Truth Teller: Sheila Nevins and Tourette Syndrome
Episode Summary
Sheila Nevins, a prominent documentary filmmaker and best-selling author, discusses her experiences with her son’s Tourette syndrome and speaks about the broader themes of aging, disability, and authenticity. Through personal stories and reflections, she sheds light on often misunderstood topics, emphasizing the importance of genuine representation over sensationalism. With humor and candor, Sheila shares her journey of seeking answers and navigating the complexities of life. Her commitment to storytelling is marked by a willingness to confront uncomfortable truths, making for a compelling and insightful conversation. Sheila shares a wealth of wisdom for us all.
About Sheila Nevins
Sheila Nevins is an American television producer and former head of MTV Documentary Films division of MTV Entertainment Studios. Previously, Nevins was the President of HBO Documentary Films. She has produced over 1,000 documentary films for HBO and is one of the most influential people in documentary filmmaking. She has worked on productions that have been recognized with 35 News and Documentary Emmy Awards, 42 Peabody Awards, and 26 Academy Awards. Nevins has won 31 individual Primetime Emmy Awards, more than any other person. The film, I Have Tourette’s but Tourette’s Doen’t Have Me, won an Emmy.
From This Episode
You Don’t Look Your Age…and Other Fairy Tales (I recommend the audiobook!)
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Audio Engineering by Steve Heatherington of Good Podcasting Works
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[00:00:00] Sheila: I would say treating all these various things, you know, a throat doctor, an eye doctor, a bone doctor. I mean, come on guys, a psychiatrist, you know, what was wrong with my kid? What was wrong?
[00:00:22] Carole: 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 very special guest, Sheila Nevins. Sheila is a force in the world of documentary filmmaking. Many of her films center around children and disability, stories about people and situations that might otherwise be misunderstood or overlooked.
She’s also the bestselling author of the book, You Don’t Look Your Age and Other Fairy Tales, which if there was ever a reason to buy a book using the Audible app, this would be the one. I was laughing so hard sometimes, even though the subjects of each chapter were quite personal and sometimes even serious.
For example, she dives into personal stories about her own reflections on aging. She has a chapter about her mom’s battle with autoimmune illness and a chapter explaining her and her son’s journey with Tourette syndrome. And that is where we will begin our conversation. Sheila tells us how she searched for answers to why her young son was spitting in class, eye blinking, and spontaneously moving his wrists.
After reading a magazine article, Sheila followed her intuition and took action. Before we hear from Sheila, I will read the Tourette’s Association definition of Tourette syndrome, so that everyone listening can know what it is. Tourette syndrome, or TS, is a neurodevelopmental disorder that becomes evident in early childhood or adolescence.
It is part of the spectrum of tic disorders and is characterized by motor and vocal tics. There is a hereditary component, but it’s not a simple genetic disorder. Studies estimate 1 out of 162 children have Tourette’s. The CDC estimates 174,000 children have been diagnosed from 2016 to 2019, and there are many that remain undiagnosed. When we hear about Tourette’s, it’s often sensationalized.
Hi, Sheila, would you like to add anything to that?
[00:02:27] Sheila: Hi. No, except that I think the numbers are probably a little bit higher. They’re tossed off as transient tic disorder, or not recognized by a lot of pediatricians as, oh, it’ll go away. My son is now 40, but when he was 5, 6, and 7, I was told he had dry eyes.
And the reason he was blinking so incredibly much and shriveling up his nose and all that was because he had dry eyes. So, for one year, we put three times a day, cortisone drops in his eyes so that he would not be blinking and he continued to blink. He had other disorders that were attributed, like for instance, he would clear his throat a lot, so he would go [throat clearing sound] and it was deemed then that he should have his tonsils removed, which was not necessary. If I hadn’t accidentally hit upon what Tourette’s was, I would have continued with the drops, continued clearing his throat with a tonsillectomy and believed that these were all isolated instances.
Behavioral things like touching another kid when you’re playing soccer. The physical need to touch their hand. Or the fact that his wrist, occasionally, when he started to read a watch, he would move his wrist back and forth, and that made it very hard for him to be a goalie in soccer, and so the kids would say, why, why’d you drop the ball?
He’d been to the same orthopedist about four times, with little snapped cartilages in his wrist, I don’t know if that’s the right word. But, you know, it’s always was a strap around it. So, these were three isolated things that I was taking care of. I was taking care of what I began to know was grunting and one of the vocal tics.
I was taking care of the eyes, which was, again, part of the neurological tic syndrome. And I was taking care of the wrists, which was why can’t he be better at sports? You know, he should be doing pushups and lifting weights and doing, I mean, I was all over the place in making these things go away and they were all coming at me in three different directions.
And one day I’m watching something like the Geraldo Rivera show, that shows you how far back I go, and some psychiatrist is on. So, I take him to this South African big wig psychiatrist in New York. And we’re playing, I can’t remember one of those games or whatever. And he says to me, when David leaves the room, he says, you know, what’s wrong with the son is that you’re a working mother.
