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Getting involved will change your life

I was recently asked to talk about a person who I admire who has Tourette Syndrome. What better way to answer this question than with a blog post. So, who do I admire? Jennifer Zwilling — the creator of the National Youth Ambassador program.

From the time I was diagnosed with TS at age 6 until my freshman year in high school, I devoted all my energy to hiding my tics when I was in school. I had seen my first-grade class relentlessly tease Eric, a boy who had uncontrollable outbursts, and I was definately not going to be a victim like him.

I was even afraid and embarrassed to tell my friends about my disorder. I was always exhausted from working so hard to hide who I really was.  Many years of cognitive therapy and medications allowed me to have some control over my tics, but it was not easy.

The big change came in high school, when as a freshman I came clean. I realized that if I wanted to focus on academics, I would have to stop devoting so much energy to hiding my tics.

During a discussion with my doctor about my ticks, she compared TS with diabetes and peanut allergies. She stated that people with diabetes don’t hide that they get insulin shots and students with peanut allergies don’t hide that they sit at a peanut-free table at lunch.

Similarly, I should not hide who I am simply because I have TS and tic. I started to realize that my disorder was not something that made me “bad” and it was not my fault that I suffered from TS. My doctor suggested that I look at some TS websites for more information.

Later that night, I found the TS Youth Ambassador Program online. I watched Jennifer Zwilling’s Youth Ambassador video and I read all about her: She won the VH1 Do Something Award, attended Duke University,and was living an awesome social life! “I could do this… It’s OK to be who I am… Jen did it! So can I.”

I applied for and was accepted to represent NJ at the Youth Ambassador Training Conference in 2010. At that Training Conference, I met an amazing group of smart, brave and interesting kids who had TS, just like me.  Thank you, Jennifer, for showing me that I was not the only person in the world with TS.  Thank you, Jennifer, for exposing me to this fabulous program that you developed and that now helps thousands of children nationwide.

Now I lecture at schools, just like Jennifer Zwilling. Now I spread the word about TS and the bullying that often accompanies it.  Now I am responsible for teaching students that it is wrong to bully others.

I am so appreciative for the New Jersey Center for Tourette Syndrome and their staff. First and foremost, they gave me the courage to be ME! Because of NJCTS, I know that  it is OK to have TS, that I did nothing wrong to get TS and that it is really just the same as having diabetes or a peanut allergy.

NJCTS staff and programs helped me really understand that it is not OK for anyone to make fun of me or anyone else because of TS or for any reason.  With the support of NJCTS, I have come clean and will tell anyone and everyone that I have TS and I will discuss it — especially in the hopes that I can help someone else who has TS or any other disorder be proud of who they are.

NJCTS also afforded me great opportunities to lecture on their behalf and as a result I have developed public-speaking skills. I have represented NJCTS on many occasions, including at Yeshiva University Graduate School and on a segment on NJ News Channel 12.  And NJCTS has always supported my work. NJCTS has introduced me to the most incredible people. I wouldn’t be the person I am today if it wasn’t for NJCTS.

PLEASE, get involved with your local TS chapter! The people you will meet along the journey, while being involved with incredible association, will change your life.

EmilyF

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