Friends

Everything happens for a reason. That’s something I try to tell myself often, even when it gets tough. However, it’s hard to think so when it comes to the questions that I ask myself; such as: “Why do I have TS? Why doesn’t anyone I know have it, but I do?” Yesterday at night, after I finished writing, I accidentally send an audio imessage to my friend Ray*. It was an audio of me, after a long day, releasing my vocal and motor tics. As soon as I realized what I had sent, I was more than mortified. Of course, Ray* and my friends all know I have Tourette Syndrome. They are supportive and look beyond my tics. That didn’t stop me from feeling embarrassed and ashamed of my TS as I realized what had happened. I texted my friend Ellen*, telling her how stupid I felt and how I hated myself. My friend, being the sweetest person ever, responded by saying: “you shouldn’t hate things that you can’t change about yourself. And honestly who cares I mean I certainly don’t. Okay you need to love yourself.” Then I received a text from Ray* saying that it’s okay, and that he punches things when he gets mad, too. That made me laugh. Apart from the thoughtfulness and understanding my friends provided me with, this small incident was not small for me at all. It proved to me that all things really do happen for a reason, and that good always comes after/with the bad.

(* Not their real names)

Middle School Graduation

I never quite felt like part of my friend group. It really is ironic, because we are all really great friends. We’ve all shared personal experiences, had deep conversations, slept over, made ridiculous nicknames for each other, revealed our sexuality and current crushes, and we’ve kept all of our secrets in a tight bundle. Yet my mind is, of course, an inexplicable place that is full of anxiety, which leads myself to doubt the friendship we’ve built over the past 2 years. This made me want a “new start,” where I could be a “better” and a more “likeable” friend and person in general. I thought this “new start” would take place perfectly in High School. But now I know how far I’ve come―that I am really going to high school―I’m feeling so many things.

Last Friday was graduation. I’m done with middle school, now. I even received an achievement award. I was really, really confused. I thought I heard my name wrong. After summer ends, I’m going to be a freshman. A freshman. A high-schooler. It’s really happening. I’m might not be able see all of my friends everyday. We’re going to the same school. But I’m not going to have any classes with Amy, and I’m scared that it’ll be the same with my Hubby, Mayo, Ellen, and Pantyhoe (nicknames).

My friends have been there for me all the time, ever since I came here. I know we can still hang out, but I also know it’s realistic to lose friends in high school. I cried a lot yesterday, thinking of Ray* being my first friend here, and how much he developed as a person and my friend. Thinking of how much I loved them and appreciated all of them: I just hadn’t known how much until I realized this could end right here. I feel nervous and scared for high school. I feel excited about making new friends. I want to make new friends. But I don’t think I want to say goodbye to my friends who have cried with me, wiped my tear for me, and my friends who I have wiped their tears for them and made them smile afterwards.

Teen Arts

Today was a great day. I have been feeling so down lately, but today was a great day.
Our school has a special day called Teen Arts once a year. We submit artworks, writings, and listen to people play music. It is a special day where our school artists get to share our experiences; a day where our artists share their passion. Last year was my first year at Teen arts. I shared a piece about my Tourette’s and what life was like living with it. This year, I shared (another) personal essay; mostly about accepting my TS, my complicated relationship with my mom and sister, and my manic depression. To be honest, I wasn’t confident with this piece. It was something I wrote when I was feeling very emotional and inspired, but I hadn’t planned on reading it.

Our bus came late, so we only had twenty minutes to share our creative writing pieces. After a girl a grade lower shared her amazing short story, we had five. Then, when my favorite teacher requested me to read my writing, I was ready. I spent three days thinking of this moment. It sounds too dramatic, but it’s true. I was about share a part of me no one knew. I took a deep breath and read. I stammered, a bit, but it felt like being freed from a cage. When I looked up, I saw my teachers looking at me; not crying, like last year, but smiling. As if they were proud. On the other hand, I did make some of my friends cry. (My good friend who hates crying, cried. It was a little funny, because we hugged–which she hates doing, tooso many times, and started laughing as she continued to cry while doing so.) They came up to me and hugged me for thirty minutes, and I couldn’t have been more appreciative of them. They couldn’t fully understand what I was going through, but they were there for me-and that meant something.

Having Tourette Syndrome and depression is hard. But it helped me realize how much my father tried to make me happy; how supportive the people around me are, and of course it helps me grow stronger every day. Even in difficult times, my mental illness helps me realize my mistakes and become a better person. Today, I felt happiness shine on my friends and I as we pranced under the sun. Through tears and smiles, we walked together.

Our differences make us who we are

While growing up in two different places, I never really stood out in the crowd. I was just normal, in a good way I suppose, and I didn’t think much of it. Although I feared new environments due to my shyness, I was soon in America by the age of three. I spent five full and fun years and went back to Korea. As I recall I was very organized, did all my work, and focused perfectly well. Those were probably the few reasons why I didn’t expect myself to be in the position that I was, and still am now. I don’t think that I will forget the three years of my Tourette Syndrome experiences.

