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Life with Tourette Syndrome, part 2

April 9, 2009

This week, I conclude the essay I began posting last week. Thanks for coming along for the ride, and I hope you continue to stick around for the answer to the eternal question, “What’s she going to blog about next week?”



After he made the diagnosis, the doctor asked me if I would be interested in contacting any local Tourette Syndrome organizations. Would I! Up until that moment I had no idea that there were other people out there like me. To meet even one other person who had Tourette Syndrome, to be able to talk tics with someone without needing to explain what I meant, would mean so much more to me than any medical breakthrough.

Phone number in hand, I called the local Tourette Syndrome chapter the moment I got home. I was disappointed that an answering machine picked up, but hearing the words, “You have reached the Metropolitan Detroit chapter of the Tourette Syndrome Association…” gave me a thrill the likes of which I hadn’t experienced since I passed the audition for a local theater production of “Sleeping Beauty.” I was validated, I was legitimate, I had found a place that wouldn’t judge me by my strange movements.

Evening came, and I still had not received an answer, so I called back. This time a woman answered the phone, the same voice as on the machine. I explained who I was, that I had called earlier, and apologized for my impatience. I was re-assured that Touretters tend to be impatient people. I felt another jigsaw piece fall into place. Knowing what was wrong with me helped to explain so much about myself, why I did certain things, like rocking back and forth while watching TV, blurting out answers in class without waiting for the instructor to call on me, or needing to scuff my toe on the sidewalk after accidentally scuffing the other because I had this urge to “even things up.”

When I finally arrived at my first TSA meeting, I was amazed at what I saw. People, at least two dozen people all in the same room, were ticcing and it was okay. Kids, teenagers, adults, they were all making these weird movements and odd noises and no one gave it a second thought. I had two different impressions simultaneously. One was a sense of awe and wonderment. This was a haven, the one place where having Tourette didn’t matter. The other was a sense of revulsion. They seemed so bizarre, so freakish. Was that what I looked like?

As we each went around the room introducing ourselves and relating our stories to the group, I learned more and more about myself through others’ experiences. My parents had always accused me of being too distractible, and here these people were discussing how they dealt with their children’s Attention Deficit Disorder, which is a common related problem for Touretters. Someone else was talking about his Obsessive-Compulsive Disorder, how he couldn’t walk down the street without making sure his right foot always stepped over the cracks. Of course! That explained why it bothered me so much when the table wasn’t set just right — placemats perfectly straight, lined up with the edge of the table; plates perfectly centered, design right-side up; napkins folded up-and-down, not side-to-side, design right-side up; forks here, glasses there. How many times had my mother kicked me out of the kitchen because she was tired of me straightening up after her? I always balked at the lack of deliberateness with which people folded, stacked, or put things away. My constant question was, “Don’t they care?”

I went home that night feeling really good about myself. I had gained so many personal insights from the other people. When I got home, my mother asked me if I was feeling OK. I was feeling great! Then why, she wondered, were my tics so much worse than when I had left? It seems that at any gathering of Touretters, there is this contagious, almost electrical energy which seems to intensify tics. Some people go home from Tourette meetings or conventions with new tics they’d never had before. Some merely absorb the energy and do their usual tics with more gusto. For others it’s a matter of disinhibition, or the inability to suppress impulses. In everyday life there’s so much pressure for us to suppress tics; the accepting environment of a meeting or convention allows the Touretter to tic without inhibition.

On the surface, my life is still the same as it was before I was diagnosed with Tourette Syndrome. I still lose my place in a book while my eyes go wandering. I still interrupt my speech while my head shakes or my jaw snaps. People still wonder at my strange movements or attempt to “politely ignore” me, pretending not to notice. In many ways my tics are much worse than they used to be. The only thing that has changed — the single most important thing — is my attitude about myself. Just knowing why I tic has helped me make peace with myself. I no longer obsess over the imagined conspiracy. I’ve learned the secret.

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