2016 NJCTS Youth Scholarship Award Essay: “Living with Tourette Syndrome”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

MichaelS

MichaelS

I pondered what it meant when I was diagnosed with Tourettes. The doctor explained to me there was no cure, and that with time it’d get better, but he said Tourettes will be a part of my life forever. I had finally figured out the answer as to why I constantly rolled my eyes, or why I occasionally let out an obnoxious vocal sound. As a confused 4th grader, I didn’t realize this would soon become part of my identity. After the diagnosis I was uneasy about telling people, even my close friends, why I did all these strange things. I was scared they’d think of me differently or put a label on me. Every time my classmates asked about it, I’d reply with an indifferent “I don’t know.”

I remember showing up to a basketball camp and as we were huddled around a coach, he was lecturing us. My eyes rolled uncontrollably. He stood up and then scolded me, talking about how disrespectful I was and I was forced to run to the point where I felt like I had to throw up. I was too frightened to tell him it was because of Tourettes. After that fiasco, I realized it was time to tell people.

It took me 3 years to finally muster up the courage to tell a couple of my close friends why I had been rolling my eyes, crinkling my nose, and letting out vocal sounds. I explained to them that they were called tics that unfortunately forced me to do some strange things. I told them I couldn’t suppress these tics or else I would feel like I couldn’t breathe. I was nervous as to how they would react. I didn’t want them to think of me differently. They all essentially said the same thing: “It doesn’t matter; you’re not different; you having Tourettes doesn’t change anything.” I was shocked. I thought I’d receive some questions, but everything was alright.

Sure there were instances throughout my life where people asked questions and said mean things. Soon I realized that having Tourettes was a blessing in disguise: I was able to talk to people and educate them on Tourettes. I was trying to eliminate the stereotype that all people with Tourettes curse excessively or are constantly mumbling random words. After telling people about my neurological disorder I became cognizant of that fact that this was me, I couldn’t change it even if I wanted to.

As I got older, more and more people began to put a face to Tourettes and it was mine. I was uncomfortable with this at first, but it was a component of who I am; I’m not complete without Tourettes. People were able to see that anyone can have Tourettes and that sometimes we may not even know they do. Without Tourettes I feel like I’d be a different person, maybe a little more normal, but “normal” can be boring. Tourettes is a part of who I am: it’s an essential part of my identity. As I grow up, I realize it will forever be a part of me: maybe a small part, but a part nonetheless.