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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Meet the experts on the frontlines: the parents of children with special or unique needs.

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.

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Episode Summary

In this episode, Lynn Greenberg and her son Jonathan, co-authors of Robby the Dyslexic Taxi and the Airport Adventure, share insights into Jon’s journey with dyslexia. Emphasizing the transformative impact of education post-diagnosis, they discuss the power of creativity and the hidden gifts of neurodiversity. Jon, who views dyslexia as a superpower, aims, along with his mother, to inspire and empower neurodiverse children through their storytelling. This episode is a valuable resource for parents and teachers, offering insights and guidance for a more inclusive and understanding approach.

For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video on YouTube:  https://youtu.be/qYBVQJqdfo8

From This Episode

About Lynn and Jonathan

Lynn Greenberg is the happiest wife, mom, and grandma. A very retired attorney who loves to cook, exercise, and read, she has seen how positivity with feelings and differences can allow children to grow into happy, productive adults. During COVID-19, when many families were living together with an abundance of unscheduled free time, Lynn and her son Jonathan, who has dyslexia, began to work on the concepts and ideas for Robby. As ideas developed, they became increasingly invested in the character, his story, and the impact this endeavor could have on others. 

Born with dyslexia, Jonathan Greenberg could not read and write like many other children his age. So, instead of giving in to frustration, Jonathan used his struggle as a catalyst for creativity, expressing his ideas through art. Having overcome his learning difficulty, Jonathan has fallen in love with reading. Robby the Dyslexic Taxi And The Airport Adventure exemplify Jonathan’s passion for writing and illustration. Together with Lynn, his mother, and his writing partner, they are already thinking of other stories featuring neurodiverse characters that complement this book. 

Facebook: Creative Cab Co.

Instagram: @creativecabcompany

Website: robbythetaxi.com

Buy the Book:

Robby the Dyslexic Taxi and the Airport Adventure on Amazon

Robby the Dyslexic Taxi and the Airport Adventure on Bookshop.org

Find and Follow Carole and Wisdom Shared:

The Wisdom Shared Team

  • Audio Engineering by Steve Heatherington of Good Podcasting Works
  • Production Assistant and Marketing Coordinator: Kayla Nelson
  • Production Assistant: Becki Leigh

Transcript

[00:00:00] Jon: Parents who are concerned at all about their child, the most important thing you can do is just listen to them. 

[00:00:14] Lynn: Don’t assume because the child is acting out that that’s really what they’re doing. 

[00:00:23] Carole: I can’t wait to share with you the wisdom I learned about dyslexia, neurodiversity, and creativity. 

[00:00:28] Jon: It was like someone had gotten a key and unlocked a door that had been locked for a long time. 

[00:00:36] Carole: Welcome to Wisdom Shared, where parents and their kids are the experts, and where connection inspires change. I am your host, Carole Blueweiss. Today, Lynn Greenberg and her son Jonathan are my guests.

During Covid-19, with a lot of unexpected free time on our hands, and for some of us quarantined with our family members for better or for worse, in this case for the better, Lynn and Jonathan began to work on the concepts and ideas for their book, Robby the Dyslexic Taxi and the Airport Adventure.

Jonathan was born with dyslexia, but he was not diagnosed until elementary school when he was not reading and writing on the level of his peers. Jonathan is now pursuing an art degree in graduate school. 

Lynn is a mother of four and a grandmother. She is also a retired attorney. Jonathan is her youngest. She knew he was intelligent and curious but saw that he was struggling in school in a way that was different than her other kids. Welcome, Lynn and Jon, to Wisdom Shared.

[00:01:31] Lynn: Thanks for having us. 

[00:01:32] Carole: I want to congratulate you on your beautifully illustrated book. 

[00:01:36] Jon: Thank you so much.

[00:01:37] Carole: I’m so excited to talk with you, and to share all your wisdom with my audience. There’s so much that you’ve been through already and are so articulate and creative about how you’re trying to help other people with similar challenges. Lynn, I want to ask you, I’ve heard you say this, that it’s important to listen to your children.

I know you have three other children, and you said somewhere that you’ve noticed that Jon was different, but all kids are different. So, do you remember when you first thought that he needed actual help and you needed to figure out what was going on and why he was struggling in school?

[00:02:13] Lynn: Yes, he is my youngest of four, and I do know, obviously, everyone learns differently, but Jon was, and I knew, super smart. By, you know, two and a half, he knew every Thomas the Tank Engine name, but he couldn’t tell you that Thomas started with the letter T. And if he was watching Sesame Street, he really didn’t like it.

He didn’t want to sing the ABC song. And I knew something was up. He just was learning differently. And people in his nursery school would be saying things to me like, you know, Jon’s just a boy. And he’s slow. And I knew in my gut that that wasn’t right. So, I kept pursuing it. And then finally, we had him tested, and sure enough, classic dyslexic. Super smart but needed to learn to read and write differently.

[00:03:04] Carole: We’ll go more into detail about that and what maybe other parents and kids should look for. Jon, do you remember how you felt before you had a diagnosis?

[00:03:17] Jon: Yes, it was pretty frustrating. I’m not going to lie. There was a lot happening then, and I felt really self-conscious about how I was doing in school, and I was doing poorly then, and the views of my teachers and peers. It was very debilitating in that respect. It was this dark, difficult time, and I was very, very frustrated. I think that’s one of the reasons Mom noticed that I needed help, was because I was frustrated, I was mad. There was just a lot going on, and she picked up on it.

[00:03:55] Carole: What’s your first memory of that? Like how old do you think you were?

[00:03:59] Jon: First memory of me acting out, or?

[00:04:01] Carole: Or feeling that feeling, frustrated. Like that might be hard to pinpoint, but just, you know, more or less. 

[00:04:09] Jon: I remember it was math, specifically, in this case, but I couldn’t read any of the questions. And I had to have Mom help me do them because I couldn’t figure it out. I remember just being so mad that I was, I think I threw a pencil out a window or something, and I was just very angry then.

[00:04:34] Lynn: He was so young when we first realized something was going on. He would sort of act out even in nursery school. And when I say act out, he would get up and walk around. I think it’s important to not only hear what the child is saying, but the nonverbal cues. Why is he not sitting down during or is your child not sitting down during class or why is he acting frustrated like throwing that pencil?

And I think that’s what we all picked up on that Jon was just not happy and not doing well in school on a lot of levels. And he was little, you know, it started like when he was three, four in nursery school.

[00:05:17] Carole: And what were the teachers saying? Were they suggesting that he get tested or get evaluated?

[00:05:23] Lynn: No, unfortunately, they were not. They were being very negative. Jon is slow. Jon should stay back. Jon is a problem. Jon, you know, has issues. And I knew in my heart that that wasn’t the case. I knew he was smart, and I knew something else was going on. I just didn’t know what because I wasn’t as familiar with dyslexia.

So, I started reading about it and asking questions. I have a very, very close friend who’s a pediatrician. I was talking to her about it. And finally, when he was of an age when he could be tested, he was about six, and I found him someone who could test him. And that’s when we found out for sure that I was right.

And his teachers who should have been up on it were not. And I think it’s unfortunate because so many teachers are burdened or don’t have the education and I think this is a whole other conversation, but I think that the experts are not always experts. So, you really have to sort of listen to your gut and listen to your child. 

[00:06:29] Carole: Jonathan, what was it like for you to have a label, a diagnosis? Do you remember that time when there was something you had? 

[00:06:39] Jon: At first, I was a little concerned and frustrated because I, for one, didn’t know what it meant to be dyslexic, but it seemed like a big thing. And once it was explained to me, actually, I felt kind of relieved because this whole time I had believed what the teachers were saying and that I was slow and that I needed to be held back. All of that.

And then to be told, no, it’s not really your fault. There’s just, you learn differently was such relief. I felt heard and validated in a way that I hadn’t really felt prior. And I’d known my parents were listening to me and helping, but they were as uncertain about this as I was. And then once you get that label, you know where to go next. I wouldn’t even call it a label per se. I call it more of a, just a direction. 

[00:07:39] Carole: You’ve used the word neurodiversity. Can you explain what you mean by that?

[00:07:45] Jon: Neurodiversity is a term that is slowly starting to take over learning disability. I don’t know exactly how it came about per se, but I am a strong proponent of using neurodiversity as opposed to disability because disability gives the connotation that it is something to be feared or worried about.

But neurodiversity means more along the lines of just a little different or go about things differently. And to me, being dyslexic or any of the other variants of it, being dyscalculia, ADHD, I believe is in there, and all these other learning differences and overall mental differences, are kind of superpowers. Because they allow you to see things in a way that many others are unable to do, and to me, that is really special.

[00:08:50] Carole: In the book, I love the way that when Robby, who’s the taxi driver or the taxi, right, he’s the taxi, and he has the same neurodiversity that you describe as dyslexia. He finds other ways to get to the airport and just that scene, I think so clearly says in a story much better than you could say in words. There are many ways to do many things.

[00:09:16] Lynn: You bet. 

[00:09:17] Carole: Yeah. So, I really got that from that little part, which we’ll hear more about later. I wanted to ask, maybe first you, Jon, and then Lynn about the school that you went to, after preschool where they actually focused on, or had strategies for people who were neurodiverse. I happen to know it was the Windward School. How do you explain, Jon, how they taught you that was different?

[00:09:41] Jon: Well, the Windward School was specifically for people with dyslexia. It was their main purpose. And so, there was math and there was science and there were these all these other classes, especially the later you got in, you progressed in years, but its main overall goal was to teach children with dyslexia how to read and write. So, they had a special form of education, smaller classes. I believe, Mom, you remember what it was called specifically?

[00:10:17] Lynn: They use a method called the Orton Gillingham method, and obviously Jon can speak to it, but it’s a multi-sensory approach to learning how to read and write. And the children, and Jon, you can take it from here, they learn differently. They have a multi-sense, they do different tasks to get to the same point.

[00:10:40] Jon: Yes, and so that would include things like we had to write in cursive because it stimulates a certain part of your brain that helps remember certain words better and letters. And we had to do air writing, which was literally just sticking your arm out and writing the letters with your arm. And it’s sort of hard to explain without showing it but just sticking your arm out pretty much and forming the letters with your hand. 

Once you’re able to write at a certain point, you had a specific way of how to write essays, this was mostly in middle school And that would include you needed a beginning, a middle, and an end, and you’d have to write the opening and ending paragraphs as less detailed, slightly more detailed, very detailed for the opening paragraph, and that was over three sentences. And then the concluding paragraph would be more details, less details, the least details. It was just a very specific way of going about things.

[00:11:42] Carole: Super interesting, all the things you said, but particularly the cursive writing, which I believe is really not taught so much anymore in the American school system. I know in other countries, they believe strongly in the importance of that exercise and teaching that to kids because of the hand-brain connection. And everything that you said about learning. 

[00:12:03] Lynn: I think we don’t as a society instill that in teachers. It’s very hard, I know, to teach 20, 25 plus kids. You have to teach to the group, and unfortunately, I think this system could work for so many children, but also I think we don’t give the tools to the teacher, the teachers now, to be able to teach to different kinds of students in their classrooms.

And we don’t give them the education to pick up why children are learning differently. And I think even the teachers who do teach kids with learning differences don’t get those tools. And I totally understand; they’re overwhelmed. But also, it would be very hard to give one learning differences teacher the tools to teach 10 different kinds of learning differences.

And I think it would be really important to have in school systems a learning differences teacher who might be able to teach children with dyslexia or language-based learning issues and teach kids with dyscalculia or dysgraphia. And I think that we don’t do that. The umbrella is just too large, and in general, we need to value and help our teachers more than we do, and I think that’s also an issue.

[00:13:22] Carole: Can you explain what those two other words are?

[00:13:26] Lynn: Dyscalculia are people who have problems with doing math. And dysgraphia is the inability or difficulty with learning how to write. 

[00:13:36] Carole: What happened next? Where did you go after Windward?

[00:13:41] Jon: Well, then I went to “normal” school, which was a transition and I was nervous about that. But the second I got into the learning environment and found that once I was remediated there was really no difference in how I go about learning or being alongside non-dyslexic students, that fear pretty fast went away, 

[00:14:11] Carole: Was it like a cure? Which I know it wasn’t, but maybe talk to that. Was it strategies that you learned? Was it that anybody can really learn how to cope with whatever challenges they have? 

[00:14:22] Jon: It was almost sort of like someone had gotten a key and unlocked a door that had been locked for a long time. And once it was opened, you can’t really close it again. And once that had happened, I was able to go the rest of the way by myself. I had been given the training wheels on how to do things.

And once I had gotten used to them, I could even myself get rid of those and do things my own way. Now, it is more of a thing that colors how I do things and less a thing that defines me. 

[00:15:06] Carole: How have your feelings about yourself, how did that change?

[00:15:10] Jon: It’s hard to shake feelings that you get when you’re young, and the things I was told then have stuck with me for a while. It has colored how I view myself, and it’s difficult to shake. But because of all the support and help I’ve gotten over the years from family and friends, I have mostly been able to shake that. And now,, I’m able to view dyslexia as a superpower of sorts, in that I can see things and view the world in a way that many are unfortunately unable to see. And I am happy with that because it allows me to show and find answers to questions that others wouldn’t be able to.

[00:16:04] Carole: Can you give an example?

[00:16:06] Jon: One major thing, and it does connect to the book, was when I couldn’t read or write, the only real way I felt able to express myself was through art. And even after I was remediated, that feeling never really went away.

It was then supplemented by being able to write or read, but the overall, you can tell the world about yourself through images and create stories through it has always been something that fascinated me. And being able to do that has just been really amazing. Being creative has not come easily per se, but it is something that I have lived alongside for such a point that I guess you could say I have a very close relationship to it.

[00:16:59] Lynn: He’s doing so well and being humble that he’s in graduate school in an art program. His artwork is amazing. And even though he has had a difficult time, I think it’s made him into one of the most kind and empathetic people that I know, on top of being super creative. The negative that he started with has turned into an amazing positive and, as his mother, I couldn’t be more proud. And as his co-author with this book, we had an amazing journey together and it’s really taken us to a place that I couldn’t be more proud of and honestly, the reception we’ve gotten has been so amazing that I think both of us feel pretty good about this creative project we’ve done together.

[00:17:46] Carole: I’ve read it a few times and every time I read it, I see or feel or notice something different. What would you like to read? 

[00:17:54] Lynn: Jon, you want to go first?

[00:17:56] Carole: If you could describe the cover of your book and then what we’re seeing when you read the page that you read.

[00:18:03] Jon: The cover involves Robby, who is the main character, in a city. Multiple buildings are around him. He’s just sort of sitting there slash moving forward. The view of the viewer is if you’re standing in front of a taxicab from your perspective. And then you have Robby the Dyslexic Taxi. And The Airport Adventure part is in a plane banner that’s being flown across the page. That’s the cover. I’ll read this little snippet from the beginning. “Every day in the city of Greensboro, a little taxi named Robby wakes up bright and early for work. He loves being a taxi and can’t wait to get down to business.”

And in this image, you just see a close-up of Robby, what he looks like, and just a happy little cab, and he’s excited for his day to begin.

[00:19:02] Carole: Why Robby? Where’d you get that name from?

[00:19:05] Jon: Well, my middle name is Robert. And so I didn’t feel like I had the right to use Jonny the Dyslexic Taxi, but mom felt very, like it was very important that I put myself into this character, so we compromised and came up with the middle name, and I don’t regret that.

[00:19:28] Carole: And I’m just curious, why did you feel not right about using your first name?

[00:19:35] Jon: I wanted to be able to connect to this character, but I wanted other people to be able to too, and if they all knew that it was just the name of the artist, I felt like that would be slightly disconcerting or disconnecting to the viewer, and I just wanted them to be able to read it and be, oh, that’s just a cute taxi.

[00:19:57] Lynn: Originally, I was going to write it and Jon was going to do the illustrations, but pretty quickly we came to realize that Jon absolutely had his own point of view and that we felt that that was very important. So we coauthored it. So, he’s definitely in here in more ways than one, in his thoughts about dyslexia and in his amazing artwork.

[00:20:20] Carole: Truly collaborative effort there. Fantastic. So let’s hear Lynn. Let’s hear your passage.

