2017 NJCTS Youth Scholarship Award Essay: “Life’s a Twitch”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Anna B.

One of my all time favorite quotes is by Scott Hamilton, “The only disability in life is a bad attitude.” From my own experience, I can honestly say this is very true. Life with Tourette is very unpredictable and sometimes you just have to learn to roll with the punches. I am not always the best at this, according to my parents my attitude is, “less than awesome.” At least it used to be, with age and acceptance it has improved tremendously.  

As a twelve year old who’s tics were becoming more obvious by the day, I decided to make a difference. I wasn’t going to let my so called ‘disability’ hold me back. I knew without explaining myself the kids at school were going to make fun of me because they didn’t understand. That’s why I did research and wrote my own speech to present. If the kids are uneducated and pick on me it’s just because they don’t understand, but if they understand and still are unwilling to accept me then that’s their problem. I gave my very first speech to my class in the sixth grade which coincidentally was also the day I got my diagnoses. All the positive reactions empowered me. During my research I came across the National Tourette Syndrome Association’s Youth Ambassador Training program in Washington, DC, and the New Jersey Center for Tourette Syndrome (NJCTS). I was trained to be an advocate for TS and given a presentation to use in schools. I began presenting professionally to small classrooms but it wasn’t until I became involved with NJCTS that I really began making a difference. I attended the first patient center education training and another training on how to present in classrooms. My sophomore year of high school I spoke to around 50 doctors and other medical professionals about Tourette. Every presentation I did gave me a little boost of confidence, which for a shy kid was life changing.

Though my transition through it all seemed like smooth sailing was far from it. To put it gently, freshman year I was a hot mess. I had developed coprolalia and let it get the better of me. My bad attitude really was crippling. I focused on what was going wrong instead of focusing on how I could use it to my advantage. [NJCTS Family Retreat Weekend at] Camp Bernie changed that for me. I made amazing friends who I am actually talking to as a write this four years later. Hearing their experiences and sharing coping techniques was huge for me. Being in a place where my differences were not only accepted, but embraced as well, was utterly life changing. Steven, a teacher who also struggles with coprolalia, made me realize that even if I didn’t improve I could still be successful and teach special education as well. Once I was able to come to terms with my Tourette I was able to help others do the same.  

Now I am a happy, successful, eighteen year old pursuing my dreams and doing my best to empower those around me to do the same. My favorite example of this was a presentation I did a few years back. A third boy was being bullied for his TS so I did a presentation at his school. After the presentation, he came up to me and said, “Thank you, I think I’m going to have friends now.” It all starts with a good attitude and self acceptance.

2017 NJCTS Youth Scholarship Award Essay: “My Tourette’s, My Advantage”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Tim Howard, an amazing athlete playing Premier Soccer and two-time representative in the World cup. He defines himself as a player who happens to have Tourette. We have this in common. No, I am not a professional soccer player, but I am a successful student, passionate person, and someone who has compassion for everyone beyond belief, who happens to have Tourette. Many view my Tourette as a disability. I, on the other hand strongly believe it is to my advantage. The person who I see in the mirror everyday is not the once shy kid who was afraid to speak out. I am someone who is not afraid to advocate or my condition, someone who smiles at the sight of a challenge, someone whose ambition is so high that whatever my life has to throw at me I can easily pick myself up, dust off my shoulder and trek forward. I already have one challenge completed: not let my Tourette control me.

I was diagnosed with TS at seven years old, and Howard was one of many who my dad told me about who was very successful in various fields of life that had Tourette. It was great to have these examples when I was forced to resolve awkward questions from peers and the occasional bullying in school. Even teachers would make comments about the unusual things I would do in the classroom. I was very shy about my tics and never spoke out to advocate for my condition. As I look back to who I was then, and who I became today I realized that the NJCTS Tim Howard Leadership Academy changed me. Those three weekends showed me that I don’t have to hide, and I should be proud of who I am.

