So given that story, that seems to me a lot of ignorance and a lot of blaming and a lot of prejudice. I’m sure there’s a more sophisticated word for people in wheelchairs. To have that blame put on you in your case, it was in your face because you had a concrete situation, but what does that mean for other people that are disabled in your community, how they’re looked upon?
[00:26:41] Kathryn Paylor-Bent: It’s very true. And the sad thing is that we are now seven years on from Tom getting his first diagnosis and nothing has changed within the whole setup. Once we knew it wasn’t us, it lit a fire under us that we were going to fight as hard as we could to get Tom in the right educational setting with the right teachers. And we fought hard because we met a lot of parents and heard a lot of stories. And the stories aren’t changing, the narrative has not changed. Children here are still not getting the diagnosis early enough. Parents are still struggling with this. You’ve got a badly behaved child, or it’s your family situation.
[00:27:33] And it’s just heartbreaking because I know how much credence we put on what professionals were saying to us because they are the professionals. And you tend not to question them because you think this is their job. They see it every day. They know what they’re talking about, but we’ve learned that that is not necessarily the case.
[00:27:56] And actually, if something doesn’t feel right, you are well within your to question it. We went as far as going to court to make sure Tom got into the right school, because we knew that where he was was damaging him. We’ve had Tom be suicidal from about seven and a half, eight. And we are very tuned into how education settings or people affect how he is and how he reacts.
[00:28:27] And we knew what he was entitled to. And we took it all the way to court because there was no one saying that he couldn’t have it. So yeah, we’ve spent a lot of time fighting. We will fight until the day we die for both myself and for Tom and the community, because it’s not right. There is a lot of ignorance, but there’s a lot of ignorance and people aren’t interested in learning how to change.
[00:28:58] And that’s the sad thing. Especially in this area, we’ve got a huge problem with child mental health services. We don’t actually have beds in our area for any child that would have to be hospitalized. So a couple of years ago, Tom made an attempt on his life, which automatically you get pulled into all the crisis teams that come in and there was talk of him having to be admitted to mental health hospital, but there are no beds where we live.
[00:29:31] Carole Blueweiss: No beds or no beds available?
[00:29:34] Kathryn Paylor-Bent: No beds in our area. None. They closed the hospital down. So Tom would go to the next available bed in the country. It could be anywhere in the whole of England. Couldn’t get my head around – first of all, the fact that he’d have to go somewhere is traumatic enough, but the fact that I’d be putting my son in a car with a stranger to drive four hours south, six hours south. I wouldn’t be able to visit every day. That would be impossible. And I’d just have to trust that he was safe and well. It blows my mind that it’s even deemed as a solution. It’s like it can’t, how? But yeah, Durham has no beds for children with mental illness. None at all. Our closest is an hour and a half south. It’s a very, very broken system in the Northeast of England for child mental health services, unfortunately.
[00:30:38] Carole Blueweiss: What ended up happening?
[00:30:41] Kathryn Paylor-Bent: We’re very fortunate that his psychiatrist worked with us to keep him safe and to keep him at home. It has been a very difficult 18 months, and we’re not naive enough to think that it’s a never, because the way that he is, it’s gonna be an if rather than a when with Tom, because he is so unstable. But for as long as we can keep him at home as safe as we can, then we will. We’ll fight hard.
[00:31:11] Carole Blueweiss: How has this affected the relationship with your husband?
[00:31:15] Kathryn Paylor-Bent: He is an absolute rock, honestly. He has stood by everything. He’s been there when I’ve been on life support. He’s been called in a hospital when I’ve had seizures and he’s been told to come and say goodbye. He’s been to every appointment that either myself or Tom’s had. And we’re a team. He’s neurodiverse. So he’s currently on the adult pathway for autism because as Tom grew and the more he presented, the more he saw a lot of himself in Tom, and it would not surprise me at all. If he gets a diagnosis.
[00:32:00] It has affected Nathan. It has impacted him. He’s had depression for a long time. He did try to become my sole carer and it didn’t work well. He needs to be able to go to work, to have different conversations, to take his mind off things. Because home life can be pretty intense at times. But we found a way that works and yeah, we just take it a day a time and we’ve got through the day, it’s like, great. Okay, we’ll have a sleep and we’ll try again tomorrow.
[00:32:34] Carole Blueweiss: I wanna go back to your sewing business and how having your son and your sewing business, if there’s been any kind of sewing for him?
[00:32:43] Kathryn Paylor-Bent: Yeah. So, there has. I’m banned from making clothes for him because he’s a teenager now, so that’s not allowed. But he’s very sensory and reacts really well to weighted items. So I’d started making like little sausages that would go around his neck, just to keep him grounded. And it grew from lap pads into weighted blankets. So that’s one of the things we provide at Seated Sewing is we will make a weighted blanket that is 10% of your body weight, which is the best ratio. And we’ll make that in whatever fabric you like.
[00:33:26] If there’s something that we don’t stock, we’ll source it for you. And then the backing of them is always some sort of sensory material. So it’ll be a Teddy bear fleece. It’ll be whatever the person wants, really.
