His troubles started in the summer of the year I turned 16. (I'm now 26.) It was 1989, and I'd just completed a tough year at Canada's National Ballet School in Toronto, where I'd been studying since I was 10. I was enjoying the break from schoolwork and ballet classes - just being a kid and hanging out. But everything changed when my little brother, Damian, an energetic eight-year-old who's freckled, red-haired and cute as a button, was diagnosed with a serious illness. Damian had always been sick a lot, suffering asthma attacks that often got so bad, he'd have to wear an inhaler mask for 20-minute stretches. The mask was attached to an air pump that made a huge racket, and sometimes he would have to go through this noisy procedure four times in one day. But that summer was worse. Damian seemed to catch every cold that went around, and he was doing a lot of snorting and wheezing and twitching. We had to keep reminding him to blow his nose. Frankly, he was driving us all a little crazy.
But we didn't think too much of it; we assumed he was just too busy playing to stop and grab a tissue. Then one evening, Mom witnessed something really unsettling: Damian's eyes rolled back into his head, as if he were having a seizure.
No definite cause for TS has been determined, but research points to an abnormal metabolism in the chemistry of the brain. It occurs three to four times more often in boys than in girls, and a parent with TS has about a 50 percent chance of passing it on to the next generation. There is no cure, but medication can help control the symptoms, which sometimes lessen as people get older.
Soon after Damian's diagnosis, I landed a role in the Toronto
production of The Phantom of the Opera. It seemed so unfair that my life
was going well while my little brother was suffering. I felt guilty and
helpless, wanting to do something, give him something to make it stop. I
think everyone in our family - my mom, Marnie, my stepdad, Mike (Damian's
father), and my older brother, Christian, who is 27 - couldn't help but
feel the same way.
But how could I blame them? Although Damian and I had always been close, sometimes I didn't know how to react. Often I'd pretend not to notice his twitches, so he wouldn't feel self-conscious. I didn't know what else to do.
To help Damian get through school, Mom started giving educational presentations to his classes so that his teachers and schoolmates would understand what was happening to him. She taught them how to help Damian stay calm and focused, which helped keep his tics to a minimum (stress and anxiety can make them worse). After that, some kids became Damian's friends and protectors on the playground. But even though his classmates were beginning to understand him, Damian still had to contend with the cruelty of people outside school who weren't educated about TS.
As the score played, the "eeps" increased in volume. Within a few minutes, a man sitting behind us tapped Mom on the shoulder and said, "Can't you make him stop?" Whispering, Mom quickly explained that Damian had Tourette Syndrome and that he'd settle down once he focused on the movie.
But the "eeps" didn't stop-in fact, they became louder. Another man behind us sighed heavily, and Damian sank into his seat in shame. We moved, but it wasn't long before the manager asked us to leave because other people in the audience had complained. I'll never forget following that manager up the long aisle in total disbelief, fighting back tears.
Damian was so upset, his tics worsened. While my mom argued with the manager, I hugged Damian outside the box office. Suddenly, a young woman came running up to the manager, screaming, "You can't do this! I work with these kids. This is discrimination!" The manager ended up inviting us to see the movie from the projection booth - but it turned out to be useless because you couldn't hear the soundtrack over the roar of the projector.
When the movie ended, Mom took us to Ben & Jerry's. Over sundaes, we talked about how stunned, angry and hurt we were, and wondered what we could do to prevent this type of incident from happening in the future-not only to us but to other people living with TS. That's when I decided to work to educate people about Tourette Syndrome.
It feels good to be able to use my success to help others like Damian, to spread the word that people with TS are not crazy or dangerous. In fact, many of these folks are the most creative, talented, bright and funny people I know. It's been called "the world's most common unknown disorder."
Damian, who's now 18, recently finished high school. He has experienced a remarkable turnaround. About a year and a half ago, he made a personal decision to wean himself off all medications, choosing to live with his tics rather than continue to suffer such side effects as sluggish metabolism, weight gain and lack of energy. He says he's learned how to control a lot of the symptoms, and now he only emits the odd minor twitch in times of excitement or stress. And there is a bright side to his earlier suffering: While home from school all those years, he became an incredible, self-taught computer whiz. In fact, he was offered a job in the field before he even had his diploma. So he'll soon be putting his hard-earned skills to use for a computer firm in L.A. (In the meantime, he's living at home in Guelph, Ont.)
TS has really taught me a lesson about judging people who are different. Now when I see somebody do or say something I don't understand, I try to look beyond appearances and ask myself what makes that person tick - no pun intended. Think about it: When you keep an open mind about things that seem unusual or strange, all sorts of new understanding comes to you. The world gets bigger, and so do you.
For more information, contact the Tourette Syndrome Association at 888-4-TOURET or visit its Web site at http://tsa.mgh.harvard.edu/