Front of the Class

by Brad Cohen

  Sports inevitably provided the social interaction I needed. As I became part of a team—whether in the outfield or on second base, sitting in the dugout, or even in the water when I swam—I could make all the noises I wanted and it wasn’t really a big deal. Running down a soccer field with a group of screaming kids gave me the same privilege. I was with other boys my age and we were having fun and working toward a common goal. We did team things together and lived shared experiences. Only in sports could I have this kind of normal, everyday life. I loved every minute of it.

  In hindsight, it was good that I had found a home of sorts in sports, because my social life was about to reach a new dimension of hell. I was getting ready to start junior high.

  THE WONDER-BREAD-AND-MIRACLE-WHIP DIET

  I HAD HIGH HOPES for junior high. I knew it was going to be a challenge because it brought several elementary schools together and so there would be a lot of new kids to meet, but I viewed that as a great opportunity to make friends. Not new friends, because at that point I didn’t really have any friends, but with new kids around maybe someone would be able to look past my tics and like me just for being me.

  My hopes were not to be fulfilled. I ended up a loner, constantly mocked, desperately praying I wouldn’t get beaten up when I stepped off the school bus. I gave a big sigh of relief each day when I finally got home where I was safe with my mother and Jeff.

  Jeff was the one person besides my mom who was never embarrassed by my tics. “I always knew Brad couldn’t help it. I never hesitated to go places with Brad, but I was always observant of how everyone else looked at him,” said Jeff. “Sometimes I looked right back at people who were staring and tried to get them to think it was me making all the noises. At home we fought a lot and I teased him sometimes, but now I think that was more because we were eighteen months apart in age than because of the Tourette’s. We fought, but we always supported each other.”

  My weight was still a problem, and I constantly drank soda. In fact, I drank so much Coca-Cola growing up that if the restaurant didn’t offer free refills, our tab was very high. Because McDonald’s and other fast food places near us didn’t offer free refills, when we went out we often went to Friday’s restaurant, where refills were on the house.

  Although I regularly chugged soft drinks, my absolute favorite comfort food was a Wonder-Bread-and-Miracle-Whip sandwich—not exactly a healthy snack, but one I constantly craved during school and frequently ate after school. Eating one was a sign that I was home and had safely survived yet another day of junior high.

  Eating may have been one of my favorite times at home, but at school it was one of my worst times. Inside the junior high cafeteria, I sat in my baggy jeans and long-sleeved flannel shirt at a table by myself—no one wanted to sit with the kid who barked. Almost daily, as soon as no teachers were watching, a group of kids would come by and mock me by making the same noise or tic I was making at the time. Talk about feeling uncomfortable! And it just got worse and worse, because as my stress level increased, so did the number and volume of my tics. “Woop, woop … FA, fa, FA!”

  Kids routinely danced circles around me while I tried to eat. They imitated the noises I made and laughed at their own impersonations, while I stared into a tray of tasteless cafeteria food. I tried to ignore them and eat my lunch, but that was impossible. I was a sitting duck. Sometimes I tried to explain that I had Tourette syndrome, but they never listened.

  I guess it made them feel better to put someone else down. But it just made me want to go home. It also made me want to throw my food at them. I wanted to yell and scream in frustration and beat the tar out of them. But I didn’t. I didn’t do any of that because I knew it would just make it harder for me if I did. Instead, I went to the nurse’s office.

  By this time I was on Haldol, a medication I took for TS that caused both fatigue and an increase in appetite. At school, I had to go to the nurse’s office to get my meds, and over time the nurse and I struck up a friendship of sorts. Her office window looked out into the cafeteria, so she could see that I was having a bit of trouble. One day she invited me into her office to eat lunch. I can’t tell you how grateful I was for this unexpected respite. One day turned into another, and then another. Pretty soon eating in the nurse’s office became a lunchtime habit and a much-needed break from the mockery and taunts of the other students.