During my first year at the Academy, my confidence boosted tremendously. I was able to talk about my tics in a light-hearted fashion and I also started to feel a sense of pride about having Tourette. I no longer view Tourette as a disability because it makes me who I am today. Throughout the academy many professionals in the medical field helped me to improve myself with the condition I have. With this new information, I was able to teach important lessons and advocate for others at the end of my third year. The coaches and others who attended the academy made me a better person today by teaching me how to advocate for myself. They shared stories with me in meetings which allowed me to share my story, thus shaping me into the person who is not afraid to speak out and advocate for our “advantage”. The Tim Howard Leadership Academy is near and dear to my heart. This academy was the first time I was able to express my true self in front of newly made friends, and not to be embarrassed about my condition. It was a great opportunity to let out my inner “Noah” without the fear of rejection and abnormalcy to people who go through similar situations in their life.

I truly believe that my Tourette has guided me to become a person who not only could defy expectations but to accomplish triumphs I never expected to complete. Who would have thought a kid with a so-called “disability” could get into every school they applied to and have so many options to better their future. I would encourage people with Tourette or other “advantages” to speak out, to let the world know that we can do anything we set our mind to. Yes it might be a struggle, but that just means we will work 10 times harder than an average person. Whatever my future is – a doctor, a lawyer, a teacher – I know that with my little buddy by my side (Tourette) we can defy the odds and do anything. Now I might not be the greatest athlete or the most brilliant student but I am who I am. The condition called Tourette will be a part of me for my entire life but it will not be a limitation. I cannot control how people view me. can only control how I view myself.

 

2017 NJCTS Youth Scholarship Award Essay: “Growing Up with Tourette”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Tess K.

Eleven years ago: I sit, legs crossed, looking down at the brightly colored shapes and
letters covering the carpet below me. I’m in my kindergarten classroom. The teacher walks through the door and abruptly stops. “Tess, are you crying again?” I squeeze my eyes shut and desperately attempt to stop the tears. My teacher stares at me. She’s disappointed, I can tell. “Do I need to call your parents again to take you home?” I nod and get up to follow her out of my classroom.

Getting home always felt good, like I was finally in a place where I could be me. My six year old self never questioned why I felt so out of place; I would just cry in my room because something felt fundamentally wrong. Five months after kindergarten began, I finally realized why. I began to hear countless adults tell me, “You have Tourette Syndrome which means you will experience some movements and sounds that you won’t be able to control, but don’t worry, you’re ok.” However, no matter how many times I heard these words and saw the encouraging smiles that so often came with that sentence, I was still scared. I wondered why I couldn’t finish a sentence without uncontrollably sniffing, or why I couldn’t stop blinking. I didn’t want to do these things, and I hated that I wasn’t in control of my body. I barely understood what I had been diagnosed with, and the unknown terrified me.

For six years, I hid my Tourette. I only told my closest friends and family, and I relied on my parents to explain my situation to anyone else. My coping mechanisms were successful, but nevertheless untruthful. I would lie about my Tourette, telling people I just had a cold or there was something in my eye. Every time I made another excuse I felt guilty about hiding who I really was. My life was good, but I still lacked the necessary skills to advocate for myself and others with Tourette.

Five years ago: I stand in my synagogue, pacing back and forth, holding a speech, my speech, tightly in my hands. I see people file into the room. I start to shake, doubting myself and the decision I have made. Hello everyone, my name is Tess. I’m in 7th grade, and I’m here to talk to you today about a neurological condition I have, called Tourette Syndrome. I think to myself: Can I really say these words and can I say them with confidence? I walk up to the front of the room. I take a deep breath, calming my body and mind. I smile and begin. I hear my voice, a strong powerful voice I barely recognize. I think: Is this really me? Am I really doing this? I am.