[00:20:27] Lynn: So after that part, we go to the page where Robby’s getting ready to go to work and you can see people driving in a very colorful city. The word, the picture’s on six and a little picture’s on seven and the words are on seven.” And I’ll read part of the page and it says, “On the outside, Robby looks like your everyday cab. However, there is a part of him that makes him different from the other cabs. And so much more special. You see, he is dyslexic. He has trouble reading the signs he drives under, but he is the most creative little cab you will ever meet.” 

And that’s partly why we decided to call the place where he works the Creative Cab Company. There are other vehicles and other cabs. And to be honest, the reception we’ve gotten is so amazing that we are going to be writing a series called the Creative Cab Company where Robby and his friends and some new friends we’re going to introduce will be in different stories in the series.

And we’ll have just not only cars and trucks that are dyslexic but also have other neurodiverse issues. There’ll be ADHD and a variety of things because we saw that there are not books for children who have things like dyslexia and we wanted children and their parents and educators to see themselves out there in books. And, you know, what better way to do that than to introduce characters that are appealing and that might speak to this community?

[00:21:59] Carole: Yeah, that’s beautiful and very well, much needed, for sure. Since you know dyslexia, but you don’t necessarily know other forms of neurodiversity, how do you expect to do that kind of research to be able to really get into the character?

[00:22:13] Jon: We want to talk to experts and people who have been in similar situations as me but with different learning differences. So that has slowed the process a little bit, but we really want to stick with being as true to what this is as possible. 

[00:22:34] Lynn: And we’ve also come to know over the course of, you know, the journey and Jon in school that many people who may have dyslexia also have maybe ADHD or another, you know, dis. Dyscalculia, dysgraphia and a variety of other things. So, we have a little bit of knowledge, but we also are lucky to be able to tap into a group of people that we can talk to and get their professional opinions on the subject. So, hopefully that will be helpful and we’ll definitely bring that into our stories.

[00:23:07] Carole: Yeah. That’s great for kids to be able to see themselves represented. I wonder if just one of you could just, I’m going to just set this up. And then if one of you could just, I’ll tell you which page to read because it’s one of my favorite. So we have on the page, which is 18, Robby who’s in, he is the yellow taxi and it’s a profile. And then underneath, there are words. And I just wonder if one of you could, maybe Jon, if you could read page 16 and 17? 

[00:23:44] Jon: “Robby had never driven to the airport before, but because he’s a brave little taxi and can get himself out of most pickles, he knows he can figure out how to get to the airport. Thinking hard, an idea comes to him. All I need to do, he thinks to himself, is follow the planes in the sky. He looks up, and sure enough, there’s a plane that is getting ready to land. He revs his engine and follows the plane. As he drives, he begins to see signs with pictures of planes on them. Now he knows he’s going in the right direction. At last, he arrives at the airport. Mr. Walter climbs out of the cab and says, great driving today, Robby. You got me here with plenty of time to spare. See you again soon.”

[00:24:33] Carole: Great. I love that part.

[00:24:36] Lynn: Well, just to set that up, Robby normally takes Mr. Walter to his office and then Mr. Walter had gotten into the car and said, change of plans, Robby. Robby was very worried but realized when he took a deep breath that he could figure it out because he is a creative and imaginative and smart little cab. And so that’s how the story goes, progresses from there.

[00:25:01] Carole: Fantastic. I love it. Jon, do you like to read books?

[00:25:05] Jon: Yes, yes, I really do. I am also a big fan of graphic novels, ’cause they’re a good bridge between my love of art and storytelling. I have been a voracious reader since I was able to read these books. And one of the first ones that I did was 2000 Leagues Under the Sea, the children’s version, because for years I had just seen this blue book with a squid attacking some submarine, and I was always interested as to what was going on behind the cover. The second I was able to, I found myself just reading it and it was as cool as I thought it was going to be.

[00:25:43] Carole: What are some famous people that you know who’ve had dyslexia?

[00:25:48] Jon: Henry Winkler, Richard Branson, I believe Einstein was as well. 

[00:25:55] Carole: I’m just going to add Steven Spielberg.

[00:25:59] Lynn: And I think Princess Beatrice. There are so many writers and creators and engineers and, the kids who are now adults that Jon went to Windward with are an amazing group of intelligent and creative people. And they’ve done so many things with, once they’ve learned how to read and write, what they’ve done with that passion. It’s a varied group, and nobody should feel that they can’t find themselves somehow. 

Some people who are remediated may learn how to read and to write, but to varying degrees. But no matter what, if they tap into their passion, they’ll be able to express themselves in so many different ways, and they should not feel negatively about it. It’s really, as Jon says, his superpower. And I think everybody has a superpower. They just need to be open and tap into that.

[00:26:54] Jon: Just for example, two people who I went to school with, one of them has gone on to be an actor, and the other is working in engineering, specifically aerodynamic, helicopters and I believe even airplanes. So, you get a very wide range of things going on there.

[00:27:14] Carole: So I know you want to do a series. Can I put in a request for an episode in your series?

[00:27:19] Lynn: Okay, go ahead.

[00:27:22] Carole: I would love to read a book about seeing all these kids when they’re really young and all their personalities, you know, sitting at the desk and the teacher’s reactions to those different personalities, and then find out in the later pages who they are as adults.

[00:27:40] Lynn: Ah, well, it would have to be a little cabs and little trucks who grow up, but that’s interesting. That’s an interesting thought and we can talk about doing something like that.

[00:27:54] Carole: The cabs that ended up using engineering skills versus acting skills.

[00:27:59] Jon: Yeah.

[00:28:00] Lynn: I think Jon and I see this book being sort of Thomas the Tank Engine like, and so each of these characters will have some sort of difference and how they explore that is how they learn and grow. And so there will be a story for each of them and watch their growth as, they learn to navigate whatever their differences.

[00:28:25] Carole: And it’s great for kids too, that have a friend who is maybe getting bullied or, you know, that can be shown that, you know, this is their experience. Well, read about the experience and that might change not just kids that have the difference themselves, but the friends of the kids.

[00:28:42] Lynn: When we did a book signing, a child, you know, came up to Jon and said, thank you for writing this book. I’ve never seen myself in a book. And I, you know, it made me feel so good because I could relate to what the taxi was going through. And we did go back to Windward and Jon read the book to a group of kids and he was treated like the rock star that he is.

They were asking for his autograph and saw themselves and felt seen and heard and really appreciated the fact that we had done this book and that Jon as an adult had been in the same, you know, same shoes that they’re in now, and some of them were scared and learning and struggling.

And then when they saw what an amazing outcome that they could be successful, I think they really felt very positively. And like I said, were asking John for his autograph. It was, it was amazing.

[00:29:39] Carole: And I also see this, just like I see my podcast as an educational tool for healthcare workers and teachers and parents to learn the perspective of their children, you’re creating an encyclopedia of what it’s like to be different. And so many people need to read that because there’s no other way to really understand it but through story and art and words. 

[00:30:01] Lynn: I had read the book to my grandson’s then first-grade class. And, you know, in first grade, many kids are learning how to read, they’re starting. It was an amazing conversation because the kids were all asking, well, what does dyslexia mean? And what do you mean people can’t learn to read and write? And it opened up a conversation and you could see that some of the kids who are struggling who may or may not be dyslexic were very interested. But as a whole, you know, the teacher and the whole group were very responsive and interested to know that other people could be, quote unquote, a little different from them. I think it’s good for everyone to have that conversation.

[00:30:41] Carole: Absolutely. You’ve already given, I think, a lot of advice for parents and for kids, but if there’s anything else you’d each like to say that you hadn’t said about advice or even anything else that you’d like to say here, go have at it.

[00:30:55] Jon: I will say this goes out to parents who are concerned at all about their child. The most important thing you can do is just listen to them. I remember nights after I was diagnosed where Mom would just sit reading. She just spent so much time trying to understand what I was going through and before then even she took the time to just listen to her gut and listen to me and that in itself was the greatest thing that could have happened. So, just listen to your child, trust yourself, and things will work out. 

[00:31:36] Lynn: Think it’s really important to listen not to the noise out there, but to what you think is going on and to listen to your child, the verbal cues, the nonverbal cues. Don’t assume because the child is acting out that that’s really what they’re doing. There’s just a lot of frustration in not being seen or heard. And if we don’t listen to what the child is saying, I think then that child will grow up without the proper tools that he or she needs.

Unfortunately, our communities, our jails are filled with people who were not seen and not heard, who don’t know how to read and write. And it’s a shame our society does not value education the way it should. And, I think it’s important for all of us to really focus on our little corners as best we can and that’s our child and our families and what you know he or she may or may not need. That’s my take on it.

[00:32:40] Carole: How did you come up with a taxi as the main character?

[00:32:45] Lynn: I had been reading. It was, Covid, quarantine, and unfortunately, you know, we all couldn’t see our families, and I was reading on FaceTime with my grandchildren. And Jon was home from college, and as an artist, it’s pretty hard to do art virtually. The idea came up one day, maybe we should write a children’s book and focus on what other people might like to see.

And Jon was happy to be doing more art, and the idea grew from there. And it sort of flowed. What would a car do if it was trying to drive and couldn’t read the street signs and was getting lost somehow? That’s how it all started and that’s how the conversation began. And the ideas grew from there.

[00:33:34] Carole: Car popped in first.

[00:33:36] Lynn: Jon and I spent a lot of time in the car because Windward is a good 45 minutes from our house, so we would always be in the car together, and back then we would listen. Audible wasn’t around, but we’d have books on tape or CD. And so we were always having book conversations, and I think honestly that the idea for the car grew from the fact that, you know, I was driving Jon, and, you know, I can read the street signs but what if I couldn’t? That the navigation wasn’t great back then either. So, you know, how would I get to where I needed to go? And that’s how Robby was born.

[00:34:18] Carole: And how did he become a taxi?

[00:34:23] Lynn: Jon used to call me his taxi. So I think that’s kind of how it was. 

[00:34:28] Carole: Where can people buy Robby the Dyslexic Taxi and the Airport Adventure?

[00:34:34] Lynn: You can buy it on Amazon. You can buy it, go into different bookstores and ask and they can order it on bookshop.org or barnesandnoble.com. We have a website, the Creative Cab Company, where people can go and find out where to buy it or certainly ask us any questions that they might have. We’re on social media as the Creative Cab Company. We’d love to hear from people and hear what they have to say about the book and the upcoming series. 

[00:35:04] Carole: When do you suspect that might be coming out?

[00:35:07] Lynn: Well, Jon’s working super hard in grad school, so, and we’re talking to all these educators and clinicians, so it’s taking a little while. But I would say in 2024. 

[00:35:19] Carole: Thanks for joining me. I learned so much. I love hearing your creative process and so much brain work on so many levels. It’s just, you know, nice to hear the inside story.

[00:35:30] Jon: Thank you so much for the opportunity. Your turn, mom.

[00:35:32] Lynn: Well, thank you for having us. This has been wonderful.

[00:35:35] Carole: So there you have it. A great example of a dynamic duo who converted an obstacle to learning into a vehicle to teach others. 

I love meeting interesting guests like Jonathan and Lynn who are on the front lines. They know what it takes to move through a challenge, which in this case can become a superpower that spurred them to write and illustrate a book in order to help kids and parents see their strengths. 

I encourage you to read and meet Robby the Dyslexic Taxi. He showed me that there are many paths to the same destination. And stay tuned for more in their series. There will be links in the show notes on where you can find these books.

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.

Episode Summary

Join me as I welcome back Amy and her daughter, Lizzie, for an insightful discussion. In this episode, we delve into Lizzie’s harrowing encounter with toxic shock syndrome (TSS), exploring the severe implications and her journey to recovery. Amy shares the critical moments that led to her life-saving discovery of Lizzie’s condition and her quick response. We also discuss Lizzie’s candid reflections on managing her menstrual health post-TSS, the challenges she faced during her recovery, and the significant changes in her life post-illness, including the recommendation to avoid tampon use. This episode serves as an eye-opener on the crucial aspects of TSS and menstrual health awareness.

For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video on YouTube: https://youtu.be/F_rYxdV3Qwc

Resources

Days for Girls

Find and Follow Carole and Wisdom Shared:

The Wisdom Shared Team

  • Audio Engineering by Steve Heatherington of Good Podcasting Works
  • Production Assistant and Marketing Coordinator: Kayla Nelson

Transcript

[00:00:00] Amy: She was in a room by herself and I was in there with her and I was praying because her temperature just kept going up. And I just knew she is a sick girl. And as I was praying, something came into my mind: the words take her tampon out. And I thought, am I imagining this? Like, why am I thinking of a tampon? He opened the door and yelled to the nurses, we have a toxic shock patient. 

[00:00:29] Carole: That was Amy Nichols, who I interviewed along with her daughter Lizzie on the last episode of Wisdom Shared where we talked about Matthew, who has a diagnosis of autism, and we learned about how food dyes affected his behavior.

Well, today’s story focuses on his sister Lizzie’s near-death experience. I explained on the last episode how I bumped into Amy and Lizzie sunbathing on a driveway. But what I didn’t tell you is that Lizzie shared with me a bit about her struggle with something that sounded to me like Long Covid, but no, Lizzie was describing the long-term effects from toxic shock syndrome or TSS, which she acquired back in high school. She’s now a college student studying to be a physician assistant. 

[00:01:13] Lizzie: He said to me with the most terrifying stare I’ve ever gotten from a doctor that I cannot use a tampon again or I very much could die. So that was very scary and hard to hear because I had struggled with heavy periods my entire life. 

[00:01:30] Carole: Welcome to Wisdom Shared, where parents, their kids, and people on the front lines are the experts, and where connection inspires change. I am your host, Carole Blueweiss. Hearing Lizzie’s story takes me back to my own teenage years in the 1980s, when the media was reporting daily about new cases of TSS. I remember feeling terrified of this illness that was causing people like me to become mysteriously sick. A research task force finally found that Rely tampons was the cause of the outbreak, and once they were taken off the shelves, cases went down. Today, it’s considered to be rare. Let’s listen to Lizzie’s story and how Amy literally saved her daughter’s life. 

[00:02:13] Amy: So I told my husband, we’ve just got to get her to the hospital. And my husband – she’s 6’1, my husband’s 6’4 – he carried her out of the door like a baby. She was so limp and so sick. We got her to the emergency room. It was right at the beginning of the fall of 2020 when Covid was just coming about. 

[00:02:35] Carole: When did you realize that she was so sick that she needed to go to the emergency room? 

[00:02:39] Amy: She went to the bathroom and I was downstairs doing something and I heard her fall and I realized that she had fainted and she’d never fainted before. So that was very scary to me. And her face was bright red, like the worst sunburn you could ever imagine. And a rash on her belly. She was vomiting, she had a very high fever. So when we got her to the emergency room, she could hardly sit up in the wheelchair. They were trying to ask her questions about our insurance and all of this.

And I was, just wanted to scream, get her into a room. Like she’s going to fall out of this wheelchair. And of course, everyone was super nervous about Covid. So they didn’t want to get too close to her because we didn’t know the ins and outs of Covid at that point. So they said, sure enough, you know, we think she has Covid and they were getting ready to do the Covid swab on her.

She was in a room by herself and I was in there with her and I was praying because her temperature just kept going up and I just knew she is a sick girl. And as I was praying, something came into my mind: the words take her tampon out. And I thought, am I imagining this? Like, why am I thinking of a tampon?

So, I still can see it in my eyes. I looked down, she’s lying on this bed in the emergency room, lifeless. And I said, Lizzie, do you have a tampon in? She couldn’t even talk to me. She just looked at me like, what? I said, do you have a tampon in? No answer. So I literally, sorry to be graphic, spread her legs and sure enough, I immediately could see all this awful discharge that was like black and green. 

My heart dropped and there was a tampon covered in just awful discharge. So I ripped it out and just as I’m taking it out, the emergency room doctor comes in and he’s young. I would say mid to late twenties. The look on his face, he looked at me and I looked at him and he opened the door and he yelled to the nurses, we have a toxic shock patient.

And from that moment on, oh my goodness, we had people running in and out of the room, hooking her up to everything imaginable. And that’s when they started yelling. So I knew, wow, this is bad. So I stayed out in the hallway and that doctor, sweet, sweet doctor, he was so nervous. He came out and he told me, he said, I’ve never had to tell anyone this. But I don’t know that your daughter’s going to make it. We need to transport her to the bigger hospital on 86th Street. And I can’t promise you she’ll make it there. Her blood pressure is dropping so quickly. 

