Front of the Class
How Tourette Syndrome Made Me the Teacher I Never Had
By Brad Cohen, Lisa Wysocky
St. Martin's Press Copyright © 2008 Bradley Richard Cohen and Felicia Wysocky
All rights reserved.
A "Playable Identity"
I grew up in st. Louis, Missouri, home of the Arch and home of Cardinals baseball. My parents, Norman and Ellen, divorced very early in my life — so early, in fact, that unlike many children, I was far too young to think that the divorce had anything to do with me. Of course it didn't. By the time I was old enough to even realize that my parents were divorced, that's just the way life was.
To say that I was a very active kid is a complete understatement. At the mall, my younger brother, Jeff, and I were the kids who tore through clothing racks and down the aisles, and generally wore our mother out with our boyhood energy. But the difference between Jeff and me was a question of intensity. Jeff, eighteen months younger, was a typical rambunctious boy — the kind who might be a pain to deal with sometimes, but who was otherwise like most boys.
And me? My energy levels were more manic. My fun seeking was much more frantic than Jeff's, and my excitability level was much higher. By the time I reached second grade, my relentless hyperactivity was understandably a huge concern at home. My mother realized that something was going on and that it was a disturbance deeper and stronger than anything behind Jeff's youthful outbursts.
Back then, Internet access was still a few years away, and there wasn't much information available to answer her questions-or silence her fears. At that time, social resources for conditions like mine were so few and far between that as my symptoms grew deeper, my mother and brother found themselves alone in the house with a virtual stranger. He looked like me, but he was entering all of our lives in staccato bursts of behavior that I couldn't predict, and over which I had very little control. I, like many people with Tourette syndrome, have a short attention span and some mild obsessive behaviors. (Many with Tourette syndrome also have attention deficit disorder, ADD; attention deficit hyperactivity disorder, ADHD; or obsessive-compulsive disorder, OCD.) And so along with the beginnings of facial twitches and rebellious behaviors came the attention span of a gnat.
We all stumbled along, hoping for the best.
My father, who was not a daily presence in our lives, paid just enough attention to my outbursts to dismiss me as an irritating kind of kid. This prevented him from asking himself some hard questions about what was going on. I know my emerging behaviors both embarrassed and disappointed him. I was a subpar version of that idealized firstborn son, the one whose fantasy image lurked in the back of his, and every father's, mind. The irritation that he felt toward me — and that sometimes turned to raging anger — prevented him from having to endure any intimacy with his baffling boy. He could always distance himself by falling back on the familiar pattern of being in a snit over my latest outburst.
Looking back from an adult perspective, I am sure my father also had some feelings of helplessness. Here he was, seeing us only on weekends and trying to establish a new kind of workable relationship with his ex-wife. Some people just ignore what they don't understand and can't fix. Later, I found out that my dad was following advice he had received from several doctors. They told him that my problems were behavioral and that I needed more discipline. I think he has always regretted how he reacted, but, unfortunately, at that point in his life it was the only way my dad knew how to cope.
And this phase was only the lead-in to my problems. The real beginning was at summer camp, before starting the fourth grade. Each year Jeff and I spent at least a month at Camp Sabra, which was about two hours west of St. Louis, near Lake of the Ozarks. I loved it there because I was able to run and jump and swim off a lot of my excess energy without being yelled at. I loved the organized sports, the camaraderie with the other kids, the counselors — everything. But this year, I developed a strange new habit of clearing my throat every few seconds, all day long. Most of the time I had no awareness of doing it.
Naturally, the other kids noticed. But since no one — including my family and me––had ever heard of Tourette syndrome, nothing much was made of my little habit. Mostly the kids thought it was funny, even though as the season wore on, my frequent throat clearing became a near-constant grinding in the back of my throat.
During closing ceremonies at the end of the summer, my counselor gave me an improvised "Froggy Award" for having so amused everyone with my funny noises all season. I wasn't upset by the tongue-in-cheek award or by the hand-lettered paper certificate. Up to that point, my vocal tics had developed only to the extent of throat clearing and an accompanying assortment of odd grunts. I could usually get away with letting people assume I was some upstart kid who made funny little noises as a running joke — and I was happy to let them think so.
Inside, though, my strange behavior was so upsetting and confusing that I did my best not to deal with it at all. So, despite whatever implied mockery may have been behind the Froggy Award, I clearly remember stepping forward to accept it without feeling any awkwardness. In fact, I beamed like any class clown getting reinforcement for his antics. The award and the positive attention helped me to believe — for a little while––that I might be able to bury the weird little behaviors, or hide behind the appearance of an eccentric joker.