He said, you travel too much. You’re not home enough. You’re not home enough to really deal with these things. So, this is his way of getting your attention. It’s completely psychological in the sense that if you weren’t traveling so much, and at that point I was traveling a lot, and I loved it. And I was.
Was I the perfect at home mother? No. But was that causing it? So, I walked out of this guy’s office because I felt, you know, I’d had enough. That there was no conceivable way that these four or five things. And the kid, you know, the fact that kids then began to bully him and pick on him a little bit, that these were all separate and all caused by the fact that I was a working mother.
So, it’s a very difficult five years old, nine years old was the toughest time of my life. There’ve been many other tough times, but I would say treating all these various things, you know, throat doctor, an eye doctor, a bone doctor, I mean, come on guys, a psychiatrist, you know, what was wrong with my kid, what was wrong? And I didn’t know.
[00:06:12] Carole: How did you cope with those feelings, and you had a very important, delicious job, as you say, you know, how did you manage when you were having all these challenges at home and going to work? How did you deal with that?
[00:06:24] Sheila: The most interesting one is that I developed my own tic, and I don’t know where it came from and I don’t know to this day, but I started blinking. I would wear glasses, but this is just somehow when you look at a kid and he’s doing, you know, this all time, you kind of either catch it or empathize with it so deeply because it’s your own child that I started doing things myself, like playing with my fingers a lot, biting my lip, twisting my lip and doing, I might’ve done them anyway.
And maybe that was a genetic component. I have no idea. But the point really was I didn’t have them as a child. I didn’t have them as an adult. I had them as a mother with an afflicted kid and it was extremely difficult. And how did I cope with it? Very badly. I was very upset, and I would take the red eye home from California all the time, just so I could be there when he woke up, because even though I didn’t believe this doctor, can I say dirty words?
[00:07:26] Carole: Say whatever you want to say.
[00:07:27] Sheila: Okay. Well, it’s a good word. I didn’t believe this fucking doctor. I knew it was wrong. We were paying Candyland with David. That was what it was. And he was moving his wrist while he was moving the thing. And I just said, look, you know, doctor so and so, I appreciate you’re doing this, but you’re making me feel like I want to cry, and I am going to leave with my son.
It was rough. And I don’t mean to leave out daddy because he was in it with me too, but he also was traveling a lot. He was an international banker, and he was gone a lot of the time. We had great home care. As a matter of fact, David kind of preferred Rosari often to me. The first thing I would say when I would call is, Rosari, is he ticing?
I was using that word, and I was using that word with doctors, and nobody put it together with Gilles de la Tourette, the man who discovered this in France as an actual affliction of children.
I have horrible teeth. I have poor girl teeth, I always called them because they didn’t have proper dental care when I was little. And so, I’ve had like hundreds of root canals. I was sitting in the doctor’s office. It’s almost unbelievable. I’m reading this article, waiting for my appointment. My tooth is killing me.
And I realized I’m reading David. I’m reading my son’s illness in this magazine. It gave you the verbal tics and the physical tics, maybe neurological tics. I said, Dr. B, I got to go, I’ve got to find out the head of the Tourette’s Syndrome Society, and she’s on Park Avenue, I just, this is pre-cell phone. I asked his nurse, could you look this up?
She gave me the name and a number. Oh, and then he developed spitting. And that made school almost absolutely impossible. The wrist seemed to have gone away, but the I was really pretty desperate, and my tooth hurt, and I called this doctor. As soon as we got home and I cried to my husband, I said, David has Tourette’s, David has Tourette’s.
And every depiction of Tourette’s on television at that point, and probably still now, was always someone yelling, fuck shit, fuck, fuck, fuck shit, fuck. Because one of the minor ailments of Tourette’s is coprolalia. And coprolalia is the use of language that is forbidden out loud. So, it’s like 2 percent of the cases, but it’s the one that’s so easy to dramatize.
Because you know, a guy sitting in a meeting or a kid and he suddenly said, fuck you, fuck you, fuck you. But it was just one of the many symptoms. And when I learned more about Tourette’s, I realized coprolalia is one of the rare symptoms of Tourette’s, but the media had done an enormous job of accentuating coprolalia because you’re going to do a show and a seven-year-old is going to yell out shit or fuck.
And then also the same thing is going to happen in a board meeting with someone who might be older who has Tourette’s. You say, well, we’d like to promote him, but he suddenly bursts out with these things. He’s a little crazy. They’re not crazy. They have Tourette’s. So, it was the beginning of getting into a program at the National Institute of Mental Health.
And it was the beginning of incredible empathy for the parents who didn’t know what was wrong with their child. I mean, there’s some things you don’t want to know. You don’t want to know that your kid has cancer. You don’t want to know a lot of things. But I wanted to know that David had Tourette’s. And I read all about Gilles de la Tourette and the fact that he noticed it in French school children.
And so, I asked the neurologist to come to the school and talk to the kids. They were going to ask David to leave the school. He was very smart, and it was a very high brow private school on the Upper East Side of Manhattan. I took him to Dr. Braun, and I sat in the office, and there were a lot of kids in the office.
One kid was picked up by his nurse. One kid was picked up by his mother. She said, come on in, Mrs. Koch. That’s my married name. And I walked into the office, and I sat down, and she said, David and I have decided that we know what is bothering him. Not what is wrong, but what is bothering him. And he can’t help it.