[00:33:40] Carole Blueweiss: How do they describe to you what they need? Or if somebody wants to order something?
[00:33:44] Kathryn Paylor-Bent: It’s a bespoke service. We’d have a conversation with them because it is so bespoke, it would involve them either coming to me or me going to them so that we can measure them and make sure that we’ve got all of the measurements that we need from them. If it’s for a wheelchair, we need the length of their leg and what their position is that they’re lying in or sitting in.
[00:34:08] Carole Blueweiss: When you say bespoke, what does that mean?
[00:34:11] Kathryn Paylor-Bent: Bespoke is it’s made specifically for you. So it is to your fabric choice. It is made to measure for you and your requirements.
[00:34:23] Carole Blueweiss: And could somebody do a Zoom session with you and have someone else take measurements?
[00:34:28] Kathryn Paylor-Bent: Certainly. I have a program on my computer and because we are able to screen share with Zoom, I can show them exactly on a little dummy where I need the measurements. And if there’s somebody in the room with them that can take the measurements, then we can certainly do it that way, yeah. The pieces that we make are specifically made for the person.
[00:34:52] Carole Blueweiss: Have you approached designer labels and stores outside of England or a network of other designers with your talent and so forth?
[00:35:01] Kathryn Paylor-Bent: I haven’t. I’m starting to become more vocal about it. I was speaking to a designer earlier and like, I really struggle just nominating myself for things or shouting about it or saying, come on guys, you need to look at what I’m doing. So we are gonna be working on that. We’re gonna try because of the perspective that we come from and life experience, we’ve got a very unique selling point. And I think I just need to be braver with getting out there and shouting about it.
[00:35:33] Carole Blueweiss: And when you say very unique, what do you mean?
[00:35:37] Kathryn Paylor-Bent: The fact that everything that we sell are things that our family uses on a day to day basis. So we sell weighted blankets. Well, that’s because my son’s got autism. We sell peg protector pads that can be used for feeding tubes or catheters because I use them every day.
[00:35:57] The hospital packs have been put together that contain everything you would need for a comfortable night stay if you were going in for surgery, or if you had a loved one in hospital. That’s come over years and years of experience. I have a hospital bag that’s packed 24/7. It’s just a go bag. We’ve done a lot of research and development on the sort of fabrics that work better.
[00:36:21] I don’t think many brands can put the hands up and say, actually we use our products every day. And this is how we know they work. It suddenly doesn’t work, we’d go back, we’d redesign it and we try it ourselves before anything comes to market.
[00:36:42] Carole Blueweiss: Do you have anyone in your life who’s been an inspiration for you?
[00:36:47] Kathryn Paylor-Bent: I think I take it from a lot of people. My husband is an inspiration, just the fact, the stickability and what he’s been through and seen and had to deal with and how he copes with that on a day to day basis is mind blowing. I like to take inspiration from lots of different people.
[00:37:07] For example, Isaac that I made an outfit for. He was born without any arms and very short legs, but there is nothing that has stopped him. He’s been skating, he’s been skydiving. What that man hasn’t done is just immense and you think of anyone, you’ve got a perfect excuse to stay home and do nothing, but he’s like, why should I? This is my life. I wanna live it. And just that passion for getting out and adventures and trying new things and not letting anything stop you, I think is extraordinary. Being around people like that has shown me that anything’s possible.
[00:37:53] Carole Blueweiss: What do you do to take care of yourself?
[00:37:57] Kathryn Paylor-Bent: I love sewing just as a hobby. I do it as a business, but then I love it if people like friends and family will come and ask me to do little projects. I also do a class of watercolor painting. So it’s just once a week for an hour and a half. And the doors get closed. The boys go upstairs and do what the boys do. And I’ve just got my room to myself and I can just paint. So it’s a lovely switch off. I really enjoy it.
[00:38:28] Carole Blueweiss: Show me your sewing machine.
[00:38:31] Kathryn Paylor-Bent: I’m already prepped in my chair, so we didn’t have to do another transfer.
[00:38:37] Carole Blueweiss: You have two wheelchairs?
[00:38:38] Kathryn Paylor-Bent: Yes. I’ve got a big electric chair, but I’ve come in my self-propel one this time. So I’m just wheeling myself over to the other side of the room and it’s all set up. And I do this. It’s a big industrial thing. [whirring sewing machine sounds]
[00:38:58] So, this is what you’d normally see in a factory, but ’cause I do so much sewing, I’ve got an industrial sewing machine. This is a lap pad that I’m making for a gentleman in some funky retro Herbie fabric.
[00:39:12] Carole Blueweiss: What is your dream for your business?
[00:39:15] Kathryn Paylor-Bent: Ultimately, I want to get it to the point where we can open it as they’re called CICs here. It’s a bit like a charity. So that we could run apprenticeships for children like Tom. So he has a career, but then open it up to others within his school who are needing apprenticeships and skills and have a passion for sewing. We really want to get to the point where we have enough business coming in so that those children can be taught how to sew and they can turn out beautiful products and we run them through an apprenticeship or we run it as an enterprise.
