Shop for a CausePolly Draper & the Tourette Association of America
In 1998, I wrote a movie called The Tic Code—it’s about a jazz musician with Tourette’s. The subject hits close to home—my husband Michael, who’s a jazz musician, has Tourette’s. So while I first connected with TAA through the film, we’ve been involved with the organization as a family for years. He was even head of the association for a while.
My husband had a lot of shame around it for a long time. He didn't find out he had it until he was older. He just thought he was “weird” until about his mid-thirties. Back then, people thought Tourette’s was a simply a swearing thing, or uninhibited impulses, but it isn’t necessarily that. I also saw that jazz and Tourette’s were connected, in a way. Jazz is a free-form of music, with little structure, and Tourette’s is sort of the same—but with brain chemistry. I felt it would be an interesting combination to show on screen.
My husband used to be so ashamed of Tourette’s and really tried to hide the condition from everyone. But he has it in such a powerful way that many people either already knew or assumed. He would always tell me not to tell anyone. But I thought it was actually better if you let people know, because then they’ll either get it, or they’ll ignore it and won’t care about it. When people don’t know, they wonder and question things a lot more.
When he read the script, it really hit him and his soul. He said it should be out there—but not to tell anyone it’s him. But it was obvious it was about him. And that’s where the previous president of the association, Judith Ungar, came in. She was on the set of the movie, and she really convinced Michael to be open about it. She said it could really help people and that he needed to be on the forefront of it. And Michael was able to turn it around and make it a positive force in his life, instead of a negative, by helping a lot of people. It changed his life for the better.
The movie was life-changing for people who have Tourette’s. It was really the first thing that had come out about it. There was not much else that talked about the condition, and certainly not anything that it was positive. So many kids have come up to me at the association’s benefits and said that watching the movie changed their lives, that they never thought there was anyone else in the world like them. Seeing the move made them feel like they were part of a club they actually wanted to belong to, instead of being embarrassed by it.
They are the most joyful experiences to witness. These are people that have been told all their lives to hold in their tics, and then they go to these events and can finally be free. They’re so happy to be able to say and do whatever they want. Everybody is saying exactly what is in their subconscious at that moment, they're showing all their anxieties, they're showing all their joy… there's something really liberating about being around people with Tourette’s.
It educates schools and teachers on the condition, which is so important. If you didn’t know a child has Tourette’s, you might punish them for being disruptive. You learn to work with a child with tics. Then there’s the medical aspect—raising money for neurological research, even deep brain stimulation. The most important part is the awareness: TAA brings awareness to the all things associated with this condition, so that kids, especially, aren’t stigmatized by it. So many people find Tourette’s to be this mysterious thing, but it’s not. We have to destigmatize it
For sure. If you've spent your whole life with people turning around and staring at you, or telling you to shut up, you end up spending a lot of time trying to make sure you're not tic-ing during really important moments when you need to be quiet. And that is tough. For Michael, being up on a stage and controlling his tics was very hard. When he’d get off stage, he’d go insane with his tics.
“You’re allowed to see Tourette's as part of the person, because it's part of what shaped them to be the caring, loving, sympathetic, empathetic person they are.”
For one, that everyone who has Tourette’s has coprolalia, which is compulsive swearing. But there’s much more to it. Some people have obsessive compulsive behaviors where you have to touch things five times; others develop eating disorders from it. It’s all about some sort of obsession and control—not having control and having control.
It is hard to tell with kids, especially when they're young, but eventually it gets pretty obvious. One thing that helps is cutting out all sugar. So, if you have a child you think might have it, try cutting out sugar, red dye #2, vinegar and pepper from their diet—they are all stimulants. Coffee and chocolate, too. The difference is amazing.
I want them to know there’s a huge community here for them. Kids, for example, feel so much better when they are part of it. And most all of them have a great sense of humor! I don’t think I’ve ever met a person with Tourette’s who doesn’t. For people with Tourette's, they’re saying the things that most people would decide not to say—but they'll say it. And that’s the essence of humor.
There’s also this misconception that people with Tourette’s are shy. They’re actually very friendly, fun, and fun to be around. And many of them are very creative and have lots of artistic ability.
Look beyond it. Don't see this thing as the whole person. You’re allowed to see Tourette's as part of the person, because it's part of what shaped them to be the caring, loving, sympathetic, empathetic person they are. Don't pretend it doesn't exist but don't point it out. We had a friend whose daughter had Tourette’s and the mother was constantly pointing it out to her, saying things like, “Stop. Can you stop doing that? Will you please stop?” And it doesn't help at all. In fact, it is like saying to someone, “Will you stop sneezing?” You can’t. If you're sneezing, you're sneezing, and it's almost as if they're being told that they can control their tics, which they can't. If you have a child that has it, try to not to control them.