And it’s called Tourette’s. And David said, mom, I have Tourette’s. And I thought, I mean, I of course did my usual crybaby number, and we went home, and we went regularly, and we went into an NIMH experimental program in Washington, and he was taking a pill that was used to lower blood pressure in adults. And it was found to be very operative in children in a much smaller dose.
And the point was, what was that dose to be? And David was in an experimental program with that. It was also found that it was a very strong connection with strep throat and Tourette’s. And David had many, many strep throats. And by many, I don’t mean every day, but certainly two or three times a year for at least four years.
And so that simply made me think. And the surgeon that that was time to have his tonsils, well, David has his tonsils today. And he’s on medication that, not that much really anymore. Two things happen around puberty. It would either get worse or better. Sometimes around puberty, things change with Tourette’s. And David’s quelled. I don’t know if it was the medication. I don’t know if it was the recognition of what he had. I don’t really know, but David had Tourette’s.
[00:12:51] Carole: Did he stay in the school?
[00:12:53] Sheila: He stayed in the school. The kids were extremely intelligent and forthright in understanding it, seeing it as a mark of visibility, as opposed to a mark of disability.
And it was extreme, incredibly energizing to me that these little beings, who can be so mean, could, one of the kids, I always remember this. At a funeral, one of the kids had an aneurysm, he must have been 10 or 11, and he died on a ski slope, and there was a funeral, of course, at Campbell, you know, one of those fancy schmancy funerals, and it was deadly, absolutely deadly.
And as they were leaving, one of the kids said to David, and they were all wearing, I don’t know if they still do, they were in uniform with a little emblem on it, and they were all leaving the school, and I was going to say goodbye to David, they were getting in a bus, going back to school, and one of the kids said to David, as I kissed him goodbye, he said, aren’t you glad you have Tourette’s and not an aneurysm? And David said, yeah, I’m a lucky kid. And they got on the bus, and I thought to myself, he’s a lucky kid.
And that’s the, that was the story of it. I mean, there is not much else to say, except that it made me very aware of being eccentric and different and accepting whatever it is that you are for your stumbles, because they may very well be your successes.
And I was extremely moved by the way the school picked up the reality of it. Now, you have to understand before that it was considered almost deliberate behavioral because it, it was reflected in antisocial behavior of some kind. You know, if you do this, and someone insults you and you push them, because David was pretty big. There was behavioral issues that came with protecting yourself from bullying. Not every bullying is somebody weak and unable to punch back. A lot of aggressiveness is essentially bullying. So, the aggressiveness was essentially a kind of bullying. The behavioral stuff was because nobody gets what I got. Nobody understands what’s wrong.
[00:15:06] Carole: I’m a little confused. Are you saying he was bullied?
[00:15:09] Sheila: He was bullied and could create for himself a kind of bullying behavior in return. In other words, if you said, funny kids, you’re a clown, you’re stupid. He could push you. Not a lot, but enough to be behavioral, but once Tourette’s came out of the bag, my whole life changed, everything changed, the medication changed, and I don’t remember, I mean I do remember, but it’s probably not the correct medication anymore, and everything just changed, it just changed.
[00:15:39] Carole: What is your take on what’s happening now?
[00:15:42] Sheila: The first time I told his pediatrician that he had Tourette’s, the first time I told her, she said, oh please, every tic is not Tourette’s. And so, I thought of changing, you know, and then about, don’t remember how long it was, but I remember being in California and the phone ringing too early.
And she was on the phone, and she said, would you mind talking to this woman? I think her young son has Tourette’s. First time I ever heard her say that word. You know, not that I was in the education of Tourette’s, but I spoke to this woman, and he was exhibiting very similar symptoms, different, different parts of the body.
But nonetheless, you know, I told her about this other doctor and whatever. And so, the relationship with the pediatrician changed a little bit, but I never really trusted her entirely because she kept saying, oh, he has a transient tic disorder. Don’t make a big deal out of it, you know? And the interesting thing about Tourette’s, by the way, is that you can sit in a doctor’s office and not have it.
You, it’s not like all the time. So, I would assume the kid under supervision, this kid of the woman who called me was not exhibiting it in front of the doctor, but obviously exhibiting at school and other places. So, I became the sort of go to person for Tourette’s until it began to be much more of a common word.
And then I think I’d been at HBO for like 25 years and I finally got the guts to say, and to work with the Tourette’s Syndrome Association and ask HBO to do a film about it. And we did a film, and it won a primetime Emmy, and the thing was, it was very hard by then to win those Emmys because we were like stepchildren in the media business at that point.
So it was, it was a kind of sweet revenge, paid for, I might say, with your heart and soul, but it was a sweet revenge to get an Emmy for I Have Tourette’s, but Tourette’s Doesn’t Have Me. I looked at it recently. It’s really, a lot of things that I thought were great 25 years ago, not great anymore, but it stood for something great. It’s a little awkward. Did it seem old fashioned?
[00:17:49] Carole: I thought it was great.
