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

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

TommyL

When I was twelve years old, I was sitting in the lunch room, and in an instant, the school went into lockdown. For most students this is not a serious issue. They stay quiet and out of sight. For me, lockdowns are a challenge because I have Tourette Syndrome (TS), a disorder characterized by involuntary movements and sounds called tics. While the rest of the cafeteria was quiet, I couldn’t help but involuntarily yelp and twitch my neck. It felt as though the eyes of the world were glaring at me with their ears wide open to the noises I was making. I was not expecting the comment that would hurt worse than the constant staring and whispers from that school year. This unlikely offender was a quiet, but kind person who sat in front of me and asked, “Why are you doing that? What’s wrong with you? Someone should put you in a cage or something!” It was at that moment that I knew that I had to speak out about Tourette Syndrome and advocate for myself.

About a month later, a person from the New Jersey Center for Tourette Syndrome and
Associated Disorders, Inc., came to my school and educated my peers about TS. During both presentations I stood up and stated that I had TS and I deserved respect. Through speaking out at the presentation, I became more confident and unafraid to say I have TS. In a span of six months, I went from being bullied, and afraid to feeling confident and free to be me. I learned through that entire experience that I wanted to be the one up in front of a crowd helping kids with TS come out of their shells. I later became a National Youth Ambassador and Patient Educator for Tourette Syndrome. I continued on to speak at schools, hospitals, and universities. My most rewarding experiences were when I spoke to children with TS and their peers.

Out of the adversity I have faced, I have learned to be resilient. I have developed thick
skin that has made every comment and stare bounce right off. I have learned to get back up after each defeat and push through to every victory. Throughout every tough event in life, I have turned to music to get through them. It is a known phenomenon that people with TS don’t tic while performing. Music is the reason that I wake up at 5:00 every morning to be at my before school choir class. Throughout my life I have had two passions: music and Tourette Syndrome. It is my hope to combine them into a career in music therapy. I hope to do research to figure out the correlation between the reprieve from tics and music in Tourette Syndrome patients. Hopefully, one day I will come up with a viable way to treat people with TS through music.

Through my past experiences I have learned to see each challenge as a gift. If I didn’t go through what I have in life, I wouldn’t be me or have done half the things I’ve accomplished over the years. My past experiences are what made me who I am today, and I wouldn’t change any part of them. They are what gave me the drive to be successful and create a positive change in the world. I will meet each new challenge and goal with the same intensity. I will continue to be resilient, because no matter what I do in life there will be staring, comments, and people who say I won’t succeed. If there is one thing I have learned, it is that people say many things, but they aren’t always right. Someday I will be living proof that nothing, and no one, will stop me from accomplishing my goals in life.

2017 NJCTS Youth Scholarship Award Essay: “Tourette Syndrome will always be a part of me”

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

Trevor S.

At ten years old, I was diagnosed with Tourette Syndrome and it has had an impact on my life at first. Being so young, I did not really understand what Tourette Syndrome was, or what I was diagnosed with. It made it a little difficult to communicate with friends and let them know exactly what I was doing or why I ticced. One of the things that I wanted to do when I grew up was to learn more about Tourette Syndrome so I would learn more about me as a person. I moved to New Jersey two days before the start of my freshmen year. At the start of junior year, my mom found out about the [NJCTS Tim Howard Leadership] academy and it was an awesome experience. It helped me learned more about myself as I learned a lot more about TS than I previously had. The time I had at the academy left me feeling great that I finally understood who I was and I could explain to people about TS. I explained what TS was to my friends who were curious and I ended up becoming a youth advocate for TS. During the first couple months of school, I attended a presentation and answered questions for the students about TS. I have also attended two TS walks. I have recently been accepted to the academy again and look forward to attending it. Tourette Syndrome has had such an impact on my life that I do not believe I can imagine my life any other way. My letter for college was about Tourette Syndrome and how it had affected my life. I have been accepted into all but one of my colleges and have received the presidential scholarship at every university. Tourette Syndrome is, and will always be a part of me. It does make certain things interesting such as school and sports but it invites me to see new things. In school, I do well and I get to have extra times on my tests when it is needed. While there are some negatives, the positives outweigh the few negatives by a lot. I have made many new friends through the academy and other places and my knowledge in general has increased.

2017 NJCTS Youth Scholarship Award Essay: “The Same Kind of Different as Normal”

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

Rose P.