They brought this team in and I thought they were going to fly her down. It’s only a couple miles. They’re called the transport team. I immediately thought that meant helicopter, but they transported her by ambulance. They took the best care of her and got her down to the next hospital. And when we got there, that doctor then came out, told me the same thing. They had no idea if she would live. Again, I was out there praying my rosary cause I’m a very devout Catholic.

And she said, I’m going to put a PICC line in her neck because we’ve got to get some antibiotics in her immediately. And just that procedure itself, she could die. Are you okay with me doing it? She said, but if I don’t do it, she will die. And I said, I want you to do whatever you know is best. And she said, okay, you keep praying and I’ll be the doctor.

So she went in and then I didn’t see Lizzie for a couple of hours. And when I came in to see her, she was already showing signs of life. Antibiotics were kicking in and she slowly got better. It was quite a miracle. They just kept telling me the first 24 hours are critical. We don’t know if she’ll make it through the first 24 hours, but if she does, then that’s a really good sign that her organs are going to come back because her organs were all shutting down.

And we had the priest come in and do the last rites over her and it was awful, but here she is. Here she is. She is our little miracle. 

[00:06:39] Carole: What parts of that, Lizzie, do you remember?

[00:06:42] Lizzie: Not much, I won’t lie. I remember being super sick, but I think at that point I’d been vomiting so much, I was so dehydrated. I don’t think I used the restroom at all. And I think that was the killer that didn’t let me realize I still had a tampon in because I remember I was on my period completely normal before then and then all of a sudden, I just got super super sick. And I fainted and I really do not remember much. It’s so weird. It was like a complete fever dream that I was in. 

When I really think back to it, I remember maybe 30 minutes of just staring at the wall in my room, but I don’t remember much after that. I know when my dad was trying to carry me out, I remember sitting up and being like, oh no, I can walk and just falling straight back on my bed and being like, yeah, I can’t move. 

[00:07:29] Carole: You mentioned that this changed your life. What do you mean by that? 

[00:07:34] Lizzie: So many things. I remember being in the hospital and the doctor’s telling me, okay, so with toxic shock, almost all of your top layer skin will peel off. And I remember sitting there thinking, oh my gosh, that’s not true. That’s not going to happen to me. And they’re like, we don’t know if it’ll be your entire body or just like your hands and feet.

And I was like, no way. Like my skin is not going to peel off. That was not true. My skin started peeling in the hospital. My hands and feet just peeled off, which was so weird. It just would come off in huge sheets. It was not painful. And then randomly, probably six months after I was back in school, I was totally fine, doing sports and everything, and then all of a sudden my hair just started falling out.

And that was just very frustrating to go through because it was already so awful to miss so much school and go through that. In the shower, big clumps of hair were coming out in my brush. And just when I ran my hands through it, it probably took maybe a week. But almost half my hair fell out. My hair, I normally have a lot of pretty thick hair and it was very thin. I had toxic shock in probably 2020 and I think it probably took me until the end of 2021 to even get my hair fully grown back. 

Now, I’m still having repercussions from that and I cannot use a tampon ever again which was extremely frustrating for me to hear, but the doctors were very honest and blunt in the fact that I am super prone to getting toxic shock again, and if I do, the odds of me living through it are much slimmer every single time that you get toxic shock afterwards.

And he said to me with the most terrifying stare I’ve ever gotten from a doctor that I cannot use a tampon again or I very much could die. So, that was very scary and hard to hear because I had struggled with heavy periods my entire life. And the doctors were actually discussing that with me. And that when I was on my period, I always used a super plus tampon and even a pad as well because I was bleeding so much and the doctors explained that those super plus tampons really should not be manufactured. Like that much cotton should not be pushed up into your body at all. And so to have that in for a long period of time is super dangerous. 

And that’s why they think I did get toxic shock because I had that big of a tampon in. And so that overall was just very frustrating and hard for me to deal with because then thereafter my periods were so heavy. And I can’t use tampons and trying to do that with sports just became really complicated and overwhelming for me to deal with.

But yeah, luckily my hair has grown back. I haven’t had anything major since then, but I am super prone to just infections in general now. I keep getting infections in my toe. I got a pedicure the other day and about two days later, I had a toenail infection. 

[00:10:27] Carole: How do you manage having your period? 

[00:10:29] Lizzie: I really can only use pads, but just recently I had to be going to my gyno a lot just because I was so sensitive down there and they mentioned that the name brands of pads and tampons typically have bleach in them and that completely messes up all of your pH and everything down there, which I’m already super sensitive about. So just recently in the past month, I had to switch to all organic cotton pads and they’re about the same price as a normal name brand.

I also had to go on to birth control to control my levels of bleeding because I just could not handle them without tampons because I played sports all throughout high school consistently. And it just was not working out very well for me. But that has helped, but I am still just in general trying to recover. I really don’t think my body is fully recovered at all because I’ve just had so many weird infections and sicknesses from the past couple of years.

[00:11:26] Carole: Did they explain to you why an abundance of cotton is not a good idea to have in your body? 

[00:11:33] Lizzie: Did they explain to you? 

[00:11:34] Amy: No. No, they just said that if you have a blood flow that warrants a super or higher, meaning a super tampon or a super plus, you really need to look into why are you bleeding that much and what can you do to help that before you start buying thicker tampons, because the thicker the tampon, the bigger area it can harbor the bacteria. That’s the way I understood it. 

[00:12:03] Carole: Don’t they have now those cups?

[00:12:05] Lizzie: So, I can use the cups. I will say they are a lot more difficult than a tampon. I’ve been trying to use them for probably a year now and I’m still not great about it. I do appreciate the fact that those exist now and that companies are becoming more aware of how dangerous tampons can be. But it’s definitely a hard transition.

[00:12:29] Carole: Anything else about that whole experience to help other people?

[00:12:33] Lizzie: In general, I just tell everyone to be so careful. I mean, there’s so many recommendations of how long you should keep one in. And it’s hard because I did it forever. I kept tampons in for longer than you should. I just ended up having it happen to me years later. I was using tampons for years before then. I just always recommend people not to sleep in them. I mean, that’s already a recommendation, but it just is impactful to hear it from me, someone who actually had that happen. Because when you just read that out of box, you’re just like, oh, that’s just a suggestion.

At least all of my friends that I’ve told and explained to. I explained to my whole cross country team as well. And they, you can see the looks on their faces. I mean, everyone is shocked to really hear that you can get that disease from tampons. So I think just in general, to be a lot more aware of how long you have one in.

[00:13:22] Amy: If you use a super plus, you can go longer, but you might lose track of it. You know, you don’t have that feeling of, gosh, I have a yucky feeling, heavy tampon that needs to come out. You don’t have that feeling because it’s just stays drier longer. Maybe that’s the key there. Don’t ever use those that give you the ability to stay longer. Use the ones that are thin. So, you’re going to have to change it more frequently. That bacteria is not going to have time to grow. 

[00:13:50] Carole: And have you ever come across this in your studies at school or anywhere in your young life about even knowing before this happened to you what, that there is such a thing as toxic shock?

[00:14:01] Lizzie: No, not at all. And that’s the crazy thing is you don’t hear about it at all. Like, I remember, I read it once, and I just remember, it was like in the back of my mind, I remember being like, oh, I read that on the side of the box, but no one talks about it really. I mean, I’ve been in so many different biology classes, and I have so many friends who took pre-med classes in high school, and it’s just not talked about. And it is obviously a rare thing, but it can happen to so many people. And so it is just surprising that it’s not discussed more. 

[00:14:35] Carole: I remember that whole toxic shock thing happening around the time I think that I got my period, maybe at 16 or 17. And I remember being very careful. I stopped taking the plastic ones and I got the cardboard ones, which are not as easy. And I changed very often, which is a total pain, and I did not wear them at night. And it’s not even because I read anything. It was just that I was seeing what was happening to girls on TV. They were really blasting it because it was so prevalent. 

As I was listening to you, was there any correlation? Like, it sounds, the way you told the story was, clearly, Lizzie, you were sick, and the way your mom told the story, so you’re sick and you’re in bed and your mom’s praying, they know it’s bad, but nobody seemed to be in the room really worrying too much until your mom found the tampon and you could see something there. So what were the doctors trying to figure out in your opinion between the time that you opened up her legs and the time that she was just lying there? Were they actively considering things that they were sharing with you or what was your sense or were they dealing with other patients or? 

[00:15:44] Amy: Honestly, they thought she had Covid. That was the only thing on their mind. She has Covid. We need to isolate her. We need to isolate you. They wouldn’t let me leave the hospital because whatever she had, I had, in their mind. Really interesting, because after all this happened, and we found out she had toxic shock, I had so many nurses come to me and say, we have got to quit thinking everything is Covid.

We’ve got to stop this. Clearly, we weren’t the first patient. They had missed something. And thank goodness we’ve come so far. They don’t do that anymore. But boy, at the beginning of the pandemic, that’s all they could think about. And you know what? My sweet little girl here would have died and it had nothing to do with Covid.

It’s very scary to think of. All they wanted to do was isolate her, and keep her away from everyone, not realizing there was something inside of her that was killing her. So, I’m glad that we’ve come away from that thought process. 

[00:16:39] Carole: Is there anything I didn’t ask you that you’d like to say? 

[00:16:42] Amy: I don’t think so. I just hope that I can help other people because I know how I felt in the beginning, I just felt so lost and I just did not know what to do. I wanted to be the best mom I could be, but I also wanted to keep my sanity and I wanted my family to be safe and I just, I didn’t know what to do and I hope that whatever little tidbits I’ve learned can help someone else. 

[00:17:07] Carole: And I’m sure it can. Thank you very much for being here. You really shared a lot of your personal thoughts and some very personal things. And I know my audience will appreciate it. I wish we talked about these things more. Having you be brave and courageous and generous, it means a lot. So thank you. 

[00:17:27] Amy: I’m glad we met in the driveway.

[00:17:33] Carole: To delve deeper into the details and understand more about toxic shock syndrome, we encourage you to reach out to your healthcare provider. Remember, the insights and stories shared in this podcast, as well as the resources listed in our show notes, are for informational purposes only and should not replace the guidance of a medical professional.

Chatting with Lizzie and Amy really opened my eyes. I have always taken menstrual health for granted. Here in the States, most of us can easily get our hands on all kinds of period products. But imagine this, over 5 million girls and women globally can’t. They’re missing out on school and work, facing health risks, and feeling isolated, all because they don’t have what they need for their periods.

This isn’t just about missing a few days here and there, it’s about lost opportunities, serious health issues, and deep psychological impacts. I came across this amazing organization, Days for Girls. They’re all about empowering communities where menstrual products aren’t readily available. They’ve already helped over 3 million girls worldwide by providing menstrual health resources and education. Want to know more? Check out the Days for Girls link in the show notes. 

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.

Join us in a touching conversation with Amy and her daughter Lizzie as they share their experiences with 18-year-old Mathew, who was diagnosed with autism. Amy discusses the challenges of raising Mathew, including how eliminating certain food dyes helped reduce his aggressive behavior. Lizzie shares insights on being an older sister to a sibling with autism, highlighting the unique bond they share. This episode offers a candid look into a family’s journey with autism, filled with challenges, love, and resilience.

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/NLxFbGl-0vY

Resources

Find and Follow Carole and Wisdom Shared:

The Wisdom Shared Team

  • Audio Engineering by Steve Heatherington of Good Podcasting Works
  • Social Media and Marketing Coordinator: Kayla Nelson

Transcript

[00:00:00] Amy: Matthew at that time was eating a lot of snacks. He loved the little jelly fruit snacks. Skittles and M&M’s. Ironically, that was one of our reinforcers for his behavior. Oh, you’re doing such a great job. Here, have some M&M’s. I had no idea that the dyes in that candy was then in turn making his behavior worse.

[00:00:26] Carole: That was Amy Nichols. And before we go into the interview, I wanted to explain how I actually met Amy and her daughter, Lizzie. It’s an example of how I meet many of my guests in a very random, spontaneous way. And I think that’s a lot about what this podcast is about, the idea of connecting with other people who you might think you have nothing in common with, or you really don’t know until you start hearing their stories.

So, before we go into the formal interview, I will tell you a little story. And then we’ll hear what Amy and Lizzie have to say.

I was walking into my home, and I saw two people lying on the driveway and I thought to myself, this can’t be safe. So, I told the two people that they might want to get up and get out of the way of the oncoming car. And that’s how I met Amy and her daughter, Lizzie. I started to speak with Amy about her son, Matthew, and I knew that that was a story that other people should also hear. 

I also included Lizzie as a guest on this podcast episode because I think that siblings have a lot to share about their experience when there is someone in the family that’s been diagnosed with autism. I’ll let Amy introduce herself.

[00:01:50] Amy: I live in Carmel, Indiana. I am 51 years old, and I am a virtual teacher. I’ve been in the education field for 22 years. I have three children and I’m married to my husband, Greg. And my oldest son is 22, graduated from college. And then my son who has autism, who will be 18 in February. And then my daughter here with me is Lizzie.

[00:02:14] Carole: I asked Lizzie to describe her mom, and this is what she said. 

[00:02:17] Lizzie: So, this is my mom, Amy Nichols. She’s been a teacher all my life, so that’s what I’ve always known her as. And she is one of the best moms out there. She is very strong and patient. And definitely inspiring for our community and friends. I’ve definitely learned a lot from her in my short time on this earth so far. We are very close. 

[00:02:40] Carole: That’s great. So now that you know a little bit about Amy and you’ve heard Lizzie’s voice, I want to welcome you all to Wisdom Shared, where parents and children are the experts and where connection inspires change. I am your host, Carole Blueweiss. Welcome, Amy and Lizzie. I met you guys literally on the ground, in a driveway, as you were relaxing on your vacation, sunbathing.

The randomness of our meet was unique, and I was very lucky because as soon as I started talking to you, Amy and Lizzie, I knew that you guys would have so much wisdom and interesting stories to share with my audience. Not only are you in the education system, but you also have a son who was diagnosed with autism. Autism can range from so many different ways of presenting. It’s just a word that describes a whole lot of people out there.

[00:03:37] Amy: I wish that you could see him right now because he is six foot tall. He has a beard growing right now. We try to keep him clean shaven as much as we can, but it grows pretty fast.

But imagine that and then imagine him sitting in front of Barney, the dinosaur, and singing and clapping his hands and truly behaving as a two- or three-year-old, but yet he has a beard. Before we did this podcast, I was looking at his baby book just to look back at some things and I saw a little entry where I had written that he was saying E-I-E-I-O, and I was so proud of him.

I think he was like one and a half or two when we were singing Old MacDonald Had a Farm. And I had to laugh because that’s still one of his favorite songs. So now he’s 18, and I still love hearing him sing E-I-E-I-O, because it’s still a favorite song. So, I guess he’s forever a child. He’s my man child. 

[00:04:36] Carole: How did you find out that maybe there was something that needed further investigation?

[00:04:41] Amy: When my son was born, it seemed like a very normal birth. He passed all those prenatal tests. We brought him home and thought everything was just fine. And then at two weeks old, he got RSV, which is a very scary respiratory infection. And he was hospitalized for two weeks. During that time, there was an outbreak of RSV in our town, and the hospitals were bursting at the seams.

And I do recall that he was on an oxygen machine and many times that oxygen machine alarm would go off, meaning that he had low oxygen. But because the hospital was so busy, sometimes it would take hours before nurses would come in. When he came home from RSV, he was limp. He did not have good muscle tone.

He wasn’t meeting his milestones. His cry was weak. And for a while, we thought it was just him trying to bounce back from the RSV. And I talked to my pediatrician several times and he suggested that we get a CT scan of his brain just to see if there was anything that just didn’t look right. So, we got the CT scan and it came back just fine.

As we know, moms seem to have an intuition and I just felt in my heart that something wasn’t quite right. So I spoke to my pediatrician again and this time he said, you know, if you really want to take this further, why don’t you go to Riley Hospital, which is one of the best hospitals for children in Indiana, and get an MRI done and then they can look at things a little bit closer. 

So, we got the MRI done and as soon as the neurologist put the CT scan up and the MRI, he said that, yes, there indeed was a major issue and it showed up on the CT scan. So, he did not know how this other hospital missed that. And the MRI was really bad news.