[00:17:49] Sheila: You did. Oh, okay. You know, I’ll tell you something. One or two of the kids came from well-established families. They were not allowed to use their names. They were able to be in the film, but there was still the disgrace of having it to a particular family name.
[00:18:05] Carole: How did your son manage it now that he’s not a child anymore? Sounds like his symptoms got a little bit better.
[00:18:12] Sheila: Much better. He’s very open about it. He’s a genius. He has an extraordinarily high IQ. The computer saved him in many ways. He was the first to really be able to operate a computer in his class, when they came, when we had big, fat computers.
He certainly had behavioral issues, which were well under control. As the tics subsided, so did the behavioral issues subside. He’s a father. He has a beautiful little boy and a great wife. And he has a great job. And he has openly admitted to Tourette’s. Even though there are no visible, I know the symptoms, so I can see something like that, and I can hear an extra throat clearing occasionally, but they would not be any different than what you would see somewhere else.
[00:19:08] Carole: When I looked up Tourette’s, I watched two other documentaries, but they were the extreme. You would never think that what that girl has is the same as what your son had.
[00:19:19] Sheila: You see, that’s the problem. Like cancer or like anything, it goes zero to a hundred. And the point is a hundred is much more sellable because it’s dramatic. So, the media has not done justice to the variety of symptoms when, within a diagnosis. And I think that that’s really problematic and not fair to those who operate fully with it. I mean, there are degrees of dim-sightedness that go all the way to blindness, dizziness, there’s cancer, there’s, you know, I mean, I have friends who are 50 years into a mastectomy and I have friends who died in two years from breast cancer.
I’m not talking about ALS or something that has a fatal outcome or glioblastoma or things that have predicted endings. But within the variety of diseases and afflictions, I should say, not necessarily diseases, there’s a scale of zero to a hundred. And to give the zero or the ten, the person who rates ten on it, the symptoms of a hundred is not fair.
It’s not fair because, you know, there are certain things that a person who evolves or has medication that helps with Tourette’s can do that someone who has a hundred percent of it cannot do. So, you cannot blame, everybody has their own variety of a diagnosis. I don’t think everything is always the same.
[00:20:47] Carole: Your son’s social network, when he was at a point where he was diagnosed, or even if he wasn’t diagnosed, did he meet other kids that had what he had? I mean, I don’t even know if that’s a fair, good question.
[00:20:56] Sheila: No, no. We read the story from my book at the Tourette’s association together, but by then he was in his thirties. We stood up there and we read the story together. I read a paragraph. He read a paragraph. I read a paragraph. He read a paragraph. But I’ll tell you something about him that was really interesting. And I don’t think I’ve given him credit for it. And I think I really should was his openness in admitting that he had it, you know, that he actually was not ashamed to not be perfect.
And I think being the loudmouth that I am, I never really recognized his incredible bravery in accepting it. And part of it was he had great respect for the doctors who diagnosed it properly.
Having had an ill mother without an arm, without a leg, blue fingers, blue lips, blue toes, blue everything, and living with that from the time I was aware of it. Mommy, why do you have only four fingers on one hand? So having lived with that, I was prepared for confronting the reality of disability and the acceptance of it. I mean, I had experiences with my mother comparable to the bullying of my son, but for some reason, I always felt my mother could protect herself.
She was the only woman in her family. There were four brothers or three, I can’t even remember, but she was the only one who went to college and she had gone cross-country by herself when she was like 15, child of immigrants, to the Mayo Clinic to get something called a sympathectomy because she had pernicious Raynaud’s and scleroderma.
And I think in many ways, having talked to maybe in my lifetime, 20 women, and certainly having tried to be active in the Tourette’s syndrome association in the beginning, I think I began to understand the confronting it as well as the having it as being part of the having it. You know, that how you deal with it is as important as knowing what it is.
And I think when David knew what it was, there was a kind of sense of relief that he didn’t have this multiplicity of symptoms that were all coming from different places, that he was just a completely imperfect individual. And then when you join something like the Tourette Syndrome Association, you see other people, or when you sit in a waiting room with other kids, and you see the variety of the complexity of the disease.
One kid will be reading a magazine and not moving at all. Occasionally you’ll hear a, you know, a sound like that. One kid will be blinking. One kid will be doing nothing, and one kid will be moving, you know, tremendously. So, I think it gives confidence to be among other people. who have similar afflictions without necessarily making them your best buddy, because you can hobble around together.
I don’t think that was, you know, correct. My mother got no comfort from knowing other people who had Raynaud’s and scleroderma, because she had the most extreme version of it. So, in a sense, she was embittered by the lessening of it, because we were really in trouble. I mean, we really had the a hundred percent variety, whereas David could see that there were people that were much worse than he was.
And therefore, he felt sort of gratified. And also, because he didn’t have to have drops put in his eyes. He didn’t have to have tonsils. I was reading him books about your tonsils and cause we were planning the next November to have his tonsils taken out before it got really cold so that he could get better.
All these things that were going to happen didn’t have to happen because we knew what he had and none of those things were going to help anyway. So, you know, they were two different, you know, I’ve grown up with disability.