“All the world is full of suffering. It is all so full of overcoming.” – Helen Keller.

We never think of the simple tasks we do from day to day like getting dressed, making our bed in the morning, even just writing our name on a piece of paper as difficult. These are things that normal people take for granted, but in second grade these were my biggest struggles. I was constantly losing control of my body and then gaining it back just as fast. It’s a misunderstood neurological disorder called Tourette Syndrome.

As a child I didn’t understand what was happening, why I had changed and became so different from my classmates. Why I could no longer be just as normal as they were? I could still run, jump and play. I was constantly exhausted because even when I tried to sit still, my body was in constant motion. I often had to be sent home because I was unable to sit in my chair at school when my tics became too severe. Every day I would go to bed with the desire to be “normal.” Every morning I would wake up with the hope that one day my tics would go away. The only thing was, it never happened. Through it all I began to admire Helen Keller for how she lived her life and had been able to overcome being both deaf and blind and still learned to speak and go to college. I knew that if she could overcome her differences so could I. That one day I would be able to beat my Tourette Syndrome.

Even today I may struggle doing things when I have a day with more tics than usual. I have never let my Tourette Syndrome get in the way of what I want to do in school and in life. I am able to dance, perform in plays and compete both in swimming and on my school academic team. I have come to learn and accept that being different is being normal for me. The word normal can only be defined by how you see yourself and shouldn’t be defined by how others see you. I feel that because I am not as normal as others, I am able to understand people from a different point of view. I can better understand what people go through medically and emotionally when they are unsure of what may happen next. I have also wanted to help people my entire life. As a first grader, my dream job wasn’t to be an actress or movie star like other kids my age; I wanted to be a scientist and work at St. Jude’s Children’s Hospital to help cancer patients. I didn’t even know what cancer was, but I wanted to find out and make a difference. Now, my dream job is to be a nurse at the Children’s Hospital of Philadelphia. Tourettes has never stopped me from following my dreams before, and I don’t feel that it will stop me now, either. I was able to overcome many things as a child; I still do every day of my life. Being a nurse will allow me to help the children who may be going through their hardest life challenges, whether they have cancer, or another disease or disorder. I will not only be able to help them medically, but I will be able to show them that if you are determined enough to do something, anything is possible. Just because you have a disability or disorder doesn’t mean you have to live your life as such. We all determine our own destinies in life, for me that’s beating Tourette Syndrome and becoming a nurse. Normal and different is only what you make of it. It doesn’t matter how others see you. You are your own kind of normal and that’s the best kind there is.

2017 NJCTS Youth Scholarship Award Essay: “Growth Through Opportunity”

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

James P.

Even though many people in the outside world regard Tourette syndrome as a disability and hindrance towards a person’s overall success, I believe Tourette’s has been a God-given gift that has shaped me into the strong-minded and resolute individual that I am today. When I was six, I was officially diagnosed with Tourette’s syndrome, but did not begin to experience the effects of my disorder until a few years later. Growing up, I attended a private, Catholic school that had about twenty students per class. In the fourth grade, word quickly spread around that I was the “weird kid” as more of my peers realized that I was the only one who moved his face in strange ways. Although none of my classmates were bothered by my tics, a couple of boys from the grade above me took this as an opportunity to tease me every time I saw them. After a few months of ignoring the endless bombardment of name-calling and insults, I unfortunately decided to fight back with my fists instead of my words. Predictably, I ended up in the office of our principal, an authoritarian nun who had zero tolerance for violence. Expecting to be scolded by her for my actions, I was surprised to hear her say that Tourette syndrome was a blessing from God and not to worry about what other people thought or said about it. While what she said still resonates in my mind to this day, I only started to believe her after I attended the NJCTS Tim Howard Leadership Academy this past summer.

