The second annual New Jersey Walks For TS event in Mendham, N.J., will take place tomorrow, Nov. 19, at Borough Park. Following is an account of how teenager T.J. Stanley, the inspiration for the event, has dealt with Tourette Syndrome since being diagnosed with with the condition at age 11.
When I first found out I had Tourette Syndrome, I wasn’t sure what it meant. What I was sure of was that I wanted to find out as much as I possibly could about the neurological condition that affects as many as 1 in 100 people.
After several years of learning what it meant to be a teen with TS, I, then 15, felt confident enough to create a documentary about what it is like to live with Tourette. Titled “TS Has TS” and available for the world to view on YouTube, the documentary was the birthing point of the New Jersey Walks For TS event.
But for me, now 18 and having fought many battles against TS over the years, being able to explain to the public what Tourette is and how it affects someone is only the tip of the iceberg. And that tip begins with what are known as tics, repeated involuntary movements and uncontrollable vocal sounds.
I picture them (tics) as levels. They can come out softer or louder. They can have a lot of expression to them. When I first started (with TS), I couldn’t stop moving my arms. I had no control over what I was doing. It was very scary. I felt like I was possessed. My brain just had a malfunction, and I had to do something that I didn’t want to do. One soft tic would build up to something worse.
In the weeks and months after my initial diagnosis, I knew things would get much worse before they would — or even could — get better.
I would sit on my couch in the living room and hit my head against the wall. I would keep sniffling and get a bloody nose in school. The outcome of everything you do is terrible because you didn’t know what was going on. I had to tell myself, “I have something now, and it won’t let me go until it gets what it wants.”
Initially, I was put on a medication called Keppra, but that caused me to stay away from people. I didn’t want anything to do with anyone and often would stay in one corner of a room because I was “scared of life.”
It was a kick-start to make me feel better and calm down the tics, but it backfired. I am now on a drug called Levetirace. The dosage is three tablets in the morning and three tablets at night. It kind of makes you tired. It takes certain parts of your body and mellows them down so you don’t want to move.
Nonetheless, I have learned over time to master my tics and the other urges associated with Tourette Syndrome. I am able to suppress the tics in public, but must let them out — sometimes in extremely strong, painful fashion — when I am alone. It’s a tactic that I believe has helped me and those around me, such as family and friends, adapt as much as possible to the condition.
I like where I’m at now. I’m in control of it and am aware of everything I’ve been going through. I feel like people think I’m weird. People are supposed to help you in any situation, and at this point, they’re scared of you. They don’t want anything to do with you. But I’m learning to not let that bother me anymore. It doesn’t bother me anymore.