[00:25:01] Carole: The fact that you grew up with a mom with progressive and chronic illness, did that make you want to make films that represented people so that other people could understand what you kind of knew in your body?
[00:25:16] Sheila: No, I’m not that good a person. I wanted a job that played well. I wanted people to watch it. And I realized that in a very selfish way, that the acceptance of imperfection was watchable because we’re all imperfect beings. And that I wasn’t proselytizing for relief for the disabled. I was proselytizing for people to watch something that I thought would touch them.
I mean, my background had been theater and interestingly enough, disabilities. Which we all have, some are secret, some are not, some are mental, some are physical. We’re, none of us, perfect beings. And I think that seeing other people that are not perfect is, without exaggerating their laments or their complaints, as the media had done with Tourette’s and probably still does, I felt that there was an audience. So, I would like to say I wanted to change the world and make people be kind to the disabled, but I would not be telling the truth. I’m a truth teller.
[00:26:14] Carole: To me, it’s the same thing though, cause you’re just answering it in a way that makes sense to you, but how can you watch those stories and not be more empathic? How can you watch the stories and not understand more?
[00:26:25] Sheila: That would be the second level. The first level was would anybody watch this and without making it a preacher. What interests me now is, in terms of disability, is aging, because I’m very old, and, you know, I’m one of the few women who talks about being 85. Women don’t talk about it. I think that it’s not a badge of honor, it’s a badge of luck.
Even my mother lied about her age, and she was sick. I remember looking at her band on her arm, I said, Ma, it says you’re 56 or something, you’re 59. And she said, I don’t ever want to be 60. Well, I mean, I don’t know if she was 60 or whatever, but I think that she had this aversion to being 60 and she didn’t make it.
So, I’ve always had a different attitude towards numbers and aging. I Which is, I don’t know that it’s a gift, because disabilities come with aging. I’m not the same person I was 50 years ago. But I’m certainly not going to lie about it. Why would I? I know a woman who has two birth certificates. One she paid like a thousand dollars for like a fudgy birth certificate.
She’s actually a doctor. We once went into a dress shop together and the woman said, oh, is that your older sister? Cause I’d been there before. And I thought she was going to have a, I thought she was going to faint. She said, I am not older than her. She is not my older sister. And she didn’t buy anything in the store.
I of course bought earrings and, you know, the thing. And so, when I came in with her, I don’t know, you know, some people look better. Some people look worse, you know, you do what you can to pass. It’s crazy. If I have a pillow that’s hiding a hole in the couch, I still let people take the pillow and look at the hole. I’m not saying don’t move that pillow. Whatever you do, don’t move the pillow.
[00:28:16] Carole: I’m just really curious your answer to this question, the way people have transformed their faces and thinking that they’re going to look younger, but they actually look like they’re a mannequin now, creating this illusion of youngness.
[00:28:27] Sheila: But you know what, I mean, having been in Beverly Hills probably 30 percent of my life and Hollywood, as long as they feel good, who cares if their lips cover their nose? It’s how you feel about yourself. It’s not how other people perceive you. If you feel good looking like a mannequin, I work with someone who just did a lot of facial stuff, and she looks a little ridiculous. I don’t know.
I thought one side looked tighter than the, I don’t know. Who knows what they think about me? Why did I do it? Cause I wanted to work. Did I want to look younger? For me, it was a question of not having to give up my job because the population I was working in was so much younger than I was. I didn’t want to look so incredibly much older than the people that I was working with and for, you know, and still, I read some book about HBO and some guy says to his compatriot who used to torch me, he says, is she coming?
Meaning mate, how old is she now? I mean, I worked in a corporation until I was 85 years old. And that’s quite remarkable. I never lied. When I said to some guy at Paramount, at MTV, why are you hiring me? I could be your grandmother. I could be your great grandmother. He said, and this is a quote, I hired you because your films helped me understand being gay. And I, you know, got all weepy and, you know, I came home. I said to my husband, I really did something good, and they really like me. And I really, my film made a difference. And he said that. And then the bottom line is, I mean, I thought I made a friend for life that day. I barely had an acquaintance with him after that.
And when I left at 85, nobody said goodbye. I just was gone. I mean, you know, maybe one or two women. But nobody said, I love you. You’ve made my films. You know, we work for me. I became a little brazen about being a certain age because I thought I’m going to wear it, I’m going to say it. And I, I didn’t use to say it.
I used to just, it was there, you could look it up. But I have a friend, several friends, who have taken it off all of the internet. You can hire someone who can take everything off and it costs like a thousand dollars and there’s no birthday, there’s no graduation from college. There’s no, it’s so ridiculous.
[00:30:55] Carole: Right now, anybody who talks about chronological age in relation to aging is old fashioned because age, they study because there’s so much variety now. People are living longer, and some people take care of themselves, and some people don’t. And I know for myself, I could see a 90-year-old who looked or acted or was physically healthier than a 40-year-old who did whatever they did with their life, sitting in front of a computer all day in fluorescent light.
[00:31:19] Sheila: But there’s also genetics. It’s not just what you do with your.
[00:31:23] Carole: And genetics. Yeah, exactly. So genetic, so chronological.