[00:39:55] So that. If they’re really happy with just staying with sewing, then they can do that. But if they’re like the more techy side and they wanna be more website driven, then they can do all of the technical bits that I don’t really understand.
[00:40:12] Carole Blueweiss: Would these people get paid?
[00:40:16] Kathryn Paylor-Bent: Yeah. Over here an apprenticeship, they get a small allowance while they’re learning. So it would involve them going to college while also coming to us. And then once they have passed that to whatever degree, even if they don’t pass, it doesn’t matter because if they’re really good at just sewing blankets, then we happily pay them to just sew blankets. We just want them to have a job and feel like they’re useful. And it’s something they can do.
[00:40:45] That’s our long term goal that we will be able to scale up to a point where we can offer that to Tom and whoever else is interested. It doesn’t even have to be neurodiverse. It will be somebody with a disability of some sort, whether that be mental or physical. That’s our unique selling point is we are disabled and we are doing it for other disabled.
[00:41:10] Carole Blueweiss: I know here in the United States, people are always interested in when their children get older, what are some options?
[00:41:15] Kathryn Paylor-Bent: Yeah.
[00:41:16] Carole Blueweiss: And I think people will be inspired by your idea.
[00:41:20] Kathryn Paylor-Bent: We know we’re having to start and think about for Tom. So it’s like, there’s not just gonna be us in the Northeast who’s got a son like that who don’t really have anywhere else we can send them all or things that they’ve got an interest in, but if it’s something that they can develop, then great. Yeah.
[00:41:43] Carole Blueweiss: Sure, a skill.
[00:41:46] Kathryn Paylor-Bent: Yeah.
[00:41:46] Carole Blueweiss: Feeling needed and productive.
[00:41:50] Kathryn Paylor-Bent: Just to feel valued and that their life actually does have a lot of meaning and it’s worth getting up every day for, because if, once you lose that, it’s very, very difficult to get it back. And we know firsthand how hard that is. And through all of it, if Seated can help one family have an easier journey through either getting an autism diagnosis or becoming disabled, then we’ve done what we’ve set out to do.
[00:42:28] Carole Blueweiss: I interviewed Kathryn a second time because I saw on LinkedIn a post saying that she was in the hospital. And so I was concerned and I wanted to know what was happening. So once she was home, we got in touch with each other and she agreed to talk to me on Zoom again. And she told me her story, how she went to a movie theater and there was no wheelchair access other than the very front of the theater. So she was seated in front of the front row. Now, if you’ve ever been in a movie seated in the front, you know what it’s like, where your neck is extended backwards and your head has to look up. After a while, Kathryn felt some numbness and then tingling through her right arm. And eventually her arm felt completely numb.
[00:43:18] So she went home, hoping it would go away. But when it didn’t, she called the hospital, described what was happening and they were concerned it might be a stroke. So they sent an ambulance right away. She was waiting in the hospital 12 hours before she was put into her room. And before she had her first CAT scan. Two weeks later, she was finally discharged and she got her tests back. And what was the result?
[00:43:44] Kathryn Paylor-Bent: The results were I hadn’t had a stroke, which is exactly what we had thought. I’ve got more degeneration in my neck and I’ve got bulging discs, which have been pressing on nerves.
[00:44:00] Carole Blueweiss: And did they listen to you when you said it potentially could be because of your spine situation and that you were just at the movies?
[00:44:07] Kathryn Paylor-Bent: No. No. So what they, even after they said, well, maybe it’s not a stroke. They decided that it may be something called FND, stands for functional neurological disorder. I was told that if I went home with a positive mindset, then I would probably get the use of my arm back. Just think positive and get over it. And use it. And I’m like, well, I’d love to, but it’s not working. I can’t, like come on, guy.
[00:44:42] Carole Blueweiss: So at any point, did they call in physical therapy?
[00:44:46] Kathryn Paylor-Bent: Yes, I had a physio that came to see me on the ward. All that they kept writing in my notes is that I’d made great progress. Their definition of great progress was I’d had some flicker in my muscles and I got to the point I could move my fingers. That was proof that it was FND ’cause I’d got some movement back. Because I got a lot of questions, like have you had any trauma? Are you upset? Are you in a rough period in your life? And I’m like, no, I said. And the assumption was quite funny.
[00:45:21] I’m quite used to it now for medical doctors. So they obviously see my wheelchair. They know that I’ve got spinal injury and the assumptions that are made straight off without speaking to me. So the consultant came in and he said, so what do you do? And I says, well, I run two successful businesses and he just looked and he went, you run businesses? Yes. And I said, actually I drove us to the cinema. You can drive? And I said, look, I might be in a wheelchair, but that doesn’t mean that I don’t do things and I haven’t got a life. I do. And I’m quite capable, I think. Don’t make assumptions about me. [dog barking]
[00:46:10] Carole Blueweiss: Was that your dog in the background that I was hearing?
[00:46:13] Kathryn Paylor-Bent: Yes. She hears the gate open before we even know there’s someone in the garden. So she was warning us. She’s called Shadow and she is a black cockapoo. And we got her after we’d done some training with a UK charity called Dogs For Good. There’s a very big waiting list to get service animals in the UK.