And he was very kind, very compassionate. But he said, honestly, I don’t know what the future is going to look like for your son. I don’t know if he’ll ever sit up. I don’t think he’ll ever walk. I don’t think he’ll ever talk. It was just a very dark, grim outlook. And honestly, my husband and I were just in a fog. We weren’t expecting that at all. 

[00:06:47] Carole: He’s your 18-year-old now, right? 

[00:06:49] Amy: Yes, he is my 18-year-old. So, at that point, Matthew was just under a year old. So, we immediately reached out to First Steps, which is a government program that brings therapists into your home, speech therapy, occupational therapy, physical therapy.

So, we started doing that right away, four to five times a week. At that point, I took a step away from my career as a teacher and decided that I would take a few years off because I wanted to be in the home with him. And even though the therapists were coming so frequently, we weren’t seeing a lot of progress.

And it was very discouraging because they would work tireless hours and they were just wonderful and so creative, bringing in all these toys and fun things, but we just weren’t getting anywhere. But what we noticed was as soon as the therapist would stop working on one skill and move on to another, Matthew would eventually get that skill.

It just might be 6, 8, 10 months down the road. So, his delay was more like a year to a year and a half behind every single thing we were trying to do with him. So that was really hard to deal with because we started thinking like, how is this going to manifest into the future? What is that going to be like? What is that going to look like? 

[00:08:05] Carole: How did you feel about the fact that he was learning, it just was taking longer than was considered the correct milestones? 

[00:08:12] Amy: It gave me hope that he was going to, I don’t want to say come out of this, because as a teacher, my gut feeling was that we have a special needs child and he’s probably going to struggle forever. But it definitely gave me hope that he will hopefully someday run on a playground. The physical therapist was able to help with things like that. And the one thing that kept coming back to me, though, was cognition. I could just tell that his cognitive level was very low. And ironically, that is exactly where we are now.

He’s 18, but his cognitive level is that of about a 3-year-old. So even though his physical strengths improved, his cognitive level did not. And I think it’s important for me to share, too, that his diagnosis, he has moderate to severe decreased white matter of the brain globally. 

And so sometimes people will have decreased white matter in one section of the brain. And so, then they can focus on using other parts of their brain to compensate for that. But my son, it’s globally. So, every aspect of his brain is severely weakened. And so we have to find different routes to fire those neurons and to try to help him learn things. Ironically, socially, he’s really strong, and I think that there is a common misconception that autistic people are introverted, but brilliant. And Matthew is the opposite of that. He is extremely social, but very low cognitively. 

[00:09:46] Carole: How old was he when he had that diagnosis? 

[00:09:49] Amy: Strangely, we did not get the autism diagnosis until two years ago because he was so strong socially through the years and the school system, they never tested for that. They said, we don’t really feel like we need to do that because his personality is so strong.

We just think he is moderately mentally handicapped. But it wasn’t until puberty set in that I started really seeing those textbook autism characteristics such as the flapping of the hands when he’s overwhelmed. Or the rocking back and forth. He never had that before. He was just a very low academic child with low muscle tone.

But once he hit puberty was when we could really tell that he was showing signs of autism because he did have those very distinct behaviors that you see. The other thing that really started in puberty is he would start having meltdowns and that’s one of the most difficult things, I believe, in raising an autistic child is the meltdowns that can escalate and become aggressive.

So, when all of that started was when I really realized, wow, we need to go back to the drawing board. We probably need to have him diagnosed, retested, and see what kind of things are out there to help us because we were feeling so overwhelmed. He was tall and strong. He was pushing. If he got really upset, he would punch a hole in the wall. And so, it became a big problem. So, we knew that we needed to get extra support. 

[00:11:13] Carole: How did you go about getting support? 

[00:11:16] Amy: I went back to our physician, and I said, you know, I definitely think he needs to be retested. And he suggested that we go to the school system and ask to have the whole battery of tests done again.

And at that point he had reached an age where they don’t normally do that in the school system. So, they suggested that we do it outside the school system. And I’m actually glad that we did that because it was during the whole Covid time that we were going through. And so we were able to do it virtually, which I think was a lot easier on him.

They could just tell by the questionnaires that I filled out. They did ask for a lot of video, which I was happy about because that’s a great way for me to be able to show what I see happening at home. So, I submitted a lot of videos of his behavior. 

[00:12:02] Carole: And then at the end, you had a diagnosis. 

[00:12:05] Amy: Yes, so then I got the autism diagnosis, and it really didn’t change a lot for us other than there’s a lot of autism support groups that you can join. I would say probably the best support that I have gotten is from online social media groups like Facebook groups for special needs parents. I would just read and read for hours all different things that people have tried. Some things worked, some things didn’t, and it made me sad too because I know that there are a lot of people out there that at that point, they give up and they put their child in a home because they simply can’t do it.

They might be a single mom that’s working long hours and they can’t come home and have their child pinching and pulling hair and putting holes in the walls. I’m very blessed to have a very supportive husband that helped me. And we’re also very spiritual, so we turn to prayer a lot. Because we didn’t know what else to do.

You know, we were so overwhelmed, but after a lot of prayer and a lot of research, I came across the connection between food dyes and autistic children. And wow, was I shocked, because Matthew at that time was eating a lot of snacks. He loved the little jelly fruit snacks. He loved Goldfish. We were giving him Gatorade.

Just a lot of the things. Oh, Skittles and M&M’s. Ironically, that was one of our reinforcers for his behavior. Oh, you’re doing such a great job. Here, have some M&M’s. I had no idea that the dyes in that candy was then in turn making his behavior worse. 

[00:13:38] Carole: Now, was it the dyes for sure? Could it have been the sugar?

[00:13:42] Amy: We found out very quickly when we eliminated red, blue, and yellow dye that we saw a huge change in his behavior. And even some like chocolate milk has red dye, which is such a strange thing. Some applesauces have dye. We just couldn’t believe it. Within probably two weeks, we saw a huge change. 

And we did not eliminate all sugar. He still eats things that have sugar in it. He’ll have cookies. He just doesn’t have cookies with red icing. He’ll have brownies, but he just doesn’t have sprinkles on top. It is quite amazing. We went probably, I would say, six months without any dye. And we saw a huge change. And then last Christmas, the night before, we had a nice dinner for Christmas Eve, and he had peppermint ice cream.

I wasn’t even thinking about that being red dye, I mean, I should have, but that next morning was some of the worst aggressive behavior we have ever seen. And I was racking my brain thinking, what did he have, what did he have? And it hit me that he had peppermint ice cream. So, I went back and looked at the container and the ingredients and sure enough, that was like one of the top ingredients was the red dye.

[00:14:49] Carole: That there was some allergy or some reaction to his behavior with the dye.

[00:14:53] Amy: In one of the support groups, I was seeing over and over parents saying, eliminate dyes, eliminate dyes, over and over. So, then that caused me to go back and research it. And I found out that in Europe, many of those dyes are against the law. They know that it has a connection to children’s behavior. So, they aren’t even allowed to have it anymore.

Yellow number 6, blue number 1, and red 40 are the top ones. And I had read that the FDA in the United States admitted like 10 years ago that they knew that it indeed has a connection to children’s behavior. And it’s not just autism, it’s all children’s behavior. It causes hyperactivity, autism. It manifests more in aggressive, hyperactive behavior. So, it’s just very frustrating that they know, but, you know, they have not taken that out here. 

[00:15:48] Carole: Wow, that’s so interesting. You have to wonder that so many children are being diagnosed with ADHD and hyperactivity and there’s been such a debate about whether it’s because it’s being overdiagnosed. And then now one could ask the question, is it their diet? 

[00:16:04] Amy: And what’s interesting is if you look now, for instance, Goldfish. You can get all different colorful Goldfish and now on the front of the packaging, it says colors sourced from plants because they have felt the pressure to change that. So that’s a great thing.

I know Sun Chips; they took the dyes out of all of their chips. I’m pretty sure that Kraft Macaroni and Cheese has a separate type of dye-free mac and cheese now. Another thing that I didn’t realize is many medicines have dye in them, so like Pepto Bismol or cough syrup. We used to give Matthew Benadryl when he was hyperactive because our physician suggested that.

I noticed when I would give him the Benadryl, it got worse. But then once I started studying about the dyes, the Benadryl pills are pink and they’re full of red dye. So now I buy dye-free Benadryl and I buy dye-free ibuprofen and dye-free Tylenol so that I’m not counteracting what I’m doing. When I’m trying to heal him from something else, I’m not giving him something that’s going to make him aggressive.

[00:17:16] Carole: Wow. If there is dye in the food, will it say it on the label? And what are the different ways it would say it without saying the word dye? 

[00:17:24] Amy: If it is medicine, it’s usually going to be under a section called inactive ingredients. So, if you’re looking at Tylenol or ibuprofen, you’re going to want to read the entire thing. And sometimes the inactive ingredients, they’re pretty sneaky. Sometimes you have to open the tab at the bottom to look even closer on the carton. So, they’re not always listed right under the main ingredients, but I always look for inactive ingredients. On food, it’s usually listed pretty far at the top because food ingredients, they have to list it in order of how much of each ingredient is in there. And you’ll be amazed at how many things like red 40 might be the first thing listed. 

[00:18:03] Carole: Do you think that your doctors are or were aware of this? 

[00:18:08] Amy: Some of them are. It depends on the doctors. I’ve come across some very holistic physicians. And the first thing they say to me is, what’s your son’s diet like?

Let’s talk about his diet because they know that there’s a huge connection between not only food dyes, but just your gut health in general. A lot of autistic kids get constipated very easily because they’re agitated and anxious. And so, a lot of doctors will talk about gut health with you right away.

But then, of course, there are some doctors that will just quickly write a prescription for something and they’re not trying to dig deeper into it to see if there’s anything I can do first to help my child before I give him a prescription. When my son was first diagnosed with special needs, I was very open about it.

My husband and I have never been in denial. From the very beginning, we were just like, okay, this is the gift we’ve been given from God and we’re going to give him the best life we can. But I’ve noticed that a lot of people really struggle from day one and they are constantly trying to cure their child.

So, I’ve known people that fly all over the country to different centers and just try out everything they possibly can to cure their child of autism. And I’m not saying that’s wrong. We just approached it a little differently. So, we have tried lots of different things too, not so much to cure him. We want him to be peaceful and not be so agitated and anxious and aggressive.

So, we take the road of what can we do to make his life more peaceful and our life more peaceful, knowing that he does have autism and he’s going to have it forever. 

[00:19:48] Carole: Lizzie tells us her point of view as Matthew’s older sister. You described a lot of how he treated you or perceived you compared to his older brother. How did you view him? 

[00:20:00] Lizzie: I would say when I was little, I probably, I don’t want to say I struggled with understanding that he was an autistic child, but I feel like I remember when I was little, I really just saw him as my annoying little brother.

I would get frustrated because our relationship felt so normal to me, like all of my other friends with their siblings. And it was hard because I wanted to get mad at him for playing with one of my toys when I wanted to or getting into my room and messing with my stuff. I remember I really struggled with that growing up.

I would be very frustrated with him a lot, and especially when I was little, I didn’t understand why my parents would always just let him do whatever he wanted. I felt like he got more attention than me because he really was only a year younger than me. And so, I was fighting for some of that attention too, which was not true at all.

We still had a wonderful family dynamic and I love my parents. I was with them all the time, but I definitely remember being very frustrated with him and being around him when I was little. 

[00:20:59] Carole: Were you ever scared when you saw his behavior? 

[00:21:03] Lizzie: Yes. We were lucky that his behavior being that aggressive didn’t really happen until probably only a couple years ago. I wouldn’t say I was scared; I just feel like it was more of a worry of like never really knowing how he was gonna act. I would get really frustrated for my parents specifically because it’s hard to see your family go through that because he never really would act aggressive with me. It was only really towards my parents.

And so, it was just hard for me just to stand there and watch. The couple of years where he was consistently being aggressive was just hard for me to get through because I felt really bad for my parents. But since he was never aggressive towards me, I never really had that fear of him specifically. 

[00:21:44] Carole: Did you go to therapy for your feelings that you were having?

[00:21:48] Lizzie: No, not really. I mean, back to our family being, especially in those hard years, we just really focused on a lot of prayer. And the good thing was that Matthew loved going to church. And so that was a good reset for us every single week to go to Mass and be there together. I would say that was definitely very therapeutic for our whole family.

[00:22:07] Carole: He’s now 18. How do you see his future? Do you see him living with you or living somewhere else? 

[00:22:16] Amy: I definitely think he will probably live with us. He’s very, very innocent. He would go with a stranger in a second because he loves people, and he doesn’t have any fear towards anything. So that’s very scary.

I think if we ever found the perfect situation where he could live in a home with people that we personally know and maybe have around the clock care of people that we could trust, we would possibly consider that, but right now we’re just thinking, you know, he’s probably going to live with us. He’ll have some little job.

He’s so joyful and he’s so fun. He loves to clean. He loves to do little tasks. So, we could see him bussing tables or being a greeter, you know, something where he can use his social people skills. 

[00:23:07] Carole: Do you have any advice for other brothers or sisters of children with different needs and different personalities?

[00:23:14] Lizzie: Yeah, I would definitely say I totally understand that perspective of growing up and being frustrated that that sibling is going to get more attention. They’re going to need more care from your parents growing up. And I guess I would just advise everyone to be patient. I know that’s hard and when I was growing up, I was not patient with him. Now that I’m older, I really cherish that relationship a lot more than I did when I was little. 

[00:23:38] Carole: Anything you wish you knew then that you know now to tell other families? 

[00:23:43] Amy: Yes. I have lots of things I could share, but I’ll try to limit them to the top things. On aggressive behavior, the biggest thing that I have learned is to step away from it. And that took me years to figure it out because I was so nervous that he was going to hurt himself or hurt something in our house that I would go towards him. And autistic children feel energy at a whole different level. So, what I did not realize was my nervous energy was making it so much worse because he was then tuning into my energy, which was making him even more upset, which is hard to understand.

But I’m very an energy person. I’m very in tune to people’s energy. So that comes very natural to me. But it all makes sense that he could feel my energy. I was a nervous wreck. That made him worse. So, what I finally realized was he’s really not going to hurt himself. The worst thing that’s going to happen if he tries to punch the wall, his hand might be bruised, or it might bleed a little.

If he bangs his head, we found out pretty quick, it’s okay. He bangs his head very hard, and you would think he’s going to have something horrible happen, but he never did. So, I just decided that when he started that, I was going to give him his space. So, I would literally say very calmly, I can tell you’re upset, I’m going to leave for a little bit and I’m going to come back when you’ve calmed down.

And whether he was upstairs, downstairs, wherever he was, I would very calmly leave and I would walk out the front door. And instantly, he would change his demeanor and it wasn’t so much that he was doing it for attention because usually autistic children don’t have meltdowns for attention.

That’s just, it’s not a behavioral issue. It’s an internal issue. They just have so much going on in their body that they have these meltdowns. But I think it made him think, oh, now I’m nervous. Mom’s gone. I need her. And it calmed him down. Was it that, or was it literally my nervous energy exiting the building allowing him to calm down? 

I don’t know. But that really works for us. And there were times when I’d walk out the door. And I would hear him punching something in the house, and I would think, oh boy, here we go. But I just kept reminding myself, he’s not going to hurt himself. If he puts a hole in the wall, we can fix it. It’s okay. So that’s the way I started handling it, and the beautiful thing about Matthew, too, is, as soon as he has that, he feels horrible about it.

So he will instantly start saying, I’m so sorry, Mommy. I love you. I love you. I’m so sorry. Get the tape. He’ll always say, get the tape. He wants to fix the hole with tape. He thinks he can put Scotch tape on the wall. But he’s so, so remorseful. And that helps quite a bit. Helps you forget and move on. But that’s probably the biggest thing that I learned about those meltdowns.

Also, if they happen in the car, that’s very scary because I have been driving before when he starts like trying to rip my hair out because he’s so mad. So, I have decided that from now on, if that happens, I just pull over the closest spot I can get safely. Pull over and I step out of the car. I leave him in the car and I say I’m going to take a walk.

Of course, I don’t go far because I can’t leave him. It helps to calm down. On our way on a trip just recently, he had one. And we pulled over just an abandoned parking lot and it was a safe spot, nobody was around, and I let him get out and he just screamed and cussed and kicked a few rocks and I just stood there and I said, oh, this is good, this is good.