[00:31:26] Sheila: If I had had my mother’s disease, I wouldn’t be sitting here today.
[00:31:30] Carole: Right.
[00:31:30] Sheila: I simply wouldn’t.
[00:31:31] Carole: But it’s not because of an age. Right. So that’s exactly, yeah, exactly my point. So, it’s just people are so obsessed with the numbers, like you said, they erased it.
[00:31:39] Sheila: But aging is a reality. It is a reality. It simply is a reality. There’s certain technological things that I don’t even try to do because someone else can do it for me. But I don’t think I would be able to, and it would take me so long to learn. But as long as I know if I’m making a film what works, as long as I have an idea a minute, I feel refreshed by experience as opposed to buried by it, for want of a better word.
And I’m not ashamed of it. I’m not ashamed of what I can’t do, because I know what I’ve done and what I can do. But I don’t, for one second, think that aging is a butterfly.
[00:32:17] Carole: But you make a choice. You make a choice not to take the time to learn technology. Like that’s a choice.
[00:32:22] Sheila: Yes, but I think it would take me so long. I’m not embarrassed by it. And someone else can do it better than I can do it. I don’t try to do open heart surgery. I wear a lot of makeup when I go out. I hear people when they say you don’t look your age or whatever. I don’t necessarily believe them. I don’t care. I’m here for as long as I am, and I’ll be a speck of dust like everybody else.
You won’t be here in a hundred years, and I won’t be here in a hundred years. So, what does it matter if you’re 60 and I’m 85? Even my son is 47. I look at my little grandchild He’s two and a half years old and I think I’m not gonna see you, sweetie pie, graduate and you’re so smart. You’re so beautiful. But that’s life. What am I going to do?
You’re going to remember me, or you won’t. Whatever it is, I’m going to kiss you a hundred times now because I’m going to play hide and seek and when I hide, I’m going to be found again, but one day I’m going to hide and I’m not going to come back and that’s it. That’s life. You want to go to heaven? Go to heaven. You want to go to hell? Go to hell. Whatever you believe is okay with me. What do I believe? I believe in compost.
[00:33:27] Carole: Sheila, why did you agree to come on this podcast and talk about Tourette’s? Why was that important to you?
[00:33:32] Sheila: Oh, that’s interesting. I’ll cry. I didn’t want anyone to go through what I went through. I don’t want anyone to have to suffer needlessly a sick child without knowing that the child can be helped and that the wounds are not forever necessarily and that there’s medication out there and there are doctors out there who will accept that diagnosis. And I wanted people to know the symptoms of it because I suffered tremendously for the six or seven years of guilt, all the way from working too much, to doctors, all kinds of doctors, surgeons, eye doctors, orthopedists for his wrist. I mean, come on guys.
I don’t want anyone to have to go through that. Not because I’m a great person, I just don’t want to see somebody cry if they don’t have to. Is that a great person or is that just not wanting to see yourself in somebody else? Probably a little bit of both, maybe, you know. I have a friend who thought her kid had Tourette’s.
She went to someone at Weill Cornell New York Hospital and their specialty was neurologic disorders and preteens. That was their specialty. Oh, I would have died for someone like that. Instead, I went to a regular pediatrician who told me he had a transient tic disorder. I looked up the word transient, I said, what’s so transient about this? It’s been going on for two or three years and it’s getting worse. So, what is it? It’s not transient.
[00:35:04] Carole: It sounds like from what you said, you did not have any support back then. Now do you see that there are support groups for people?
[00:35:11] Sheila: Selfishly, I backed out of being active at Tourette’s because David’s gone on and had his own life. I think there are more supports. I think that Tourette Syndrome Association is extraordinary because that’s who I called from the dentist’s office, and they gave me her number. I saw her within three days of reading the article. And you know what’s so interesting? The nerve pain in my tooth went away. I eventually had to have that tooth pulled. However, it didn’t hurt that night. So, you know, who knows where pain comes from. But I remember that day. There are a lot of days I don’t remember. But I remember that day. I remember the chair I was sitting in in the dentist’s office.
[00:35:57] Carole: I was going to ask Sheila to read from her book, You Don’t Look Your Age and Other Fairy Tales, but she beat me to it and asked if she could read the chapter called “The Giant Named Tourette’s.
[00:36:10] Sheila: The Giant Named Tourette’s. I could never love anyone more. He was my little boy, David. I never knew he would fight Goliath, and yet he did. It was a giant that I would finally learn was named Tourette’s. Tourette’s would crush and stomp on all dreams of normalcy. Tourette’s would disturb quiet sunny times with a thunderous clap.
Tourette’s would enter without invitation and was the dybbuk that would overcome my relatively wooly child. Tourette’s came slowly at first. When David was two, I noticed continuous eye blinking, so I took him to the eye doctor. But in the office, he didn’t blink once. The doctor was unimpressed and suggested that David might have dry eyes.
So, I bought a humidifier, didn’t help at all. I took him to some pediatric eye specialist who suggested cortisone drops. Those didn’t work either. No one knew what was wrong with David’s eyes. David would continue to blink, somewhat inconsistently and excessively, sometimes 30 times in succession, and then not at all for the rest of the day.