Present Day: I sometimes recall memories of when I gave my first talk. It’s hard to even
remember that scared little girl I used to be. From the moment I finished that speech I knew I was not that child anymore. Now I proudly advocate for my disorder and I am not embarrassed about who I am. I want to become a voice for kids who haven’t found theirs yet. I present in classrooms to students with Tourette so they don’t feel the need to hide their disorder in school. I present in hospitals to doctors to share my personal struggles and story. I am finally comfortable in my own skin.

The Future: Educating others and explaining how important it is to accept one another is something I will always be passionate about. I’ve made it my goal to publicly speak about Tourette whenever I can. I want to continue doing this throughout my life. I will always make it my mission to share as much knowledge about Tourette as I possibly can, because then hopefully someday others will too.

2017 NJCTS Youth Scholarship Award Essay: “What It’s Like to Be Me”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest. I hope you enjoy it!

Rachel M.

I have Tourette but Tourette does not have me. I have told myself this from day one, when I was diagnosed at 5 years old with Tourette Syndrome. It is a part of me and I let it help describe what kind of person I am. I feel like I am stronger because I have had to deal with this; more aware that I have seen other people just like me and some even worse; smarter because I now know how to deal with my disorder and how to figure out my goals. There are times when it gets rough but I learn from those times; how to handle my body differently; how to distract myself so I do not hurt myself; how to advocate for myself and how to make up work quickly at school; how to calm myself down. Things that help with my tics, are things like, petting an animal, crafting something (like a wreath), playing games on my phone, playing on my laptop, hanging with my friends, getting a hug, and just concentrating on something for a while. Since there is no specific medicine to cure Tourette, it has been experiments from day one. Try this, and try that. It gets frustrating when things do not work and it is relieving when medicines decide to help. And sometimes, the side effects from the medicine were not worth it. It was actually better to be ticcing than to be on a medicine that made me gain tons of weight, or have changes in my hormones, or get a huge permanent birthmark. From first grade through middle school, I would stand in front of my class and advocate for myself; telling my classmates about my disorder. I loved hearing when they had questions. It showed that they wanted to understand more about my condition and more about me. There were some kids that were not so nice, but everyone has those kids, regardless of if you have a disorder or not. I just kept myself away from those kids and kept moving forward. In high school, all the bullying magically stopped. It was probably because I completely switched school districts. But, I do have to admit that there were times where those kids got to me; made me wonder why I was not born “normal”. But in reality, there is no normal. You can be, whoever you want to be in life. I learned not to be the person that everyone wants you to be, but be the person that you want to be. Be a person that satisfies you. Do not let anyone stand in your way just because you have a disorder or you have acne, or you are not as smart as some of the other kids. That is just you. You are special in your own way. I have learned that throughout my years of dealing with this disorder, I cannot stop it. I could not prevent it. I was born with it. Just like people are born with blue eyes or freckles. Be who you want to be in life. Don’t let anyone or anything hold you back. I am living the life I want to live. I am making something of myself. I am going to succeed. For a while, I let my tics overtake me. And I was just getting lower and lower. I did not know if they would ever let up and stop. Finally my friends told me to hold my head high again and push through. So I did. And yes it was hard. But I succeeded. Maybe I will be able to tell more people about my disorder, the older I get. Maybe I can learn to advocate for myself better so that I can create a club. Maybe I can meet more people with similar or even the same disorder and we can discuss our problems and how we overcame them.

2017 NJCTS Youth Scholarship Award Essay: “I have Tourette’s, but Tourette’s doesn’t have me”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

PatrickM.

“I have Tourette’s, but Tourette’s doesn’t have me” is a quote that I have lived my life around. Nine years ago, when I was eight years old I was diagnosed with Tourette syndrome. I’ve had to live with this disorder for the majority of my life now, and I’m proud to say that I’ve overcome it and persevered through the struggles it brought. Most importantly, I haven’t let it get in the way of me being successful, well rounded, and involved in my life.

