by Brad Cohen
Now that I was in high school I rode the bus to and from school every day. This was a big switch from previous years. Since the incident in which I got suspended for fighting, I hadn’t seen much of the inside of a school bus. So this was a big step—that I could ride on a bus without fear of being beaten up. It showed me how far others had come in accepting me—and my Tourette’s.
The morning ride was filled with anticipation of the coming school day, but the afternoon ride often seemed endless. Because it was a constant struggle for me to contain my tics even somewhat during classes, I would be drained from a long day of ticcing and studying. I am never able to totally suppress the tics, and trying makes them a lot worse when I finally stop trying. So once I got on the afternoon bus, I would sit alone barking and twitching nonstop. I was also dealing with the general hardships of being a freshman. I ticced more on the bus because I could—it was a more open area than the classroom. Sometimes, when I became uncomfortable or knew I was bothering others, I got off at an earlier stop and faced a long walk home. Better that than to stay on the bus and tic.
Home remained my most comfortable place. Still, many more people across the country had started hearing of Tourette’s. The Sally Jesse Raphael program had helped tremendously with that. When, in my sophomore year, David E. Kelley devoted an episode of his show L. A. Law to a case involving a man with Tourette syndrome, it had an even larger impact on people with TS. Millions of people saw that show—many remember it still—and were able to sympathize with the innocent man who had been stricken with a condition he could not control. The mainstream media’s recognition of Tourette syndrome was bringing it forth as a legitimate condition, and that made it infinitely easier for everyone with Tourette’s, including me.
Bolstered by increasing media attention to the condition and by my successful speeches at school and at Camp Sabra, I instituted a new policy when I entered high school. I had gained enough confidence that I decided to introduce myself to my new teachers before the semester began. I decided to take the initiative in educating others about TS and not leave anything to chance. Never again did I want to walk into a classroom and have the stress of wondering whether the new teacher would understand Tourette syndrome. Because of my decision, when I entered any of my high school classrooms I knew the teachers understood Tourette’s because I had told them all about it. Somewhere along the line I realized that a lot of my teachers didn’t know how to talk about Tourette’s or how to teach their students about it. By talking with them I was able to help them through this process, and it was easier for everyone concerned.
I also asked each teacher to give me two minutes on the first day of class to explain Tourette’s to the other students. Many of the freshmen came from the same junior high that I had attended, so I did know some of the students, and they knew I had TS and what it was. But I also felt a need to educate the upperclassmen. Essentially, I gave the same speech to every class I was in every semester. I didn’t care if a student had heard it before. I didn’t care if the class had ten students in it or a hundred. I was determined to give that speech. In a way, I thrived on it because the speech got better every time I gave it. And, as time went along, I began to realize that I was indeed making a difference. If someone heard me make the speech a second or even a third time, it rammed the symptoms of Tourette’s home that much harder. Some kids even went home and told their parents or mentioned it to kids who weren’t in my classes.
My goal in giving the speeches was to help people understand that I had Tourette’s, and all that that entailed, but at the same time I wanted them to see that it was not going to stop me from being a student in this particular high school. Also, it was not going to stop me from being their friend.
The other thing my speeches accomplished was, in a very one-sided way, to introduce me to every person in every class. In learning about Tourette’s and about me, other students got the feeling that they knew me. This familiarity paved the way to many of my activities in high school and led to some lasting friendships.
There are many differences between junior high school and high school, with one of the biggest being the greater maturity level in high school. In high school, most of the kids were good about learning about Tourette’s. So were most of the teachers. For the first time, I felt I could pursue my studies and follow my interests and not have Tourette’s get in my way. My freshman year, I worked on the yearbook (and would become coeditor my senior year), joined the racquetball team (in which I eventually earned a varsity letter), took beginning journalism, and continued my Spanish classes. I also began losing weight about this same time, and the early weight loss was encouraged by a new commitment on my part to forego fried foods.
My interest in teaching children also led me to take a child development class as a freshman. It was a good class for me because it was mostly comprised of upperclassmen, so I got to be with many students who had never experienced Tourette’s before. One of the more interesting things we had to do for that class was to take care of an egg and pretend that the egg was our baby. I took the job very seriously, even though I was only a freshman. I remember making arrangements with my mom to baby-sit the egg while I was doing other things. I know she thought it was silly, but she supported me in this, as she did in everything I took on. I am proud to report that I took excellent care of my egg!
Following all these different interests was a very positive experience for me because, unlike math class, where I’d go in, take notes, and leave, these classes were interactive. I learned that the more I participated in class, the more the teacher and the students learned not to fear tics and twitches. Little by little, people started jumping on board. They learned that I wasn’t so different from them after all, and soon I sensed another reaction that was brand-new to me. It was respect.