When he was about three, I noticed this peculiar raising of his right shoulder. He would raise it again and again and touch his ear repeatedly. Then there were those low grunting noises, almost like throat clearing. None of these behaviors were predictable. They would explode and then recede. Some days they seemed to vanish and then they would hurricane in as if a storm had possessed them.
Why couldn’t he stop? Respectable pediatricians said that the throat clearing was possibly from tonsils that were too large. So, we determined we would remove them come spring. The eye blinking, they were convinced was dry eyes. As for the shoulder raising, the experts said it was transient. Don’t worry, Sheila, the doctor would say, it’s just a tic, he’ll outgrow it.
But it got worse. The tics, as they were called, continued and morphed into variations. A new child psychiatrist, highly recommended, told me my long business trips might be making David nervous. He was an expert in child behavioral disorders and suggested that mother’s absences are much more significant than those of their husband.
Our pediatrician, and this psychiatrist, the best that Park Avenue had to offer, concurred that I was most likely the cause of David’s excessive ticing. But I never loved my job more than I loved David. If the tics would stop, I would be a stay-at-home mom. But somehow my husband and I didn’t trust this theory.
This ailment seemed independent of my work, and I was almost always in attendance when it came to David, with little sleep, red eyed travel, present at every parent meeting. One night, unable to sleep, I carefully watched video footage of David’s last birthday party. He was six. I noticed eye raising, twitches, and throat clearing.
I wondered if I had forgotten the three times a day drops. What had I done? Although I was compulsive about them being given exactly on time. What did I do wrong? Please tell me. And then, as if things weren’t bad enough, the school headmaster called, stating somewhat confrontationally, that David was rudely spitting in class.
Sorry, I said. I’ll talk to him. Spitting in homeroom? Spitting occasionally in reading? Spitting in math? Oh, God. David, I said, you have to stop that spitting. You just must. He slammed the door to his room so hard, the freshly painted ceiling plaster fell. Why couldn’t David stop? But it continued. The spitting, the grunting, the throat clearing, the eye blinking, adding wrist twisting and eyebrow raising.
I was beside myself. Should I quit this delicious of all jobs? The school called and threatened again. He cannot stay if he continues spitting in class. That was the headmaster’s message. David, can you stop the spitting, I said one night. So exhausted. I tried and I can’t stop, he said. And he started to cry.
What do you think makes you grunt? Is your throat sore? I pleaded. I don’t grunt. What’s a grunt, anyway? Was it possible he was not aware? Leave me alone, mom. I’m not going to school anymore. The kids make fun of me. They call me chief spit face. Well, they shouldn’t do that. Try your best to stop spitting, I said. And maybe they won’t make fun.
I can’t, Mom. I want to, and even if I did try, I don’t know when I’m going to do it next. I put a sobbing boy to bed. I looked at his sixth birthday video again late that night. Was it possible that he didn’t know what was actually going on in his own body? The party had been at Jeremy the Clown’s workshop.
These kids were so cute in their hats, blowing their paper bugles. I watched David on the tape, replaying the party again and again from a thick cassette. It was 1986. I wanted to watch him carefully. I had a toothache anyway and I couldn’t sleep. The dentist was set for tomorrow.
The birthday boy sang first. Happy birthday to me, David would clear his throat, Happy birthday to me, David would giggle, Happy birthday to me, I’m David, David would blink a little, Happy birthday to me, and then he would spit. All the kids laughed. Could it be that David didn’t even know he was spitting? I wept, said my husband, what’s wrong, I said, what did I do?
Nothing, he said, don’t blame yourself, he’s my son too, and you’re a great mom. What should we do, I asked, crying. Maybe we should remove his tonsils now rather than wait, he suggested. Yeah, I agree. Maybe all this is related to his tonsils. Yeah, I said. The next morning David refused to go to school. I called the pediatrician known to her kid patients as Dr. Susie. I was crying. There’s something wrong with David like a paralysis or seizure or something. What is it? Sheila, lots of kids have that, it will pass, she said. And alas, she was a woman, a working woman with grown children. Did they twitch and spit and grunt? Did it pass? I wondered.
The babysitter came early, and I rushed to the dentist. Root canal. I had to do it now. I waited in the office. I leafed through Family Circle magazine. It was full of recipes and cooking tips that I would never need. And then an article on Tourette’s. I thought that was when funny looking people said dirty words in public. That was all I knew about it. I read the article carelessly.
Suddenly I was riveted by a section that gave a list for diagnosing Tourette’s. Two motor tics. I thought, eye blinking, spitting. One verbal tic. Mm. Throat clearing and grunting. I dropped the magazine and my heart was racing. David has Tourette’s. Goddamn it, David has Tourette’s! I tore the list from the magazine and rescheduled the dental appointment.
The tooth hardly hurt. I was determined to bring this information home. Hey, experienced doctors. Hey, book writing pediatricians. Hey, headmaster at a fancy prep school. Did you ever hear about Tourette’s? And so, it began. The Tourette’s game. Neurologists, doctors who concurred, pills to try, why me’s, and sad outbursts.
