Living with Tourette Syndrome
I don’t like having Tourette’s; it’s disturbing not to have control over my body. I used to imagine that there was a demented little puppeteer hiding in the back of my mind, pulling me this way and that. I would see every day as a battle with my Tourette’s. Coming to terms with my Tourette’s is a very personal process that I struggle with every day. However, I am not alone in this struggle.
It is currently estimated that between 31 and 156 children out of 1000 have the disorder. There are many medical definitions of Tourette syndrome in dry scientific journals, but here’s my definition: Tourette’s makes a person do weird stuff. This weird stuff involves a wide range of activities such as repeatedly clearing the throat, cursing, shouting, or jumping up and down. And here’s the kicker: Nobody really knows what causes Tourette syndrome. In the old days people were thought to be possessed by the devil, but now theories vary from genetic links to dopaminergic pathways to post-infectious autoimmune mechanisms, and a whole bunch of other words that I don’t understand.
Since there is no agreed-upon cause of Tourette’s, there is no truly effective treatment. Medication can reduce tic for some, but the side effects can often be just as debilitating as the symptoms themselves. The severity of symptoms varies greatly from person to person. I have a relatively mild case; I will have roughly six to seven sets of tics a day. Other cases are much more severe, such as repetitive tics throughout the entire day.
The psychological impact of very severe symptoms can be devastating. A girl in my hometown almost flunked out of school because she could hardly force herself to go. She couldn’t handle suppressing her tics all day long, and she was too uncomfortable to have them in front of classmates. I know a man who decided that he would never have children because of the possibility that they might have Tourette’s.
I have been very fortunate in this aspect. I developed symptoms rather late compared to most cases. I was already in high school when my symptoms became noticeable, and I already had accumulated a large group of girlfriends and the confidence that such acceptance brought me.
I was diagnosed with Tourette syndrome three years ago, but I’ve shown symptoms for about seven. At first I wasn’t too worried about my tics; I assumed they would just go away. And when they didn’t go away I tried to ignore them rather than deal with the fact that I might have a medical problem. During my freshman year of high school, teachers started to question the sudden movements I had in class. My friends reassured them that I just had “big chills,” which was the language I used to describe them at the time. I still haven’t figured out what to call the unexpected, unexplained movements and vocalizations that sometimes take control of my body. When I was diagnosed I learned that the appropriate vernacular is tics, but this word seems too small, reminds me too much of the hands on a clock rhythmically tick, tick, ticking. My tics are irregular, sometimes jerking lunging, or writhing my small body this way or that.
My symptoms go through phases. I explain myself the way one might explain a two-year-old’s acting out. “I’ve been meowing lately,” I say to a store clerk or a classmate who lances over at me. The first distinct phase I remember, before I was diagnosed, was that my right arm would jerk up and down as if I were puppet on strings. Many times my arm would connect with a wall behind me. For that period of my life my hand was always decorated with a smattering of bruises. This was painful, and it was also scary. Was I crazy? Why was I doing this? Although I cried when I was officially diagnosed with Tourette syndrome, my heart sighed in relief because I finally had a name for my disorder.
My phases have varied greatly. I had a phase where I said, “oh my goodness,” and one where I shouted, “FFFFUUUU!” only completing the triumphant “CK!” in the company of loved ones. My current phase involves meowing, sometimes a quiet little “mew,” sometimes an angry, loud “MEOW!” People have told me that it’s cute. I think that’s a compliment, but I’m never sure of the appropriate response. “Um, thanks, I like your shirt?” My boyfriend has even told me that I think it’s sexy.
My Tourette’s isn’t really cute. It can be obtrusive and even scary. Lately I’ve been lunging at people fists clenched, sometimes accentuating this movement with a “POW!” or even worse “Pound you!” However, I haven’t given over my body completely that that little puppeteer. I can channel my Tourette’s. Most of the time in public I meow quietly or raise my hand to my face quickly and pretend to brush my hair away. My very un-cue and un-sexy Tourette’s comes out when I’m around people I’m comfortable with. So I only hit those who will love me anyway. Actually, I rarely hit anybody, but I think even my little fist stopping just inches in front of people’s faces makes them uncomfortable.
I am uncomfortable with these movements too. What do they say about me? Am I secretly violent and hateful? Do I have a deep down desire to “pound” people that is manifested in my Tourette’s? If this is true, then do I also secretly want to be a cat? I don’t know the answers to these questions, and I probably never will.
But through Tourette’s I learn more about myself. I have learned to be more secure regardless of whether I am having tics or expressing a different view than others. And while I have come to accept myself with all the meows and shouts, I have learned to accept others along with their idiosyncrasies. I don’t give in to my insecurities about my Tourette’s. I go on with my life and enjoy it as well. Tourette’s has helped to shape me but has not taken me over. I am in the process of learning how to work with, rather than against, my Tourette’s. I am slowly trying to crawl deep within my mind, find that elusive little puppeteer, and shake her hand.
