Circ a 2005
When Brad Cohen began compulsively clearing his throat at age nine, his camp counselor gave him the nickname Froggy. When he progressed to a loud whoop or bark several times a minute, he was no longer viewed so affectionately. It would be several years before Cohen discovered he had Tourette syndrome, a neurological disorder that causes uncontrollable vocal and motor tics. Yet his teachers and classmates still thought he was purposefully misbehaving. He found himself ridiculed, mocked, shunned, punished and ejected from classrooms, movies and restaurants.
Determined to provide something better for other kids, Cohen decided he would become the positive and accepting teacher he’d always wanted. After college, he went through 25 interviews in the Atlanta public school district before finding an elementary school willing to give him a chance in the classroom. He went on to become one of the best-loved teachers in his school and to win Georgia’s First Class Teacher of the Year Award. In Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had, Cohen shares his experience with Tourette’s, his philosophy of unwavering determination, and the choices that have shaped his satisfying and successful life.
Following is an excerpt from Front of the Class’ second chapter, “Out of Control.”
When I was in second grade, my hyperactivity and my tics were increasing, so my mother turned to a professional to examine my feelings about the divorce. She dutifully took me to weekly appointments with one psychologist after another. I eventually saw three over the next few years—but I never disclosed much to any of them. To me they were strangers. Their potential to cause trouble for me was unknown, and I had no idea what they intended to do with whatever information they gleaned from me. At that point in my life, I seldom had an encounter with an authority figure of any kind that didn’t go badly in one way or another. Regardless of my thoughts on the matter, I now spent an hour each week under interrogation by the enemy, and like a good little prisoner of war, I gave back as little as I could. The scenario usually went like this: they asked a lot of long questions, and I made a lot of short, wary replies. Here’s one interaction I remember when I was nine or ten:
“How does it feel when you make a noise or a tic?”
“Do you feel anger toward your mother because your father left town?”
“How do you feel when other kids don’t want to be around you?”
“Just like anyone would—sad.”
“Who do you want to blame when you get in trouble?”
At the time, that was the only answer I could give, because I didn’t understand what was happening. Later, after I learned I had Tourette’s, I didn’t blame anyone, simply because there was no one to blame.
None of the doctors really seemed to need my help or input—even though my parents’ divorce had nothing to do with my personality troubles, it got the blame anyway. From my point of view, finding the cause of my condition wasn’t nearly as important as finding ways to deal with it—and that was assuming that my emerging jerks and yips and yells could ever be dealt with at all.
Soon after I began classes in the fourth grade, at my new school, the subtler effects of Tourette’s began. They were little things, mostly, but since I had not yet been diagnosed, they were things we didn’t know to expect. Realizing that there were still more unknowns out there that could present themselves was very upsetting. These new little symptoms began appearing like pop-up ghosts in my everyday life, most of all in my struggles with schoolwork. I was too smart to be having so much difficulty.
Although I didn’t know it then, while I was at school my mother was engulfed in frantic research, because I had begun doing other things that alarmed her. I was twitching. My face, arms, legs, and neck—major muscle groups twitched without warning and for no apparent reason. Imagine trying to read a book or write out an arithmetic problem when your face and head and neck are regularly twitching so badly that you continually lose your place, whether reading or writing. Every few seconds I’d have to take a moment to reorient myself on the page, then take in as much as I could before the next series of twitches came along. Long passages were a struggle, and every assignment took forever to finish. It really was a very slow process, and I didn’t know what to make of it—especially since my cognitive and memory skills were so strong. You see, the actual concepts put to us as students weren’t a problem for me, and the logic behind complex ideas was nothing I couldn’t handle. The trouble came at the point of contact, the first time my brain took in the information, and I felt it most with anything that involved reading or math.
But my study difficulties paled in comparison to my newest tic—an entirely new era of knee knocking. I mentioned earlier that when I was in the car I’d begun the practice of wobbling my leg back and forth against the door. Now, when I was in the car and sitting next to my brother Jeff, I began swinging my leg just enough to knock my knee against his. Not hard, but just annoying enough to drive any human nuts. The aggravation factor was bad enough, but in this case the worst part was that I honestly had no desire to mess with Jeff or cause trouble. I had no motive for bumping him over and over. But who was going to believe me when my behavior said the opposite? Of course Jeff would demand that I stop, but I couldn’t. At that time, I hadn’t developed my language skills enough to explain to Jeff that what my body needed was the feel of my knee knocking against his knee—in some very specific, certain way. I somehow knew that with the impact would come a feeling that turned off the need. It’s hard enough to explain all these years later; I certainly had no capacity for it back then. But I’d guess that the explanation would have sounded too absurd to have done me any good anyway.