I was not always noble, yet David was always in front, brave with the knowledge and forthright in acceptance. As if he said to himself, I have Tourette’s, but Tourette’s doesn’t have me. David seemed relieved knowing he had a diagnosis and accepting the fact that it was not within his control. He’d always known that, that this was not malicious or deliberate.
If he wanted to know anything, it was why they were there. And where did they come from? Why does my body do what I don’t want it to do, he asked, and so came useless explanations that I deemed suitable for a now seven-year-old. Body sometimes messes up, I said. And then sometimes it gets better, and the body’s brain can be very, very smart, or so I hoped that jumble would explain it.
You see, sometimes the body messes up messages, like getting the wrong mail. He answered, Mom, you’re not making any sense. I wasn’t making sense. I was there alone in Tourette’s Land. I didn’t really know the answer. There were no tools, no books, no videos. It was hard to explain to a child. The spitting would stop eventually.
Replaced by nose scratching and face scrunching. The grunting lowered. Then came object touching and various milder versions of ADHD, OCD, and other concomitant symptoms, newly named. I learned from the expert, not then easily found in the field, that Tourettic symptoms change. And are replaced by old ones with new ones, and new ones with old ones.
And they seized the neurological system. Medicines came mostly not approved for children. The medicine was try and see and watch very carefully. And I did. And so, the symptoms would wax and wane. David would grow into them and out of them. Strangely, I found myself doing several imitative tics. I don’t know how and why that happened.
I would chew my lip and clear my throat involuntarily. On some subconscious level, maybe I was trying to lessen his symptoms by adopting them as my own. I read everything, went to meetings, enrolled him in various tests, and I cried a lot. But then, and this is the point really, we were not alone. In 1885, Georges Gilles de La Tourette, a neurologist in France, had discovered a syndrome in school children.
It would be named after him. Today, symptoms of this disorder are seen in one out of every hundred school children, possibly more. I could never thank this doctor enough. A perfect, challenged child gives one empathy and insights. I’m not going alone. I’m no Pollyanna here. Nevertheless, I am somewhat grateful for the wisdom, though always furious at the price I pay.
David accepted tics and incorporated them into being who he was, smart, wise, difficult, his own kid. David is now all grown. The symptoms have subsided, except for an occasional grunt, well hidden, and easily acceptable. But David happens to be one of the lucky ones. What to say? What to learn? Only 5 percent of people with Tourette’s have coprolalia, which is yelling out unacceptable or forbidden words.
The media has not done Tourette’s justice, so be kind when someone involuntarily shouts out or twists and tics. Have pity, they can’t help it. They have as much control over their actions as they do over the color of their eyes or their height. It’s all genetics determining this variety of sounds and configurations.
My boy is a hero. He is a success at work and school. He chases stray cats and seeks rescue dogs. His heart is easily touched, and the tears spent in childhood made his empathy deep and personal. Yet always reserved. He is a complex product of his unusual self. No, I do not wish Tourette’s on anyone. But life’s not a bowl of cherries.
I have grown to appreciate diversity in others and laugh out loud and long at the good things in life. I wanted David to be accepted like everyone else. I certainly did not want him to be bullied as he was. I learned from David that standing out, if you survive, can have its own applause. It makes you unique in a copycat world. It makes you see the possibilities in difference. The price is dear, but exceptions nudge us forward.
David, let me write this. I asked him if I could. Thanks, David. For more information on Tourette’s, visit the Tourette’s Association of America. At www.tourette.org.
[00:48:55] Carole: First of all, thank you for reading that so beautifully. Is there anything you would like me to ask you, or you’d like to say that I haven’t asked you?
[00:49:02] Sheila: I think it’s important to relieve people of some of the pains of existence in some way. And I think parents, who want the best for their children, have to be, you know, merciful to their ailments and somehow remedy them as best they can and not be afraid of drugs. Three days after David was on this experimental drug, he joined the French Debating Society at his school.
[00:49:28] Carole: Thank you so much, Sheila, for coming onto Wisdom Shared and speaking to us about Tourette syndrome. I learned so much.
[00:49:34] Sheila: Thank you.
[00:49:37] Carole: As we wrap up this conversation with Sheila Nevins, I am struck by her refreshing candor and no-nonsense approach to storytelling. Sheila doesn’t sugarcoat things, whether she’s talking about her son’s journey with Tourette syndrome, her mother’s disability, or the realities of aging in and out of the entertainment industry. What stands out about Sheila isn’t just her impressive list of accolades, or the groundbreaking documentaries she’s produced.
It’s her commitment to authenticity, even when it’s uncomfortable. She’s not afraid to share her own struggles, missteps, and moments of vulnerability. She’s not interested in presenting sanitized versions of reality. Instead, she’s focused on telling true stories, sofa holes and all. And she does it with a sharp sense of humor that keeps you on your toes.
When it comes to Tourette’s, Sheila’s seen how it’s often sensationalized in the media. She wanted to show it differently, not some over the top portrayal, but the real deal from people who live with it every day. That’s what we like to hear on Wisdom Shared, genuine experiences shared. I cannot thank Sheila enough for being on my show.
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.
