by Brad Cohen
I knew I was making noises; how could I not know? But I didn’t know why. So when my teacher challenged me to stand up in front of the class, it changed the way I looked at the noises. If the teacher, someone who is supposed to be a role model, would not accept me, then how could I expect the students to accept me? Her negative attention made me nervous and confused. Classrooms should be safe places for children to learn, but in this class, with this teacher, nothing was safe.
My mother instinctively understood the situation and fought like a tiger on my behalf.
“I was always down at the school, every day,” my mom said. “I taught school for five years, so I know what it’s like to be a teacher and have a class full of kids. But talking to the teachers and principal about Brad day after day was like beating my head against a brick wall. I might as well have been doing that, for all they listened to me.”
As much as the humiliation hurt, that teacher had a huge positive impact on my life. Because of that incident—and many others just like it—I eventually vowed that someday I, too, would become a teacher, but I would be the great teacher I never had. I would be a kind, caring role model for young people and make positive changes in their lives. I knew firsthand how much a few kind words can mean to a child, and how a little positive support can mean the world to a young person. It was a vow that only grew stronger as I grew older.
Meanwhile, a friend of my mother’s was close enough to the family to notice my problems and to feel personally concerned. One day he checked a thick medical dictionary in search of an explanation for my increasingly strange ways. He found the formal definition of a rare neurological disorder called Tourette syndrome, named for Dr. Georges Gilles de la Tourette, a pioneering French neurologist who first described an eighty-six-year-old French noblewoman with the condition in 1885.
Mom took her new-found suspicions to my doctor, who read the definition with great concern and then cried out, “Oh, my God. We made a mistake.”
He immediately ordered me off all the stimulants he had previously prescribed to calm my hyperactivity, and then he sent me to a neurologist, who confirmed that I had Tourette syndrome. There we learned that while stimulants can often help with Tourette syndrome, they don’t always; at the time, the medical community thought stimulants could make my Tourette symptoms worse. Over the next few months, through her continuing research, my mother became convinced that the Dexedrine I had been taking actually amplified the Tourette’s in me and made my condition far more extreme than if the doctor had never prescribed something so strong. Recent medical research, however, does not support that theory.
Over the years I have found that each person has his or her own chemical reaction to medication, and everyone has to find what works for them. My situation with Tourette’s and that particular medication was unique to me. Someone else may have had an opposite reaction. While medical studies do not indicate a connection between Dexedrine and my developing Tourette syndrome, my family and I do believe this is how my situation became so severe. Our belief is that my tendency toward TS was an inherited trait, but that the doctor’s decision to keep me on the medication, even after the tics began to manifest and after my symptoms continued to worsen, was a choice that actually intensified the disorder’s effects. Soon after the diagnosis we switched doctors.
Beyond speculation about what brought TS into my life, there was a large degree of consolation in knowing that my uncontrollable behavior actually had a medical name. Tourette syndrome is rare and certainly strange, but it is still a known and an understood neurological condition in the world of medicine. That was a huge relief, as it is so much easier to deal with a specific problem than an unknown. Plus, I could finally explain my tics—to others and to myself.
Now, at least when I was at home, I didn’t have to fear having my unconscious or unstoppable tics interpreted as willful misbehavior, even though I’m not sure my father was fully convinced. I think he suspected at times that I’d just come up with a foolproof excuse to continue being obnoxious and to torment other people.
Of course, that point of view is exactly what makes Tourette’s socially dangerous for anyone who suffers from it. Without meaning to, my father taught me my first lesson in coping with the negative reactions that are part of everyday life for people who vocalize in movies, libraries, restaurants, waiting rooms, and elevators—anywhere silence is expected. And funerals? Please.
Now that my mom had an answer to give, she couldn’t wait to tell others that there was a real medical condition causing my problems. As for me, I was glad these medical definitions offered explanations for my growing troubles, and I was happy to accept any slack that I might be cut for it. My one small problem was that Mom knew every little bit of information for some time before she chose to share it with me. She first went through a period of figuring things out for herself, then working through them with family and friends, then finally with teachers and with me. I was a little perturbed that I was at the end of the information list, but by the time something trickled down to me, Mom knew just how to explain it so that it made sense. And she always, always kept it as positive as circumstances would allow.
None of the medical literature, however, had anything to say about how I was actually supposed to live with all this stuff. Mom often called members of the Tourette Syndrome Association and fired off endless questions. When she got the answers, she would share them with my teachers, my dad, and my grandmother Dodo. They were all astounded that my odd ways actually had a medical name. To them, it made no sense that there was some sort of recognized medical condition that made a person twitch and make noises. No one had ever heard of such a thing. This was long before Tourette’s became a highly rated topic for television dramas. It really struck them as odd—as if they had been told my condition was the result of witchcraft.