One special thing about me is that I am an extremely loving and caring person that will always put others first before I think about myself. I am involved in the TOPS soccer program, where you have a buddy with special needs that you play soccer with on Saturday mornings. My buddy Justin was very important to me. I ended up becoming very close to him and I couldn’t wait to see him every weekend. I am also in the Key club at my school where I do a lot of volunteer work to help various causes and people. Out of all the volunteer work I’ve done, one of the standout favorites of mine that I’ve participated in was Letters to Santa. I love children so this was especially fun for me. For this event I stayed after school numerous days and acted as Santa, replying to children’s letters they wrote to Santa.

Something else about me is how I haven’t let Tourette’s stop me from getting involved. In my school I am in many clubs such as DECA, Math league, Science League, and Key Club, all of these in which I participate in heavily. I was also on the soccer team in high school and this taught me many things about teamwork and being a leader. This eventually led to me being nominated by my coach to participate in the Sophomore Leadership Academy. This was a full day event where kids who showed leadership qualities were nominated by their teachers/ coaches and gathered together to be taught how to be better leaders. I was extremely honored and humbled to receive this nomination and I will continue to show the leadership qualities I have while attending Saint Joseph’s University.

Another thing that I am extremely proud of is my ability to excel academically while dealing with my Tourette’s. Throughout my four years of high school I have made Honor Roll or Superintendents List consistently. I am also currently a part of the National Honor Society. I attribute this success to my hard work ethic. I am an extremely hard worker and always give 110% in every task that I take on. My hard work also helps me during my job which is working at Visalli’s Farm Market. Working at a farmer’s market can sometimes be tough, especially during the summer in the scorching heat when I’m out in the fields. However, I always give it my all no matter the circumstance. I plan to bring my hard working attitude along with me to Saint Joseph’s University and to contribute wherever I can.

I will continue to persevere and be successful in my life while battling and beating Tourette’s. So far in my life I haven’t let this disorder hold me back from participating in many different activities and I will continue that trend at Saint Joseph’s University.

2017 NJCTS Youth Scholarship Award Essay: “How Tourette Syndrome has Played a Role in My Life”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

DavidC

A major obstacle I had to overcome, and I still deal with, is having Tourette Syndrome. When I started sixth grade, my parents noticed the twitches and grunts continuously emitting from my eyes, mouth and arms, when I watched television. I knew something was wrong long before, but never said anything. I would be in class and my tics annoyed and worried classmates who sat near me. “Is that you?” they would ask. For a long time, I was self-conscious of my actions and hated how there was nothing I could do to stop it. When school got harder, the tics got worse. I also had trouble reading passages in textbooks. My eye doctor said my right eye was weaker than my left, so I had a delayed sensory. I compensated for this by re-reading passages until I understood the text. My doctor said what should have taken 30 minutes to read, would take me up to two hours. It made sense to me, because I studied for long periods of time at home, and often went for extra help before, during and after school. It wasn’t until my junior year that my parents had me classified. The designation allowed me to get extra time for tests and other support. I’m proud that despite the Tourrette, I took AP and High Honors classes and was able to maintain a 4.0 GPA throughout high school. I was able to overcome this disability with sheer will and support from my family, teachers, and friends.

Having a steady hand is crucial in a drawing, but I also know that doing something I enjoy limits the impact of my Tourettes. It’s amazing, but, when I’m drawing I never experience tics. I love to draw and I love creating art. I want to be able to work more with both of those passions and become an animator.

As a child, I loved watching cartoons. That is how my passion for animation and the arts started. I have found what I want to do and that is to become an animator for a major studio or television network and create my own cartoon series. Even with my disorder and my late start in art, I was still able to apply, and get to accepted, to three amazing art schools. They are Ringling College of Art and Design, Savannah College of Art and Design and California College of the Arts. I still have not decided yet where I would like to go, but I know the disorder will still be there. However I will be there too fighting everyday to make sure my dreams can come true and that I can achieve whatever I want. I did it before with my grades in middle school and high school, and I will do it again in college and in the future when I do become an animator. No matter where I end up, my faith makes me confident that I will find success.