You might be asking how this tic went over on visits with my father.
The short answer is that it drove him nuts. The first time Jeff and I got into the car with him and the knee knocking started up, he told me to stop—over and over—and of course I didn’t, and before long it wore through his patience like sandpaper rubbing on the skin of an elbow. In his frustration, Dad worked his version of tough love on the situation and popped me across the chin. I began to cry, because I was angry and embarrassed and equally confused. I wanted to stop knocking my knee but I couldn’t, so now I was going to have to pay the consequences.
Dad moved me into the front seat. So I went back to knocking my knee against the door. Same thing, looking for that just-right knock. Dad thought I was either mocking him or rebelling by trying to damage his car. Round and round it went.
My mom believed me when I said I couldn’t help it. When I got upset, she rubbed my back to calm me down. It helped a lot, but I still didn’t talk to her about all the scary things going on in my head. I couldn’t tell her how confused I was, or how frustrated. The guilt of adding more to her burden would have been worse than the relief of talking it over with her. By this time I was old enough to realize how much pressure she was under just being a single parent, not to mention being a single parent of two hyperactive kids, one of whom was thought to be a little strange. So I just kept trying my best to figure it all out on my own. Mom kept hoping I would get used to the new house and the new school and settle down. She was especially worried because my teacher had begun sending notes home about my disruptive behavior.
One Sunday, after my usual Sunday morning conversation with Dad, I handed the phone over to Mom. Usually I raced upstairs and found something to get involved in, but this time I stopped halfway up to listen in on the conversation. Mom did all the talking. I was totally shocked as I listened to her describe my behavior. I seemed to have played a trick on myself by hanging back on the stairs, listening as the raw truth rolled out. Over the phone, Mom recounted one mortifying incident after another. I froze there on the steps. Did I really do all that? My cheeks got hot with embarrassment at the thought of my mother silently observing me while I acted in such strange ways.
I couldn’t believe I was that out of control. Mom sometimes had a habit of exaggerating stories; I wondered if maybe that was the case this time. She made the situation sound so bad. When I got back on the phone with my dad, I tried to do damage control and offer assurances that everything was okay. That suited him better. He didn’t want to talk about my tics or my poor behavior—he wanted a quick synopsis of the mundane aspects of our lives, such as how I did on my social studies test or how I was doing on my baseball team. I was happy to play along if it got me off the phone without any trouble.
About this same time, Dad took Jeff and me on a special trip to Disney World, where he hoped I would behave more like a typical 10-year-old. I wanted to be a typical kid more than anyone could possibly imagine. I was very excited about the trip, as any kid would be, and I did have a really good time. I loved the ride Space Mountain, and I was enthralled by the Disney characters, especially Goofy, who was my favorite. But in my typically optimistic way, I had envisioned a trip during which Dad and I actually got along—and I am sure he had the same vision. Instead, I wore down his patience with my constant ticcing and hyperactivity, and he got angry. I became discouraged by my father’s inability to understand that I could not control my behavior. I hated the fact that I couldn’t be what my dad wanted—no matter how hard I tried—and I couldn’t wait to go home.
Nothing changed the fact that my mother was desperately looking for solutions and that I was still out of control. I only knew that I continued to struggle at school. Reading an entire chapter in a textbook was like running a race with cinderblocks strapped to my ankles. I knew reading wasn’t supposed to feel that way, and I knew that some of the kids who grasped things more slowly than I did nevertheless could read with much more ease. Any reading task, especially assignments of more than a few pages, took a terrible effort. Before starting a new chapter, I’d count the pages to the finish line. Sometimes I’d find that the last page of the chapter wouldn’t run the full page, but would contain only a few paragraphs. That made me extraordinarily happy, and reaching that final page was always a treat.
