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2017 NJCTS Youth Scholarship Award Essay: “What It’s Like to Be Me”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest. I hope you enjoy it!

Rachel M.

I have Tourette but Tourette does not have me. I have told myself this from day one, when I was diagnosed at 5 years old with Tourette Syndrome. It is a part of me and I let it help describe what kind of person I am. I feel like I am stronger because I have had to deal with this; more aware that I have seen other people just like me and some even worse; smarter because I now know how to deal with my disorder and how to figure out my goals. There are times when it gets rough but I learn from those times; how to handle my body differently; how to distract myself so I do not hurt myself; how to advocate for myself and how to make up work quickly at school; how to calm myself down. Things that help with my tics, are things like, petting an animal, crafting something (like a wreath), playing games on my phone, playing on my laptop, hanging with my friends, getting a hug, and just concentrating on something for a while. Since there is no specific medicine to cure Tourette, it has been experiments from day one. Try this, and try that. It gets frustrating when things do not work and it is relieving when medicines decide to help. And sometimes, the side effects from the medicine were not worth it. It was actually better to be ticcing than to be on a medicine that made me gain tons of weight, or have changes in my hormones, or get a huge permanent birthmark. From first grade through middle school, I would stand in front of my class and advocate for myself; telling my classmates about my disorder. I loved hearing when they had questions. It showed that they wanted to understand more about my condition and more about me. There were some kids that were not so nice, but everyone has those kids, regardless of if you have a disorder or not. I just kept myself away from those kids and kept moving forward. In high school, all the bullying magically stopped. It was probably because I completely switched school districts. But, I do have to admit that there were times where those kids got to me; made me wonder why I was not born “normal”. But in reality, there is no normal. You can be, whoever you want to be in life. I learned not to be the person that everyone wants you to be, but be the person that you want to be. Be a person that satisfies you. Do not let anyone stand in your way just because you have a disorder or you have acne, or you are not as smart as some of the other kids. That is just you. You are special in your own way. I have learned that throughout my years of dealing with this disorder, I cannot stop it. I could not prevent it. I was born with it. Just like people are born with blue eyes or freckles. Be who you want to be in life. Don’t let anyone or anything hold you back. I am living the life I want to live. I am making something of myself. I am going to succeed. For a while, I let my tics overtake me. And I was just getting lower and lower. I did not know if they would ever let up and stop. Finally my friends told me to hold my head high again and push through. So I did. And yes it was hard. But I succeeded. Maybe I will be able to tell more people about my disorder, the older I get. Maybe I can learn to advocate for myself better so that I can create a club. Maybe I can meet more people with similar or even the same disorder and we can discuss our problems and how we overcame them.

NJCTS Admin

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