Tourette’s Syndrome is a hereditary condition that causes acute, uncontrollable muscle spasm (ticcing) and uncontrollable verbal outbursts in more than 250,000 people in North America. It is one of the least known, least understood, most undiagnosed and misdiagnosed conditions in North America today. It affects all races and ethnicities. There is no known cure, though therapies and some medications have been known to lessen its affects. Some conditions lessen as people age and some worsen.
Here for the first time is a collection of short stories written by members of the Tourette’s community –Touretters- People living with it and their family members who support them. This collection was the idea of Chris Mason, who collected the stories and who also has Tourette’s. Many of the authors have chosen to remain anonymous. Sensitivity to TS has lagged behind the perception of those with other debilitating conditions. The stories are touching, powerful, maddening, and filled with enough lessons to begin to enlighten us all about Tourette’s Syndrome.
Read an excerpt:
With The Blink Of An Eye
I came into this world by way of c-section, as an eight pound baby boy, after my mom had endured twenty difficult hours of labor. The doctor who delivered me left a scar on my temple, when he accidentally squeezed the forceps that he used to pry me from my mother’s womb, too tightly. It is a mark that has not gone away. Neither have the two disorders that have plagued me for most of my life.
I had never heard of Tourette Syndrome when I was diagnosed at age twenty. I started having symptoms of it at the age of six. For the fourteen years in between I wondered what was wrong with me and why I wasn’t like other people. When I was diagnosed I now I knew why I shrugged my shoulders, blinked my eyes many times in a row over and over, swallowed, jutted my arms out to the sides, grinded my teeth, bit my fingernails so far down until they bled, bit the insides of my cheeks until they bled, cleared my throat, grunted, stuttered, scrunched up my face, coughed forcefully, etc. Tourettes was the reason. I didn’t want to do these things, but my mind made me.
I had never been very good at studying before, but I had always been able to when I really put my mind to it. During junior year that was even impossible. The first time I sat down at my desk to do homework that year I absolutely could not do it. It started with me becoming distracted by everything in and around my desk each time I sat down to do homework. I tried doing it at different times and in different parts of the house, but nothing worked.
About a month later I also began having horrible symptoms of Obsessive Compulsive Disorder. OCD first showed itself in me in the form of making me think about making lists and being obsessed with certain numbers. When it began, an idea would pop into my head. Then, I would spend the next two or three hours writing down everything I could think of that was related to that subject. If I started thinking about cars, for instance, I would get out a piece of paper and write down every make and model of every car I could think of. If I started thinking about professional basketball teams, I would jot the names of every team and players on them, until I couldn’t think of anymore. No topic was off limits. Whatever came into my mind would be written down on paper and consume my thoughts for hours.
Later on I became obsessed with numbers. I started counting up to whatever number was my new favorite each time I did a daily activity. Most people would do things, like brushing their hair, until they thought it looked good. I had to brush mine well past that. Even if my hair looked good, I had to continue on. I would get stuck on a number for months. Then, all of a sudden, I would become obsessed with another number for several months. The numbers were always odd and consisted of having the same number multiple times. The numbers 77, 111, and 333 were some of my favorites. If the number that I was stuck on was 111, for example, I would make sure I did every daily activity I did during that time, no less and no more than 111 times each time I did them. Things like brushing my teeth, brushing my hair, and running my hands through my hair while shampooing it, each had to be done exactly 111 times. It had to add up to exactly 111, or it didn’t feel right. If I ever miscounted I had to start over and count again. I knew that it wasn’t normal and that it would have sounded crazy to anyone I told, but I couldn’t help it. I didn’t know why I was doing these things, but I had to do them. My mind made me.
Halfway through that school year, after having had the horrible obsessive thoughts, where I made lists and obsessed over numbers, another variance of OCD appeared. Up until then I had either made lists or obsessed over numbers. I had done one or the other and had never done both of them at the same time. During the middle of the school year both of them combined to make to make my life a living hell. I would begin by getting a thought in my head, just like I had done before. I would then start making a list and I would not stop thinking about that topic until I had written down as many items as the number that I was obsessed with at the time. It was easy to think of more than the number I was obsessed with, especially when that number was low. When the number I was obsessed with was a high number and a topic that I did not know much about entered my brain, I was in deep trouble. Many times, when that happened, I would be up until the early morning hours, trying to think of enough things to write down on my paper. If I thought of them I would go to bed. If I couldn’t think of them I would stay up until I did, sometimes all night. If I just tried to forget about my list and go to sleep, thoughts about the list would overwhelm me. At that point I would have to get up out of bed and work on the list until I was finished or until it was time to go to school. There were many times, after staying up all night, where my brain would be so exhausted that it would just shut off. That was the only time I ever got a decent amount of sleep for three years straight. I would usually forget about making the lists while I was at school or when I was doing things that I enjoyed. I pretty much only made lists when I was bored, alone, or doing something I didn’t enjoy. I made lists and obsessed over numbers in the same way, every time I was in any of those three situations, every day for three years. I was constantly having obsessive thoughts, or thinking about having obsessive thoughts.
I am now taking medication for both disorders. I will probably be on medication for life. The medication gets rid of the tics, but it also has many side effects. I am constantly tired and groggy and I can’t think straight. The best way to describe being on this medication is that it is like having a bad hangover. I have had that hangover every second of every day for the past twenty-three years. When I tell people what it was like before I started taking medication and what my life is like now almost everyone tells me that it sounds like being on medication is worse than not being on it. Those people cannot possibly comprehend what it was like have thoughts and feelings of doing things I didn’t want to do and thinking about things I didn’t want to think about every waking second of every day. Unless those people have lived as I have lived and walked in my shoes there is no way they can come close to understanding what I have been through and what I go through every day.
Even though I have had a very hard life I still have hope. I have a lot of hobbies. I have taken singing lessons with a few different instructors and they have each told me that I show promise. I have also come up with a number of inventions, that I know have never been thought of before. I have been told promising things about many of them too. I have also written the lyrics to a number of songs, which have been recorded by a professional, although, not well-known, musician. I have also been told that I am good at writing stories and poetry.
Even if none of my hobbies ever make any money or if I never have a great job, I will be okay with the way my life has turned out. I have been a swim coach and swim instructor for over twenty years. That means that I have taught over two thousand children how to swim or swim better. I have been a volunteer soccer coach for twelve years, which means that I have taught over two hundred children how to play soccer or play it better. I may be being naïve, but that’s well over two thousand kids whose lives I have had a chance to influence, and teach things that they will always remember. I don’t care what anyone else thinks except me and I think that is priceless.