[00:46:38] And they’re really expensive. So you need to do a lot of fundraising to raise the money for them. Dogs For Good were also running a program where they would teach you how to train your own dog to be a service dog. And then on the very last day of the course, I got a call from one of my best friends who said, I think I found a dog that will work for training and it turned out to be Shadow.
[00:47:04] We have trained her to be Tom’s autism assistance dog. And she goes everywhere with us. She’s got a little jacket that says that she’s a service animal. She’s been on the London Underground this week. The only thing she hasn’t done is been on an airplane, but we’ve had her on ferries and everywhere we go, she comes with us. And she’s absolutely opened up our life because Tom, for a long time would run. If he got very worried and stressed, he would just run. We have a harness that we put around him so that he’s in charge of the dog. And Shadow was trained that if she felt that he was gonna start and run, she’d just sit down. And that would stop him from running. We’ve also trained that when he is upset, she goes and she licks the tears away from his face or gives kisses.
[00:47:59] Also, if he’s really agitated, we can sit her on top of him and it’s like a weighted blanket really, but just the interaction and having to stroke her and having to concentrate on the dog for a little bit can be enough to bring him out of whatever meltdown he’s in. So she’s amazing. She’s absolutely a fantastic little animal. We got her socialized and happy around other animals, but then when she puts her service coat on, she becomes a different dog. She knows she’s working. She knows she’s got to stand by our side.
[00:48:39] Carole Blueweiss: And does Shadow help you, too? Tell me a little bit about your relationship with Shadow.
[00:48:44] Kathryn Paylor-Bent: She’s technically Tom’s dog, but actually, yeah, she’s Mom’s dog, really. We haven’t trained her to help me in any way, but she has instinctively picked it up. If my blood sugars drop, she comes and warns me. She licks me and she warns Nathan. If I’m about to go into a seizure, she warns us. But this isn’t something we’ve trained her for. This is just something that instinctually she knows, and she understands, and it’s really bizarre, but yeah, she’s a life saver.
[00:49:20] Carole Blueweiss: Can I meet her? Is she in the room?
[00:49:21] Kathryn Paylor-Bent: Yeah. Shadow! Shadow, come on, come. Oh, she’s up with Tom at the moment.
[00:49:32] Carole Blueweiss: Can I meet Tom? I would love to meet Tom. [dog barking] Hi, Shadow. Do you do Zoom, Shadow? [dog barking]
[00:49:47] Kathryn Paylor-Bent: Here’s Tom.
[00:49:48] Carole Blueweiss: Hi, Tom.
[00:49:48] Tom: Hello.
[00:49:49] Carole Blueweiss: Hi, my name’s Carole.
[00:49:51] Tom: Hello, Carole.
[00:49:52] Kathryn Paylor-Bent: I’ve been doing a podcast with her and talking about some of the challenges of being autistic and some of the ways that Shadow’s been helping you as well.
[00:50:02] Tom: Oh, lovely.
[00:50:04] Kathryn Paylor-Bent: So what sort of things can Shadow do for you, Tom?
[00:50:08] Tom: Well, she can shut me up.
[00:50:09] Kathryn Paylor-Bent: Mm-hmm, what does she do if you’re sad?
[00:50:12] Tom: She licks me.
[00:50:13] Kathryn Paylor-Bent: Yeah.
[00:50:14] Carole Blueweiss: Tom, how old are you?
[00:50:16] Tom: 15.
[00:50:17] Carole Blueweiss: And what do you like to do for fun?
[00:50:19] Tom: Play video games.
[00:50:21] Carole Blueweiss: What’s your favorite video game?
[00:50:22] Tom: Oh, couldn’t tell you that.
[00:50:25] Carole Blueweiss: Do you played a lot of different ones?
[00:50:26] Tom: Yeah, a lot of different ones.
[00:50:27] Carole Blueweiss: A lot of different ones.
[00:50:29] Kathryn Paylor-Bent: You like Roadblock and very much into Dr. Who at the moment, which is a UK.
[00:50:35] Tom: It’s something that Americans wouldn’t understand.
[00:50:37] Kathryn Paylor-Bent: It’s a UK program, isn’t it?
[00:50:39] Carole Blueweiss: You can tell that I’m American, Tom, right?
[00:50:42] Tom: No, I couldn’t tell.
[00:50:43] Carole Blueweiss: Oh, I’m very American. I’m talking to you from New York.
[00:50:46] Tom: What time is it there?
[00:50:47] Carole Blueweiss: That’s a good question. It’s 9:32.
[00:50:50] Tom: In the morning or evening?
[00:50:51] Carole Blueweiss: In the morning.
[00:50:52] Tom: I never understand timezones.
[00:50:54] Kathryn Paylor-Bent: You’ve been to New York, haven’t you?
[00:50:55] Tom: Of course I have.
[00:50:56] Carole Blueweiss: I heard you were recently in London. Is that right?
[00:50:59] Tom: Yes.
