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.

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: “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.

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.

2016 NJCTS Youth Scholarship Award Essay: “A Journey 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!

JordanT

JordanT

Tourette Syndrome has played a significant role in my life ever since I was diagnosed in fifth grade. Initially, it did not pose much of a threat for me. I was still able to focus during school, which allowed me to continue my education and learning. I was grateful for that phenomenon, but it did not come without a caveat. Even though my facial tics were not very severe, I still developed a shyness and self-consciousness because of them. However, I was surrounded by a group of kind and accepting friends, which greatly alleviated my anxiety.

I was able to prosper throughout middle school with the support of my friends and family, but high school was a much different story. I am currently attending the Academy for Information Technology, a prestigious school dedicated to teaching students about the vast possibilities of business, information technology, and computer science. Unfortunately, I was the only student from my middle school who enrolled that year, so I was in a completely new environment. I was terrified at first, but I was able to overcome my fears and make new friends, just as friendly as the ones I had in middle school. The course work was much tougher than in middle school, but I was able to succeed in my academic endeavors. My facial tics were under control as well, so all was well in life.

My senior year of high school was a major turning point for me and my Tourette Syndrome. At the start of the year, I felt an immense weight on my shoulders because of all the new responsibilities I had to assume. With more demanding school work, the college application process, and my extracurricular activities, I felt swarmed with an enormous amount of pressure. And with the additional stress, the frequency of my facial tics skyrocketed. The first few weeks were probably the worst. During class and at home, I could barely keep my eyes open. Not because of a lack of sleep, but from incessant blinking, one of my most prominent facial tics. The warm summer weather only aggravated my symptoms. My self-consciousness also reemerged, as I was afraid people might start noticing my facial tics. I felt like I was hopeless, but I resolved to overcome this obstacle.

Senior year marked a new precedent for my Tourette Syndrome, but I gained a valuable trait from my facial tics as well. My tics were starting to impede my focus, so I knew I had to something or else my learning would suffer. One day after school, I went into deep contemplation and emerged with a strategy for alleviating my troubles. I realized my Tourette Syndrome was a medical condition, so I would not be able to just make it go away. Instead of trying to arduously suppress my facial tics, I decided to embrace my tics as a definitive part of me. Whenever I felt a sudden wave of facial tics about to occur, I would just let it wash over me and run its course. With this method of coping, I was able to maintain my focus and composure while doing my school work. It took some practice, but after a few weeks, I was back on track for success. My facial tics now seemed like involuntary actions, just like breathing or walking. With my new training, I acquired the virtue of patience, which has paid off time and again in school and life. I was confident in myself once again with inspired passion that I could overcome such an obstacle. Instead of seeing Tourette Syndrome as an adversary, I can now see it as a motivator to help me continually improve myself throughout life.

Hillsdale Teen Inspires his Community to Tackle Tourette Syndrome

NJCTS Youth Advocate Mike Hayden and T3 co-organizer Meghan McIntyre welcome NJCTS Education Outreach Coordinator Gina Maria Jones at the Teens Tackle Tourette's walk on May 22, 2016.

NJCTS Youth Advocate Mike Hayden and T3 co-organizer Meghan McIntyre welcome NJCTS Education Outreach Coordinator Gina Maria Jones at the Teens Tackle Tourette’s walk.

Mike Hayden is taking his Tourette Syndrome advocacy efforts to the next level.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics and is frequently accompanied by other neurological or mental health disorders. 1 in 100 school-age children lives with TS and many report feelings of isolation and have been bullied because of their disorder.

Hayden, now 16-years-old, was diagnosed with TS in fourth grade although he started showing symptoms in kindergarten. In 2012, he decided that he wasn’t going to let his diagnosis hold him back so he stepped up to become a Youth Advocate for the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS).

NJCTS Youth Advocates lead presentations about TS in schools and community groups to raise awareness, promote understanding and tolerance, and deliver a strong anti-bullying message. They also present with NJCTS-partner doctors at hospitals to educate medical professionals about TS.

When it was time for Hayden’s honors English class at Pascack Valley High School to choose an issue to which to bring attention for their final project, Hayden shared his personal journey with TS and the class was instantly inspired. They organized the group “Teens Tackle Tourette’s” and spent the school year organizing, promoting, and producing a fundraising walk.

“It was an incredible feeling to know that my class truly cared about this cause,” said Hayden. “They knew it was close to my heart and I had many people tell me that there was no question in their mind that this is the cause they wanted to support. It is amazing that they would support me in raising awareness for this issue that many people are incorrectly educated on.”

Hayden recalled that when his family needed help after he received his TS diagnosis they called NJCTS for education and support. To better educate his classmates, he decided to partner with NJCTS Education Outreach Coordinator Gina Maria Jones and Executive Director Faith Rice for a series of in-class presentations about Tourette Syndrome and associated disorders.

“I figured that if we were going to learn about TS, we might as well get the experts in to help teach us,” said Hayden on reaching out to NJCTS for guidance. “I have had many years of experience with NJCTS, so I know that they are truly the best of the best when it comes to education and outreach.”

The Teens Tackle Tourette’s T3 walk took place on May 22 at the Pascack Valley High School Campus and raised more than $1,120 which was donated to NJCTS. During the walk, there were several guest speakers as well as food, games, and giveaways.

“NJCTS is proud to work with young people who take the initiative to raise awareness,” said Education Outreach Coordinator Gina Maria Jones. “It is because of Youth Advocates like Mike that our Youth Development programs are so successful and we hope that all kids living with TS will follow in his footsteps.”

Soon after hosting the Teens Tackle Tourette’s walk, Hayden led a Youth Advocate presentation to 150 fifth graders at Fairmount School in Hackensack on May 24 and delivered the keynote address at the Dare to Dream Student Leadership Conference at William Paterson University in Wayne, NJ on May 25.

“Youth Advocates like Mike Hayden live out the mission of NJCTS and advance public perception, understanding and acceptance of people with TS and associated disorders,” said NJCTS Executive Director Faith Rice. “We are so proud of everything Mike has accomplished.