Tara is a 2019 NJCTS Scholarship Award recipient and was voted NJCTS Youth Advocate of the Year.
This is the essay she submitted with her application.
My name is Tara B and I am a senior at Nutley High School in New Jersey. I look and act like your average teen girl with one exception, I always yell “POP”. This is not something you hear every day, I know. I am here to explain my story and trust me, it’s interesting. I was born 4 months early weighing in at 1 lb. 10oz. I spent 126 days in the hospital and many months after visiting specialists. My parents thought the hard part was over. They were wrong. When I was 3 years old, I developed my first tic. I began to “squeak” every time I was excited. Everyone thought it was cute, except my dad. He knew something was amiss. It wasn’t until I was 7 that I was diagnosed with Tourette Syndrome (“TS”). Life did change but not immediately.
As I was growing, the tics started growing with me. I had pretty bad motor and vocal tics. I’m not entirely sure that I should use the word “bad” when describing my tics but at the time, that is certainly how they felt. I was constantly twitching and yelling. I was really loud.
We started the journey of medicine. Neurologists suggested one medication after another. I experienced many side effects but not much relief from the tics. For quite a few years, I stopped being me. I was extremely reserved, wasn’t able to be social or even make eye contact when interacting with people. I began to lose many friends and ended up spending most of my time alone. This was during the hardest years for a teen (middle school), never mind a different teen.
I would go to school each day and pretend everything was fine. It truly wasn’t. I couldn’t figure out how to overcome the anxiety I felt each day watching everyone creating friendships and making plans. At the end of 8th grade, I was taken off the medication. Almost as soon as I stopped, I felt like my old self. This was when I realized that I’m just like every other teen. Okay, I do make some noise, but I’m fun and personable. I decided that high school was going to be a new start and that’s exactly what it was.
I knew I needed to take a different approach. This took courage and a lot of that courage came from the activities I was doing with NJCTS. I was advocating not only for myself but for others as well. It was not going to be a burden to have this diagnosis any longer. I embraced the fact that yes, I am unique, but everyone is in their own right.
Even though I am not defined by my diagnosis, it did shape me into the person I am today. I am stronger because I am able to adapt to certain situations. When I was younger, it upset me so much when a stranger would laugh or stare at me. Now, I educate and if that doesn’t work, I come away feeling bad for the person. I do find that most people just need to learn. I believe that I am compassionate and empathetic toward people. I understand if someone is hurting and do feel the need to find a way to help. While I was reserved for many years, today, I am outgoing and I love to meet new people. I’m no longer afraid. TS also gave me a sense of humor. During my school years, one of the ways for me to get through was to laugh or make jokes. It was easier that way and I believe it made other feel comfortable. I can twitch a word or phrase and laugh at how funny or awkward it sounded. This usually leads to conversations about TS. I love to state the facts that I’ve learned from being involved with NJTCS.
Instead of thinking, “why me”, I now know I am blessed. I’ve made lifelong friends that experience the same thing. Without having TS, I may not have ever crossed paths with some of the friends I’ve made. My family and other friends also understand TS now and in some ways, they are also TS advocates. I’ve taught them that it’s okay and that with most people, they just need to receive information. Life isn’t always easy and I can honestly say that I’m lucky to have learned that at such young age. I’m better prepared to deal with conflict. If there is one thing that I’ve learned over the years, it is that Tourette Syndrome will not control my destiny, I will.
Today, I am more than ready to take on the next chapter. College here I come!