If you’re upset, go ahead. You can kick a rock over there. Oh, get it out. Say what you need to say. And so that went on for about 5 or 10 minutes and then he hugged me and said he was so sorry. Got back in the car and off we went. So, I definitely think that space, giving them their space is important for the aggressive meltdowns.

Another thing is visual schedules. I found out very quickly that a lot of his anxiety is he wants to know what’s happening next. So, I try to make picture calendars or picture schedules so he knows exactly what we’re doing each day.

[00:27:58] Carole: Has these experiences with your kids and even you, Lizzie, with you and your brother, has it made you more, have more faith?

[00:28:06] Lizzie: Oh, definitely. Yeah, especially with Matthew. I would say Matthew’s more of a constant reminder to have faith. Because we do go through such low points with him, but I think God really works through him and where he just brings out the joyful moments that we’re all just so thankful for and reminds us that he is a blessing in our lives as hard as it can be sometimes. But yeah, I would say that it has definitely made our family extremely faithful. 

[00:28:36] Amy: Matthew is our biggest joy and our heaviest cross, simultaneously.

[00:28:46] Carole: You’ll want to tune in for the next episode of Wisdom Shared, where Lizzie shares with us what happened to her during the time of Covid. 

[00:28:53] Amy: I told my husband, we’ve just got to get her to the hospital. She was in a room by herself and I was in there with her and I was praying because her temperature just kept going up and I just knew she is a sick girl. And as I was praying, something came into my mind. The words take her tampon out and I thought, am I imagining this? Like, why am I thinking of a tampon? 

[00:29:18] Carole: 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.

Episode Summary

In part 2 of my conversation with retired FBI Special Agent Aaron Weeter, we learn more about life as an FBI agent. Aaron explains how he got started, what it was like to work on high-profile cases like 9/11, the DC Sniper, and January 6th, and how he ultimately specialized in drug-related crimes for most of his career. It was fascinating to learn about how Aaron and his colleagues used informants and undercover officers to take down doctors in the opioid epidemic.

Be sure to listen to the previous episode with Aaron to learn how the opioid epidemic of the 90s spread to become the fentanyl epidemic we have today: Retired FBI Agent Reflects On Opioid Crisis

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/sDVbaz9FHbM

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Retired FBI Agent Reflects On Opioid Crisis

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Transcript

[00:00:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents, kids, and people on the front lines are the experts and where connection inspires change. I am your host, Carole Blueweiss. And today we have as my special guest retired Special Agent Aaron Weeter on the show for a second time. On the last episode, Aaron explained from his perspective how the fentanyl epidemic today was born out of the prescription opioid crisis in the 90s. He will share with us what motivated him to become an FBI special agent, along with some inside stories that you won’t want to miss. Let’s get right to it.

How does it work in the FBI that you’re getting the people that become double agents to spy for you? 

[00:00:47] Aaron Weeter: We refer to them as informants or cooperating witnesses. The way that worked is if we heard about a particular doctor because local law enforcement had arrested somebody on a deal and figured out that they were a patient of that doctor, then the local law enforcement officers would be in touch with us.

And we would approach that person. If it was somebody that was passed out in a car or if it was a smaller quantity drug deal, they weren’t held. They would be arrested and released. And then we would approach them and basically talk to them to understand from them what was their actual relationship with that physician?

Did they fall off of scaffolding and have spinal fusion surgery and have excruciating pain? Did they have cancer? And that’s an important distinction to make. Palliative care, where you’re talking about caring for people, you know, have terminal type illnesses, but whatever medications they need to make them comfortable as best they can, they should have full access to.

These were folks that were otherwise healthy that we were interested in. If they were a significant dealer right off the bat, I would tell them, look, history is history. You can’t undo what is already done. And we are aware that you have sold huge quantities of these pills over the last few years. But there’s always a reason for that, and we want to give you the opportunity to help yourself as best you can, but you’re going to have to be truthful. You’re going to have to be reliable when we call and you’re going to have to certainly stop selling the pills because we’re going to be taking the pills at this point from you.

[00:02:26] Carole Blueweiss: You were trained as a CPA, a certified public accountant. How did you end up becoming an FBI agent? 

[00:02:32] Aaron Weeter: Well, for me, it started up, you know, at a young age. I grew up just one exit north of Quantico, Virginia, which is a big Marine Corps base. But on that Marine Corps base is the FBI training academy. And I grew up with a lot of kids in school who were sons or daughters of FBI agents stationed either at Quantico or at FBI headquarters in D.C. So I got a window into it there, and then I also had a very close family friend, and he was an FBI agent up in New York, and I remembered the stories that he told. One of my favorites that probably made the light go on in my head that that’s something I wanted to do in the future was we went on a ski trip and stayed overnight with them in New Jersey before we took off the next morning for New Hampshire.

And how he wasn’t home. He was working, of course, so I was asleep on the couch in the living room and about 2 o’clock in the morning, I saw the door open and I saw a man coming through the door with a briefcase in one hand and a shotgun in the other. And I thought, wow. Well, after the initial shock and concern wore off in my 12-year-old mind, I thought, you know, this would be a great job to have, to apply your schooling and upbringing to a noble cause and something that would be exciting and invigorating to work.

[00:03:53] Carole Blueweiss: Do all FBI agents carry guns? 

[00:03:56] Aaron Weeter: Yes. 

[00:03:57] Carole Blueweiss: They do? 

[00:03:58] Aaron Weeter: They do. 

[00:03:59] Carole Blueweiss: How do you become certified to become an agent? 

[00:04:02] Aaron Weeter: I went through college and got a degree in business accounting and specifically with a focus to try to, you know, get myself into the FBI as quickly as possible. So the FBI recruits in a wide variety of fields and backgrounds. And accounting, I knew, was one that was a very quick route in.

I also knew that it would be a great degree to have if I needed a job otherwise, and so got my accounting degree, got my CPA. And applied to the FBI in 1997. It was about a one-year process to get through all of the background investigation, the polygraph, the interviews, the testing. In 1998, I was offered an appointment as a special agent with the FBI, and I showed up at the academy, or I was told to show up at the academy. And it was a 23-and-a-half-year career thereafter. And I retired at the age of 50, having accomplished just what I had wanted to do in those two decades.

[00:05:03] Carole Blueweiss: What did your parents think when you told them you wanted to be an FBI agent? 

[00:05:08] Aaron Weeter: Oh, I think my parents were very supportive of it. They knew a number of FBI agents growing up, when I grew up. Again, living in that community surrounded by agents who are coming and going from different assignments. Public service was important and my mom certainly supported it very much as well. Though they worried. 

[00:05:29] Carole Blueweiss: They worried. Yeah, that was my wonder. And when you say special agent, are all FBI agents special? 

[00:05:36] Aaron Weeter: Oh, that’s a great question. I think they are, but that is just a name. And often I would get the question, what makes you special? And I said, it’s just, that’s just the title. I couldn’t choose to just be an agent. That’s a title. There are no agents, there are only special agents. 

[00:05:53] Carole Blueweiss: I like that. They should be also special employees, you know? 

[00:05:57] Aaron Weeter: Absolutely. 

[00:05:58] Carole Blueweiss: How was it for you to manage such an intense career and then come home to your family?

[00:06:06] Aaron Weeter: Well, certainly there were times where it was extremely challenging. My wife not knowing when I was going to be home or what I was doing. She knew back in college when we started dating that that’s something that I wanted to do. But, you know, at 26, when I came in, you’re still pretty young. We didn’t have any children and life was still fluid enough to adapt, but it was certainly a sacrifice. We had to move from Atlanta to Washington. D.C., which was not our choice. That was where I was assigned.

[00:06:35] Carole Blueweiss: And you could tell her I’ll be home late or not. 

[00:06:37] Aaron Weeter: I could. 

[00:06:39] Carole Blueweiss: Yeah, no, I just mean about like the worry factor.

[00:06:41] Aaron Weeter: Sure. Sure, yeah. There were times I think where she was concerned. Are you okay? Where are you? But they were more, you know, major events in the area like the DC sniper or, you know, September 11th type things, or even on January 6th. You know, being at the Capitol on that day and, you know, what’s going on down there is just, you know, watching the news, right? You know, it can make you worry.

[00:07:08] Carole Blueweiss: Clearly, you didn’t choose what you were put on, but it just seems such a variety of cases. How does that work? Do you, they just assign you? 

[00:07:17] Aaron Weeter: Yeah, so coming out of the academy, you are assigned to an office and within that office, you’re assigned to a squad. So within the FBI, there are 56 field offices. So you rank your field offices, you know, 1 to 56 in order of where you’d like to go. And I believe it was in week seven that we were informed of our office assignment. So in week seven, I opened up an envelope and found out I was going to Washington D.C. That was my first choice because I knew probability wise, I would likely get it. It was a big office.

My roommate, on the other hand, got his 48th choice. And he was at the bottom of the class as far as choices. He went to Newark. No offense to the northeast there. A, I was a CPA and I was assigned to a white collar crime squad. That didn’t necessarily apply to the other accountants or CPAs in my class, and they were assigned to a variety of different squads, drug squads, fugitive squads, counterintelligence squads, counterterrorism, there are a multitude of places to work within the FBI, and that’s why I think it’s the most interesting, opportunity filled law enforcement career that you can have because you can really, I stayed in the same area for my time in the FBI, but I could have moved to within each of those areas if I had wanted to. 

[00:08:40] Carole Blueweiss: So you were assigned to the white collar, what do you say, white collar? 

[00:08:44] Aaron Weeter: White collar crime squad or the financial crimes area. 

[00:08:48] Carole Blueweiss: But yet you worked for 9/11 and you worked in the D.C. sniper case and then January 6th. So how does that fit in? 

[00:08:56] Aaron Weeter: Well, my office, which is the Washington Field Office of the FBI, is a large office. When major events like 9/11, the DC sniper or January 6 take place, it’s pretty much all all hands on deck situation and everyone responds and is assigned.

So, basically a squad, which I was part of a squad, my squad was one of about seven in the white collar crime section that focused on different areas of white collar crime. And within my squad, I typically had 10 to 12 agents. After September 11th, we were almost immediately assigned to Dulles Airport, which is where one of the planes took off that morning.

And we were running all sorts of leads to try to figure out who the hijackers were. Reviewing video, seeing if there were folks that were on the inside that helped them get in or get onto the planes, etc. So DC sniper, we were fanned out over, you know, the entire northern Virginia area, DC, Maryland. Looking for, you know, particular vehicles and following up on leads. And, you know, January 6th, we responded as a squad to, you know, the Capitol in the early evening, late afternoon. So basically, whenever anything, you know, large scale happens, everyone kind of is pulled in to respond and assist and that can go on for weeks and months and, you know, it could go on for just a period of days if it’s a smaller event that resolves.

[00:10:36] Carole Blueweiss: So there’s certain events that take over whatever you were doing before, like any of the investigation of stuff that could wait, you were pulled. 

[00:10:45] Aaron Weeter: September 11th, 2001 was kind of right at the height of when we were doing these pill investigations, the initial pill investigations, and we had to put all of that on the shelf. We couldn’t operate our informants. We couldn’t meet with the prosecutors. We couldn’t prepare for indictments. We couldn’t do anything. And that went on for several months, at least probably two to three. 

[00:11:09] Carole Blueweiss: Of all of these cases, you witnessed live, January 6th episode, or what do you say? January 6th…? 

[00:11:18] Aaron Weeter: Yeah, January 6th event, whatever. It was a response to help to secure the building at that point, which, you know, by the time we got there, it was mostly well in hand. It was, you know, going back to your point on, you know, the dangers of the job, what I would say is, the fellow law enforcement officers that I work with, the state and locals. Primarily the locals, as we call them, as they call themselves within the counties and the cities and areas that we worked, are the ones that are really on the front line all the time. 

An FBI operation is typically planned out well in advance. So as far as the dangers of the job, I certainly want to highlight that being a local law enforcement officer was far more dangerous than what I did. My job certainly had its share of potential, but we kind of, for the most part, knew when it was coming and could prepare for it.

[00:12:13] Carole Blueweiss: So what case was your favorite or the most intriguing for you or that sticks out in your mind? 

[00:12:20] Aaron Weeter: Sure, probably the biggest case that I worked on is in that prescription drug area, the pill world. It was a case that I opened and worked with the DEA, Fairfax County Police, Prince William County Police, the Virginia State Police. It was a task force case.

So we had a couple of doctors in Northern Virginia and a pharmacist in Northern Virginia, a couple of pharmacies, who were supplying, providing prescriptions for, and filling prescriptions for absolutely enormous quantities of opioid medications. Oxycodone primarily and at the time it was OxyContin and those doctors were prescribing the medications to hundreds of patients and in volumes that allowed the patients not only to use, and when I say patients, there were different types of patients within each practice, there were the folks that were there for the right reasons, trying to get help to treat chronic pain, which I’m sure I know from what they have told me over the years, is absolutely agonizing and life changing when you have it.

So there were folks that were there for the right reasons, but there were also folks that were there because they had either become addicted and couldn’t control their intake of these medications any longer to the point they began abusing them. Typically, those folks evolved into, many of them evolved into selling the drugs, which is what brought us.

So as far as, you know, the most intriguing case, I would say it was kind of the combination of those three subjects who were related, but unrelated as physicians and pharmacists and the distribution networks that they fuel. We had about 40 subjects total in that case who pled guilty in US District Court in the Eastern District of Virginia with sentences ranging from 20 plus years to months of incarceration or probation. But it kind of ran the gamut. 

[00:14:25] Carole Blueweiss: Do you remember that feeling of like, I can’t believe this? Or what did you feel when you were doing that case? 

[00:14:34] Aaron Weeter: Well, I opened my first pill case in 1999. I had just started with the FBI in the Washington field office after my training in October of 1998. I want to say it was January of ’99 I opened my first pill case and I didn’t have any background in opioids before that.

I didn’t really frankly know what they were, but I began working with the locals, the local law enforcement officers, and began hearing about this issue that they were having with prescription drugs and the issue with prescription drugs for the local law enforcement officers is typically, you know, many of these folks, if they were a patient, they had a prescription bottle, had a doctor’s name on it, had a pharmacy label on it, and they were legally allowed to have it.

The only difference is, you know, it was very unlike cocaine or methamphetamine or any other type of illicit drug, heroin. If you have quantities of that on you, there is no doctor behind that. Right? So the local law enforcement officers were and the local courts were having difficulties prosecuting these cases. And in typical drug cases, often you work your way up from the bottom.

And so with a cocaine case, for example, if they arrested somebody with cocaine on them, they could take that person on up to their dealer and they could then arrest that person and take that person up to the next dealer. At every step of that way, there’s, you know, blatantly illegal conduct. These are illicit drugs. They’re not allowed to exist. But with the pills, the local law enforcement officers didn’t really know how to effectively address that. Not that they hadn’t done it on certain occasions in the past, but these doctors could have hundreds of patients and trying to put together a case that made that prescription illegal was the challenge.

[00:16:28] Carole Blueweiss: And how did it become apparent that there’s a problem here? 

[00:16:32] Aaron Weeter: I would say it came from a variety of sources. Like I said, the medical board investigators might mention it to us on one day. A local law enforcement officer who’s on a drug task force who we worked with would mention it the next. We worked with insurance companies. Insurance companies would note that certain providers or physicians would be prescribing medications that were larger in quantity or stronger in dosage than they typically saw.

So really it came from a variety of different sources. Pharmacists were also a great source of information. And we developed actual informant type sources within pharmacies who would provide information to us. You know, within the parameters of what they were allowed to do, but they’d say hey, this looks really sketchy. I’m not sure what’s going on here. I’ve got a van load of people from Maryville, Tennessee, you know, which is outside of Knoxville. And they just pulled up in front of the pharmacy and they’re seeing a doctor in Maryland. And they’re all in their early twenties when they’re all filling virtually the same types of prescriptions for oxycodone, Xanax, morphine and other medications. So pharmacists were also a great source of information for us. And then the question, how do we figure out whether this is a criminal conspiracy or conduct or whether this is just the practice of medicine? 

[00:18:03] Carole Blueweiss: I watched Chasing the Dragon. That was a great documentary that showed what can happen and from the point of view of people that, people think of drug addicts as a certain kind of type, but in actuality, especially with this opioid epidemic, it wasn’t that at all. It was regular people having regular lives, being brought up in a very comfortable situation, getting well educated. 

