by Brad Cohen
My big brother, Steve Mathes, also saw the positive aftereffects of my Bar Mitzvah. He observed, “Having a Bar Mitzvah is an incredible accomplishment, especially for someone like Brad who had to work ten times as hard as most kids. Brad was a lot more confident afterward, and I think people saw that confidence and treated him more respectfully because of it.”
My Bar Mitzvah had truly opened many doors for me, but there was one door that still hadn’t opened. I was determined to conquer my problems at school.
INTRODUCING THE STRANGER
DURING MY JUNIOR HIGH YEARS, my mother was now finding lots of information on Tourette syndrome from several different sources. She was in regular contact with the Tourette Syndrome Association and also made use of the library at Washington University, which was right in St. Louis. While the information was interesting—and helpful—it wasn’t all that positive. There was no hope of a cure.
One morning when I was still thirteen, a representative from the Tourette Syndrome Association called my mom with some pretty good news. The Sally Jesse Raphael Show was filmed in St. Louis, and its producers had agreed to devote an entire show to Tourette syndrome—something that to our knowledge had never been done before on network television. The best part was that I was invited to be on the panel!
It all came about at the last minute, so I didn’t really have time to get nervous. Mom came to school and pulled me out of class and told me I was going to be on television. That was pretty cool, but I was more excited about getting out of school for the day than about being on television. I was excited about anything that got me away from the constant harassment and the stress of the classroom. We didn’t have time for me to go home and change, so I showed up at the studio in my usual baggy jeans and untucked flannel shirt. Upon arrival, we were escorted to the show’s waiting room, in TV lingo called the green room, where we joined other people who were going to be on the show—a doctor and several high school kids with Tourette’s. It was an interesting group, as it always is when you get a roomful of Touretters together.
Of our little group, I was the most vocal with my tics—so vocal, in fact, that the producers were nervous that I would distract from the discussion panel, and they ended up pulling me from that part of the show. I can’t tell you the disappointment I felt. It was like being rejected from a group of rejects, and, at the time, I was really hurt. If the producers really wanted to show what Tourette’s was like, they should have embraced the fact that I was there. The goal of the show was to educate people about Tourette syndrome. For the purpose of displaying Tourette’s in both an audio and a visual setting, I should have been their perfect guest.
Just before the show started, the producers brought Mom out to sit in the audience. I ended up staying in the green room during most of the show. Then, during the final segment, they sat me in the audience with Mom long enough to chat with Sally. I was surprised at how much of the show was plotted, with the producers and Sally going over and over the questions with the guests and helping them frame their answers in sound bites rather than in paragraphs. I know that makes for good television, but it rattled me at the time. I was already confused and disappointed by not being able to take part in the discussion onstage, and now I had to remember to talk a certain way.
When Sally came into the audience to talk to me, I was very tense. My tics were both audible and visible, which was good for the viewing audience, but I was trying hard not to let the tics distract me to the point that I couldn’t answer her questions correctly. And then the first question she asked was not the first question we had rehearsed. That threw me off. As a result, my answers were short almost to the point of being monosyllabic. Sally asked routine things, such as when was I diagnosed and what was it like to have TS. I was nervous, but I think I did okay. I can now watch the video of that show and see a plump, uncertain young boy with an Afro who was visibly struggling, but who did indeed turn out to be the ideal guest. I looked and sounded like a typical person with Tourette syndrome. Perfect.
A lot of positives came out of my appearance. The experience made me see firsthand how even among compassionate people—such as the producers and the members of the audience—tics are often at complete odds with other people’s needs and circumstances. It wasn’t my fault that I had TS, but I had to be aware that there were some instances in life in which I had to go around the brick wall rather than plow straight through it. I couldn’t be onstage, but I was a part of the show and I had been given a chance to make a difference. In hindsight, it doesn’t matter whether I was onstage or not; it matters that I was there and that my presence helped people gain knowledge of Tourette’s. That was a good learning experience for me, and one I have recalled time and time again in my daily life. I do not let Tourette’s limit my experiences, but how I enjoy those experiences might be different from how they are enjoyed by a person who does not have TS. Not better, not worse, just different.
By the time the show finished taping, the people in the audience were really in my corner. They were supportive. It was then that I first realized that a little bit of education about TS—or anything, for that matter—could go a long way. On the way out of the studio, everyone treated me like a star. Everyone wanted to talk to my mom and to me, and well-wishers surrounded us. That was a strange feeling, as it was the first time I had received any positive attention for having Tourette’s. It certainly beat having lunch alone.
Before the show aired, my mom called all our relatives, and for a short time I was a celebrity in our family, too. The fact that a nationally televised program would devote an entire show to Tourette syndrome and include me in that show was not lost on my family members. It was another tiny drop in that little bucket of validation, and a few more of my relatives began to come around in their ideas about me and about Tourette’s.
The show also made great strides in creating public awareness of Tourette syndrome on a national level, and I applaud Sally Jesse Raphael and her producers for doing such groundbreaking television. It was a bit disorienting for one young teen with Tourette’s—me—but I am very glad to have played a part in building some initial consciousness of TS nationwide.