[00:51:00] Carole Blueweiss: What was your experience in London? What did you do?
[00:51:03] Tom: It was great.
[00:51:05] Kathryn Paylor-Bent: You went onto HMS Belfast, didn’t you?
[00:51:07] Tom: Yeah, it’s a battleship that served in the Second World War, a UK battleship. You probably have never heard of it.
[00:51:13] Carole Blueweiss: No, but tell me about it.
[00:51:14] Tom: Well, it’s a battleship.
[00:51:18] Kathryn Paylor-Bent: What sort of things does it show you on there?
[00:51:20] Tom: It shows you the weapons, the med bay, the kitchen.
[00:51:27] Kathryn Paylor-Bent: Does it show you where they used to sleep?
[00:51:29] Tom: Yes, it does.
[00:51:31] Carole Blueweiss: Did you find it interesting or was it boring or what did you think of it?
[00:51:34] Tom: No, I go there nearly every time we go to London.
[00:51:37] Carole Blueweiss: Do you like things about World War II?
[00:51:40] Tom: Yes.
[00:51:41] Carole Blueweiss: If you were gonna tell kids your age about the war, what would you want them to know?
[00:51:46] Tom: Well, there’s a lot of stories of alliances and betrayal and, well, that’s pretty much it. Certain others don’t agree with me.
[00:52:00] Carole Blueweiss: What don’t they agree with?
[00:52:02] Tom: The whole war.
[00:52:04] Carole Blueweiss: So what do you feel strongly about that you think they should also agree with you?
[00:52:08] Tom: I don’t agree with anyone. I don’t talk with anyone. I don’t trust anyone.
[00:52:13] Carole Blueweiss: Is it because you’re afraid that they’ll just not understand you?
[00:52:16] Tom: No, it’s not that. It’s just that I don’t trust people at all. I have major trust issues.
[00:52:22] Carole Blueweiss: I see. Do you trust your mom and dad?
[00:52:26] Tom: Mom, yes, but Dad, not so much.
[00:52:28] Kathryn Paylor-Bent: Stop it. I’m not lying, I’m agreeing. Do you wanna say thank you to Carole? And then we’ll.
[00:52:34] Tom: Thank, thank you for letting me talk to you.
[00:52:37] Carole Blueweiss: Do you have any questions for me? Do you wanna ask me anything?
[00:52:40] Tom: Can I never come here again?
[00:52:43] Kathryn Paylor-Bent: You can never come here again.
[00:52:44] Carole Blueweiss: I just want to thank you. I really appreciate it. You were put on the spot and it really was quite unfair, so I just wanna thank you for just talking to this total stranger without any warning.
[00:52:55] Tom: No, don’t worry.
[00:52:56] Carole Blueweiss: And it was really nice to see you with your mom and with Shadow. It really helped me understand your home, because your mom is an extraordinary person. I’m learning so much about how she’s doing her businesses and how she’s coping with a lot of different things. And it’s important that people understand people, right? Like that. To hear the stories. So thank you, really, from the bottom of my heart.
[00:53:16] Tom: No problem.
[00:53:17] Carole Blueweiss: All right.
[00:53:17] Kathryn Paylor-Bent: Thanks, Tom.
[00:53:18] Carole Blueweiss: Bye. That wasn’t fair.
[00:53:22] Kathryn Paylor-Bent: That’s okay, he’s fine.
[00:53:26] Carole Blueweiss: But that was nice to see because even in my imagination, you speaking about Tom, I create images in my mind. And they were not at all.
[00:53:35] Kathryn Paylor-Bent: Not what he’s like.
[00:53:36] Carole Blueweiss: What I expected, yeah. So it’s really nice to put the two together and just even realize that you can’t really go by description.
[00:53:49] Kathryn Paylor-Bent: No, and it is really hard to describe. Because there’s so many different facets to him as a person. And yeah, it’s just so difficult to…and you don’t know what you’re gonna get when you ask a question and we don’t. I’m not surprised he said he trusts me and not dad. He has got real big issues with trust. He does trust his dad. It’s just this weekend, he’s not happy with him. So dad’s the enemy at the moment.
[00:54:16] Carole Blueweiss: So that made sense.
[00:54:18] Kathryn Paylor-Bent: Yeah.
[00:54:18] Carole Blueweiss: It’s interesting to me that he can actually articulate that he has issues with trust.
[00:54:25] Kathryn Paylor-Bent: Yeah.
[00:54:26] Carole Blueweiss: So he can analyze his own behavior or is it because he’s heard people tell him that? What do you think?
[00:54:31] Kathryn Paylor-Bent: I think a lot of it is he’s heard over the years, professionals have told him that he’s got issues with trust and it’s very much something that just sticks in his mind. And I think with the education system, he’s been let down a lot. So he’s had times where teachers have moved on and he’s not been warned or they’ll pull students out of his class that he really got on with. And so he doesn’t want to build relationships because he says, well, what’s the point because they’re gonna move. They’re either gonna be taken away from me. So why should I trust them? Why should I get to know them? Why should I make friends if they’re just gonna move on.? He’s very much a solo player of I’ve gotta make sure I just keep myself happy because no one else can.
