This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2013 Children’s Scholarship Award contest. I hope you enjoy it! And here is my profile on the NJCTS website.
Tourette has had a substantial effect on my life, even though my tics are considered relatively mild and could be much worse. Although I was born extremely premature and had several medical complications during my childhood — including ADD and vision problems — Tourette was not something I was anticipating, nor prepared to handle.
Strangely, without explanation, my tics suddenly started around age 16 during my sophomore year of high school. My tics consisted of throat clearing, eye blinking and other fidgeting of my hands and other body parts. My tics only happen when I try to speak, lasting from a few seconds to a few minutes at their worst.
None of my family, friends or teachers could understand why I, a student who had always participated in class and communicated without any difficulty, suddenly could not speak or have a simple everyday conversation. I could not explain what was happening to me.
There is no pattern to my tics — they can happen when I am initiating the conversation or when I am answering a question, whether it is a telephone conversation or an in-person conversation, whether it is a stressful situation or a calm discussion.
It can be as simple as my mom asking me what I had for lunch at school that day. The tics and delays in speech are awkward and stressful. This had suddenly become a major problem for me.
I have spent the past two years with doctors and therapists, first being told I had Chronic Tic Syndrome, then finally being told I had Tourette. Now, nearly two years after my tics first started, there are no answers for why this has happened to me.
Despite seeing many different doctors, spending months attending habit reversal therapy and trying several different medications, the tics remain and continue. It was hard for my parents accept that there is no explanation or reason for what has happened to me.
Tourette has had a drastic effect on my social life, as well as my overall self-confidence. I have become very quiet and withdrawn, although I am trying to break out of my shell a little more. People take for granted their ability to speak, without thought or hesitation. For me, speaking has become quite difficult and often I am simply frozen by my tics — unable to speak a word.
It is extremely frustrating to know what you want to say yet be unable to say a single word. For example, imagine being in a restaurant and the waiter asking you what you would like to order. You know exactly what you want to order, but because of the tics you are unable to utter a single word. Others do not understand why you cannot speak or answer the questions.
My tics have also had an impact on my school life. High school is hard enough without having to deal with a sudden, unexpected disability that no one understands. My tics, and the many different medications I have tried, have also affected my ability to focus and concentrate in school. My grades have dropped and my participation in school, both in class and after-school activities, has suffered.
At this point, I have accepted that I will have to live with these tics and hope that, as one doctor predicted, they may suddenly lessen or disappear as suddenly as they occurred. The medications seem to help a little, and the tics have lessened somewhat. My parents, family and friends have all been very understanding and supportive, which has helped me so much in dealing with this.
Throughout these past two years, I have turned to the Internet and my love of technology to keep me going. I have made new friends with similar interest in computers, technology and cars online, and those friendships have continued until today.
I have become involved as an administrator and contributor to two technology-related websites, a Twitter page and the E39Source YouTube channel. I have been able to make videos for YouTube related to my love of cars even if I have to edit the audio to remove the awkward pauses and sounds during my speech because of my tics.
Despite all of this, I have been able to maintain good grades throughout high school and was accepted to every college to which I applied. I have decided to attend Marist College in the fall to study information technology. The main reason I selected Marist is that they have a well-known special services office that provides accommodations and academic/social support for students with disabilities.
I cannot explain how or why my tics started, and I guess I realize at this point that it does not really matter. I realize now that I have to accept that my tics may never go away. Therefore, what matters to me most is managing my tics as best as possible so that I can continue with my life and education as best as possible.