[00:18:30] Aaron Weeter: Right, right. The demographic, there is no, you know, bias or prejudice toward who you are, what demographic you come from. It affects everyone from the young teenager to, you know, the 60 and 80 year old grandmother who’s financing her trips to, you know, on cruises with the pills that she gets because she doesn’t use them. She passed them on to her family members who are running a pill operation and she gets to enjoy, you know, trips out of it. 

[00:19:02] Carole Blueweiss: Woah, woah, woah, that was a case? 

[00:19:05] Aaron Weeter: Yeah, that was a case. Yeah. 

[00:19:06] Carole Blueweiss: Tell me more. 

[00:19:07] Aaron Weeter: So, that was a case. It started with some doctors and then we started to look at some of the patients as well to see if we could identify some folks who were dealers, patient dealers who we might be able to, you know, motivate. And I say motivate, when you’re addicted to these medications and you’re selling them and you get arrested, the last thing you want to do is stay in jail. Because, you know, if you stay in jail, you’re going to go through withdrawals and withdrawals are terrible. 

In that case, we had two brothers and at least one neph, one of their sons, that were involved in distributing these pills. And they had doctors, some doctors that they were getting them from, and they were also getting them off the street in DC at lower prices and reselling them in Virginia at higher prices.

The mother was literally, I think she was certainly in her late seventies, but probably in her early eighties, she was taking cruises and she would get her pills every month and she would pass them on to the kids and they would sell them. These, when I say kids, these guys were in their fifties. But yeah, that’s how she was kind of enjoying her lifestyle.

[00:20:12] Carole Blueweiss: It’s just mind boggling of a grandmother selling drugs to the family members to make money to go on trips. Just like my brain can’t even compute that. 

[00:20:23] Aaron Weeter: Yeah, yeah. Well, she was a tough nut to crack too. Because we talked to her a number of times and everybody, you know, in the family kind of told us that she was a supplier of some of the pills, but she would never, she would never give it up. She’s like, oh, no, I take my pills. You know, I said, well, would you mind if I counted them? You have them here? Oh, well, you know, I’m running a little short. I took a few extra, you know, so, you know, what are you gonna do? 

There’s a certain type of person that probably doesn’t meet the description of somebody who’s going to be, you know, punished for these activities. And even if they’re, you know, if they’re 80 years old, they have to face the judge, but we also have to face the judge and bring in the right cases. And in this case, it wasn’t huge quantities every month, but she was definitely giving her pills. 

[00:21:11] Carole Blueweiss: Was she arrested? 

[00:21:13] Aaron Weeter: No. Our witnesses would have been looked at as not the most credible folks. And she would have been looked at as a very pitiful subject. So she was not arrested. We didn’t have any hand to hands with her. We did try. We did try to send some folks in to get pills off of her, but I think maybe she was out at that time or something. 

[00:21:36] Carole Blueweiss: So I assume she wasn’t using them?

[00:21:39] Aaron Weeter: She wasn’t. Now, she might have been using a few, but yeah, to your point, I mean, it spans a wide demographic as far as the folks that become addicted to prescription drugs and other drugs.

[00:21:52] Carole Blueweiss: And who sell them, too. 

[00:21:53] Aaron Weeter: Correct. 

[00:21:54] Carole Blueweiss: Now, these people that you had described that you would wire them, and they’d speak to the doctors, what was the arrangement? Did they, were they paid by the FBI? Was it volunteer? Was it in exchange for less of a sentence? But they sound like they’ve already been over, they’ve already served their sentence from what you said. Am I wrong? 

[00:22:17] Aaron Weeter: Well, yeah, so the way it works is, you know, there’s the initial arrest and then there’s, you have a charge and then you’re basically either going to plead guilty or not guilty. Most people plead not guilty initially. And then they are, you know, set for trial. So it’s somewhere in between that stage of being charged, arrested and charged. And when they’re set for trial, basically, they would, in a lot of cases, they would have an attorney and the attorney would say, hey, go work with the FBI. Go work with the DEA, work with the locals. Try to work these charges off, per se. You don’t work the charges off completely, but it goes to their benefit if they cooperate reliably. And I guess, you know, effectively with an investigation. So it’s more on their anticipating benefit on the back end of their charges. So they weren’t paid. 

Now, typically my informants, I had informants that I paid for other reasons. But if you were facing charges, you wouldn’t be paid because that would be, you kind of don’t do both. 

[00:23:24] Carole Blueweiss: Yeah, conflict of interest. So I guess I misunderstood because it sounded like when you were first talking about it, that these were criminals that served their time. And then they left. And then you then interviewed them to see if they would be good informants. So am I missing something? 

[00:23:40] Aaron Weeter: Yeah, no, maybe I misspoke or it was a misunderstanding there. But, no, these would be folks that would, they would get arrested by the locals on a, let’s say a Thursday night. And I get a call from a detective say, hey, we just arrested so and so. He’s a patient of this doctor. He said he wants to cooperate. I run out the next morning and talk to the guy. Usually at that point, he’s probably still in jail. But soon thereafter, he bails out. The police talk to his attorney. Say, hey, look, if this guy wants to cooperate, we can work with him and that gets relayed to the judge ,that the government has no opposition to release in this case, because if they’re incarcerated, there’s really no cooperation they can have as far as recording anything.

So they need to be out. So, yeah, so that would be worked out sometime in that span between when they’re arrested and when they eventually adjudicated on their charges. Which could be months, many months, half a year, easy. So it gives you a good long window to work with them. 

[00:24:39] Carole Blueweiss: And is that how you caught most of, is that, was that the strategy used? To get your evidence? 

[00:24:45] Aaron Weeter: Yes. For the most part. We did send patients in. Well, we typically wouldn’t try to send somebody that was an informant or a cooperating witness in cold if they weren’t an existing patient. The majority of folks that we use to record their interactions with the physicians were existing patients.

We did, however, use undercover officers as well, and these would be just cold initial appointment. They would walk in and say, this is my issue. This is what I’m looking for. She went in there. It was Adderall, basically controlled substance speed. Basically, she went in there and said, hey, look, I’m a fitness model. I use this stuff. I got it from a friend. It helps me keep my weight off. And I also, you know, sometimes share it with my some of my clients. They think it works really well. And we did that over a period of like a couple visits. But we had three or four visits with it. The doctor had no issue. He would get, he would give extra prescriptions to her for her clients, you know, or increase.

He wouldn’t say, well, I’m not going to give you an extra prescription. And then we would have the undercover say, well, can you just bump mine up by like 50 and then I’d have more to give to her? Yeah, I can do that. So yeah, there were different scenarios where we would use undercovers, but undercovers were more difficult to get in than an existing patient for obvious reasons.

[00:26:01] Carole Blueweiss: Do you laugh when you watch FBI shows like how they show everything like this? 

[00:26:06] Aaron Weeter: You know, what I would say is, you know, don’t believe everything you read or hear on the news or in the papers about what’s going on, you know, within the FBI or within our cases. And also certainly don’t believe everything that you see on TV shows. Some of the work is absolutely amazing and incredible, and probably not far from what you see on TV. But much of it is made to seem much more either glamorous or exciting, or perhaps have more infighting and conflict than it often does. 

[00:26:40] Carole Blueweiss: Do you have a favorite? 

[00:26:42] Aaron Weeter: As far as a show? 

[00:26:43] Carole Blueweiss: Or a movie, or a TV show?

[00:26:46] Aaron Weeter: For me, I think Silence of the Lambs was the movie, right? That was in the 90s. They actually had actual instructors at Quantico that cameoed in that and who were there when I later went through the academy. And so the ropes that they climbed, the trails that they ran, the mats that they were thrown down on as they worked on their defensive tactics were all the same mats and ropes and trails that I was on, you know, just a few years later. So, who could not love Clarice Starling, right? 

[00:27:16] Carole Blueweiss: Mm hmm. So they did their research, too. 

[00:27:19] Aaron Weeter: They did, and I think it probably inspired a lot of people to join the FBI. It was a movie that, you know, people still talk about today. 

[00:27:28] Hannibal Lecter: I do wish we could chat longer, but I’m having an old friend for dinner. Bye. 

[00:27:43] Carole Blueweiss: 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.

 

Episode Summary

Since 1999, more than one million people have died from a drug overdose in the United States. On International Overdose Awareness Day, we reflect on these senseless preventable deaths. Today, we hear from previous Wisdom Shared guest Anne Pratt on the loss of her brother Daniel from an accidental overdose. May this powerful personal story help spread awareness and compassion for all those affected by the devastating impact of today’s out of control epidemic.

Resources

How to use Narcan training video: https://www.anonymoussister.com/resources

Find Naloxone near you

Fentanyl Test Strips

If you or someone you know is struggling with substance use disorder, SAMHSA’s (Substance Abuse and Mental Health Services Administration) National Helpline, 1-800-662-HELP (4357), (also known as the Treatment Referral Routing Service) or TTY: 1-800-487-4889 is a confidential, free, 24-hour-a-day, 365-day-a-year, information service, in English and Spanish, for individuals and family members facing mental and/or substance use disorders. This service provides referrals to local treatment facilities, support groups, and community-based organizations. Callers can also order free publications and other information. You can also visit https://www.samhsa.gov

Related Episodes

Addiction to Sobriety: A Mother’s Journey

Anonymous Sister

Retired FBI Agent Reflects On Opioid Crisis

Anne’s previous episode: A Mother Shares Her Journey of the Joys and Challenges of Raising a Child with Cerebral Palsy

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Transcript

[00:00:00] My name is Anne Pratt. I live in Montrose, Colorado with my husband and two boys.

[00:00:07] In honor of International Overdose Awareness Day, I wanted to share the story of my younger brother, Daniel. Daniel was born in October of 1989, and I remember the day my parents brought him home from the hospital. He was this adorable, chunky little baby, and I just remember wanting to hold him all of the time.

[00:00:33] And, growing up we had the typical sibling relationship one day, we were nice to each other. And the next I was mad because he wouldn’t leave me alone or, following me around all the time. Drove me crazy. But one of our favorite things to do together was playing outside, in the creeks, finding snakes and all kinds of good things.

[00:00:57] And also playing Mario on Nintendo. We were pretty good, and of course that would always lead to more fighting, but in the end it was always good fun. When I was 12 and I think he was eight, our parents divorced. And I feel like that was a moment in Daniel’s life that changed him somehow.

[00:01:17] I mean, I was upset and it definitely wasn’t easy, but I think I was old enough to know, was for the best. As Daniel and I grew older, we didn’t have that closeness that some siblings have. We grew apart. I enjoyed school and just overall I was a giant dork. He was into sports.

[00:01:38] He was good at everything he tried and then, school was just one of those things that he just did, he had to do. As many of us, myself included, do in our high school years as we know, we try to find that group of people we connect with. We also try new things.

[00:01:53] I remember drugs and drinking at parties. But I also knew even at that age what my limits were. I knew I wanted to go to college and I wanted to be a scientist. And I just noticed that Daniel didn’t seem to have that drive. He was just that fun living kid that everybody wanted to be around.

[00:02:11] I kind of knew that something was wrong when I’d wake up and things from my room or my purse would be missing. And then, when I’d confront Daniel about it, I could just tell that he was lying, something was not right. So that was like a turning point in our relationship.

[00:02:30] I felt like I couldn’t trust him. And, my parents and I, we couldn’t figure out what was behind it. Why was he stealing from us? What was the motive? It wasn’t until I was in college that I learned that Daniel didn’t have that ability to stop or know what his limit was.

[00:02:44] He was drinking all the time and it just kinda happened so fast. I mean, it was just like a switch. Drinking was always there. And then the next thing I knew it was cocaine and heroin and pills. And in about 2013, our family came to the conclusion that Daniel had become an addict.

[00:03:07] He was a heroin addict and in, I think it was 2016, he had his first of many overdoses. His life just became consumed by it. There’s so many stories that I could tell about Daniel and his consequences from his addiction, from stealing, car accidents, fighting, you name it. But what many people may not understand is that Daniel was still a person.

[00:03:41] He was my brother. He was a dad to two amazing boys. He was a son and a friend. he tried so hard for so many years to get himself clean. He was in and out of rehab more than I can count on my hand. I saw him suffer. We all did, and we knew that he wasn’t gonna live. He wasn’t gonna live. He and he knew that he couldn’t live that way anymore.

[00:04:09] Daniel also suffered from depression. Many addicts suffer from depression. He just never felt like he was good enough. And you know, what he didn’t know was that he was. On April 11th, 2021, after moving me and my family to Colorado, I got the phone call that I somehow knew was inevitable. It was 2:00 AM and it was from my mom. And so before I picked up the phone, I knew what I was gonna hear and it’s that phone call that anyone who’s ever lived with or known an addict fears the most.

[00:04:45] After Daniel spent nearly a month in rehab, he was released. I remember he spoke to us. He spoke to my mom especially about telling her how much he had changed and how excited he was to go home to see his boys and his family. But that darkness was just waiting for him.

[00:05:03] Two of his friends, I guess you could say, were immediately told of Daniel’s release from rehab and. God, they tracked him down like a deer in the woods. They knew that Daniel would come back. So Daniel purchased cocaine from them and went home to see his family.

[00:05:18] Within about 10 minutes of snorting his first line, he instantly fell to the floor. He had a dangerously high fever, vomiting and became short of breath. Within 10 more minutes, he went into full respiratory failure. Daniel died.

[00:05:33] Daniel’s cocaine had been laced with fentanyl, so much so there was enough, I think they said, to kill 20 adults. For anyone who doesn’t know the danger of this drug, it only takes about three milligrams, I believe, to kill an adult. After Daniel’s autopsy, his blood test revealed that his system contained 65 milligrams of fentanyl.

[00:05:56] He didn’t deserve to die like that. None of them do.

[00:06:01] While this was an accident, it was an accidental overdose from him not knowing that there was fentanyl in his cocaine. It’s something that’s just happening far too often. You can’t hide from it. It’s everywhere. It’s in the smallest of towns to the biggest of cities.

[00:06:16] I wanted to share this story in hopes that at least one person out there can learn and become informed of how common overdosing has become. It’s so common that our EMTs and police now have to carry Narcan. It’s just like a normal thing.

[00:06:31] Daniel was definitely a star​and unfortunately, Daniel was a star that found its way into the path of a black hole. His chance for escape was slim to none, and it is my hope that his story can save another star from this deadly and inescapable path.

Episode Summary

Our last episode explored addiction from the perspective of loved ones. In this episode, we are looking at the opioid crisis from the point of view of a retired FBI agent, Aaron Weeter, who spent 25 years specializing in drug-related crimes. From his frontline perspective, we learn how the opioid epidemic of the 90s spread to become the fentanyl epidemic we have today. 

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/oXq6XJ_z-HI

About Aaron Weeter

Beginning in 1998, Aaron served for over 23 years as a Special Agent in the Federal Bureau of Investigation’s Washington, D.C. Field Office.  He served for twenty years as a case agent and three years as a supervisor investigating matters primarily involving white-collar/financial crimes in the areas of healthcare fraud and prescription drug diversion and distribution.  During this time, Aaron also worked on a variety of national/office-wide cases including the 9-11, D.C. Sniper and January 6th investigations among others.  Aaron is a licensed Certified Public Accountant (CPA) and a Certified Fraud Examiner.  He retired from the FBI in late 2021 and recently started a fraud consulting business.  Much of Aaron’s FBI investigative work focused on the illegal distribution of pharmaceutical narcotics and other controlled substances by physicians, pharmacists and street-level dealers.  He opened his first “pill case” in early 1999 in the early stages of what would become the pill epidemic and through dozens of cases thereafter, had a window into the evolution of the pill epidemic and its influence on the current fentanyl epidemic gripping the U.S.  