[00:55:24] Carole Blueweiss: Hmm. There’s a lot of wisdom to that.
[00:55:27] Kathryn Paylor-Bent: There is. Yeah, he’s a very deep thinker at times.
[00:55:34] Carole Blueweiss: I could tell by what he said about World War II, that was a very analytic answer. One sentence. I mean, he really summed it up so well in a very sophisticated way.
[00:55:46] Kathryn Paylor-Bent: Yeah.
[00:55:47] Carole Blueweiss: Like he gets it.
[00:55:49] Kathryn Paylor-Bent: Yes, he does. And so much, but he doesn’t trust himself that he understands.
[00:55:56] And it’s trying to get him to understand actually, you know so much more and you are capable of explaining to people so much more than you think you are. But I think for so long in education, he’s been told that he doesn’t understand or he’s not good enough. And so he’s now got this belief that what he knows isn’t important to anybody, cuz no one wants to hear it.
[00:56:22] And it’s like, actually, no it’s really important. And your understanding of the world is really important and people do want to hear it. But sadly, through growing up and the experiences he’s had, he doesn’t believe that. And he doesn’t think it’s true.
[00:56:43] Carole Blueweiss: Well, he’s taught me a lot, you know, both of you have. And it shows that for those of us who are speaking to people that have differences, the power of listening and the power of allowing who you’re talking to to know that you are listening and that you are interested is huge. In the school system, when teachers have multiple kids, they probably don’t really feel as heard. And then they don’t always have parents like you. But then the parents have to really understand a child that’s very different from who they are. So that takes time, too. There’s a lot of challenges.
[00:57:21] Kathryn Paylor-Bent: Mm, yeah. And parenting someone as deep thinking as this, it’s fun. It’s fun.
[00:57:31] Carole Blueweiss: Does he sometimes surprise you with like, oh, I never thought of that.
[00:57:34] Kathryn Paylor-Bent: Oh yeah. He’ll come out with things and you’re like, Tom, how long have you known that? Or where did you learn it? He’s like, well, I just do, I don’t know. I just knew. Even with simple things like reading, he’ll come out with a statement and he like, wow, Tom, I didn’t know you could do that. And he’s like, yeah, I learned it a couple of weeks ago, but I didn’t think it was important to tell you. If we could unlock this wealth that he’s got going on in his head, he could be the next Einstein. I’m sure of it.
[00:58:05] Carole Blueweiss: Does he like the sewing? I know you’re training him for your company to do some sewing.
[00:58:09] Kathryn Paylor-Bent: Yeah. He likes the idea of helping others. If he knows that he’s helping others and he can make a difference, then he’s happy. And he gets a lot of joy out of knowing that by doing something it’s made somebody happy or it’s made someone’s day. And that’s the avenue we’re going down, not necessarily the skills, but just reinforcing the fact that he’s on the planet. People love him for who he is and that it doesn’t matter what he does if he’s helping people and making people happy. That’s all we can ask. And the skills will come with time. He just needs to understand that he’s a valuable member of society. And that’s what we’re trying to reinforce all the time is that, you know what? You are valuable. You don’t have to come away with qualifications. All we ask is that you’re happy and you have a passion for learning. And he does. He teaches himself in his own special way. We’ve not had an easy journey, but if people can learn from what we’ve been through, then that’s great. That’s all we want.
[00:59:23] Carole Blueweiss: Thank you so much for sharing with me today on Wisdom Shared., I relish all your incredible wisdom and your experience and your mission to spread all that you’ve learned and empower other people.
[00:59:35] Kathryn Paylor-Bent: Thank you. Thank you very much for having me. I really enjoyed it.
[00:59:43] Carole Blueweiss: Please check the show notes for more resources and to learn more about Kathryn’s businesses. Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.
In this episode, we meet Dom Raban, a designer, software developer, and father of Issy. Issy underwent cancer treatment at age 13. While Issy is now a young adult and cancer-free, the lack of information given to Issy during her treatments prompted her father to create a child-centered app called Xploro. This amazing app was designed to improve the health literacy of children, to decrease procedural anxiety, and to improve the hospital experience for all children and their families.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/5evWmZZ4BS8
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[00:00:00] Dom Raban: She arrives at the hospital and she’s taken up to a ward. She walks into the ward and she sees children walking around with no hair, holding drip stands, and she looks at them and she thinks oh, these people are dying. What am I doing here? I’m not dying. And it slowly dawns on her. That actually she’s probably got the same as they’ve got and at that point, we’re all just devastated.
[00:00:40] We all just think why has no one prepared us for this experience?
[00:00:49] Carole Blueweiss: Welcome to Wisdom Shared, where parents and kids are the experts and connection inspires change. I am your host, Carole Blueweiss. Today, I have as my special guest, Dom Raban, Issy’s dad and Xploro co-founder. Xploro is an app that was inspired by Issy’s hospital experience when she was 13 and diagnosed with a type of cancer called Ewing sarcoma.