By this point, my mother was really having a time of it. She was suffering from extreme guilt, thinking that she should have instinctively known that the medication could have caused some of the problems. She thought that maybe if she had stayed married I wouldn’t have had so much stress and anxiety, and then maybe I wouldn’t have all these strange tics. Then she thought God was punishing her for some unknown thing she had done. Or not done. She was lonely and fearful and for years lived one day at a time. In addition to all that, Jeff and I literally ran Mom ragged with our hyperactivity, and her emotions were on a constant roller coaster.
My mother also hid her devastation over the knowledge that there is no cure for Tourette’s. Each day after school, no matter what grim news about my condition she may have learned, Mom shielded me from her anxiety and remained bubbly and upbeat. She continued to hope that if she had more information and more support it would help my teachers in how they worked with me. She wanted to find strategies for the classroom, so she found a local chapter of the Tourette Syndrome Association and we excitedly planned to go to its next meeting. We can’t remember now whether I was in grade five or six at the time, but in any event Mom’s thinking was that she could get some ammunition for dealing with the school system. Then, as Jeff and I had never met anyone with TS—other than myself—we could get together with others who had been diagnosed. Maybe some of them could even become role models for me. Or friends. I was having a very lonely time of it.
I know Mom had our best interests at heart, but things didn’t go exactly as planned. The meeting was held in a church basement, in a dark, low-ceilinged room that made us feel uncomfortable the moment we walked into it. The members of the support group, mostly adults, were all crowded into this little room. It was an interesting group, as they all had varying degrees of Tourette’s that manifested in different ways. There were the eye blinkers and the nose twitchers, the foot stompers and the neck jerkers. Often these symptoms were all seen in the same person. Then there were those who yelped, coughed, grunted, barked, and shouted. Some touched other people obsessively, or repeatedly banged their head on the nearest handy object. And there were a few who ha
d coprolalia, a much rarer symptom of Tourette’s that involves shouting obscenities.
The people who had Tourette’s all displayed symptoms far worse than mine, and I was disappointed to find that none of the few kids there were enrolled in public school. All had been sent home to be tutored—privately—either at their own request or at the request of school administrators. I tried talking with a man, but he was constantly making loud screeching noises and flinging his arm in my face—never hitting me, but coming within millimeters each time. I kept my head still and tried not to embarrass him, because I knew he couldn’t help it. But the first time he did it, I was so startled I jerked backward and almost fell off the folding chair I was sitting on.
The people had several things in common, I discovered. It was quite obvious that none of them were social. No one there was even trying to be accepted in mainstream society. The adults were all unemployed, many were on some sort of disability plan, and the kids with Tourette’s were home, not doing much of anything.
The adults in charge were upbeat and optimistic, but the group members shared a prevailing pessimism about how hard it was to cope. This viewpoint was in direct conflict with my positive nature and the positive spin Mom taught us to put on hardships. Where, we wondered, were all the positive people with Tourette’s? Where were the people with Tourette’s who were trying to live in society, who were persevering day after day to make a better life for themselves and their families? They certainly were not in this room.
My mother had hoped that the people at this support group meeting would show me that I could live a full and normal life. Instead, these people had embraced a life of sadness and despair. Mom, Jeff, and I left the church basement knowing it would be hard to return.
The positive I drew from this meeting was that it allowed me to see the other side of Tourette syndrome. It allowed me to see other people with Tourette’s—people with symptoms far worse than mine—and experience the discomfort of being around them. More importantly, the meeting allowed me to see what my existence could become if I let Tourette’s take over my life. The people I met that day were so down and depressed that I made a conscious decision not to be like that. I didn’t want to be someone who didn’t participate in life and who then complained about it. I wasn’t going to let Tourette’s dictate who I was as a person. I wanted to be seen as “Brad, the funny guy, and oh, yeah, he has Tourette’s,” not “Brad with Tourette’s, and oh, by the way, he’s kind of funny.”
I also didn’t want my mom to be depressed. I saw how easily a negative attitude could infect the people in my home and pull us all down. So in several ways, this dark, disheartening meeting became another pivotal experience in my life.
One example of my decision to take a positive approach is my viewpoint about attending movies. With TS it is very difficult for me to go to a movie because my barking noises distract other people who, like me, have paid their hard-earned money to watch the movie. But rather than despair about the fact that I can’t go to the movies, I look at it from a different angle. I think of it as choosing not to go. Certainly I can go if I really want to. The Americans with Disabilities Act (ADA) has ensured my right to attend public events such as movie showings. Instead of going on a Friday night and disrupting the movie with my series of woops and rah-rahs, if I really want to see a movie I go late on a Sunday morning or at another off-peak time when there won’t be a lot of people there.
Another way of looking at it is that I have a very wide circle of friends and my social life is quite full. I always have something to do, so if I have to wait until a movie comes out on video or DVD, or until it is shown on television, that’s okay. But to get dejected about the fact that I “can’t” see a movie is counterproductive, because if I really want to, there are ways to do it.