  The school bus was another difficult place. Mom often drove us to school, but just as often I rode the bus. Kids, particularly the older ones, routinely gave me a hard time about the noises I made. One day a boy who was a year ahead of me got several of the other kids to join him in his taunts. I tried to stick up for myself, but that only fueled their fire. That afternoon the kid made it a point to sit directly in front of me and continue his harassment. He quickly began mocking me and slapping me on my head, and before I knew it other kids had joined in. The bus driver should have seen us by this point, but he was oblivious. As the swings came—each harder and faster than the last—I tried to defend myself. Finally, the bus driver saw us, broke up the scuffle, and pulled us off the bus. We hadn’t yet left the school parking lot.

  The kid who initiated the fight and I both ended up in the principal’s office. When I learned that we would both be put into in-school suspension, I couldn’t believe it. I was being punished for being attacked for something I couldn’t control. In-school suspension meant sitting in a little room with four white walls with nothing on them. Lunch was brought to you and no noises of any kind were allowed. I did my best to observe the no-noise rule, but my best effort was a miserable failure. Obviously, after a day of this my tics were as bad as they had ever been. When I got home and Mom saw the state I was in, she called the principal and gave him a piece of her mind. It wasn’t pretty, but she made sure I would never get put into in-school suspension again.

  That was the first chink in the school’s armor, giving a positive aspect to that awful ordeal. My mother continued to lobby with ceaseless resolve to remedy one injustice after another, as I was continually being punished for having Tourette’s. Initially she didn’t have much luck, but over time the staff began to listen to her.

  My math teacher at the time, a tall, skinny man who towered over his students, was particularly difficult. He was a stern man who seldom smiled, and he had no tolerance for my tics. He thought I was doing “the hiccups” on purpose; he truly believed I could control them and that I was only ticcing to get attention. Not too far into the school year, he began putting me in time-out whenever my tics started to bother him, which was pretty much constantly. He started sending me to time-out several times a week. I began having trouble concentrating in class because I was trying so hard not to tic.

  Time-out at this school meant being sent to another math teacher’s class and sitting quietly in the corner facing a wall until the period ended. I hated this and also thought it was a stupid idea. Because of tics beyond my control, I had already disrupted one class. Now I was in another teacher’s classroom interrupting her class with my noises. I was the perpetual “kid in the corner.” The teacher knew I had been sent to her class because I had already disrupted my own class, so she automatically treated me as a “bad” kid without knowing all the circumstances. So, for many math classes, I sat in the back of a strange classroom, staring at another plain white wall, trying desperately to be quiet, and rarely succeeding. I was embarrassed, but there wasn’t much I could do. If I turned around, the teacher got mad. I did try to listen, though, and I must have picked up some of the concepts because I passed the class. And that’s how in the seventh grade I literally learned math … backward.

  From that point on, my mom insisted that she and I have a say in what teachers I would have. She made sure they were educated about Tourette syndrome, and if someone couldn’t (or wouldn’t) teach me, she made sure the principal found a teacher who could. As a family, we discussed switching to a private school, but I didn’t want that. I didn’t want to be treated differently because I had
Tourette’s. My parents always thought I wanted to stay in public school because it offered Spanish and the private school near us didn’t, but that wasn’t the case. I wanted to take Spanish, but much more than that, I didn’t want to use Tourette’s as an excuse. I wanted to be normal, and I wanted friends. I knew I just had to work harder at both.

  When I turned thirteen, it was time for me to celebrate my Bar Mitzvah, the Jewish ceremony of passage into manhood. Jewish girls have their own Bat Mitzvah ceremony at the same age. Having a Bar Mitzvah is one of the most significant events in the life of a Jewish boy, and it is an amazing thing to witness. Basically, the Bar Mitzvah is a ninety-minute religious service led by a thirteen-year-old in both English and Hebrew. That’s a lot of pressure for any kid, and an almost impossible task for someone with Tourette’s.