As most of my classmates were in school when the Sally Jesse Raphael Show aired, they didn’t see it and didn’t get to realize what a star I now was—me along with the eight thousand other people who were on television that day! But Mom made the teachers at school aware of the program, in addition to continuing to pester anyone who would listen, telling them about the hard time I was going through.
Mom had been working hard to educate the teachers, but what about my fellow students? Who was going to educate them? My principal, an innovative guy named Bill Myer, listened to my mom, and he had an idea. By this time I was fourteen and in eighth grade. It was spring, and there was an orchestra concert during school that the entire junior high was attending. I was sitting in the back of the auditorium, making my noises as I always do. Maybe this day was a little worse than usual, because I knew at some point Mr. Myer was going to mention Tourette’s.
Sure enough, after the concert, Mr. Myer got up on the stage. He was a dark-haired, well-dressed man in his middle years who was well liked by both teachers and students. He respected others, and they in turn respected him. With everyone’s full attention directed toward him, he asked, “Did you hear a noise during the concert? Was it annoying?”
Of course most of the students had heard me, but no one answered because they didn’t know if they should. They didn’t know if it was a joke or not.
Into the silence, Mr. Myer said, “The person making all the noises is Brad Cohen.”
I stood up with all kinds of emotions racing through my head. Although I had agreed ahead of time to talk with the entire assembly, now I was realizing that it was going to be harder than I thought. I made the long walk to the front of the room with everyone staring at me because I continued to make noises and tic uncontrollably. When I arrived in front of the hundreds of students, I was nervous,
anxious, and very uncomfortable. But I was also very excited. It was like getting a new bicycle and wanting to tell everyone about it—to show people how cool it really was. But this time there was no bicycle. There was just me, and this was my chance to tell everyone why I was making the funny noises and the silly tics all day during class. I really hoped I wouldn’t blow it.
When I got to the front, Mr. Myer told the school about Tourette’s and that I couldn’t help what I did. We stood up there in front of everyone for only about ten minutes, because thirteen-and fourteen-year-olds can absorb only so much information about a disorder they have never heard of before. As my principal explained that I disliked making the noises much more than they disliked hearing them, I felt the crowd relax. And, as I looked out over the many faces in front of me, I realized that I had taken the first small step toward controlling my own destiny.
I had a few more things to say now than I had on the Sally Jesse Raphael Show. Also, Mr. Myer and I had discussed this beforehand, so I had had several days to prepare, and this day—the day I had been waiting for for years—couldn’t have come soon enough. I was finally going to tell the kids in my school about Tourette’s from my viewpoint. Through that, a weight was going to be lifted from my shoulders. I hoped.
Boy, was I nervous. I was sweating bullets that day because it was a day that meant everything to me. The whole school was there, including the students who had talked about me and mocked and pestered me from day one. But I wasn’t nervous about what I was going to say. I had practiced, and I was ready.
In the front of the big room, Mr. Myer asked me questions and I answered them as fully as I could. Because Mr. Myer was so well liked, it meant something to all of us when he talked. If he said everyone should listen to what I had to say, well, then, they would listen. He had a very calm, soothing manner, and that made me feel much more comfortable about speaking in front of everyone. Plus, I had spoken at Camp Sabra the summer before, educating the campers and counselors about Tourette’s, and that had gone very well.
I had chosen Camp Sabra as the place to make my first speech about my Tourette syndrome because it was a place where I felt completely comfortable. When you are at camp for four weeks, you really get to know people. We ate, slept, played, and lived together all that time. I think camp friends form a special bond that is difficult to explain unless you’ve experienced it yourself. Essentially, those were the people who knew me better than anyone, except my mom and Jeff.
There, and here at school, I told people that Tourette syndrome is a neurological disorder that causes me to make noises and tics that I can’t control. I had memorized those words from a brochure I had on Tourette’s, so that part was fairly easy.
“You will notice that I—woop, woop—make my noises more when I am nervous, uncomfortable, under stress, in a new situation—RAH, rah, rah—and when I think about it,” I said. “But when I am relaxed, not stressed, or around people I know, I—fa, FA … woop—will not do it as much. I don’t want to make—woop—these noises, but there is no cure at this—woop, woop—time, so this is what I do.”
Mr. Myer then asked me to share how I felt about having Tourette’s. I said it was hard and I only wanted to be treated like everyone else. I also mentioned that I was excited to share this information with them so they could understand why I made all the noises, and I encouraged them to come to me if they had any questions. I assured them that I was open and honest about my Tourette’s, and I was happy to talk with them any time.
As I handed the microphone back to the principal and began walking to my seat, all the people in the room began clapping. I hesitated, but then I realized the applause was for me. I could hardly believe it. Hundreds of kids were clapping for me just because I had gotten up in front of them and educated them about Tourette’s. Talk about positive reinforcement—this was it.
Later, Bill Myer reflected on the event: “It seemed an appropriate time to address this because there were some rather quiet passages in the music and I knew everyone had heard Brad during those times, so it would be easy for me to illustrate what I intended to say about Brad and his condition. Even though Brad’s mom kept his teachers and me informed [about Tourette’s], there was still a lot of ignorance. Some teachers and even more kids mistakenly thought Brad could control ‘it’ if he tried.”