[00:01:15] She is now in her twenties and cancer free, but it was her difficult experience in the hospital that sparked Dom’s imagination. During the cancer care journey, Dom and Issy noticed that there was hardly any information being shared with Issy, both while she was being tested for a diagnosis or before her treatments. Issy and Dom felt strongly that children who are entering a hospital deserve to be empowered by receiving age-appropriate information before they arrive in the hospital.
[00:01:46] That is why Dom’s company developed the child-centered app Xploro, to help kids know exactly what will happen before, during, and after a hospital procedure. To make sure that it was geared accurately for children, Dom created an expert advisory board made up of 12 nine to seventeen year olds. The kids use this app on their own phone or iPad to seek out answers to their questions and to explore. For example, they can take a tour of the hospital or check out the ultrasound machine or the CT scanner, all in augmented reality. It’s like being inside a movie. The kids can express themselves in different ways using their mood diaries and that way parents and the healthcare team can be aware of how the child is feeling at any given moment. The kids who will be getting IVs can also see how they will be connected to an IV machine step by step.
[00:02:44] And they can ask the avatar questions. And when the child types in their questions, Xploro is able to decipher the wildest of misspellings. The kids can even visit operating rooms where they may be receiving their surgery. And who wouldn’t want to know more about an MRI machine way before being slid into the dark donut shaped cylinder? [sounds of MRI machine]
[00:03:18] I can’t imagine what it would feel like for a child hearing that clanking sound for the first time, while a stranger stands there telling them that they shouldn’t move or else they’ll have to do it all over again. I remember being shocked and feeling anxiety when I had my first MRI and was given these strict instructions.
[00:03:36] Imagine if kids could listen to those MRI sounds before the appointment, and if they could see the inside of the machine on their phone in 3D, and ask questions to the virtual technicians who they can dress up and assign a name to.
[00:03:51] Dom is the chair of Corporation Pop, a creative and digital agency that specializes in mobile app development and emerging technologies. He’s been creating stuff for nearly 40 years, from punk fanzines in the late seventies to content for new media platforms now. Dom lives in the UK, but he is marketing and coordinating research projects all over the world. The research has already shown that if you provide patients with information prior to treatment, you not only reduce their stress and anxiety, but you improve their clinical outcomes.
[00:04:26] Let’s listen to Dom tell us about this innovative idea and how Issy inspired him and his team.
[00:04:39] Dom Raban: My daughter was going through her 15th round of chemotherapy. She was feeling pretty rough. And someone came over with this experience measure, which is designed to gather feedback from patients on the experience they’ve had. And the question was how likely are you to recommend this service to your friends and family?
[00:05:07] Now, picture a 13 year old girl who’s feeling really poorly. She’s hating being in the environment. And I can’t say what she wrote on the form cause it’s unrepeatable, but it certainly wouldn’t have been of much use to the surveyors. It was a very, not only a very blunt edge sword in terms of a piece of research from the health authority, but highly inappropriate in terms of the way the question was asked as well.
[00:05:34] Carole Blueweiss: Maybe the people making the questions need to think a little bit more about who’s reading them.
[00:05:39] Dom Raban: Yeah, I think they need to think a bit more about the questions. When they’re designing those questionnaires, they need to do what we’re doing, which is design them iteratively with children so that they get the language right. And you also need to be very mindful of when you ask those questions. Asking someone to give a favorable review of a hospital when they’re undergoing chemotherapy, you are never gonna get a very positive response. So it’s just insensitive.
[00:06:13] Carole Blueweiss: And overall, I get the impression that you say, and your daughter now let’s say many years cancer free and she’s thriving and –
[00:06:21] Dom Raban: 10 years, yeah.
[00:06:23] Carole Blueweiss: She’s in her twenties. So what I wanted to make known is your impression that the medical care that she received was great and you’re not criticizing the medical –
[00:06:33] Dom Raban: Absolutely. I mean, she had great clinical care and the reason she’s 10 years cancer free is because that clinical care was excellent. But what was missing was that information piece.
[00:06:44] Carole Blueweiss: Let’s go back in time for our listeners who maybe in the midst of having heard that their child has been diagnosed with something, in the vein of just them learning from your experience, what was helpful? And the things that weren’t helpful, how did you manage that, in terms of your response to when you got the diagnosis, how you were treated. What you can think of that might help parents that are now going through that. What are some of your learning moments?
[00:07:12] Dom Raban: I think, and I’ve heard this from so many parents and I don’t have any great pearls of wisdom here because we didn’t deal with it very well, and most parents don’t deal with it very well. You’re going through a very traumatic process. I think the thing that we learn is whatever you do, don’t Google because it’s unfiltered information. The very first thing that Issy found on Google and we found on Google at pretty much the same time was that she had a, according to this piece we found, she had a 20% chance of living. That’s not great. That’s not great information to find. So I think never rely on Google information, tempting as it is. So that was definitely a takeaway. I can’t think of any great coping strategies that we had. I think when you’re going through something like that, you’re very much living from one moment to the next and not thinking too much about the future, ’cause the future is so uncertain. It’s, you don’t know what the next scan result is gonna bring or…so it’s, you’re very much kind of living in the moment.