The support group meeting, in a roundabout way, also reinforced my never-say-never philosophy, especially as it relates to Tourette’s. That day, I learned that I didn’t want Tourette’s to hold me back from anything in life that I chose to experience. Since then, I have realized that a positive outlook breeds success, just as a negative outlook breeds failure. How can you not have some success when you make a point to surround yourself with positive and successful people? It is virtually impossible. Besides, people don’t want to hear all your complaints. If you ask others how they are doing, do you really want to hear how sad and depressed they are? Of course not. So I have made it a point always to be positive, even if I am having a very tough day.
What the support group meeting did not do was give me ideas for how to cope with the members of my extended family. They turned out to be just as skeptical about Tourette’s as my teachers were. My relatives just couldn’t believe I had no control over the strange noises and twitches and compulsive knee knocking. It was easy for me to see that my father, my grandparents, and my aunts, uncles, and cousins were all uncomfortable around me. You know things have changed when all of a sudden your grandparents don’t want to take you out to eat anymore because you embarrass them. These were my dad’s parents, and they thought I was just a troublemaker who wanted to be the center of attention.
My uncle Stu, who is my dad’s brother, said he didn’t think his parents ever really understood Tourette’s.
“Brad’s grandfather I think was more tolerant about it than his Nana was,” Stu recalled. “She would visibly cringe every time Brad made a noise. Every time. I can’t imagine how terrible that must have made Brad feel. She never understood the concept of Tourette’s or that Brad really had no control over his behavior. I think at the time she felt that she was being punished, and she worried about that. She did love Brad, but she was a worrier.”
My wild behavior only encouraged the worrying. In addition to the barks and woops, I developed some additional strange tics during the course of grades five and six. Off and on I had a smelling tic—a strong urge to sniff things, especially books and paper. Newspapers were the worst. Every time I saw a newspaper, I’d have to smell every section of it. After ten minutes of smelling the newspaper, my nose was black from the ink. I tried to stay away from newspapers, but then I started smelling the pages in my schoolbooks. Imagine sitting in class next to a kid who every few minutes popped his head down to the floor, took a big whiff of his books, then popped back up again.
I also began chomping my teeth so badly that I once chipped a tooth while drinking out of a glass cup. In order to help counteract this tic, we bought a mouthpiece similar to those worn by football players. I hoped it would help, but it just made things worse, as all I thought about after that was chomping my teeth. The urge to do it over and over again was irresistible. (Now, as an adult, I should still use a mouthpiece at night, but I chomp down so hard on them that I keep breaking them, so I’m trying to do without.)
With Tourette’s, tics often come and go. After the chomping tic left, the touching tic began. Not only did I need to touch things, I needed to touch them in a certain way. Sometimes I needed to touch something with my left hand, then my right, then my left again, alternating hands until I touched the object just perfectly. That tic gave way to the sound tic. When turning up the volume on the TV, I needed to do it in a particular way. The volume had to be just so. The same was true with the radio in the car, and the slamming of the car door, and the hanging up of the telephone. If things didn’t sound just right, I’d do whatever it was over and over and over again until it made that perfect sound, the one I needed to hear. Even though I was never diagnosed with obsessive-compulsive disorder, this is very typical of OCD behavior.
So you can see why my extended family thought I was a bit odd. And it didn’t help that Jeff was also hyperactive. It got to the point that my aunts and cousins didn’t want to be around us, the “wild kids,” and our already strained family gatherings became less frequent.
During all this, Mom did her best to keep both Jeff and me active. I tried my hand at music, playing for a time both cello and trumpet. I wasn’t good, but it was fun, and the tics weren’
t so bad when I was playing. It also got me out of the dreaded classroom—anything to get me out of class.
But sports were my salvation. I enjoyed playing three positions on a local baseball team: catcher, second base, and outfield. I also played soccer, swam, took karate, and rode my bike. I loved the physical activity, even though I never excelled at any one sport. Who ever said you had to be good at something in order to enjoy it?
The other positive effect of sports was that I was put in contact with other kids. My circle of friends had shrunk fast, as I changed from being the funny kid with the froggy voice to the weirdo who made all those noises. Additionally, new medication I was taking for my TS was causing me to gain weight—thirty pounds in just a few months. So, in addition to being a weirdo, I was becoming the fat kid on the block. Let’s see. I was now the strange fat kid who made noises and had no friends. How’s that for a challenge to your self-esteem?
Most of my “friends” by this time were Jeff’s friends. He’d invite them over to the house and I’d end up playing with them, as we were so close in age, and really, how else was I going to spend my time? Sometimes we’d play “home run derby” and try to hit the ball over the neighbor’s house. One time I actually succeeded! But I didn’t want to always hang with Jeff and his friends. Even at that age I realized that even though Jeff didn’t mind sharing, he needed his own time with his own friends.
“Because Brad really didn’t have any friends at all, I was probably the one who spent the most time with him,” agreed Jeff. “I stood up for him over and over, time after time, but kids are mean and most of them didn’t listen. A lot of them were pretty cruel to Brad.”