People often ask why Tourette’s should make reading such a chore. After all, if I can see clearly, and I can think clearly, and I can handle language, why is it so hard to read? Twitches aside, the best answer I’ve found so far is to ask a normal reader to imagine trying to read while several people simultaneously snap their fingers in front of your eyes and clap their hands next to your ears. With Tourette’s, those forces of distraction exist internally. The outside world sees only the symptoms, when they manifest in the form of twitches and tics. But within the mind of someone with TS, those physical impulses are only part of the picture. The Touretter’s attention span is tormented with flashes of broken thoughts and abstract imaginings. They constantly flick and flash like dancing characters filling a screen and blocking the view behind them—and they seem to move entirely of their own volition.
Yes, the tics can sometimes be squelched for very brief periods, but there is a correlative buildup of energy that will eventually force its way out like an explosive sneeze. At that point, the tics are as unstoppable as water spilling over the top of a dam.
I can now see that there was a time—when my tics were emerging—that they and I were both completely out of control. Now, if I have to, I sometimes bite on a pen or chew gum to focus my energy elsewhere. That sometimes temporarily quiets the tics. Various medications have also somewhat softened the decibel level of my woops and barks, but meds also often have debilitating side effects such as drowsiness and weight gain. Over the years I have taken several different medications for my Tourette’s, and new drugs are being developed all the time. So, although there currently are no medications that completely stop the tics, there is hope that in the future there will be. But in the fourth grade—for me—all talk of drugs and medication was still very much in the future.
Even though the tics were devastating to me, I never totally despaired. Many with TS are suicidal, but I have never experienced those depths. Maybe there was some gift inside my nature that allowed me to tolerate my high-maintenance constant companion. Although I was distressed by the controversy my behaviors were causing at home and at school, all in all I was curiously upbeat much of the time. Some scrap of identity was left for me by my defining myself as a unique and original person, despite the obvious social stigma. Compared to some of my blander classmates, I never had the problem of walking around feeling unnoticed. I chose to see that as a positive thing.
In that time and place, I could sometimes even fit in as just another kid on the baseball team (where lots of chatter is considered a sign of enthusiastic heckling of opponents). And Jeff and I sometimes participated in normal brotherly activities. We used to play baseball with an old tennis ball and use the garage door as a catcher. For a while, I was a Cub Scout and did all the typical Scout activities, including building birdhouses and participating in the annual Pinewood Derby. Jeff and I had hundreds of small toy cars and we spent endless hours in the spare bedroom, which was our playroom, playing with them or our large collection of baseball cards. We often pretended to be baseball players or wrestlers from WWF (now WWE)—specifically Hulk Hogan and Andre the Giant. Those were times when I did many of the things normal little boys do.
But even though I sometimes forgot myself in those brief and blissful moments, the reality was that I was not normal. Rather than shrink from my unusualness, however, I embraced it, deliberately taking on an unconventional appearance that helped add to my exotic quality. I wore my very curly brown hair long and wild, in a white man’s version of an Afro. And I dressed in conservative clothes, which made my wild hair stand out all the more. It helped to cultivate a vaguely mischievous persona as well. The image worked, for a while, because my naturally mischievous disposition coupled with my vocal tics projected a picture that made people think I was up to something—as if all my little symptoms were part of some secret joke.
I was juggling a lot of eccentricity, but at that point I could still maintain my inner self in familiar situations—and that reinforced my idea that having a specific identity is a basic human need. Anyone can flourish in a given situation, provided the identity they have—or the one they project—allows them to fulfill their daily needs and accomplish a few of their higher ambitions.
I find it interesting that many people in unique situations such as minehave been labeled unacceptable by our society. Most people are round pegs and fit in round holes. And that’s fine. For them. But those of us who are square or triangular or purple are often looked upon as lesser people. Our media-driven society has made some very shallow citizens out of the round pegs, and there’s no better position than that of a classroom teacher for observing the horrible effects that type of thinking is having upon the youngest members of our society. The costs are enormous when our kids give in to the pressure of measuring self-worth in bizarre ways—by wearing the right shoes, for example, or having a cool phone. We need to find better ways to educate our children about their, and our, self-worth. Nonmaterial things, such as kindness and loyalty, should count for more than having great hair. As a child, I found that small but regular doses of acceptance and approval continued to power my self-esteem long afterward. In general, for anyone, acceptance and approval together work like some sort of internal fusion reactor, and just run and run and run.
Excerpted from Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had by Brad Cohen with Lisa Wysocky, copyright 2005. Used by permission of publisher VanderWyk & Burnham (VandB.com), Acton, Mass.