In November of my freshman year, my life took a definite turn for the better when an older kid named Lenny Minkovich called my house. Lenny was recruiting new members for the B’nai B’rith Youth Organization (BBYO). I was thrilled to receive the invitation because BBYO is a great organization that provides opportunities for Jewish youth to develop leadership potential, and it was something I definitely wanted to explore. The kids participate in small local groups, known as chapters, under the guidance of adult advisors and professional staff, and work on any number of service projects or activities.
Up until now the JCC—or the “J,” as we called it—had been my escape. For years, Jeff and I had been “J-Rats,” effectively infiltrating every possible activity we could at the center. For the most part, our experiences at the J were sports oriented, and that was great for active kids such as Jeff and me.
But through the leadership opportunities at BBYO, I found a new second home and the social life I craved. People used to say that BBYO was my life, but that wasn’t really true. BBYO actually gave me a life beyond BBYO, in that my life finally changed direction when I started taking on leadership roles. I started as the corresponding secretary for my chapter, a job that involved regularly calling all thirty members and telling them about upcoming activities. It was a tedious job nobody wanted but me because it involved dialing, hoping someone would answer, and explaining the various activity options thirty separate times. This was long before BBYO or any of its local chapters had websites where all that information could be posted online or e-mailed. In that I was lucky, because I knew it was a great opportunity. Just like when I was standing in front of the class at school telling classmates about Tourette’s, as I was calling all the BBYO members in my chapter they were learning about me and learning how to interact with my Tourette’s.
My friend Al Snyder remembers first meeting me at BBYO when I was continually clearing my throat at meetings. I still stayed in the back of the room whenever I was in a group setting and tried to be as unobtrusive as possible, but people could hear me.
“The throat clearing didn’t bother me,” Al recalled, “but the laughter that accompanied the noise did. I had no idea that the p
erson making the noise was different from the boys who were laughing. The throat clearing and subsequent laughter made it difficult to concentrate on the meeting, so I looked around the room to find the person making the noise so I could tell him to shut up. I just presumed whoever was making the noise was doing it intentionally. I had not yet met Brad or learned of his disorder, so I was completely unaware that the throat clearing was attributable to Tourette syndrome.”
A few weeks later, I helped kill the laughter when I stood up at a BBYO meeting to explain Tourette’s. I think Al, along with the others, was astounded.
“I remember being fascinated by Brad’s speech,” recalled Al. “How could someone have such a disorder? How could I never have heard of it? I had so many questions.”
After I finished speaking I opened the floor for questions, and Al was one of the first to raise his hand. He asked if I made the noises when I slept. I laughed and said no, I didn’t, because I was so relaxed. That was my first interaction with Al, who was later to become, and remain, a very close friend.
Lenny was excited for me to do more in BBYO. He didn’t just want me involved. He wanted to see me active. In February, just three months after I joined, he helped me organize a program for the entire St. Louis Council in which I would educate them about Tourette syndrome. This was to be my first official speech in front of a really large group of people. It differed from the two previous times I had spoken to large groups because this was the first time I practiced and prepared actual material that was all my own. I knew exactly what I was going to say, whereas the other times, though I had an idea of what I would say, much of what I said was off-the-cuff, or answers to questions from Mr. Myer or the counselor at Camp Sabra.
Surprisingly, it wasn’t difficult. The only reason I was at all nervous at first was because I was a freshman and I was speaking to all ages of high school students. Even the advisors, who were adults, were listening. I was still at the age when being around someone older than me, even by just a few years, both impressed and intimidated me.
I spoke for a time about Tourette syndrome and about my life, and I was amazed to see that everyone was so interested in what I had to say that their eyes stayed on me. I was astounded to realize that I had my audience’s attention throughout the entire presentation. People didn’t talk to each other and they didn’t want to leave. What a contrast with just a year ago, when people’s eyes would slide up to me and quickly slide away.
When I was done, people came up to congratulate me. My surprise continued when I learned that they all wanted to talk to me—the entire St. Louis Council for BBYO. Everyone asked questions and I answered them as fast as they were asked. I was excited because not only did everyone now know about Tourette syndrome, they now knew about me.
A few months later, one of the people who had been at the St. Louis Council meeting asked me to speak at a regional BBYO convention in Omaha, Nebraska. I agreed for two reasons. First, it would give me the opportunity to educate even more people about Tourette’s. Second, it would allow me to get to know more people. I was quickly realizing that the more I gave my little speech, the more people knew who I was. If more people knew who I was, then there were more people supporting me. That support was crucial, and something I had been lacking for far too long.
