Matt Has Tourette Syndrome
Nearly 150,000 kids in the U.S., ages 6 to 17, have been diagnosed with Tourette syndrome, a nervous-system disorder. Matt, 14, is one of them.
By Matt Mercer, as told to Jane Bianchi
One time in my sixth-grade math class, my eye started twitching superfast, and I couldn’t make it stop. It made a loud clicking noise.
My substitute teacher looked frightened. She picked up the classroom phone, dialed the office, and said (in front of my whole class): “This boy is possessed.” She actually thought there was a demon inside me! My classmates and I laughed, because we all knew what was really happening.
The year before, when I was in fifth grade, I was diagnosed with a health disorder called Tourette syndrome (TS). It means my brain sends signals to my muscles that I can’t control, causing what are called “tics.”
Eye-twitching isn’t the only tic I get. Sometimes I clear my throat or crack my knuckles. At a restaurant, I might turn a napkin into a paper ball and throw it. Once I had the urge to keep hitting a metal locker until my hand hurt. (A lot of people think that everyone with TS shouts curse words, but I don’t. Only a small percentage of those with TS do.)
Sometimes I’ll feel a tic coming on, so I’ll try to distract myself. I’ll close my eyes, tie my shoe, or walk in the other direction. Unfortunately, there are no medications that can help me, and there is no cure. My tics might fade as I get older—or they might
I try to look on the bright side, but living with TS isn’t easy. Sometimes, when my family wants to go to Applebee’s, I’ll say no. I’m too afraid I’ll humiliate my parents in public.
Solving a Mystery
I first started getting tics way back in second grade, but I didn’t get them often—only about once a month. I didn’t know what was wrong with me. So if a classmate noticed that my eye was twitching, for example, I’d say: “I have allergies” or “I have an eyelash in my eye.”
But as I got older, I started getting more tics more often. By fifth grade, I was getting them every day. That’s when I was diagnosed with TS.
When I found out, I was relieved. At last, I could truly explain to my friends why my body would freak out on me!
The first person I told was my best friend, Marcus. We’re like brothers. He said, “Oh, I get it. I have ADHD. I can’t control that either.” He was totally cool about it.
After that, I told a few other friends, then word trickled around school. My mom started having parent-teacher conferences too. We wanted my teachers to understand my tics—and not think I was just misbehaving.
Dealing With Haters
Most teachers and classmates are supportive. But some people are just plain mean. There’s one bully at school who keeps threatening to shoot me with metal “hornets,” which are little pieces of paper with paper clips that you flick at people. Whenever that happens, I tell him to stop. Then I tell the principal, and my mom talks to the school administrators—she always has my back.
People who threaten me don’t scare me. They’re just haters, and it’s what I think about myself that matters. If someone tries to start something with me, I speak up and report him. Then I drop it and go on with my life.
A lot of times, people bully me just because they don’t understand what TS is. So I spend a lot of my free time trying to educate others.
I’m proud that in March 2012, my mom encouraged me to enter an essay-writing contest to become a Youth Ambassador for the Tourette Syndrome Association, a nonprofit that’s dedicated to figuring out the cause of—and the cure for—the disorder. I was accepted!
I flew to Washington, D.C., to try to convince Congress to fund TS research. I spoke for five minutes in front of 20 congresspeople. I was so nervous, but it worked! We got the funding.
Now I also travel to elementary, middle, and high schools near my hometown in Grovetown, Georgia, to teach people about TS. It means a lot to me to be able to share my personal story and answer questions.
A lot of people are scared of things they don’t understand, like TS. But once I explain what TS is, people tend to calm down and realize that it’s not that big of a deal. I’m a normal person—just like them.