[00:08:22] Carole Blueweiss: I appreciate your honesty. It helps people feel less alone when they just hear that you were one hot mess, you know?
[00:08:29] Dom Raban: Yeah.
[00:08:30] Carole Blueweiss: I would like my listeners to hear the story of how it all began. As horrific as the diagnosis was, the silver lining was that it was caught early. And I think that’s part of the story.
[00:08:42] Dom Raban: Yeah. So October 2011 and my daughter had just achieved her first rising trot in her horse riding lessons. And the next day she was in complete agony. We couldn’t understand what was going on. She was just finding it really, really difficult to sit down. We actually sent her to school that day, which to this day I really regret, but we sent her to school and she came home. She was still in intense pain. So we took her to our GP. Their diagnosis, if you like, was that she had growing pains and she was sent home. I think we gave her some mild over-the-counter painkillers, which didn’t really have any effect at all. And the pain just continued. And so we took her back to see a different GP this time who took her pain much more seriously and referred us to the local hospital.
[00:09:44] So we went up to the hospital via the ER, and she was eventually seen by a doctor who had an idea as to what it might be. And she was admitted onto a ward. And she was kept on the ward overnight because they didn’t have an MRI scanner available and they wanted to do an MRI scan so that they could see what was going on.
[00:10:08] So the next day, actually spent the whole day on the ward in agony, and then eventually at about four o’clock the following day, they took her down for an MRI scan, brought her back up and then a couple of hours later, the doctors invited my wife and I, not my daughter, into a consulting room and they showed us the scan.
[00:10:30] And I’m a designer. I’ve never seen an MRI scan before. Neither had my wife. So we look at this MRI scan and we don’t know what’s normal, what’s abnormal. And the doctors say we need to get a second opinion. We need to refer her to the local specialist center. They didn’t mention the word cancer at all at this point.
[00:10:50] Of course, now I realize what we were looking at was a tumor, but they didn’t tell us what their theory was that she had a tumor, but they didn’t tell us any of that. They said you’re gonna have to wait until a bed becomes available at the local specialist center.
[00:11:06] Carole Blueweiss: Do you think the right thing to do for you would’ve been to get more information at that point or not necessarily?
[00:11:12] Dom Raban: Not necessarily at that point, but I’ll go on and talk about the point of which we realized that Issy had cancer, because that was completely inappropriate. The significance of the rising trot, of course now with hindsight, is that what the rising trot had done was it had disturbed all of the nerves around the tumor site, and that had caused the intense pain. And had she not achieved that rising trot, then maybe it would’ve gone on for some weeks before we identified a problem. And then it might have been too late.
[00:11:43] Carole Blueweiss: Can you just explain what is a rising trot?
[00:11:45] Dom Raban: It’s when you effectively sit up and bounce up and down on the saddle. Now, if there’s any people who ride horses listening to this, they will be screaming at their devices now saying no, it’s not that at all. I don’t know anything about horse riding either, but it’s basically from a layman’s perspective, it’s bouncing up and down on the saddle.
[00:12:07] It was that action that agitated the nerve endings and created the pain. In a way, that was what raised the alarm. But coming back to the journey in the hospital. At this point, we’re in our local regional hospital. It’s just the children’s ward within a general hospital. Issy’s waiting for a bed to become available at this local specialist center.
[00:12:30] And the pain is getting worse and worse and worse. So they put Issy on a morphine drip and every day we kept expecting her to be transferred to the local specialist center which is in Manchester about 30 miles away from where Issy was. And the days went by. Eventually, I think it was two weeks later, during which time we have no information at all, no mention of the C-word, no mention of any kind of prognosis.
[00:13:05] And we are just thinking what? What is going on? Our daughter, despite the morphine, she’s in more and more pain. And then the news comes through that says a bed’s become available at Royal Manchester. She’s transferred by ambulance to the hospital. And she arrives at the hospital and she’s taken up to a ward. No one said it’s an oncology ward.
[00:13:30] She’s taken up to the ward. She walks into the ward and she sees children walking around with no hair, holding drip stands. And she’s never seen anything like that before. And she looks at them and she thinks these people are dying. What am I doing here? I’m not dying. And it slowly dawns on her that actually she’s probably got the same as they’ve got.
[00:14:01] And at that point we’re all just devastated. We all just think why has no one prepared us for this experience? I know that’s a particularly bad experience. I’m not saying that is the typical journey. I think there were a set of circumstances that led to us not being properly informed about what was gonna happen, but that was terrible.
[00:14:28] And that was a really bad starting point for her course of treatment. It left her with no faith in the medical services and actually I think faith and I don’t mean that in a religious sense, but faith in the service providers is really, really, really important. And the idea that you are working together towards a cure really helps get to that point of being better.
[00:14:56] And I think because my daughter started on such a bad footing, it actually worked against her treatment. That was just an awful, awful experience for all of us. But particularly for my daughter.
[00:15:11] Carole Blueweiss: And your daughter has a brother, or you have a son. Tell u