 

2017 NJCTS Youth Scholarship Award Essay: “The Imaginator”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

MichaelP

It was Halloween season and the teacher handed out gigantic Goosebumps posters. Without warning, they exploded into a creature made from green ooze, multiplying, contaminating, and encroaching the whole school. The creature splattered out like syrup that someone had microwaved. Its mere presence made me falter, go numb, and want to scream. Terrified and alone, I was surrounded by classmates who were now infected by a horrific parasitic slime. I hid under a desk to protect myself.

For months, this surreal episode haunted me in school every day. Eventually, I was diagnosed with Tourette Syndrome, Obsessive Compulsive Disorder, and General Anxiety Disorder. My motor tics were both involuntary and compulsive. I also created mental compulsions in my imagination to combat anything ‘bad’ to keep me safe: First, I focused on my defense, using my mind to create an energy shield all around me. I then built up my offense: I kept billowing imaginary fire from my body to blast and obliterate the green slime until it burned up into clear smoke.

I had to be home-schooled for a year before returning to middle school. At one point, I wondered exactly how long I would live with these disorders. With the support of many people, I slowly gained better control of my tics and compulsions. I was gradually integrated academically and socially. I learned to control my ‘imagination’, to bend it to my will, and master it instead of letting it run wild. It was no longer a curse; it was a blessing. I gradually developed the ability to harness the power of my imagination to help me face my circumstances and view my world in new and unique perspectives.

When I had few friends, I created my own friends and various worlds in my mind.  These friends were different versions of me: a hero, an explorer, a swimmer – all different types of characters with their own personalities.  They shared with me their stories and aspirations. They whipped me back into shape when I needed some tough love. They reassured me it was cool to wear “socks with Crocs”, and honorable to stand up for a friend being mocked. I was determined to be an independent thinker who does not follow the masses or seek approval from my peers.

Nowadays, I rarely need to purge my fears with imaginary fire. I no longer need the crutch of my imaginary friends. My imagination has become my arsenal of inspiration. During swim races, I create vivid images of a world where water becomes air, pierced through by my wings as I fly through the air like a falcon. Other times, I become a jet fighter flying over the Pacific, touching down on an aircraft carrier. Each time I finish the race into the wall, it is like my wheels slamming upon the metal deck of the carrier as I screech to a halt. When I study Chinese characters, the lines move, forms bend, and shapes dissolve to reappear in my mind as pictograms that the characters once originated from. The pictograms become animated images. The Chinese characters literally become characters with dialogues and actions in a story.

The images and stories in my customized universe, created by my ever-active imagination, have become the source of my strength and my vision. They encourage me to overcome the impossible and inspire me to reach beyond the seeable and the thinkable. The characters and creatures are akin to my children; they are my legacy. I have a spot for every one of them in this technological age of virtual worlds and merged reality, where anything is possible in video games and digital animation. I dream of bringing them to life and turning their stories and their worlds into stunning, exciting, and unique sensory adventures.

As I reflect on my TS and OCD experience, it’s hard to believe I was that fragile kid and how far I have traveled in this journey. Through force of will and discipline, and with the support of many people, I steadily overcame my adversity. I have learned to face down my fears and stand up to negativity. I am more confident with who I am, and more compassionate towards other people’s unique situations. Since my symptoms never truly disappear, they are daily reminders to keep fighting. Working extra hard and advocating for myself, I have come to terms with who I am. I look forward to a bright future.

I have this thing…

Do you know that feeling when you have something to say but you don’t know how to say it? It’s like you know the thoughts and you can feel the emotions, but you don’t know the words.

Every morning you wake up, brush your teeth, put some clothes on, eat some food, go to school or work, meet people, eat food in between, come home, do more work, eat more food, wrap up, and go to sleep only to repeat it all over again the next day, and the day after that, and so on.

And each day when you go through your routine, you think:

Nothing’s wrong

Because the fact is, you can’t put into words exactly what is wrong. It’s like you’re forgetting something.

