Rachel was a winner of a 2020 NJCTS Scholarship Award.
This was the essay she included with her application.
I was ten years old when my cousins were struggling, navigating their way around a recent diagnosis of Tourette Syndrome, or T.S. My mom noticed symptoms in me. “I don’t have tics.”, I would scream, but inside I had a feeling I did. I just did not want it to be true. I refused to believe I could be different from my classmates.
It was a cold January morning. I always struggled to get up on time for school. My mom constantly rushed me. This particular morning, she was not pushing me as hard to get moving. What I didn’t know was that she wasn’t driving me to school. We were going to see a neurologist. A sudden wave of panic came over me. For once, all I wanted to do was go to school. I fought her the entire morning. I cried all way.; for I was not ready to know the truth.
I sat in a small, plastic chair, waiting. I had no clue what was about to happen. A short, stout man entered the room. He tested my reflexes and asked me odd questions, like, “Outside of your family, who do you know who remembers the Nickel Pickle?” I did not understand how this could prove I had T.S. I tried as hard as I could not to make any little movements, so he would think I was normal. At the end of the appointment, the doctor’s expression was not somber, his tone was not concerned. He just said, “Yup, you have Tourette”.
I sat in that small, plastic chair, on that cold January morning, and felt nothing. I did not feel sad or angry. I was completely numb. I had the diagnosis, but my denial continued. All I cared about was fitting in. I did not want to be different from my classmates. I did not want to stand out. But how could I not, when my body betrayed me by making my arm jerk, my chin tap my collarbone, and forcing my hand to slap my leg? I also had OCD and anxiety. Holding in my tics was exhausting and it prevented me from concentrating on school work. Tourette Syndrome is very unpredictable. I became frightened and depressed.
Fortunately, we found the New Jersey Center for Tourette Syndrome, or NJCTS. They have many valuable resources to help people with Tourette and their families. Through them, I met some incredible people with T.S. NJCTS made me realize Tourette isn’t a dead end. It’s a fork in the road. I could live in anger and embarrassment, or I could embrace it, and help others make this same realization. NJCTS trained me to give presentations in schools attended by someone recently diagnosed with T.S. I educate about T.S., advocating for other kids with Tourette, who were scared to advocate themselves. I was so excited to be a part of it. I wanted to be support for someone who felt the I , once, did, I wanted them to see everything would be ok. I wanted to be a role model for young kids who were struggling.
To this day, I continue to be a Youth Advocate for Tourette Syndrome. I have the privilege of going into other schools and sharing my experiences. My favorite part is afterwards when students come up to me with questions and tell me how much the presentation meant to them. Someone once asked me, “Do you wish you weren’t diagnosed with T.S.?”. I immediately knew how to answer. No, T.S. has given me so many incredible opportunities. I have met some of the people I am closest to because of Tourette. If I was never diagnosed with Tourette, I would not be the person I am today. T.S. has helped me to build courage and self-respect of which I am truly proud.
