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2015 NJCTS Youth Scholarship Award Essay: “Holding My Breath”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. I hope you enjoy it!

JacobF

JacobF

In fourth grade, I was diagnosed with Tourette’s Syndrome. This condition has influenced who I am, how I act, and how l think of myself. Because of Tourette’s, I will always consider words like spazz, uncontrollable, and random as terms of endearment. I would gladly use these words to help define me, because to some extent, all are true. I didn’t go through a particularly turbulent childhood, but often found myself on the opposite side of name calling and taunting. For anyone unfamiliar with it, Tourette’s is a condition in the brain that causes a person to make random sounds and movements. Importantly, these sounds or movements are Unvoluntary, not Involuntary, essentially meaning that I can, at times, hold them back to some uncomfortable degree, similar to how a person can hold his breath. Go ahead; hold your breath for as long as you can. How long before you are compelled to take a breath? That compulsion, the one that made you breathe, even though you fought it for a short period of time, that is very close to the impulse that l feel when I need to tic. Having Tourette’s has always made me feel different, sometimes disjointed and often angry with myself over my inability to fully reign in my own body. Even now, years after being diagnosed and having come to terms with my condition, I still find myself having odd fits of rage directed inwards, livid with myself for the inability to stop something I know I cannot control. But when I step back and take a look at who I have become, I see the deep roots and tendrils of Tourette’s penetrating myriad facets of my life, personality and behavior.

My Tourette’s experience has provided me a unique and beneficial perspective in various situations. For example, my participation in the Model United Nations (MUN), a political debate organization where we assume the views of different countries like the real UN, creates scenarios that I am better at navigating because of lessons learned from my Tourette’s. In MUN committees, I can quickly combat poor information, coordinate people, and get a full picture of the balance of power within the room. I believe that this can be traced back to my experience of entering a new classroom or situation where people do not know about my Tourette’s. The absence of basic knowledge in both situations translates to a sense of a lack of power and control. Although this is a discomfort for most people, I believe that steps that I have learned to take to deal with the inevitable lack of control over my own body and other people’s reactions have made me more capable than most in dealing with these types of scenarios. In life, I have to quickly educate people, make them understand my Tourette’s and try to get them on my side, so to speak. ln MUN, I have to do the same thing although not only about my Tourette’s, but also about the position that I am taking on behalf of the country that I have been assigned. Constantly having to run through this exercise can be exasperating at times, but it also makes me more sensitive than most to the power of logical explanation and knowledge and also more vulnerable to the detrimental effect of their absence. I find it gratifying that learning to deal with Tourette’s has helped me in MUN, and other facets of my life. lt has instilled within me a rational and objective approach to life based on the quest for knowledge and understanding. lt has provided me with a thick skin, and a self-deprecating sense of humor. Tourette’s is a part of me. lt influences who I am, and I gladly accept the challenges it presents for that opportunity to be uniquely, sometimes loudly, and always

completely, me.

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