No, not some ‘thing’, some ‘thought’

And not ‘forgetting’, more like ‘needing to know’

You don’t know what it is you’re supposed to think but it’s there in your brain. It’s an abstract, mind boggling idea churning through you like you’re in the middle of a giant city and you just. Don’t. Know.

You don’t know what you’re supposed to be doing

Or where you are supposed to be going

Or even who you’re supposed to be.

All you know is:

Where you are now.

There is something that has been plaguing me for 9 years. 9 and a half actually. It’s very real, it’s very alive, it’s something that I can’t change. And it’s taken me this long to come to terms with it.

I have this thing, which causes me to be awkward in public—not in what I say, but more in what I do.

I have this thing, which causes people to look at me weirdly—not that I’m disgusting but more like I’m crazy and mental, and not in a good way.

I have this thing which causes me to be so self conscious but at the same time in the heat of the moment I forget I have that thing until someone reminds me with just one look, one laugh, one smirk.

I have this thing…

I have tics.

No, not ticks like from deer that make you break out into rashes and look like a tomato.

According the Merriam Webster a tic is:

Full:

“Local and habitual spasmodic motion of particular muscles especially of the face. A frequent usually unconscious quirk of behavior or speech <”you know” is a verbal tic>”

Simple:

“A small repeated movement of a muscle especially in the face that cannot be controlled. A word or phrase that someone frequently says or an action that someone frequently does without intending to.”

Cannot be controlled. Without intending to. Unconscious.

People don’t see that. All people see are the spasms and the repeated movements and the frequent words or actions. All they see is what annoys them and not what the person is going through—they see the funny weird things that they don’t know about and they laugh, they imitate, they take someone’s weakness and exploit it.

Because that’s all it is…

A thing.

A thing with no cure, a thing that doesn’t go away, a thing I am stuck with for the rest of my life.

I can’t even have a conversation with someone without getting stared at. I know in the other person’s head they’re thinking, “What is that? What is she doing?” because it’s written all over their face.

What am I doing?

I want you to open your eyes, right now, and keep them open…

Still keep them open.

And open

Did you blink yet? Eventually, you will because after some time you will blink naturally. This is how I feel every day. The unexplainable need to go through with the action is, to me, as automatic as blinking is to you.

But what are these actions?

Tics are either motor or vocal. Motor tics consist of nose twitching, hair fixing, obsessive touching, face grimacing, hand stressing, and more. Vocal tics involve grunting, humming, blowing, or saying actual words, like curses. They worsen when under stressful conditions, but are also temporary until the next need arises.

Around 200,000 people in the U.S have the condition, however there is no exact number because many people are not diagnosed. Symptoms typically show in adolescent years and over time, most people improve. This condition isn’t something I just picked up from someone sneezing, its genetic, passed down through many ways but to me specifically, from my aunt.

Treatments include taking drugs that make you feel like you’re drunk.

Sometimes I want to feel like I’m drunk. When I’m all alone in my bedroom on a Friday night because no one wants to be associated with the mental girl. When I’m on my way back from the bathroom and I overhear my cousins laughing at what I was doing, imitating me.  When my parents are yelling at me to stop because they don’t understand that I can’t stop, that I don’t know how to stop. And I don’t know how to tell them, any of them, about what I have.

How do you tell someone that you have a disorder?

Sometimes I feel like I’m gay and I’m coming out of the closet, except I’m not gay and there is no actual closet… I want to scream at the world that I am in fact not crazy, that what I do is not uncommon, that just because I do weird things on the outside doesn’t mean I’m a bad person on the inside. I wish that I could make people understand what I have.

*          *          *          *          *          *          *          *          *

I miss the me that I was back then. Years ago, when we were all friends—laughing and smiling. Not worried about impressing anyone or our looks or being the best. When we were just. Us.

