"Happy Easter Eve!" I yelled, jumping into bed for what seemed like the thousandth time, but was probably only the seventeenth. It was April 15, 1995 and I couldn't sleep, not because I was excited about what the Easter bunny might bring, but because I was stuck in a maddening routine: wash hands, turn bathroom lights on and off, jump into bed, yell this odd salutation, repeat. I'd been having a tough time of it as of late, but I think this was the night that we all knew something was really wrong.
I have Tourette Syndrome. Popular culture would have you believe that this means I involuntarily shout four letter words and other obscenities at the least socially acceptable times possible. While this may make for good slapstick, it's never been true of me, nor is it the case for the vast majority of Tourette's sufferers. Tourette Syndrome is characterized by chronic motor and vocal tics that can vary from essentially unnoticeable to nearly debilitating. Because the range of severity is so vast, it's hard to say exactly what percent of people suffer from Tourette's, but the current estimate is between 3-6 children out of 1,000 are affected by the disorder.
Incidence is measured in children because many with Tourette's show significant improvement in their late teens and early twenties, but try telling that to an 8-year-old who feels she has completely lost control of her body and mind. At that age, I thought the chance I'd ever be "normal" was just slightly lower than the chance I'd walk on the moon.
Let's go back to 1995. What had started with minor facial and vocal tics had quickly escalated. In hindsight, I'd shown signs much earlier -- a bout of obsessive hand washing as a toddler and "games" I played that involved not stepping on certain tiles on our kitchen floor. But it wasn't long after the Easter Eve incident that I was diagnosed. In some ways, the diagnosis came as a relief because at least we knew what we were dealing with. We knew that other people were affected by this disorder, and that many of them are able to control it quite successfully with medication.
People have often asked me what my tics feel like. The best way I can describe it is to compare them to a really bad itch that needs to be scratched. Can you avoid scratching it? Sure, but you can't think of anything else until you do. That isn't to say that it's impossible to suppress tics at important moments. Take internationally renowned soccer star Tim Howard, who has been outspoken about his struggle with Tourette Syndrome. He has said that the stress of a big game causes his tics to flare, but when an opposing striker approaches the goal, all of sudden he is in control of them. I've read stories of surgeons and pilots who can control their tics while in the operating room or in flight, and I believe it. At the peak of my struggle with Tourette's, I was especially self-conscious about my tics and struggled constantly to hide them. I remember in elementary school, I would go all day suppressing my tics as much as possible. I had always been teased, and I was terrified my peers might notice and use them as new ammunition. I would come home both physically and mentally exhausted, and with all of my power to resist depleted I could barely do anything but tic.
As if tics aren't enough, 86 percent of kids with Tourette's are diagnosed with at least one additional mental, behavioral or developmental disorder. Common co-disorders include Attention Deficit Disorder (ADD), Obsessive Compulsive Disorder (OCD), anxiety, depression and learning difficulties. I was blessed with both OCD and ADD, although I don't know that I demonstrated the latter more than any other kid growing up in the '90s. The OCD, however, played a compounding roll in my struggle with Tourette's. Whereas someone with only Tourette's has the "itch," the OCD causes me to imagine serious negative repercussions if I don't scratch it. Not every tic is this conscious, but the longer I try to put off a certain tic or routine, the more vividly I imagine whatever my biggest fear is at the time occurring as a result. One time I burnt myself on our wood stove because that was better than what would have happened if I hadn't touched my belly button to it. I still have the scar.
My Tourette's was the most severe between the ages of eight and eleven. During those years, there were times that it felt nearly debilitating. Nighttime was the hardest. I developed a bedtime ritual that seemed to get longer each night. At one point, this ritual included going outside to touch a specific tree in our yard, coming inside and jump-spinning three times before running and launching myself into my bed just the right way and yelling "good night!" If I didn't do it correctly the first time, I would have to do it all over again, sometimes half a dozen times. This could go on for hours, and sometimes I wouldn't get to sleep until well after 2:00 a.m. I distinctly remember nights I ran barefoot in the snowy New England winters to touch that tree... or trees, actually; my parents had recently divorced, and I had a tree at each house.
