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Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities
Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities



The Gift of Tourette

Rachel H.

Rachel was seventeen years old and a senior in high school when her personal story about living with Tourette syndrome was printed in Tourette Perspectives, the newsletter of the Massachusetts Chapter of the Tourette Syndrome Association. I read it several years later when I was looking for a young person with Tourette syndrome to contribute to this anthology. Rachel’s story appears here, along with an introduction that she wrote especially for this publication when she was twenty.

"I was diagnosed with Tourette syndrome when I was eight years old. This was the first sign of my having any neurological disorders, but during my early elementary school years, as my frustration grew with school work, it became apparent that I also suffered from some learning disabilities. These were soon diagnosed as visual-spatial disabilities and some attention problems. For years, the Tourette and the LDs seemed to be my only neurological problems, and for me they were enough. Fortunately, when I entered high school, my Tourette lessened as I learned to control it with some help from medication. I also learned to compensate for my LDs, setting aside twice the time most students would need for every school assignment to ensure that my attention difficulties would not taint my academics.

"As these disabilities became controllable, the next wave of disabilities hit. I began to suffer from chemical depression, and with it, obsessive compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD) took their place as my newest menacing forces. I noticed as I got depressed (which actually I didn’t even know was depression until the psychiatrist diagnosed me; I just thought I was going crazy), I started to have many more obsessions, and I became extremely hyperactive and had to keep leaving the classroom. Haunted by the rituals and phrases that continuously ran through my head and my constant need to be physically moving, I was treated for my depression. With the medication, the OCD virtually disappeared, but the ADHD remained, stronger than before.

"I have taught myself how to control the ADHD, coming up with healthy strategies for incorporating hyperactivity into my life. Basically what I do is use it to my advantage. I am constantly having to move around, so I try to accomplish things while I am bouncing off the walls. Socially, I hide the hyperactivity under a mask of outgoingness. I used to be very quiet, but now I appear sociable; I am always talking and moving, and I have found that people just attribute my behavior to a personality rather than a disorder. And that works for me. Also, I make sure that each professor knows my condition and understands that at times I might have to leave a lecture if I have too much distracting, pent-up energy. Usually I don’t have to leave, but knowing that option is there helps immensely.

"I’m presently a student at Barnard College, where I am majoring in biopsychology and hope to pursue a career in medicine. Though my disabilities are still present, none of them control me as much as I control them. My learning disabilities are the only disabilities that never lessened in strength, but I have learned to compensate. I have made dean’s list and am doing well in my classes despite the fact that my spelling and pronunciation refuse to graduate from the third-grade level.

"In the future, I hope to understand medically what causes my disorders and to teach people to understand that these disabilities are nothing to be embarrassed about. They shouldn’t be treated as wrong behavior but simply a way of acting that is different from the mainstream."

As I type this article, a disturbing feeling washes over me, a feeling that in writing this I am a hypocrite. All my life I have met people who tell me with patronizing arrogance, “Everyone has problems, so quit this self-pity and get over it!” And all my life I have resented these people, believing they have no right to pass judgment on me when they do not understand my pain. Yet here I am, fingers on the keyboard, with an unsettling feeling that I am repeating the words I despise. But hopefully the story I share, as one person with Tourette to others with Tourette, might be more helpful than the words that were told to me.

I was eight when I was diagnosed with Tourette syndrome. At that age I did not want to deal with a disorder. At the time, my life was pretty smooth. I owned as many Barbies as my friends, and though void of the Barbie motor home, I did have a Mattel swing set. I was just like my friends, and I, the idealist, believed it could stay that way. But soon my Tourette became more pronounced and I had to deal with the questions we all want to avoid: “Why do you wrinkle your nose? Why do you make clucking noises?” In an effort to avoid these questions, I avoided people. I figured if no one noticed me, no one would notice my Tourette. Yet this withdrawn behavior made me even more different.