  I, like most Jewish boys, began Hebrew school in the fourth grade and prepared myself for several intense years of study. (This was in addition to the regular public school that I attended.) Even though I was having problems in school, there was never any doubt in my mind that I would have a Bar Mitzvah. It was a given. Many people in my extended family didn’t think I would ever be able to get through the ceremony because of all the pressure it puts on young men—stress and anxiety are known to increase the symptoms of Tourette’s—but my mom never thought twice about it. She knew I would do well. It would be my day to shine.

  But I had a few years of Hebrew school to get through first. Mom and I realized early on that I would need a special tutor to work with me, and the one-on-one help ended up playing a big part in my Bar Mitzvah success. Still, although I thrived in the tutor-pupil setting, I wasn’t quite so triumphant in the religious classroom. Specifically, my barking was getting me in trouble again. No matter how hard I tried, I could not suppress my tics enough to please my Sunday school teachers. When it got to the point that I knew I could never please them, I gave up trying and started acting silly in class on purpose. What did it matter? One way or another I was going to get in trouble, and this way at least I got some positive attention, if only from my classmates. So I would wisecrack and carry out all the outrageous dares that others challenged me to do. Of course, before I could go too far, I was on my way to the administrator’s office, snickering and dancing all the way. Now, no one likes to be sent to the administrator’s office during Sunday school—except me. To me it was well worth it because for one brief moment I had everyone in the Hebrew class on my side. I felt that we students were all one against the teacher. I was part of a group and they liked me, if only for the silly things I was doing to make the teacher mad. If my memory serves me correctly, one day I even set a personal record for the number of times I was sent out of the room.

  Despite the tics—and the time spent in the administrator’s office—I learned all I needed to learn, and before I knew it, my Bar Mitzvah was just days away. When it came time for the ceremony, my family—except for my mom and Jeff—were all on edge about my propensity for unpredictable and bizarre behavior. The thought of my odd ways being showcased for all to see filled them with dread.

  Mom and Dad felt strongly, however, that I should have this rite of passage. They had put their differences aside and joined forces to stage a typical over-the-top Bar Mitzvah in my honor. Most kids my age were invited to the Bar Mitzvahs of many of their classmates, their friends from the neighborhood, and distant cousins they rarely saw. I didn’t get many invitations. But that didn’t stop Mom from inviting “everyone and their brother.” Surprisingly, most of the adults showed up.

  This was also one of the few times since the divorce that both sides of my family were all together. I have to say that Mom and Dad did a great job of keeping Jeff and me out of their problems and out of the divorce. They both worked hard to be cordial when they were in each other’s company, and the rest of the family followed suit. Together, Mom and Dad gave me my Bar Mitzvah party; it was my day and everyone recognized that.

  Looking back, I realize that I probably should have been scared to death. Some of my distant relatives hadn’t seen me in three or four years, and they remembered me as that cute little kid with the big Afro. I still had the Afro, but this would be the first time they would see me with Tourette’s, and I wanted to be sure they saw me as a man, not as a strange kid who continually made faces and “burped.” The grown-up image I wanted to convey was tough to devise as I, in many ways, was still quite immature. I was still the joker, and much of my humor was only funny to other immature kids. I was visibly self-conscious around others, with good reason, and dialogue with someone outside my immediate circle was often painful for both parties. But because I had to deal twenty-four hours a day with my bizarre tics and the often negative response others had to them, I was far more mature in other ways than most kids my age.

  Much of my family’s fear and the actual reality of my Bar Mitzvah revolved around the fact that people still did not understand Tourette’s. In 1986, the year of my Bar Mitzvah, Tourette’s wasn’t seen as commonly as it is now. Whether that’s because most people with Tourette’s were like the people we saw in the support group and stayed home all the time, or there just weren’t as many cases, I really don’t know. I do know that there are several hundred thousand people in the United States with Tourette’s, if you include people with milder forms of the disorder who remain undiagnosed.