Mr. Myer added that as soon as I entered junior high, there had been a flurry of discussion among the teachers, nurse, social worker, director of special education, and others on staff trying to find out about Tourette syndrome, what caused it, and how it was addressed. “It became part of our professional development,”he said. “I know Brad was terribly hurt at times, more so by the fact that nothing could be done to ‘fix’ it. When that happened, my philosophy was that there were only a couple of things we could do: educate people and counsel Brad in such a way that he understood and could steel himself against others. I cannot imagine what it was like for him.”
I realize now that after my Bar Mitzvah, my self-esteem got its next big boost the day I gave my presentation at Camp Sabra. Next came the Sally Jesse Raphael Show. My self-esteem rose even more after my speech to my school. I felt like I had been wearing a mask to school every day, and that speech was the equivalent of ripping it off. At last my classmates could see the real me behind the weird kid who barked. Yes, I was a little different, but now the kids all knew why. They had been told before, but never in a way that made sense—to me or to them. I also think the person who presents information has to believe that the information he or she is giving is factual, and that wasn’t always the case when teachers talked to my classmates about Tourette syndrome. If the teachers didn’t believe that my tics were uncontrollable, how could I expect the students to believe?
This was also one of the best days of my life because I could now articulate to others what was wrong with me, and I would no longer have to rely on others to speak for me. Before my speech at Camp Sabra the previous summer, and before the Sally Jesse Raphael Show, I couldn’t really explain Tourette’s. Those two incidents were my warm-up for this day. I had been fine-tuning my words all this time, and today I was able to explain Tourette’s so it made sense. No longer was I a sympathy case in which people looked at me and said, “Poor kid. I feel sorry for him and his family.” No longer was I “Brad Cohen who has Tourette’s.” For the first time, the kids at school could look past the Tourette’s and see me, “Brad Cohen, a pretty good guy who also has Tourette’s.” The difference in perception was huge.
I quickly learned that I felt much better talking about Tourette’s than sitting around letting others talk about me. When the kids clapped for me, it sent a message loud and clear. They appreciated my efforts in educating them, and that, in turn, made me a stronger person. I was quickly seeing that education was a very important factor in my world.
For most people, junior high is the time when puberty hits, and the lives of both boys and girls change physically, emotionally, and socially. My biggest change, however, came in that single day, when I took responsibility for all my actions, controllable or not. My life changed the day I was able to take the initiative and educate others. I felt power in that. It was like a door opening to a brand-new world. I had thought of being an educator before, but until now I had never tasted what that was going to be like. Now this desire was such a strong feeling that it surrounded and embraced me. Someday, some way, I knew—Tourette’s or no Tourette’s—I was going to be a teacher.
My experience on the stage also gave me a hunger to make more speeches. But that would come later. The rest of the school year was, if not good, much better than the first part of the year. Some kids really did treat me better. A few even became my friends. Now that was a novel experience, having friends—my own friends, not friends who were borrowed temporarily from my brother, but my own friends. All mine. At that point, I was very grateful to anyone who wanted to befriend me, because I knew that in being my friend they were taking a risk, too. To some, I was still the
weird kid, and friends of mine were subject to the same taunts and mockery that I was getting. But there were a few brave souls who opened themselves to me, and I welcomed them.
The importance of friendship cannot be overestimated. Our friends give us support, confidence, shared experiences, and balance. They are people we play with, laugh with, cry with, and even fight with. Imagine your life without all that, and it is a very bleak existence indeed. So you can see why I felt in a way as if I were in that scene in The Wizard of Oz where Dorothy steps from the black-and-white farmhouse into the colorful Land of Oz.
I don’t want to give the impression that because of the speech I was suddenly Mr. Popularity. That wasn’t the case at all. Not everyone accepted me, and I still had problems with a few teachers. But up to this point in my life, I had embraced Tourette’s as my best—and only—friend. Now it was nice to welcome a few others into my world. Tourette’s was still there, but the door was open for others to join me; through them, I gained a whole world of new experiences.
The speech had opened the floodgates. I had a lot of catching up to do, physically, emotionally, and socially—and I had only a few more months to do it in. High school was just around the corner.
THE INVITATION
PARKWAY CENTRAL HIGH SCHOOL had about sixteen hundred students. The first few days were kind of scary because I was the new kid—along with four hundred other freshmen. But the fear was good because it leveled the playing field with the other freshmen. We had something in common.
What we did not have in common was the locations of our lockers. For some reason, school administrators thought it would be better if I had my locker in a different hall, separated from the other freshmen. Why they thought separating me from my classmates—making me walk to a different hallway and physically distancing myself from them—would be better, I have no clue. But that’s the way it was. The location didn’t really bother me except that sometimes I had to load up on books for several classes at once, as I couldn’t get back to my locker after every class. On the plus side, I had a whole locker to myself, while most kids had to share a locker. They often had to buy special shelving to make room for two sets of books, two coats, and so on. I didn’t have that problem.