We all need validation from our peers. Imagine spending years sitting in a room full of people who laugh at you every time you blink. You try very hard not to blink, because you know the blinking is annoying others, but before too long you have to blink and so you do blink—several times. Half the people in the room snicker at you, and the other half turn and give you cold stares. As the days and weeks go along, it’s hard not to become paranoid and withdrawn. You feel bad about yourself; inside you feel unworthy to be sitting in the same room as these people. Then one day you get up in front of the people who have snickered and stared at you your entire life and explain why you are blinking, and some of the people understand. Not all, but some. You figure if you get up in front of more people then maybe a few more will understand, and they do. Soon, you take every opportunity you can to educate people because you find that the support of the few who understand gives you courage and strength.
In Omaha, I stepped up to the microphone in front of a crowd of well over one hundred people and explained Tourette syndrome. Everyone seemed interested in what I said. After I spoke, I took questions. After I was done, people congratulated me, and I experienced a beautiful rush of success—something I had not felt very many times. It was a wonderful feeling.
From that point on, BBYO was my home, and I knew I was one step closer to my dream of someday being entrusted with a classroom full of children—even though I had no idea how or where that might happen.
My success in BBYO was helping me in all areas: friendships, schoolwork, self-esteem, and, most importantly, with my family. My dad and his parents still didn’t feel comfortable taking me out to a restaurant, but things were definitely less strained at family gatherings. I think they saw some of the success I was having at BBYO and thought there might be hope for me after all. While some of them still didn’t understand Tourette’s, they were realizing that maybe I wasn’t the lost cause they had thought I was.
One of the things that made family gatherings both better and worse was the presence of my dad’s new wife, my stepmother, Diane. Diane had begun to be a part of our lives prior to my Bar Mitzvah, when she and Dad were still dating. In her favor, Diane tried. She did everything right. But as far as Jeff and I were concerned, she wasn’t a welcome addition to the family. It wasn’t Diane; it was the position she held as Dad’s new wife that bothered us. Dad could have married anyone, but no matter who it was we would have resented her.
At the time, we had trouble with the fact that Dad loved someone in addition to us. As difficult and strained as our relationship had been, he was still our dad and we didn’t want any one infringing on his feelings for us. Then there was our loyalty to our mother. We felt we should support her, and one way Jeff and I thought we could do that was to dislike Diane.
On the plus side, Diane served as a sort of intermediary between Dad and myself. She was able to see the family dynamics up close from an outsider’s perspective, and that gave her a unique point of view. Looking back, I think Diane was influential in helping Dad deal with my Tourette’s. I may not have been the ideal firstborn son he visualized, but some good qualities were emerging and Diane helped my dad see those.
Diane remembers one time just before I entered high school when I visited Dad and Diane in Atlanta. She and I were running an errand, and I for once felt comfortable enough with her to begin talking about my lack of friends.
“I was flattered that Brad confided and opened up to me,” recalled Diane. “At the same time, I hoped I was going to say something that would really help and inspire Brad and that I wouldn’t blow it. Soon after that Brad became active in BBYO and the involvement made an incredible difference for him. His personality blossomed and he became a very popular leader, and with that came many friends. Over a relatively short time, Brad went from introvert to major-league extrovert. BBYO did so much to broaden his background and build confidence.”
A letter from a friend I met in BBYO, Pam Howard, supports the validation I experienced with my involvement in that group.
I always refer to Brad as “my hero.” I really admired his self-confidence, his courage, and his determination to do everything he wanted to do despite his tics and the terrible way he was treated. I was so impressed that he stood in front of hundreds of people and spoke about his tics in a way that made people feel comfortable around him. He always had a sense of humor about it and was always willing to answer other people’s questions. Brad always made me feel very good about myself and very comfortable being me, and I never felt judged or criticized by him; instead I was, and still am, inspired.
BBYO helped me in so many ways, especially with my confidence. BBYO came along at exactly the right time in my life. That was
good because in the coming years, as I faced the challenges of entering adulthood with Tourette’s, I was going to need every bit of confidence I could muster.
WHEN THE “THING” WINS
I BASKED IN A NORMAL HIGH SCHOOL LIFE, one that included friends, the yearbook staff, and the racquetball team. Finally, I had reached a level of acceptance at school that included a table in the cafeteria where I could sit and talk and laugh with friends while we all ate lunch. Just one year earlier, that simple thing was a fantasy. Of additional help was the fact that in my sophomore year, my principal from junior high school, Mr. Myer, moved up to the high school. It was wonderful to have support at his level. But while the students and teachers who were regularly in my school understood my Tourette’s and me, those who were not regulars often treated me unfairly.
One day we had a substitute teacher in one of my high school classes, and it was a day that my tics were especially bad. I assumed that the sub had been told about my tics, but apparently that was not the case. It didn’t help that this particular substitute had no patience with kids. She kept asking me to be quiet, even though I told her I had Tourette’s and couldn’t control my outbursts. There was still nothing worse than sitting in class and having a teacher ridicule me over what I couldn’t control. I felt embarrassed and helpless.