Now, we worry. We worry about who is dressed the best and who has the most followers on Instagram, and likes, and pictures. We worry about making that shot in basketball to impress a girl or worrying about not tripping over our heels while we are already tripping over our words to impress a guy. We worry and we worry and we worry, about being like everyone else, about fitting in, about being liked and loved, about having friends and being popular. But never do we actually take the time to think about ourselves.

Life is made up of moments. Hard fast and blinding moments and when they pass they pass only to make room for more moments. And those moments make you, You. I have a moment, a hard fast and blinding moment, where I realized I have a thing—a thing that makes me, Me.

2016 NJCTS Youth Scholarship Award Essay: “Living with Tourette Syndrome”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

MichaelS

MichaelS

I pondered what it meant when I was diagnosed with Tourettes. The doctor explained to me there was no cure, and that with time it’d get better, but he said Tourettes will be a part of my life forever. I had finally figured out the answer as to why I constantly rolled my eyes, or why I occasionally let out an obnoxious vocal sound. As a confused 4th grader, I didn’t realize this would soon become part of my identity. After the diagnosis I was uneasy about telling people, even my close friends, why I did all these strange things. I was scared they’d think of me differently or put a label on me. Every time my classmates asked about it, I’d reply with an indifferent “I don’t know.”

I remember showing up to a basketball camp and as we were huddled around a coach, he was lecturing us. My eyes rolled uncontrollably. He stood up and then scolded me, talking about how disrespectful I was and I was forced to run to the point where I felt like I had to throw up. I was too frightened to tell him it was because of Tourettes. After that fiasco, I realized it was time to tell people.

It took me 3 years to finally muster up the courage to tell a couple of my close friends why I had been rolling my eyes, crinkling my nose, and letting out vocal sounds. I explained to them that they were called tics that unfortunately forced me to do some strange things. I told them I couldn’t suppress these tics or else I would feel like I couldn’t breathe. I was nervous as to how they would react. I didn’t want them to think of me differently. They all essentially said the same thing: “It doesn’t matter; you’re not different; you having Tourettes doesn’t change anything.” I was shocked. I thought I’d receive some questions, but everything was alright.

Sure there were instances throughout my life where people asked questions and said mean things. Soon I realized that having Tourettes was a blessing in disguise: I was able to talk to people and educate them on Tourettes. I was trying to eliminate the stereotype that all people with Tourettes curse excessively or are constantly mumbling random words. After telling people about my neurological disorder I became cognizant of that fact that this was me, I couldn’t change it even if I wanted to.

As I got older, more and more people began to put a face to Tourettes and it was mine. I was uncomfortable with this at first, but it was a component of who I am; I’m not complete without Tourettes. People were able to see that anyone can have Tourettes and that sometimes we may not even know they do. Without Tourettes I feel like I’d be a different person, maybe a little more normal, but “normal” can be boring. Tourettes is a part of who I am: it’s an essential part of my identity. As I grow up, I realize it will forever be a part of me: maybe a small part, but a part nonetheless.

 

2016 NJCTS Youth Scholarship Award Essay

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

I have had TS all my life, and it has affected me all my life, even though I may not have known what it was until more recent years. Knowing that I have Tourette Syndrome gave me a sense of identity, and a group of people to belong to. More importantly, it gave me direction and even more reason to create. I have always prided myself in being an artist, in particular a photographer. Being diagnosed with TS has given me a need to create and provide good representation for those with TS. I feel as if I need to prove to the world that I’m not some crude video on YouTube for people to laugh at, I am a remarkable human being that can create something beautiful out of anything. Having Tourette Syndrome has its good days and its bad days, and even on those bad days I can be reminded to keep on going and keep on ticking because TS makes me, me. I am the most important thing I could ever have. Tourette Syndrome showed me that while things can be uncontrollable, wild, and unpredictable, there is always a place for you to belong. TS has taught me that you have to be willing to go with the flow, and that not everything has a reason, which I believe that is one of the most valuable things you can learn going into adulthood. Accepting things as they are will always be a benefit to you, especially with something like Tourette Syndrome.