Tourette Doesn’t Have Me – Anonymous

The author was one of the 2019 NJCTS Scholarship recipients. 

This is the essay they submitted with their application.

“I have Tourettes but Tourettes doesn’t have me”. This is a common saying within the community of people with Tourettes Syndrome (TS). TS is a condition where you have “tics” which are uncontrollable noises or movements, such as touching your nose repeatedly or coughing over and over. You can not control tics and if you try to ignore them, it is nearly impossible to focus on anything else until you do them. I was first diagnosed when I was eight years old. From when I was diagnosed until age thirteen, I struggled with tics and I believed nobody else was going through similar experiences. I had to learn on my own how to cope with the sudden movements and noises Tourettes would make me do. Yet, with the help of medication my symptoms significantly decreased and are under control. However, I still wanted to meet other people who understood what it was like to have this condition. This came to fruition when I was thirteen and my mother found a one week sleepaway camp for children with TS. Attending this camp changed my life in every way imaginable. In fact, camp has had such a profound impact on my life that I have attended every year since. Furthermore, it sparked a period of personal growth and a new understanding of myself by gaining confidence, learning leadership skills, and a sense of acceptance.

First, attending camp allowed me to gain the necessary confidence I needed in social settings. It gave me the ability to not let certain behaviors interfere in my life, which led to a feeling of control. The camp consisted of a group of children from all different places; united by one major commonality. It was a place where we were free and there was no judgement. We bonded by sharing experiences of when TS had made life hard for us. I learned that other people had the same struggles I did. Some examples of the struggles were: wanting to just fit in, and receiving the same unwanted looks from people who did not understand. I felt at home at camp, and my personality thrived there. I felt free to be who I truly was, a person who is outgoing and sociable. this led to a new-found sense of confidence that emerged within me. Moreover, I learned skills and techniques that help people with TS feel more comfortable in social settings. By gaining this confidence, I now feel more comfortable in my day to day social settings and feel that I can thrive in any environment or situation that I am in. Further, I understood that I was not alone in my experiences and learned how important it is to have a strong support system in one’s life when dealing with adversity.

In addition, this experience led me to develop strong leadership skills. In the summer of 2018, the camp launched a Counselor -in – Training program and I was selected to become one of the first CIT’s. As a CIT I had many responsibilities which included: delegating tasks, making sure campers were following directions, and working directly with campers. When I delegated tasks, I realized how important it is to have organization within a group to ensure the task can be completed effectively. Another key role in groups operating smoothly, is ensuring that members follow directions. In addition, I was able to mentor younger campers when I worked one-on-one with them. This gave me the opportunity to model specific behaviors and expectations to them. Hence, by developing these leadership skills, I now feel comfortable in leading volunteer groups and would like to explore this new role by assisting peers on a college campus in different capacities.

Thus, this experience led me to feel a sense of acceptance about myself. I feel that by attending this camp it has instilled in me a knowledge that being different is not a bad thing. It has made me realize that just because there is something different or strange about someone it doesn’t make them any less of a person and that they can still do all the same things as anyone else can. By dealing with this challenge, I had had the opportunity to learn important life lessons. It has given me the ability to see things from a different point of view than most people. Specifically, it has made me more open minded and accepting toward others. As a result, this has made me a more inclusive person. For example, I strive to go out of my way to make sure everyone around me feels like they belong. In addition, I want to make others who may not normally feel like they fit in; feel very welcome in social settings. Therefore, my life experiences and this camp has brought to my attention my strong desire to go into a helping profession. I would like to be in a position to be able to help others with their life challenges. Further, my experiences have shaped me to be a uniquely compassionate and empathetic person; who is able to persevere in the face of adversity and remain positive.



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