To begin with, I had never even heard of the word Tourette’s before I started to have tics. I don’t remember when it first started. I don’t think you can have tics, the constant movements or noises I make, all of a sudden. It might have happened slowly, but it also could have been rushed through, too. One thing I clearly remember is the time my mom and dad told me we were going to the doctor’s when I was eleven years old. They weren’t very specific, but I already suspected it was because of my head-shaking and eye-rolling. “But why?” I asked. When my dad answered the question, I started to yell that I would not go. That I was not mentally ill. But I had to, and I did. After waiting for an hour and half, (it was a very good and big hospital) and within minutes I was diagnosed with Tourette Syndrome. It was too much information that I did not understand at that point.

Although this post is not going to be purposely overly depressing, the first years were probably the hardest. It was when the truth hit me hard. My condition was worse than right now. Then, I had to accept the fact that I was “different.” Every time I looked around, I saw people. People just sitting, writing, laughing, playing. All doing so while staying still. But me? Why couldn’t I do the same? My Tourette Syndrome medicines increased to a high dose, and I started receiving antidepressants. I would have to answer the embarrassing question whenever I met someone: “Why do you do that?” There were a few times when some disturbing boys just had to imitate me, and I would get very emotional at those times. I would cry. I was never the one in control when it came to my tics. I was insecure enough―and I didn’t need them to point out the facts for me. And some days it was kind of annoying and depressing, unfair and just sad. For so many reasons, really. I hated when people who I didn’t even know stared at me as if I were strange, abnormal. I didn’t like how someone would judge me before they would even get to know me. It was inevitable, though. People would see my Tourette’s before they would see me. I didn’t like it.

Whenever I would share these kind of moments to adults, my doctor, parents, I felt like they would never fully, completely understand. I would spill the words out from my heart sometimes, but some days I would seal my mouth shut. I could never share these experiences to any of my Tourette’s-inexperienced friends, not even to my closest ones. They would never really get it. Even now, I’ve never really talked to them about it other than tell them about it. I knew that everyone was always there for me. But in a way, they weren’t because they would never truly know how it feels.

I sometimes admit that I think I have had a lot to benefit from having Tourette Syndrome. For example, I see more in people than I had before. I know what it’s like to be depressed. I understand how hard it is to be so hateful toward your own self. I know how sometimes, you don’t want to get out of bed; you just want to sleep forever. I also know that I’m no different than others. Our differences make us who we are.

But if you’re thinking having Tourette’s isn’t painful, or maybe not that bad let me tell you that you won’t want to have it. People stare. Your neck will hurt, and you’ll pretend to roll your neck naturally in school—oh, I’m just stretching—afraid people will notice. Anyone can use it against you; from petty girls to “Everyone likes me so I’m a good person” type of boys. It can be genetic, but in my case none of my parents had it. I could make a list of reasons why I don’t want it. When I look back at the past, I was a very sad third-grader. I was always stressed. I was this normal, popular girl in America, and when I came to Korea, I suddenly had these stupid, severe tics. I mostly cried everyday, and screamed a lot, too. I continued to read a lot. I only enjoyed reading English books, and it was one of my few remedies. I had only a few girl friends. Most of my friends were boys. I didn’t care though, until I got to fourth grade.

It was the first day of school in fourth grade, and as soon as I walked into the classroom, I was screwed. First of all, my tics were in bad condition. Especially my vocal tics, which are the sound tics. Second, I barely knew anyone in the classroom. ‘Forget good first impressions,’ I thought to myself. Almost everyone knew each other, which was very awkward for me. When I got to my seat I waited until my teacher came and until everyone was in the classroom. I still remember this, and I almost died of embarrassment, but I kept on clearing my throat. A boy, who was the most popular boy in our class later on, suddenly called out, “Who’s making that weird sound?” At the time no one knew except for me. Later on, everyone probably figured it out. It did not stop the girls from staring or constantly asking me why I was doing it or what I was doing.

I have recently watched a video called “I Have Tourette’s but Tourette’s Doesn’t Have Me.” I saw some things I already knew, one of them was there is at least one child with Tourette’s in every school in the U.S. It was one of those facts that I had to remind myself. In the video, I saw children between the ages of six to thirteen with Tourette’s. I found myself relating to them, especially a boy named Seth and a girl named Anna. When I heard her talking about seeking true friends, I ached because I remembered how bad I longed for a true friend for years. I cried while seeing Anna pounding her stomach, seeing her cry, scream, and talk. I cried because I saw myself. I cried because I felt her pain.

Even today, I am sensitive about my Tourette’s. I think it’s because knowing that I’m no different, and feeling like it are two different things. However, I am more truthful about it now. I have told a few of my friends what I have, because I think it is wise to. My doctor, thinks that I should tell my friends, too. I don’t think I’ll have to lie about it again. I am not embarrassed anymore. I previously had one incident, caused by my Tourette’s last year. It made me feel so many emotions at once and I quickly burst into tears. I don’t want to cry for something that is not even worthy of my tears. It’s been done too many times. I know my tics aren’t going to suddenly go away. I don’t expect them to. I know it takes time. I don’t have any stress or depression. I think the stress was one of the harder stages. I will continue to find my way, and the more I do, I think the more I will accept my Tourette Syndrome.

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.