Sure, a reputation like that draws a lot of heat from authority figures, but an eccentric joker is an identity you can play when out in the world. People might regard you with annoyance, but they don't feel the need to stare. And when they do look at you, they don't see a freak, they see a playable identity — meaning that, for a little while, I was able to pull it off. Nothing wrong with me, folks — just a funny guy who likes to make funny noises, okay?
In the years since, people have asked if I was hurt by the implied ridicule of receiving such an award. But at that time, a source of wisdom deeper than I could understand was already guiding me to ignore any jabs and to choose instead to accept the element of honor that was there.
I can't take credit for that wise (or lucky) choice, but I've certainly learned how to employ it since. It's amazing to me, whether I'm considering my own life or someone else's, how often I see examples of people reacting with anger or pain to a personal slight without being able to realize that they are in a situation in which they have another choice: they can decide that the comment or behavior they consider hurtful might also be legitimately classified as a flattering piece of attention.
No, it won't always work. I just know that my life and my career add up to concrete proof that it often can work. When we decide to experience someone's attention as a positive sign, that can lead to positive outcomes.
With summer over, the dreaded new school year began, with its endless hours of enforced quiet time and its low tolerance for funny, smart-mouthed guys like me who "insist on constantly drawing attention to themselves with subversive little sound effects." That's a direct quote from one of my former teachers.
Have I mentioned how much I hated school? I was not a good student then. I didn't have the attention span to stay quiet very long, so teachers were constantly criticizing me. And, as in the book Lord of the Flies, the kids in my school turned on the one child who was different from all the rest. They taunted me, beat me up when they could, and ignored me — when a simple, friendly smile would have gone a very long way.
And these were only the early days of the emerging symptoms. The intruder had been sleeping in the basement of my life, but it was waking up fast. Soon everything was going to be much worse.
On top of my emerging tics, we had recently moved and I was starting a new school, Green Trails Elementary. It was only about eight miles away from our old house, but it meant a new place with new kids and new teachers and no familiarity with anything at all. I was very stressed over both the move and the new school.
To compound these problems, in addition to clearing my throat I had also developed a habit of knocking my knee against the door of the car when I was a passenger. Of course that kind of behavior drove everyone nuts. Who could blame them? And when I insisted, "I can't help it," it's easy to see how people would wonder just what the heck I meant by that. Was I actually claiming that I "couldn't help" being an annoying jerk?
The knee-knocking-in-the-car behavior provoked my father to the point that he would lose his temper and actually hit me to make me stop. The shock of taking a slap, and the fear of getting another, was enough to halt my range of tics for a short while. But the problem was that the tics never stopped for long. Even when I knew I was going to get smacked for it, I found myself repeating the behavior. Remember, Tourette's includes uncontrollable neurological behaviors. Telling people with Tourette's to stop a behavior is like ordering someone with allergies not to sneeze.
And so the joker identity quickly became a lot less playable. No one was laughing anymore, particularly after I added yet a third tic to my repertoire, a piercing woop or "bark" that was to become my calling card. Imagine sitting in a classroom next to someone who, several times a minute, emits loud noises such as "RAH ... rah ... rah" or "wah ... WAH." Throw an occasional "WOOP" in there and a continual set of facial spasms, and you are sitting next to me. At times my noises were much louder than they are now, and so during many of my school years I must have been nearly shouting.
The bark appeared to arrive on its own, fully formed as a tic. It seemed to me that one day I wasn't making that sound, and the next day I was. As with my throat clearing, I barked automatically and hardly gave it a thought. It played well enough around the house, but out in public, barking got me noticed. People's amusement quotient isn't at its best when they're confronted with a kid making loud sounds in public. After two or three good yelps in the wrong setting, I found it pretty hard to pass them off as being some sort of goofy sounds that I liked to make just for fun.
Additionally, I was running around like a maniac, so my mother took me to the doctor. He put me on Dexedrine, which was commonly prescribed at that time for ADD and ADHD. I was never diagnosed with ADD or ADHD, but stimulants such as Dexedrine reduced my hyperactivity. Over the next few years, as my behavior progressively worsened, my medication dosages became progressively higher. At the time both my mother and my doctor thought that was the correct treatment for my hyper-activity. Later we would learn it was not necessarily so.
My — and Jeff's — extraordinarily high activity level was one of the reasons for our move to the new house and school. Mom thought we all needed to have a fresh start, so she moved us to a new neighborhood that still had a number of Jewish families and was still reasonably close to a dynamic Jewish Community Center (JCC). My brother, Jeff, loved our new house, our new school, and the new kids to make friends with. Although Jeff is a year and a half younger than I, even at that early stage his greater social ability was a sign of the growing differences between us.
I found the move highly stressful. Adapting to foreign situations had become one of my weakest points. The out-of-control changes inside filled me with a strong distaste for changes elsewhere in my life. Additionally, I kept my fears bottled up inside, which added to my stress and to my tics. I didn't like to share my feelings, and the eventual emotional toll this took was huge. Also, as I wasn't yet able to predict how bad my tics might become in any given situation, going out in public became an increasingly dicey proposition.