I began to struggle in school. Behavioral problems and lack of self-control are common in kids with Tourette's. My parents had many discussions with the small private school I was attending at the time about my disorder, but my teacher didn't know how to handle me and by fourth grade I was spending a good part of the school day sitting in the office. She tried at the start, but l think she came to resent the fact the tools that she had in her toolbox weren't working with me. Eventually, she began to be a bully, doing and saying things that she knew would rile me up. I remember one incident in particular when I was still trying desperately to keep everything a secret from my classmates. One of my tics at the time was spitting. While it's actually a fairly common tic in Tourette's patients, it was the one that absolutely mortified me. Little girls aren't supposed to spit. We were on the annual class trip to climb Mount Monadnock, a day I looked forward to all year. I was making my way up the mountain with a group of friends when my teacher came up behind us and said so the whole group could hear, "Johanna, I can tell exactly where you've been. There's a path of trail mix and spit!" Everyone laughed except me. Eventually, I had to leave that school.
My parents have always fought for me in every way imaginable, but there were times that even they didn't know how to handle me. I think they struggled with how much leeway to give me on account of my Tourette's. "What can she control, and what can't she?" was always the question on their minds. At times I resented the special treatment from my parents and teachers, as it was just further proof that I wasn't normal.
Academically, I always excelled. The only assignment I remember really struggling with was a simple diary. The Journal. Each night, I would sit for hours writing each and every detail of my day; what I ate, said and thought at each moment. Leaving anything out was not an option. By the end of each entry, my hands ached and my handwriting had noticeably declined. Even today, I think it would be painful to look back at that journal.
After my diagnosis, my parents took me to a slew of specialists. Eventually we did find a cocktail of drugs that allowed me to get my tics under control, but I came to resent those visits. I think one of the reasons I refuse to go to the doctor's office now is because I spent so much time there as a child. The one visit I never resented was my weekly session with my counselor Marti. Marti loved me, and she did it with the tough love I desperately needed at that time. She taught me to think of the voice in my head that was telling me what to do as "the Bully." In my mind, he looked like the Genie from Aladdin, except he was a bad guy. Villainizing that voice helped me talk back to it and say I wasn't going to take it. I credit Marti greatly with making some of those toughest years manageable.
Luckily, through some combination of age and medication, things improved drastically by high school. My detentions subsided and I made friends. Eventually I graduated and got into a good college. It was my Junior year of college that I decided I didn't want to rely on medication any more. I remember how scary it was to stop taking it. What if all the progress I made was lost and suddenly I became that out of control kid again? Luckily, that didn't happen. In fact, the first full semester after going cold turkey I got a 4.0 GPA for the first time in my life. This was such a proud moment for me, as it was finally an achievement I could take full credit for without the "crutch" of meds or special treatment.
Most of my friends have no idea I have Tourette's, and when it does come up it's always met with surprise. This isn't because my tics have gone away completely. In fact, as I sit writing this, they're flaring up. I've stood up and sat back down three times and writing about throat clearing and eye-blinking is causing me to do it. Sometimes I still touch my belly button or get up and leave the room before I eat or go to sleep. But I am in control to the point that people rarely notice. These days I no longer see my Tourette's as a bully, but as something that has made me stronger. I've always believed that everybody has their challenges to face, this just happened to be mine.
Today I'm happily married, have a good job and a loving network of friends. My life is as normal as I would ever want life to be. But my biggest fear at age 10 wasn't the dark, or monsters under my bed. My biggest fear was that I would never live a normal life. I wish someone could have told that scared little girl that not only would she grow up to be functional, she would grow up to be successful. I wish someone could have told her that she would meet a man who didn't just love her in spite of her tics, but who actually found them cute and charming. I wish someone could have told her that she would make friends, lots of them, and that they would love her because of her quirks. But the thing is, I don't think she would have believed it. If my story can help just one little girl or boy believe that all these things will be true for them too, it was a story worth telling.
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