  But these numbers were far from my mind during my Bar Mitzvah. It was my big day and I was pretty excited. Was I making noises? Sure. Was I twitching? Of course. But I had control—of myself and of the ceremony. I went up to the bema (the raised enclosure around the altar) and read both English and Hebrew very successfully. I more than showed all the doubters that I could do it, and do it well.

  Doing well was especially important to me because my tics were really bad around the time of my Bar Mitzvah, with lots of head jerking, shoulder shrugging, and rapid eye blinking. I was ticcing so frequently that sometimes I was unable to concentrate on the conversations I was having. I would lose my train of thought, and I couldn’t stay still as my shoulders shrugged back and forth with rapid movement. Oh, and be sure to add my barking noises to all that.

  I’m sure some of the tics were the result of so many people thinking I wasn’t going to be able to pull this off. I badly wanted to prove them wrong, and in fact, I did prove them wrong. While speaking, I was concentrating so hard on the ceremony that I didn’t really tic much. This is a normal thing for me. When I concentrate really hard on doing something, such as giving a speech or talking, I don’t tic as much—everything seems to disappear into calmness like snow melting on a warm winter afternoon. I made up for it later, of course, letting out a massive load of twitches and odd noises. But by then the pressure was off. I had proven my point.

  It was a very positive ceremony for me in many ways. First—in my faith if not by law—I was now a man. That was a huge milestone. But more importantly it was a turning point with at least some of my family, and others close to my family, because they finally saw me as more than my tics. They saw me get through this very intricate ceremony, and they realized that behind the funny mannerisms I had at least some intelligence. For the first time they had to pay attention to me for a prolonged period of time rather than ignore me or turn away, and they saw what I dealt with on a daily basis. At that point, some of them finally got it. Some of them finally realized that I could not control my twitches and tics. They finally understood Tourette’s.

  After the ceremony we all went to a big hotel for a luncheon in my honor. Mom and Dad had gone all out and arranged for a dance floor, a band, a caricature artist, and a photographer. Of course, the whole thing was caught on video. Initially, I was a little disappointed that I didn’t have any friends to share the event with, but I didn’t let that ruin my day or stop me from having a good time.

  Having the support of at least a few people besides Mom and Jeff was a huge deal to me. It was validation, friendship, and relief all rolled into one. With all that came my full understan
ding of how much harder I had had to work to be here on this day than other kids my age. I could have been bitter, but instead I was proud. Even though school—and life—often got the better of me, there was never anything I thought I couldn’t do because of Tourette’s. I could do whatever I wanted to do; I just had to suck it up and find a way to make it work. If it meant spending more time than a “normal” person would to read a certain number of pages, then I had to spend the time and do it. And I did. If that meant I had less time to watch TV or do something else I enjoyed, then that’s just how it was. I had Tourette’s and I had to make sacrifices sometimes. I learned to make the best of it and get on with things.

  In school, I never liked it when my teachers treated me differently because I had Tourette’s. I wanted to be treated just like everyone else, so I made sure that I had my homework done every day, no matter how much effort it took.

  Although TS made school difficult enough, the really hard part about school was my lack of friends, and sometimes I would get upset about that. But as I got older I kept one thought in mind: did I really want to be friends with people who made fun of me? Of course not. So I was patient and waited for people to look beyond the Tourette’s and realize that I had many good qualities. And finally it happened. It started with my Bar Mitzvah and the people there who learned to look past the tics and twitches. Once they did, they finally saw Brad, and they found that they liked him. People began to accept me for who I was as a whole person. That attitude spread to a few people at school and at the JCC, and before I knew it life was a little bit easier.

  After the Bar Mitzvah, I also became friends with some of the older people in my neighborhood, and through them my social skills began to improve. I often asked to help with their yard work, shovel their snow, or baby-sit, and I gained a great deal of confidence in a job well done.