More to Watch and Read

Chasing the Dragon: The Life of an Opiate Addict – a documentary made by the FBI & DEA

DrFeelgoodDealer or Healer? – a documentary about Dr. William Hurwitz, a Virginia physician who served nearly five years in prison for drug trafficking

Anonymous Sister – a documentary where director Jamie Boyle explores her family’s collision with the opioid epidemic

All the Beauty and the Bloodshed – a documentary about artist and activist Nan Goldin and her personal fight to hold the Sackler family accountable for the opioid overdose crisis

Demon Copperhead by Barbara Kingsolver – a novel that shows the devastating impact of the opioid epidemic on a young boy in Appalachia

Dopesick: Dealers, Doctors, and the Drug Company that Addicted America by Beth Macy – the definitive account of America’s opioid epidemic

Raising Lazarus: Hope, Justice, and the Future of America’s Overdose Crisis by Beth Macy – a sequel to Dopesick

Dopesick – Hulu limited series remake of Beth Macy’s book 

Empire of Pain: The Secret History of the Sackler Dynasty by Patrick Radden Keefe – a book that describes the Sackler family and their role in the opioid epidemic

The Family That Built an Empire of Pain – article by Patrick Radden Keefe that led to the book

What Can Be Done?

Words Matter – Terms to Use and Avoid When Talking About Addiction

https://www.cdc.gov/opioids/basics/fentanyl.html: 

https://www.cdc.gov/drugoverdose/prevention/index.html

Fentanyl Test Strips

Find Narcan Near You

If you or someone you know is struggling with substance use disorder, SAMHSA’s (Substance Abuse and Mental Health Services Administration) National Helpline, 1-800-662-HELP (4357), (also known as the Treatment Referral Routing Service) or TTY: 1-800-487-4889 is a confidential, free, 24-hour-a-day, 365-day-a-year, information service, in English and Spanish, for individuals and family members facing mental and/or substance use disorders. This service provides referrals to local treatment facilities, support groups, and community-based organizations. Callers can also order free publications and other information. You can also visit https://www.samhsa.gov

How opioid addiction occurs – Mayo Clinic

List of Treatment Facilities and Support Groups

Drug Takeback Programs

Safe Drug Disposal

Related Episodes

Addiction to Sobriety: A Mother’s Journey

Anonymous Sister

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The Wisdom Shared Team

  • Audio Engineering by Steve Heatherington of Good Podcasting Works
  • Social Media and Marketing Coordinator: Kayla Nelson

Transcript

[00:00:00] Aaron Weeter: The majority of what I learned wasn’t learned in a book. You know, it was learned by talking to the people that actually used initially these medications and later fentanyl on the street, and that taught me more about drugs than I ever learned at the FBI Academy.

[00:00:23] Carole Blueweiss: Welcome to Wisdom Shared, where parents, children, and others on the front lines are the experts and where connection inspires change. I am your host, Carole Blueweiss. 

What do I do when I’m sitting in a van for five hours while on a family trip and next to me sits a former FBI agent? You guessed it. I ask a lot of questions. His name is Aaron Weeter, and the answers resonated with me. So I invited him to be my guest and share his frontline perspective.

I see it this way. In this day and age of AI and social media, misinformation is all over our computers. Eyewitness stories told by the people on the front lines are needed now more than ever. 

[00:01:06] Aaron Weeter: This pill epidemic is, they say, I think it’s sometimes referred to drug abuse, you know, victimless crime. It’s not a victimless crime. There are so many victims that you can hardly count all of them. 

[00:01:20] Carole Blueweiss: Aaron Weeter spent 23 years as an FBI agent at the Washington DC field office, working as a case agent for 20 years, and then three years as a supervisor overseeing investigations. Aaron focused on healthcare fraud and prescription drug diversion and distribution.

Most of his FBI work revolved around the illegal distribution of pharmaceutical narcotics and other controlled substances. He investigated the parties that were involved in the illegal activity, including physicians, pharmacists, and street level dealers. Retired FBI Special Agent Weeter is this episode’s frontline expert. Can you explain what was this pill case? 

[00:02:06] Aaron Weeter: I worked healthcare fraud and prescription drugs fall under that healthcare net. And your prescription benefit plan through your insurance company covers the cost of those medications, and some of those medications are very expensive, both narcotic and non-narcotic.

What led us to become interested in it was the spike in distribution on the street of drugs like OxyContin and Dilaudid, particularly OxyContin. In the late 1990s, it was a very expensive drug from the standpoint of the pharmacy benefits that were being paid by the insurance companies, and we were seeing larger and larger quantities of this drug being prescribed, and then also larger quantities of this drug being distributed on the street.

In my assessment at the time, I hadn’t had that much exposure in the late 1990s, which is when I also started as an agent. But it was different than what I had always thought drug investigations were all about. I always thought that drugs were in the city. It was just kind of stereotypes and things you grew up watching, maybe on tv.

The crime shows were always in the city, and what we were seeing was these drug cases were taking place all over the countryside now, into the counties and the suburbs, et cetera, and that the difference seemed to be that where people used to have to go to the city to buy drugs, they didn’t have to go to the city anymore. They went to their doctor, they got a prescription. They went to their pharmacy, which is a mile or two away, picked up that prescription, and then the drug deal happened right there in the suburban parking lot.

[00:03:47] Carole Blueweiss: How does it come to you go to your doctor, you go to the pharmacy, get your medication. And then you go to the parking lot and make a drug deal. What’s the link there? 

[00:03:54] Aaron Weeter: There were a couple types of patients. There were folks that were going there just purely to get the pills because they were addicted to other drugs. They were addicted to heroin. They were using heroin. They were using other people’s pills, and they were routed to these physicians as places that they could go get their own supply, that they wouldn’t have to buy off the street. Then there were also patients who had a legitimate injury who went there and needed help with their pain. And they were prescribed quantities of these medications and types of medications and combinations that quickly led to them becoming physically dependent. 

[00:04:31] Carole Blueweiss: Physical dependence on opioids happens when the body gets so used to the presence of these medications that the body needs them to feel normal. If someone is physically dependent, they might need more and more of the medication to get the same effect. And that is related to building tolerance.

[00:04:49] Aaron Weeter: As things went on, and obviously I’m not medically trained, but you know, I’ll give you my nuts and bolts definition on physical dependence and addiction. To me, physical dependence is if you don’t have the medications, you go through withdrawals, you feel terrible.

[00:05:05] Carole Blueweiss: They’ll likely experience restlessness, trouble sleeping, depression, irritability, very significant anxiety, sweating, or even physical discomforts like muscle pain. I mention these, it gives a sense of how horrible withdrawal is and how important it is for someone going through it to have as much support as possible.

[00:05:26] Aaron Weeter: Where that crosses over for me to what I felt like somebody was addicted, those withdrawals and those urges were so strong that they did things that otherwise they would not have done, i.e. committed other crimes. Bought and sold other drugs. Those drugs or other drugs stole from friends and family or complete strangers and crossed the line that the drug had taken control of their lives.

Patients who went there initially with legitimate pain issues and became physically dependent and then crossed over kind of into an addictive state where they really just couldn’t live without it and would do anything to get it. And those folks went from having pain to having another medical diagnosis, addiction, because of the quantities and combinations of drugs.

Then you had folks, like I said, that were just there to get the pills because they were addicted to, you know, pills and other drugs before they got there, and they were just there to get more supply. 

[00:06:26] Carole Blueweiss: You had recommended the movie Dopesick. Do you believe that that’s realistic? Is that a good way for people to understand how something like this could happen and become an epidemic?

[00:06:36] Aaron Weeter: Oh, absolutely. Yeah. Dopesick is based on a real case. That was the case down in Southwest Virginia. The prosecutors who were featured in that case, and their real names, those are real people that worked those cases, Rick Mountcastle and Randy Ramseyer. And we interacted with them on our case on a limited basis because we were working in Northern Virginia on some of the doctors that were prescribing large quantities.

And a lot of those pills in Northern Virginia would sell for, an OxyContin 80 might sell for $40 a pill, but if you took it down to Southwest Virginia, you could sell it for $80. So a lot of our drugs that were originating in Northern Virginia were ending up in that area of Southwest Virginia. 

And in my assessment is they began to address the doctors down there that were responsible for the distribution in their area, the problem was still there because there was still flood of pills coming from other areas into their area ’cause the demand was there. They had developed a consumer base in Southwest Virginia that had a demand for the pills and was willing to pay more money than people would in other places. I did have doctors that I investigated and prosecuted in Northern Virginia that did have their own drug addictions to medications. So yeah, that definitely does happen. 

[00:07:52] Carole Blueweiss: Yeah, I thought that really elucidated to me the connection, how one thing led to the other. That brings me to the role of pharmaceutical companies. I wonder from that movie, let’s just start there and then you can give us your inside scoop on that. What they depicted was a marketing campaign to doctors and that, not all doctors were doing this maliciously, because they believed that these medications would help people who had pain. 

Yet we see in Dopesick the behind-the-scenes marketing campaign. And what struck me was that they created these marketing papers and they actually called it research. They presented to the doctors and they just made a case for how this is a great drug. Tell us how something like that could happen. Doctors who are super intelligent, go through medical school, just didn’t understand marketing, or maybe they did. So could you tell us your side, how you interpret all that? 

[00:08:49] Aaron Weeter: I feel like it was almost like a tidal movement, like a swell in the ocean that builds. In this case, Purdue Pharma, this drug, OxyContin, which otherwise had not been available. That opened up a whole new world.

And because these pills were supposed to be time release, in other words, you took an 80-milligram tablet, but you didn’t get 80 milligrams of oxycodone all at once. But you could give one or two pills a day and you could take ’em every, you know, 12 hours instead of every four hours. 

[00:09:22] Carole Blueweiss: Theoretically, a time releasing pill for pain sounds great. And for many people, it was, especially in a controlled hospital setting. But the problem was that when the doctors were now handing out prescriptions with no assurance that the patient would adhere to the recommendations, and since these were highly addictive opioids, people were at risk for overdosing.

You get a time release over 24 hours of a heavy duty pain-relieving medication. But what if you take the 80 or 160-milligram pill and crush it and snort it or chew it? You are getting a super high amount of opioid into your system dangerously quickly. Because people who were addicted needed that drug.

[00:10:10] Aaron Weeter: There was a very different dynamic between a controlled environment and an uncontrolled environment, and as these drugs continued to be marketed to physicians and pharmacists as safe alternatives to treat pain in larger dosages, it just basically, you know, became a tidal wave of opioids into a market that had not been available to that market before, wasn’t familiar with it. It created this massive population of people who became physically dependent and some crossed over to becoming addicted to these drugs. Then thereafter had a continuing need to have that medication or that chemical in their system. Which then logically, as things began to clamp down and physicians began to realize we can’t just keep doing this.

[00:11:05] Carole Blueweiss: And at the same time, these pill mills were being investigated.

[00:11:09] Aaron Weeter: And the FDA took measures and the FBI and the DEA and Health and Human Services agents began addressing criminally the physicians, the pharmacists, and the pharmaceutical companies responsible for this, all of a sudden that supply starts to dwindle of prescription opioids, which just, I think then opens the gates to what’s the alternative? 

The patients at that point who have become addicted, they still need that drug. And they’re gonna get it, and that’s where fentanyl starts to come in and there’s no better way to tie that back to the pill epidemic than to look at where fentanyl is now.

Fentanyl is being distributed, in large part, in pill form. The fentanyl that people are taking is made to look exactly like prescription medications. In my mind, there’s a direct tie between this pill epidemic that started in late 1990s and built through the early 2000s and mid 2000s.

And then pills became more difficult to get, and physicians stopped prescribing in the quantities and in perhaps in the manners that they were doing before. Fentanyl comes on in powder form, initially mixed into heroin, and then later with pill presses made to look exactly like that OxyContin that you used to use, or oxycodone.

[00:12:36] Carole Blueweiss: Am I right to say that there’s no difference between taking it in pill form versus shooting it into your arm except for the maybe speed in which you get high? 

[00:12:45] Aaron Weeter: Well, it’s interesting because the people that, and I’ve interviewed hundreds of people addicted to prescription drugs and fentanyl through my career, primarily prescription drugs, because fentanyl came on towards the latter part of my career.

But most of those folks draw a very strong line between taking the pills by mouth or crushing and snorting them or crushing, dissolving and injecting them. And they will be quick to tell you, oh, I don’t shoot. I don’t shoot my dope, I only snort. Or I only take ’em by mouth. Yeah, as far as mechanism to get it into your system, the direct injection is the quickest way, and then snorting and then perhaps chewing them and then just taking them by mouth orally, just swallowing them whole. That’s kind of the hierarchy of things, the reverse hierarchy. Basically shooting is the quickest way to get it into your system. 

[00:13:39] Carole Blueweiss: So I still can’t wrap my head around how the doctors, according to the Dopesick story, were being led by the marketing techniques of the pharmaceutical companies, that they didn’t do their own research in their own medical journals to really understand what they were doing. They made it sound like they just believed this very sophisticated marketing campaign from people that weren’t necessarily thinking of the patients in their best interests. They were more thinking about profits. Is that true or was it not that simple? 

[00:14:11] Aaron Weeter: Being a physician, not unlike being a police officer in today’s world, has become a lot harder. But I feel like they’re always very booked. At least when I make an appointment with a physician, they’re always very booked. They have a 15-minute increment to see a patient, assess what’s going on and make some medical decision-making to help that patient. 

They’re required to assess pain as one of the things that they go through in that appointment, and as folks come in and the physicians are exposed to patients who have experience with narcotics, perhaps have experience going to a variety of different doctors to get narcotics. Patients become very adept to dupe the doctors, to tell them what they want to hear or need to hear in order to prescribe.

And the physician has a limited amount of time to make that assessment and make a determination. And so I think it is very hard for doctors to do that effectively. But I think in the case, what I’ve seen in a lot of internal medicine doctors, they just won’t prescribe those types of medications and certainly not on a chronic basis.

What they have now added a prescription monitoring program. They can log in and if they were seeing me that day, they can actually put my information in there and see what prescriptions I have received for controlled substances within the last year, certainly, easily and quickly. It’s real-time, and they can have that in front of them before they make a decision on what to do. But it’s put just yet another thing on a physician within that 15-minute timeframe that they need to do to make sure that they’re prescribing appropriately. 

I know some of them saw this as an opportunity to, you know, either transform their mediocre practice as far as from a financial performance standpoint into something that could boom almost overnight. There are also doctors who, as I was saying, are just so busy and they have such a heavy practice that they just didn’t have time to independently research that, or didn’t take the time to independently research that. 

In the days when there were yellow pages, I went through the pain management physicians and let’s say there were 40 that were listed in the yellow pages, there were only three or four that I had ever heard of. There were practices and there were physicians always, even during that time of that heavy marketing by the pharmaceutical companies that did things the right way, because I never heard of them. And I did it for 20 years, and when I would hear about them, I would hear about them in a positive context. Oh yeah, we went to that guy. He wouldn’t prescribe what we wanted. 

[00:16:51] Carole Blueweiss: So when you say you hadn’t heard about them, meaning in the criminal justice system or?

[00:16:55] Aaron Weeter: Correct. I hadn’t heard about them from state and local police officers who were interacting with their patients who, you know, on DUIs or distribution cases, I hadn’t heard about them from insurance companies who said, hey, this doctor’s all of a sudden prescribing huge quantities of medications and his practice has, you know, kind of blown up. I didn’t hear about them in a criminal context. 

[00:17:17] Carole Blueweiss: You’re saying like the majority of doctors were not falling into this trap of over-prescribing. However, just agree with me or disagree with me, goes to show how just a few bad apples can create a tsunami. 

[00:17:33] Aaron Weeter: Absolutely. When a single physician can prescribe millions of dosages of opioids per year with his or her pen, there’s nothing that keeps them from adding another zero or adding a few more digits to the left of that comma.

And when they do that, they can absolutely flood the market. It was definitely a minority of the physicians who were responsible for the epidemic in my assessment, for sure. When we would take off some of these physicians and do search warrants of their offices, which would typically shut their practice down as far as the prescribing, all of a sudden, what you would hear within, you know, days and weeks from the streets was that pill prices had gone up because the bottom had dropped out of the supply market. 

There was a physician that saw over a hundred patients Monday after July 4th weekend. The average patient there was walking out with probably 200 pills of opioids, and all of a sudden, if you take those pills off the street for that day, imagine what the demand is still there.

The people that are consuming those pills and need those pills to avoid withdrawals are still going to want them. And if you take that quantity of pills off the streets, it has a real impact on price. 

[00:18:51] Carole Blueweiss: Could this have been handled differently? You talked about all of a sudden it was hard to get these medications. The price went up, and now you still had a problem of people that were addicted.