With social disaster always lurking outside the door, I craved routine in every other area of my life. The safe predictability of home helped me retain some small feeling of control. But even inside our new home I was not fully comfortable.
For example, my mother's bedroom was on the first floor, while the rooms Jeff and I occupied were upstairs. In our old home, all the bedrooms had been together on the second floor. That difference alone set off my anxiety. I refused to sleep in my room upstairs. Instead, I dragged my pillow and bedspread downstairs and spent every night on the couch in our woodpaneled den, using the glow of the television to ease my fear of the dark. It became important to me to have a night-light of some kind, since darkness promoted uncertainty and uncertainty equaled anxiety. Slowly, my daily and nightly routines became more and more focused on clinging to the familiar and avoiding the unpredictable.
My behavior created a vaguely ominous backdrop. If anyone other than our mother — any child-care professional, for instance — was charged with taking care of us for very long, he or she soon quit. It usually took only a single evening to scare off a baby-sitter. My mother could barely control Jeff's hyperactive behavior, and she accepted the fact that sometimes no one could control mine. My behavior had reached the point that some people, baby-sitters included, found it frightening.
I must admit that at least some of our behavior with the baby-sitters was intentional. Like children being taught by a substitute teacher, we gave our sitters a hard time just because we could. Jeff and I were mischievous boys who enjoyed the chaos we were causing. It was fun to tip over furniture and throw things around the room! But I admit that it often got out of control. Neither of us knew where to draw the line. Our hyper states were fueled by increasing activity, and I can easily see how Jeff and I together were a bit much.
My grandmother Dorothy provided Mom's only respite. She was my mother's mother, recently widowed, and willing to employ her free time in helping Mom out, even on short notice. We called her Dodo, and we adored her. Sometimes Jeff and I spent the night in her little apartment. She was completely accepting of my energy level and my funny noises, even if her downstairs neighbor was not. Every once in a while, he banged on the air-conditioner vent with a broom to get us to quiet down. Regrettably, tics do not care about the time of day or night, or whether the neighbors are angry about the noise.
My childhood was not all doom and gloom, however. A real ray of sunshine came into my life when Mom and Dad chipped in and bought me a terrific green bicycle. I discovered a new source of freedom outdoors — a boy on a bike can speed all over the neighborhood, making all the noises he wants, and no one thinks a thing of it! When I was riding my bike, that terrible, growing conspicuousness that was beginning to dog me everywhere dissolved in the wind and the motion and the exertion of riding.
I named my bike the Green Dragon, and to me its speed was unmatched. I challenged other kids to race, and I usually won. Luckily, the Green Dragon was as resilient as it was fast. It survived two major accidents, one when I propelled it head-on into a brick wall and another when I flipped over a sewage drain and had to be taken to the hospital by ambulance. I got a concussion, but the Green Dragon was unscathed.
The Green Dragon was more than an extension of me. It was a symbol of my physical freedom; it was my disguise. When I was riding the Green Dragon, my condition was invisible. That bike was my most loyal friend — and a real protector. On the Green Dragon, I forgot about my tics and all the problems they were causing for me and my family. Speeding up and down the hills around our neighborhood with the wind in my face, I was like any normal kid. I wished those hills would go on forever.
Since I was in constant motion all day long, Mom signed Jeff and me up for after-school programs at the local JCC. Her thoughts about an active center and organized activities proved to be right. Jeff and I participated in all kinds of sports there,depending on the season: baseball, floor hockey, basketball, soccer. We both loved the place; we could stay all weekend and be thoroughly entertained. I even loved keeping score for the adult intramural basketball games ... everyone yells at ball games.
Optimistic people often tried to reassure Mom that both my brother and I were nothing more than healthy, active boys. And with Jeff, it was true. But it was also true that my behavior was becoming progressively worse, and Mom was having a harder time keeping me in line.
It wasn't just a matter of little behavioral tics that I couldn't suppress; I was having a harder time keeping myself "in line" all the way around. Fear of my mother's displeasure wasn't nearly as bad as the fear that I was losing the ability to control all aspects of my behavior. Whatever the cause, it was becoming extraordinarily difficult for me to get along with other people. Most adults saw me as an overly rebellious, willful kid. But I struggled with the creeping suspicion that my willpower, the basic ability to control myself, was dissolving within me. My behavior had become so bad that it terrified even me. (Continues...)
Excerpted from Front of the Class by Brad Cohen, Lisa Wysocky. Copyright © 2008 Bradley Richard Cohen and Felicia Wysocky. Excerpted by permission of St. Martin's Press.
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