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Life with Tourette Syndrome, part 1

April 2, 2009

Continuing my discussion of disability, I’d like to share an award-winning essay I wrote some years ago about my experience with Tourette Syndrome. Because of its length, I will be posting this in two parts, so be sure to come back next week for the second half.



I can remember sitting in my third grade class looking around the room at the other students and marveling at how still their faces were. It seemed that everyone I met — my classmates, my teachers, people in the street, people in stores — had very still faces. Nobody scrunched their noses. Nobody blinked really hard. Nobody poked their tongues into their lower lips. I seemed to be the only one who did. I was different, and I didn’t know why. I felt like a freak. My parents didn’t understand my little “twitches” either. However, because they usually weren’t so bad, we didn’t pay too much attention to them. Looking back, I’m grateful that the other kids never teased me about it. This “it,” which we wouldn’t know anything about until years later, was Tourette Syndrome, a neurological condition which expressed itself as a bundle of nervous twitches. My mother tells me I was about seven or eight when the symptoms started sneaking up on me, but I cannot remember a time in my life when I wasn’t twitchy.

One night, I came crying to my mother because my twitches were so bad I couldn’t get to sleep. “Make it stop! Make it stop!” I sobbed as she held me in her arms. It was a paradox of the most perplexing order. I was the one making these movements, consciously, and yet I couldn’t help but do it. I just had this squirrelly feeling inside of me that wouldn’t let me be still. If I tried not to give in, there was this explosive build-up inside as though I were holding my breath. The longer I tried to hold off, the stronger the urge became and the more agitated I became. It was a vicious circle.

Later that month my mom took me to see a neurologist, but he didn’t know what the problem was either. After a while, my twitches eased up, but they never really went away, and I still wondered how other people managed to keep their faces so still. What was their secret?

I remember one time when I was in the fourth grade, and the teacher was giving the class our math lesson. Five people were doing problems on the chalkboard, including a boy named Jason, who was poor at math. The teacher reviewed his work for the whole class, confirming that he had gotten the right answer. Surprised, Jason jerked his head in a double-take. Suddenly, I had this urge to mimic him, and I, too, jerked my head. After a while, I couldn’t stop doing it and the head-jerk was added to my repertoire of twitches. I later learned that in neurology, the act of mimicking another’s actions is called echopraxia. For Touretters like me, whose tics (what I had called “twitches”) are highly suggestible, it is easy to pick up a new tic absolutely anywhere. To this day I still jerk my head.

Still ignorant about the cause of my condition, I had made a few observations about my tics that I tried to put to use. I looked back on all my dreams and couldn’t remember ticcing in them. I noticed that I didn’t start ticcing right away after I woke up. I also noticed that my tics were like those ads for Lay’s potato chips: once I got started I just couldn’t stop. So I resolved to make a conscious effort not to tic. When I got out of bed in the morning, I willed myself to be still. It almost worked for a few minutes, but eventually that urge crept up on me like a mosquito diving in for the kill. And just like a mosquito bite — you can theoretically ignore it and let the itch drive you crazy — I could refuse to submit to the tic-urge only to let it stay on my mind, consume my thoughts, envelop my entire consciousness. It didn’t take me long to decide “enough was enough.” I would give in to the urge and tic.

My dad, a psychiatric social worker, had all sorts of answers over the following years. Maybe I was just feeling stressed and wasn’t handling it well. He taught me some relaxation techniques, which did relax me, but the effects didn’t last very long beyond the actual exercises. He suggested that my tics were psychological, that I didn’t feel in control of my life situation and that this was my way of expressing my perceived lack of control, that I could stop if I really wanted to. My family and I have since learned that, although stress tends to make symptoms worse and relaxation or concentration on an activity tends to ease symptoms, these factors do not play a role in causing Tourette symptoms.

In my last year of high school, my twitches made an incredible resurgence. My wrist was flicking so constantly I couldn’t take notes. My eyes were rolling around so much I kept losing my place while reading. To make matters worse, although I was normally a straight-A student, I was nearly flunking two of my classes. My mother took me to see another neurologist. This doctor also did not know what my problem was, but she gave me some medications, haloperidol and clonidine, to help control my tics. Although the medications did decrease my tics by about half, they also produced some unpleasant side effects. I’m not usually a morning person by nature, but as the day wears on I generally find myself wide awake. One day, however, after taking my medications and going off to school, I found myself becoming more and more drowsy until I dragged myself into third period French class, slumped into my seat, and jumped out of my skin when the fourth period bell rang.

I was almost 18 and about to enter the University of Michigan-Dearborn as a freshman when I went to see another neurologist. This doctor was different. It was as though he could see right inside me — he knew exactly the sensations I had been trying so hard to explain to my mother for years. He asked me if I had these feelings inside that made me want to tic. Yes! He asked me if I was able to hold back on my tics for a moment. Yes! He asked me if trying to do that for too long drove me nuts. Yes! Did I ever make any kind of vocalization? Well, yes, I had this little squeak in the back of my throat, even though you really couldn’t hear it. I was ecstatic. Somebody finally understood me. Even better, he gave this thing a name: Tourette Syndrome.

Tourette Syndrome was a documented condition. I wasn’t a freak. I wasn’t crazy. This was an epiphany, a three-ton weight lifted off my shoulders. All those people with their still faces — it wasn’t a talent of theirs, hidden from me as part of some vast conspiracy. It was a problem of mine. I wasn’t crazy.

2 Comments leave one →
  1. Jaelyn permalink
    April 2, 2009 3:50 pm

    That was always the thing that got me most about being transsexual: the whole, “Why don’t you just stop?” attitude I got from nearly everyone around me, as if were something I was *choosing* to do. The last time I heard it was night before last. That attitude still makes me angry. Nobody says that to cancer patients. I’ll be the Alzheimer folks hear it a lot, tho. It’s what I consider to be the “embarrassment factor.” The more embarrassing a condition is, the more people will blame you and demand that you just stop, no matter how impossible that may be. Anyway. Looking forward to the rest.

  2. Jill permalink
    April 4, 2009 1:15 pm

    Get that a lot with being overweight, too. “If you can afford to eat, you can afford a gym membership.” Well, next time the closest gym to me offers a $1 membership, then I’ll join.

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