By seventh grade I was absolutely miserable. I had no friends. In a school of conformity, I could not conform, and for the first time, having a learning disability began to affect my grades and performance. I was filled with frustration when I was penalized for “careless errors.” But I still would not accept extra help, for accepting extra help would be accepting that I was different. And it was this resistance to believing that I truly was not like my peers that caused my improvement to come to a standstill. It was hard to come to terms with and accept my Tourette, but once I did, I completed the first step to subduing my Tourette.

Through minimal medication, we were able to lower the occurrence of my tics, leaving me with a manageable amount. Then I actually had to learn to control my Tourette. That was the hardest part, for it required me to know myself so well that I could anticipate all my actions in almost all situations and thus be prepared in any situation. I first tried to hold in my tics until I could let them out when I was in private. If I could not hold them in, I tried methods such as substitution. When I knew a disruptive or embarrassing tic was coming, I would try to channel that urge into a less harmful one. If that failed, I would apply other strategies. If I found that I needed to release my tics, or that my OCD and ADHD were becoming disruptive, I was allowed to calmly leave the classroom. Because of my ADD, completing a one-hour assignment would take two hours, but instead of becoming frustrated when I found my attention span was nonexistent, I would walk around the room a few times or sit down and play a piece on the piano, and after a minute or so, I was recomposed. I would wear loose clothing to cover up some of the more obvious physical tics. Because I recognized that my Tourette worsened when I was sick or stressed, I tried to cut unnecessary stress out of my life. And because I am the best judge of how I am feeling, my neurologist trusted me to raise my medication by certain amounts when I deemed it necessary and lower it when I felt better. And through all this self-awareness, I developed one of the most important characteristics: acceptance of oneself.

I finally understood and accepted the fact that I was different and I could not change that. I was born different, but I was not born wrong. There is nothing unnatural about having Tourette syndrome. So I blink my eyes twice as fast as everyone else. Where does it say that is wrong? It is a different way of behaving but not a wrong one. Take the example of left-handed people. Lefties are also in the minority, as are we. Lefties write differently, as we act differently. There are strikes against left-handers that the right-hander does not have. I know, as I too have struggled to keep my papers balanced on a right-handed desk and fight against right-handed appliances everywhere. Yet though it may be difficult to be a left-hander, we do not consider a left-handed trait negative, and we should not consider Tourette to be a negative trait. As I am not ashamed to be one of the few chosen to write with the opposite hand, I am also not ashamed to be one of the chosen to have developed and tamed Tourette.

Through Tourette, I have gained self-acceptance, a quality that is alien to most teenagers. This acceptance of oneself can only be gained by experience, and very few are given the opportunity to learn acceptance. I consider myself lucky: I was given this opportunity quite early. We all were. We were given the chance to learn and grow long before others. Possibly, if I had not been handed the gift of Tourette, I would not have had the power to be unaffected by peer pressure. Possibly, now I would be drinking and doing drugs, trying to gain the approval of people who did not even have the approval of themselves. And possibly, if I did not have the experience of dealing with Tourette, I might not have been well equipped to handle the sudden onset of depression in the beginning of my junior year. But I survived the ordeal. And I am not naive. I know there are more ordeals to come, but maybe with this weapon under my belt I will be equipped to deal with the obstacles of life a bit better. Who would have thought that something so “negative” as Tourette would have become such a positive survival asset?

Tourette is not a disease, a curse, or a punishment for something you did in a past life. Though it might not be something you want to tell everyone, it also is not something you should be ashamed of. If other people do not understand, it is their problem not yours. They are probably too unsure of themselves to try to understand foreign behavior. You should not try to pretend Tourette isn’t a part of you. It will always be with you and so the best thing you can do is to face it and accept it. Tourette is an obstacle, but it does not have to be a boulder. You can let it have power over you or you can be empowered by it. If you choose to face it and fight it, it will be tough but it will also be rewarding.

For more information about the disabilities discussed in this story, please visit the Resource Links page.




spacerLinda Hillyer, compiler and editor of Listen to Our Stories
logo art by Adiyana Paramita
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