Before I attended the Academy, I chose to ignore the fact that Tourette’s is an important part of my identity, despite what my principal told me seven years ago. Heading into the Academy, I thought I was just going to learn about coping mechanisms, for when my tics become unbearable, and how to explain to new acquaintances that I have Tourette syndrome. What I took away the most from the Academy though, was how to successfully use resilience, courage, and grit in my pursuit of playing collegiate baseball. During my time at Rutgers, I was in the midst of the recruiting process and was preparing for the largest showcase I would be attending the next week. I was undoubtedly afraid of not performing to the best of my abilities that stemmed from a lack of confidence. However, at the Academy I learned that in order to compete amongst the elite baseball players in the United States, I must overcome the hardships I faced in the past, athletically and psychologically, so I could confidently develop into a better pitcher. Of the three traits, nonetheless, grit was the characteristic that I believe helped me the most during that showcase. Baseball has and always will be a game that tests a person’s strength of character and distinguishes the best players from the rest of the field. The same can be said about how I started to live with my Tourette’s after I left the Academy. Instead of continuing to hide my tics from the outside world and let insecurity consume me, I chose to dive into life with an open mind ready to accept the curveballs God sends my way. With this new mentality and approach to adversity, I was able to pitch my way into the hearts of a handful of college coaches and am happy to say that I will be continuing my baseball career at Kenyon College next year.

2017 NJCTS Youth Scholarship Award Essay: “Tourette Syndrome and its Lasting Impact on Me”

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

Daniel O.

I was diagnosed with Tourette Syndrome at 6 years old. I was very scared when I first found out I had some rare disease but my mom made me feel better about the condition that I had because she would educate me about why my body was doing the things it was doing. I started to become more aware of my tics, later on in my diagnosis I found out about some specific learning disabilities I had, and began to develop anxiety issues.

Tics have waxed and waned my whole life but thankfully for me, my tics weren’t as noticeable compared to some other children who had Tourette Syndrome growing up. Thanks to this, I was never really subject to bullying. However, the types of tics that I had such as shoulder shrugs, rapid blinking, joint popping, and muscle flexing takes a toll on my body and can leave my back in pain on days where I tic a lot. Recently I’ve learned to cope with these tics and use conditioned response therapy to help relieve them.

I am fluent in many subjects that don’t require much math skill such as language arts, woodshop, and many other fields. I’m a creative person but I feel as if I my creativity and knowledge capacity is limited due to my learning disabilities involving math. It is hard for me to stay focused on a math problem and when doing many math problems I become anxious and overwhelmed. Learning math is hard for me as well because I will learn about certain types of problems or theories and we’ll just barely grasp it. When we move on to different theories, I sometimes forget what I learned before making it more difficult to learn new problems. I’m lucky enough to have a tutor in my school who I am close with who helps me when I struggle with math.

Not until quite recently have I become aware of my anxiety issues. I tend to get overworked on things and tasks that many people find normal, but my brain blows it out of proportion. This can cause me to rethink a lot of decisions I make as well as a sense of self-doubt. This ties in with my learning disabilities and can aggravate my tics.

Tourette Syndrome will always have a lasting impact on me, when I go to college, when I get married, and when I have kids. My tics will still be there, my learning disabilities will be there, and my anxiety will be there as well. I need as much support as possible getting into college so I may become successful and independent so one day I can get married and have kids.

2017 NJCTS Youth Scholarship Award Essay: “How Tourette Syndrome has Played a Part 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.

Nicholas A.

When I was in kindergarten, my home was full of stress. I don’t remember actually knowing why, I just knew my home was different than others. I had a younger brother being diagnosed with Autism, parents who didn’t get along, and my mother was battling cancer. Needless to say, things were a bit stressful.

It started with just slightly shaking my head, and eventually over the course of the year, progressed to also making musical noises with the head shaking. I wasn’t aware that people were noticing it until I got to third grade. My friend asked, “Why do you make those noises.” Once kids started noticing, and my grades started to be affected, my mom took me to a neurologist where I was officially diagnosed with Tourette Syndrome.

I was put on medication which worked beautifully, my mom got me a tutor so I could catch up, and socially I began to develop. Once I reached this point, my mom and I started talking openly about stress and how to manage it, as well as when it’s time for help. Let’s face it, life is full of stress and changes. It’s just the way life is, maybe more now than ever before.

I’ve learned to stay active in sports, have a nice work-play balance, and try to get enough sleep, and eat right. I do believe it’s a combination of all these things that has helped me manage my disease as well as I have. Over the past decade, I’ve only needed to return to a medication regime, and only for a very short period of time. I’m aware my future is unpredictable, but I do feel that with the right tools, my future will be bright and productive.

Tourette’s does not define me. It’s part of my life and always will be, but has forced me to take care of myself mentally and spiritually, which can only be a good thing in my eyes.

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.