My Journey – Kyle S.

Kyle was a second place winner of a 2023 NJCTS Scholarship Award.

This was the essay he included with his application.

At five years old, I was diagnosed with Tourette’s; it is a neurological disorder characterized by tics (involuntary movements and sounds). Tourette’s causes me to do some weird things. I might flap my arms, hum, or stick out my tongue. But luckily at the age of five, no one seemed to care, because as hyper, little kids, we were all weird in our own ways.

Unfortunately, as I got older, my Tourette’s grew worse, and I started to feel alienated from all my peers. I felt like my friends didn’t want to spend time with me. Was it something I did? Had I changed? When I walked down the hallway, I felt them looking at me. I touched my toes, they touched their toes. I hummed, they hummed. I wanted to go back to when no one seemed to care. I became quiet and reserved, and wouldn’t leave the house and see friends as I was scared of what they’d think about me. Tourette’s was consuming my life.

I hated my Tourette’s. I couldn’t control my own body, it felt so demeaning. When my Tourette’s takes over, I watch my body and actions fail me. I turned to medicine, but that failed me too. The happy energetic person I once was, was drowned out by the numbing side effects of the tic-suppressing drugs. I could barely recognize myself. I made a decision to stop the medication and determined it was time for me to approach my Tourette’s differently. It is an incurable lifelong disorder. Did I really want to waste my life away fighting it, trying to hide it? I was about 13 when I had this epiphany and I chose to embrace my Tourette’s. If I couldn’t cure it, I felt that the least I could do was accept it and help others understand it. If people knew more about it, maybe, just maybe, people wouldn’t be so scared of me.

I joined a charity, New Jersey Center of Tourette’s Syndrome, where they taught me about public speaking, how to educate others about the syndrome, and how to share my own experience. I started with a speech at my school, and eventually spoke at several other schools and hospitals. As I got better at speaking, I got invited to more events. At Rutgers University, I met with medical students to talk about my personal experiences and answer their questions, and at a police academy in Sussex County I helped with their Crisis Intervention Training by explaining triggers and suggesting ways to destress situations. I felt a sense of pride and freedom that I had not felt before from doing all these different events. I was no longer scared of my Tourette’s. I no longer felt the need to hide, I grew comfortable in my own skin. Eventually, a new charity reached out to me, the Tourette’s Association of America. They wanted me to speak at Capital Hill to lobby on behalf of the Center for Disease Control and Prevention for extra funding for Tourette’s Syndrome, on a national level. I met with the teams of several senators and congressional representatives of New Jersey including Mikie Sherrill, Cory Booker, and Bob Menendez to explain Tourette’s Syndrome and try to convince them to sign our bill that we were introducing. While the bill is yet to be passed, all of the New Jersey Representatives have signed it. Speaking at Capitol Hill, I was able to see how far I had come. I went from being a scared kid to a courageous kid standing in front of Congress.

There was a time where I saw my Tourette’s as a handicap, but now I must give it credit for making me the person I am. Adversity transforms us all and I owe a lot to Tourette’s for helping me discover my identity. I am now proud to say, I have Tourette’s.



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