2016 NJCTS Youth Scholarship Award Essay: “Resilience Through Adversity”

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!

MadelynO

MadelynO

To be diagnosed with Tourette Syndrome is to be taken on a roller coaster that very few people can comprehend; its a fierce, vicious whirlwind of nerves carefully tucked behind a constant burning desire to be “normal”. For me, Tourette’s showed itself in ways far more complicated than tics. It came paired with anxiety disorders and insomnia that, at times, seemed to take over my life. During early childhood, Tourette’s was my worst nightmare; I went through school living in constant fear that my classmates would notice my tics and ostracize me for my differences. Through the duration of middle school, one seemingly small tic caused anxiety beyond anything I had experienced before. It was my eye-rolling tic, a tiny movement seen by teachers as the ultimate sign of disrespect. When this tic became a problem in school, I had no option other than to tell my teachers, and subsequently my fellow classmates about my Tourette’s. The time in my life that I experienced this was difficult; anxiety overwhelmed me daily to the point that on some occasions I couldn’t go to school. However it was this difficult time that made me the person I am today. As I grew older I began to see the gifts that Tourette’s has given me. It has taught me to be resilient, never giving up in the face of adversity no matter how great the challenge. As I grew older, I became a firefighter, swimmer, and US Naval Sea Cadet, all challenging, yet rewarding endeavors, that I likely would have never attempted without the courage and strength I learned from having Tourette’s syndrome.

Through the process of growing into the young adult I am today, my diagnosis of Tourette’s Syndrome has never ceased to open windows of opportunity in my life. At the age of 13 I was selected as the sole New Jersey representative to attend the Tourette Syndrome Association’s youth ambassador training.This training equipped me with the tools I would need to advocate for myself and others, as well as taught me a great deal of leadership skills that would prove to be important in the future. Today, my experience with Tourette’s has come full circle. As a petty officer third class in the US Naval Sea Cadet Corps, I faced many challenges. These hurdles came quickly and never seemed to end, from trying to remain in a statue-like state, to nights with very little sleep, getting to the rank of petty officer was not an easy feat. My efforts were rewarded, however, in September when I became the squad leader for eight middle school, and four high school students. When I met my eight younger cadets last fall, I quickly learned that many of them had neurological disorders themselves, from Asperger’s syndrome to dyslexia. My experience with Tourette’s and associated disorders has given me the ability to create an effective path for communication with my cadets and their parents, as well as taught me how to promote unity within my squad. Seeing my cadets’ confidence blossom, and their leadership skills take off at our annual inspection was one of the most proud moments I have experienced in my lifetime. As I prepare my cadets to go to a two-week boot camp this summer, I realize for the first time just how great a gift having Tourette Syndrome is. It allows me to do the unthinkable, it allows me to understand the misunderstood.

2016 NJCTS Youth Scholarship Award Essay: “Thank you, Tourette’s”

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!

SeanK

SeanK

The piercing frequency of my alarm clock shattered the barrier between an unconscious dream of mine and the cruel reality of Monday morning. With eyes half open and hair protruding in all directions, I made my way to the shower. As I flicked the light switch on in the bathroom, I stared at the mirror long enough to witness myself clench my left arm, throw my right arm to my side, and make a faint noise in my throat. Following these tics, I exposed to my mirror a gigantic smile; today was going to be a good day.

I have Tourette’s, and although it’s contrary to the above paragraph, I didn’t always embrace my tics. Learning to live with, accept, and at times even love my Tourette’s was a long, hard journey. I wouldn’t say I was ever depressed, though I was often frustrated. Not only was I dealing with the physical effects of Tourette’s, but also the psychological aspect. Any time I twitched, clenched my jaw, or made any faint noise in my throat, I felt anything but normal. Though the truth was that I was a teenager and with this title came normal teenager worries such as insecurity. Whenever someone asked me why I continuously did some movement with my body, I’d make up some stupid excuse then quickly change the subject. Though, it wasn’t until the summer of my junior year that everything changed for the better.

As the school year ended and summer got closer, I started to prepare my trek to Hardwick New Jersey where my friends and I decided to kick off our summer by volunteering as camp counselors at a Muscular Dystrophy Camp. The format of the camp is that each volunteer gets assigned a kid diagnosed with some form of muscular dystrophy, and we spend the week doing everything in our power to make it the best week of their lives. My camper’s name was Ethan, and although he was a little shy at first, we left the camp best of friends and even keep in touch to this day. From the beginning of camp, I sensed that Ethan’s muscular dystrophy, much like my Tourette’s, had him dealing with psychological effects. I did all I could to make him feel like he could talk to me about anything; that I would hear him out and be there for him.

One particular day Ethan was feeling especially frustrated due to the amount of medicine he had to take at breakfast and I immediately sensed this. After about ten minutes of silence, I said “Man I hate taking medicine everyday it’s so annoying.” I saw Ethan’s head perk up, and we had one of the most moving talks I’ve ever been a part of. I told Ethan about my Tourette’s and how everyone has something in their life that they struggle with; I told him it’s what makes us unique. I told him to never be ashamed of what makes you different because the toughest battles are given to the strongest soldiers. I didn’t know where my words were coming from, but I knew they were helping and that they were true. I didn’t sleep much that night, but rather stayed awake all night thinking about what I had said. I realized how much I needed to take my own advice, and vowed from that night on that I would no longer hide my insecurities but rather embrace them.

It was the camp that catalyzed this realization, but it was my Tourette’s that was trying to teach me this lesson all along. So, how has Tourette’s played a part in my life? It’s made me realize that it’s ok to be different and that instead of hiding our insecurities we should embrace them as things that make us wonderfully unique. Everyone has their insecurities, but the way that I now see it is that we can either let them rule our lives or we can embrace them and learn to love ourselves. Although it might sound odd, I am forever grateful for my Tourette’s; it has taught me to love and accept myself for who I am, and this lesson is priceless.

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.

BRTV Morning Show interviews Girl Scouts about their efforts to raise awareness of TS

Ilina, Jaclyn, and Cami from Girl Scout Troop 60808 were interviewed by the Bridgewater Raritan High School’s morning news show about their effort to raise awareness for Tourette Syndrome. They want everyone to wear blue on Friday in recognition of Tourette Syndrome Awareness Day in New Jersey on June 4th. Way to go, girls!

Teens tackle Tourette’s with fundraising walk

NJCTS Youth Advocate Mike Hayden inspired his high school English class to organize, promote, and host a TS awareness event with “Teens Tackle Tourette’s.” They recently held their main event by hosting an awareness walk on their HS campus. Over the past few months, NJCTS and Mike have educated his class about Tourette Syndrome and answered questions about the misunderstood disorder. The T3 students are a passionate group and we are so proud of all they have accomplished. Check back soon for more pictures and details.

A group of students enjoy the Teens Tackle Tourette's (T3) walk, held at Pascack Hills High School on Sunday, May 22. The class raised more than $1,120 for the New Jersey Center for Tourette Syndrome. Pascack Hills student Michael Hayden poses with Dr. David Levesque, of Westwood. The two have Tourette syndrome and have made it their mission to spread the word about the disease.

A group of students enjoy the Teens Tackle Tourette’s (T3) walk, held at Pascack Hills High School on Sunday, May 22. The class raised more than $1,120 for the New Jersey Center for Tourette Syndrome. Pascack Hills student Michael Hayden poses with Dr. David Levesque, of Westwood. The two have Tourette syndrome and have made it their mission to spread the word about the disease.

Read the story in Pascack Valley Community Life.