[00:19:01] Aaron Weeter: That’s a huge question. That could be multiple podcasts, I’m sure. In hindsight, of course. It could have been done, what should have been done and when. This movement to treat pain was a legitimate movement, right? People should not have to suffer needlessly with pain. But the way the pharmaceutical companies, some of them looked at it, I think was this is an opportunity now for us to put medications out there that will purportedly address this movement or this need to treat pain, but not in a way that was necessarily sustainable or helpful or valid. 

And so was there a way that they should have caught this beforehand? I think you look at institutions and agencies like the FDA, DEA, who have some purview. And primarily I think that’s at the FDA level as far as approving medications. DEA has within its purview, they have basically drug enforcement for illicit drugs and they also have DEA diversion, which handles pharmaceutical type medications and the control of those and the licensing, like I said, of physicians with DEA numbers. God, that’s a tough question for me to answer. In hindsight, everybody should have seen this coming, but it built so quickly. 

[00:20:19] Carole Blueweiss: We didn’t talk much about the pharmaceutical company. When you do look at the story of the opioid epidemic, there’s one family that comes up and one company that comes up predominantly. Are there others that were involved, or was it truly the Sackler family and Purdue Pharma that was really responsible in many people’s eyes? Is that a reality or is that a exaggeration? 

[00:20:44] Aaron Weeter: In a view from a thousand feet above it, it certainly seems that way. That this fire really started with the advent and the marketing of OxyContin. From there, what actually always puzzled me was OxyContin is a brand name drug. If you were paying cash for it at the pharmacy, you might be paying $15-18 for a pill. There was generic oxycodone available. And that was a generic drug, there were no trademarks or anything on that. Generic pills were available for less than a dollar a pill in a 30-milligram variety.

And so what we saw, as an accountant before I became an agent, kind of boggled my mind that people would pay $18 for a pill at the pharmacy when they could pay a dollar for a pill and get about half the dosage for the dollar. So why don’t you just double, triple, quadruple your money on that and get the generic?

And what happened is once the abuse deterrent features were put into OxyContin, which happened later on, all of a sudden the market for OxyContin dropped off because people could no longer really effectively crush and snort them or crush, dissolve, and inject them. It was no longer abusable in the way it had been.

All of a sudden, people switched over to oxycodone 30s, the generics, which in my mind always made complete sense anyways. Why are you gonna pay 20 bucks or 18 bucks for a pill when you could pay a dollar and get just about as much? 

[00:22:13] Carole Blueweiss: First of all, if you could just clarify real quick the difference.

[00:22:16] Aaron Weeter: Sure. So oxycodone is the chemical name for the drug, the opioid that is in OxyContin. So OxyContin is a brand name that has layers within the pill that allow the narcotic contents to be dosed into the system over time. Oxycodone is the the chemical name for the drug, and it’s available in generic as oxycodone.

[00:22:38] Carole Blueweiss: So which one was the one that was like $13 a pill?

[00:22:43] Aaron Weeter: OxyContin, the brand name. 

[00:22:46] Carole Blueweiss: So why did people not take the less expensive version? 

[00:22:50] Aaron Weeter: That’s a great question. And it’s like anything else, right? Just became like fashion. People wanted the green OC 80s. And that’s what everyone wanted and felt was the best thing out there. It’s the new brand that everybody wants to wear on the streets, and so people were drawn to what they knew to be the real deal, just like, you know, anything else in society. Fashion, cars. 

[00:23:18] Carole Blueweiss: Driven by marketing. 

[00:23:19] Aaron Weeter: Correct. Driven by marketing, right. So if you knew you were getting green OC 80s, that was the top of the top. That was the best of the best. And so demand for that was high and people were willing to pay more for that.

[00:23:33] Carole Blueweiss: So, it’s complicated. ’cause first of all, the names are similar, and second, it’s hard to wrap your head around buying a more expensive pill when you can get it for less. I wanna make sure that we get to the part of how this became an international situation.

[00:23:48] Aaron Weeter: The precursor chemicals that are used to create the drug fentanyl primarily originate in China. And those precursor chemicals are then brought into Mexico at this point in time. And the cartels are involved in the laboratories in which those drugs are created. Those pressed Fentanyl tablets are created and made to look like OxyContin 30s, the blues, basically they’re a little blue tablet, or a little pale blue tablet depending on the manufacturer of the formulation. They can put the etching, the marks on ’em and make ’em look exactly what you’d pick up at the CVS after having a surgery. 

But yeah, the cartels basically in Mexico are taking those precursor chemicals, turning them into fentanyl and then pressing them into tablets, which they then through time tested means of tunnels, airplanes, mules, drug mules, in other words, people bring those across the border from Mexico and then distribute throughout the US. 

[00:24:53] Carole Blueweiss: How did they do that so easily? 

[00:24:55] Aaron Weeter: I don’t know if it’s easy. It’s certainly dangerous and it’s certainly arduous, painstaking to get the precursor chemicals, to manufacture them in the laboratory, to compete with the other cartels to protect their product, to get their product from point A to point B.

The United States has a long border with Mexico, and this is not something new to our country or theirs. A means of, you know, tunneling underneath, going over top, or transporting through our border crossings. There are a lot of ways that they can, you know, get those across the border. And typically they’re not transporting, it’s, it is not a tractor trailer full of these medications. 

I’ve seen fentanyl coming in basically cast figurines where crack the figurine open and they’re all, you know, stuffed into baggies there, shrink wrapped, you know, they tried to eliminate the scent for drug sniffing dogs. Vehicles coming across the border are very frequently used and they have compartments, hidden compartments in them and places where the border guards have to be trained and understand and figure out.

But if you think about the volume of traffic that’s transmitting between Mexico and the US legitimately, and you think about what it takes to bring a thousand pills, you can fit a thousand pills into a very small container. It doesn’t take a lot of space to get that over, and they’ll certainly recruit people to do that work.

You know, one of the methods was they would have people, drug mules. Those are people that literally would take drugs and they would be put inside of either condoms or other kind of latex packaging, and they would swallow these drugs and they would swallow dozens and dozens of packages into their system and they would basically come across the border.

How are you gonna find that short of an x-ray? Right? And short of intel that person is carrying those drugs on them. And literally those drugs work their way through the person’s GI system, come out the other end, and then are distributed from there. So there’s no lack of rudimentary or sophisticated techniques to get the drugs across.

[00:27:09] Carole Blueweiss: China is the country where it starts. 

[00:27:13] Aaron Weeter: Correct. From what I have read and understand, China is basically the primary source for the precursor chemicals. And the US has taken steps. There was a recent article, I think, where they took steps and, and put sanctions against individuals and companies that the US had identified in China who, you know, manufacture and import these precursor chemicals.

But again, you’re trying to control something that’s really outside of our country and work with a country like China where it, it’s not like working with Canada to our North or even Mexico to our South. It’s a different, whole different type of relationship. 

[00:27:49] Carole Blueweiss: And this, is this specific to this opioid crisis, these pill cases, that it’s a China connection?

[00:27:55] Aaron Weeter: These drugs, when you talk about opioids, many of them originate from the poppy plant. And poppy plants have been grown through the centuries throughout I think Southeast Asia, the Middle East. Afghanistan, at one point, was a major supplier of those plants. Those opium poppies do have a legitimate basis for growing them and turning them into pharmaceutical grade, you know, medications that help people who need treatment for their pain. But they can also be turned into heroin. And so there has always been a network, you know, in Southeast Asia and also, you know, the Middle East.

[00:28:35] Carole Blueweiss: Because fentanyl isn’t coming from the opioid plant. 

[00:28:38] Aaron Weeter: It’s created synthetically with chemicals, yes. Not with a natural substance to start with. So you have synthetic opioids and then you have natural kind of opioids. And I think the basic difference there is one is coming from the opium poppy and the other is coming from some mixture and formulation of chemicals.

[00:28:56] Carole Blueweiss: And oxycodone and OxyContin were which one?

[00:29:00] Aaron Weeter: I believe they consider oxycodone to be a semi-synthetic opioid. 

[00:29:07] Carole Blueweiss: And then Percocet. Where does that fit into this vocabulary? 

[00:29:11] Aaron Weeter: Percocet is something that is available in, you know, much smaller dosages of oxycodone. So 5 milligrams, 7.5 milligrams. I believe there might be a 10-milligram version of Percocet as well. But Percocet is mixed with, the formulation it’s oxycodone and it has acetaminophen in it as well. So Tylenol. Yeah, so it’s a combination drug. 

[00:29:34] Carole Blueweiss: That was abused as well.

[00:29:36] Aaron Weeter: It was, but it wasn’t as popular because number one, it was a much bigger tablet than an OxyContin 80, even though it had a one-sixteenth quantity of narcotic in it. It had all of the acetaminophen in the Percocet tablet, so it was a larger pill. And people don’t wanna snort acetaminophen, and they didn’t want to inject acetaminophen. And then the other issue with taking it in quantity by mouth is acetaminophen has liver toxicity. You really start to damage your liver if you take too much of it. 

So in order to get as much oxycodone as one 80-milligram OxyContin, you’d have to take 16 Percocet. And doing that on a chronic basis, number one, they were huge tablets comparatively. And number two, you’re taking in all the acetaminophen and creating all these other issues for yourself. 

[00:30:30] Carole Blueweiss: Which, but I think of people that abuse drugs, they don’t think about their livers right? 

[00:30:33] Aaron Weeter: Probably not over the short term, but it probably would create issues for, you think about taking 16 of these giant pills.

[00:30:41] Carole Blueweiss: Yeah, now that the visual helps. 

[00:30:43] Aaron Weeter: Versus taking one. You have folks that are younger and newer to maybe the party and drug scene, Percocet might be something that people are familiar with by name that their mom took or their dad took after a foot surgery. And so I think there’s certainly a risk that a Percocet that’s distributed at a party is actually a Fentanyl tablet because it’s thought of as a lower level drug as far as levels of abuse. 

So it’s not sought after by folks that want to crush and snort. It’s sought after by people legitimately who have pain and are getting a Percocet by prescription as prescribed by their doctor. And/or maybe at parties. Oh, it’s just a Percocet. It doesn’t have that much, you know, stuff in it. It’s weak relative to the other stuff. And so I could see where it might have an appeal as something to distribute at a party. 

And the problem with that, of course, is that maybe that one quote unquote Percocet with fentanyl that he got made him feel great. The next one that he gets comes from a completely different source and manufacturing process through, again, China, Mexico, across the border, and it has five times as much fentanyl as the first one, and they’re overdosing and dead at that point. There’s no control over what’s in that pill.

Also you had mentioned, what should you do with medications that you have in the house that are left over, perhaps from a surgery that you had to ensure that those aren’t taken by anybody else? I definitely recommend getting rid of those. I recommend keeping them locked up when you do have ’em, even when you are taking them. It’s just a good idea to keep those things locked up. And I know that’s inconvenient, but it may be very important depending on your situation. 

And then if you do not finish using all the medications, look for ways to return those. Again, the DEA Diversion site should point you in directions. Health and Human Services website, if you did a search on there for drug take-back programs within your own community. Take what you don’t need anymore and make sure it gets disposed of properly. The days of flushing things down the toilet, nah, that’s probably not the best idea.

[00:33:03] Carole Blueweiss: The Adderall and the Ritalin, how does that fit in? Similar to the opioid issue or is it completely different? It’s a stimulant. It’s not an opioid. 

[00:33:12] Aaron Weeter: Right. It’s a stimulant. It has a different impact on the body and the mind. But is it distributed in similar ways? Yes and no. I mean, certainly at parties, I think you’ll run across Xanax for sure. Adderall is another one that you’ll often run across. And oxycodone, just depends on who shows up to the party and what they have. 

[00:33:32] Carole Blueweiss: Those could be laced with fentanyl as well. 

[00:33:34] Aaron Weeter: Absolutely. Absolutely. And I think nowadays if you are being offered them at a party, you have just as much reason to believe that they do have fentanyl in them than you do to to think they don’t. I just recently talked to a colleague of mine who’s still doing this type of work, and he said it’s just pretty much all of what’s being seen out there is illicit, as far as what’s on the streets in the form of pills. We’re not seeing the real oxycodone 30s or the real OxyContin 80s or the real Adderall tablets or Valium tablets, as much as we’re seeing pills and tablets that are made to look exactly like it but don’t have the actual pharmaceutical ingredient in it. They actually have fentanyl instead.

It’s talking to the people on the street who are struggling with the addiction that teaches you the most about every aspect from enforcement and what works, what doesn’t. People write me. I, you know, got Christmas cards from people who thanked me and would say, hey, you know, the only reason I’m alive is because you arrested me.

And it was a woman who spit on me as I took her to jail. And she absolutely hated me. And, you know, after she ended up serving her time and got out, I got a Christmas card from her later. I saved that. I can assure you there are many others who would’ve never sent me a Christmas card and who despised me.

I got one that was a, I think a handwritten letter from another family member whose wife had overdosed and died, who thanked me for working that case. And it’s not as surprising to get a letter from a victim. It was definitely surprising to get a letter or a card from someone who I had arrested. A lot of those folks did kick their habit at least for a time after getting dried out. It certainly wasn’t fun. 

[00:35:30] Carole Blueweiss: Thank you for bringing light to something that you hear about in pieces, and it’s hard to get the whole story, the deeper look into what happened, what is happening, and hopefully this information can help people one way or another. Is there anything you wanna say that I haven’t asked you?

[00:35:45] Aaron Weeter: This is just my perspective. I’m retired from the FBI I’m not giving any opinion on behalf of the FBI. But I think anybody that has worked opioids, pill cases, fentanyl for a period of time, will agree that it is a huge issue in our country. It is an epidemic and it is terribly sad to see, you know, all the impact it has had on our country. And deaths just continue to escalate and I wish I had the solution. 

I wish I knew exactly how to fix this problem, but I certainly don’t think only enforcement of our laws in this country that’s going to help this issue. But I do think it’s an important part of it. We have to stem to some degree this constant flow of drugs out onto the streets and into the hands of those who really don’t have the capacity to assess what it’s gonna do to them or where it’s gonna take them. And from our children to our parents, doesn’t matter. They’re all impacted by the opioid epidemic. I hope we continue to work on it on multiple fronts.

[00:36:52] Carole Blueweiss: In this episode, we heard about how the opioid epidemic of the 90s spread to become the fentanyl epidemic we have today. Fentanyl overdose death rates have tripled from 2016 to now. More than a hundred thousand reported fatal overdoses related to illicit fentanyl in a one year period. 

Addiction and overdose can happen to anybody. If you buy pills from any source other than an accredited pharmacist or licensed doctor, chances are they will contain fentanyl. These street pills look exactly like the real Percocet, Xanax, Adderall, and others, but they aren’t the same at all, and it takes just a little fentanyl to cause a potentially deadly overdose.

There is good news here. There’s a product that is now available at most pharmacies, and it’s available to anyone without a prescription. It’s safe and it can actually reverse an overdose if given in a certain window of time. That life-saving product is called Naloxone, which comes in an easy-to-use nasal spray called Narcan.

Narcan fits into a pocket or a purse, and it’s designed to be easy to use even by people without medical training. And if you use Narcan on someone who you think has overdosed on opioids, but that person has no opioid in their system, no harm is done. Having Narcan in your pocket can save a life. It’s been hailed a miracle drug, but this is the thing. The miracle isn’t just in the saving. It’s in the simple act of caring enough to be prepared. So go out to your pharmacy and keep Narcan close just in case. 

If you or someone you know is struggling with substance use, you are not alone. The Substance Use and Mental Health Service Administration national helpline is 1-800-662-HELP, and it’s available for support. This and other resources can be found in the show notes. 

The next episode of Wisdom Shared, we will hear how Aaron used undercover agents, how he found his informants, and much, much more. 

[00:39:16] Aaron Weeter: The majority of folks that we used to record their interactions with the physicians were existing patients. We did, however, use undercover officers as well.

[00:39:25] Carole Blueweiss: You don’t want to miss this. 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.

Episode Summary

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

About Anonymous Sister

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 SoulAnonymous 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: 

About Jamie Boyle

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.

https://www.jamielboyle.com/

About Julie Stampler

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. 

https://juliestampler.com/

From This Episode

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Transcript

[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.

Episode Summary

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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Transcript

[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.

 

Episode Summary

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

From This Episode

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Transcript

[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.

Episode Notes

EPISODE SUMMARY

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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Transcript

[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