2015 NJCTS Youth Scholarship Award Essay: “I Am Who I Need To Be”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. I hope you enjoy it!

MaroG

MaroG

Growing up I never really understood much about Tourette syndrome other than it made me twitch all the time and I never made many friends because of it. I was quickly rooted out as the weird kid in the third grade, when it first developed, and it didn’t get much better the following year, or the one after that. I was never very popular and I was typecast as the weird twitchy kid with no friends up threw middle school. It’s not that I was bullied; rather everyone in school always ignored me so that I was never included in games or parties because I guess sitting near the kid who had a twitch was too uncomfortable for all of them and it was easier to push me aside. But what really bothered me was that if they thought it was uncomfortable for them then they really didn’t understand how much the twitching bothered me. Needless to say I spent most of my time alone when I was younger because of this and even though most would probably be very upset about this I learned to manage it. Yes it would have been nice to have a few friends growing up, but more importantly this taught me a sort of independence that is very important to me now.

Even though Tourette’s makes focusing on a single spot very difficult for me when I’m constantly jerking my head from side I have loved reading ever since I was young. In middle school, when I still didn’t have any friends I’d read every day to pass the time simply because it was better than doing nothing. I read because I’m bored and I have a lot of free time on my hands in and out of school. Or at least that’s how it started back then because as time went on I realized that reading wasn’t just a passing interest, it became necessary for me and it still is.

Eventually all the childish bullying stopped bothering me when I began to realize that I am who I am and there’s simply nothing anyone can do to change it, and I don’t want to change. So if I’m stuck like this I had might as well prepare to be like this for the rest of my life, and I am.

And eventually the bullying stopped all together; my classmates forgot what it was that made them not like me and they forgot that they didn’t like me to begin with after I learned how to control the Tourette’s on my own a little bit better, or maybe they just decided let it go. But unfortunately the damage was done, the end result to all this was I never learned how to interact socially, and I didn’t even realize it until high school. Whenever someone wanting to talk approached me I didn’t know what to say or how I should say it. Should I be serious or joking, sincere or sarcastic, should I try to continue the conversation or try to break away? The idea of having to talk to someone became anxiety, and the Tourette’s didn’t stop, it wasn’t as bad as when I was younger but I was still struggling to focus and not lose control of my head, making any confrontation that much more nerve racking because I really didn’t want anyone to notice.

But that doesn’t mean that I’ve become some sort of social pariah who hides away behind a book all the time. It’s true that Tourette’s was never easy to deal with but that just meant that I had to work through it if I wanted to take back a normal life that I always wanted. Medication was always out of the question because that would only cover the problem, not fix the problem and. I would just be running away from my personal reality. If I couldn’t face that I cant face anything. I had to learn that even though having Tourette syndrome had a big effect on how I ultimately turned out it doesn’t define who I am, and even though I didn’t turn out how I wanted to, I am who I need to be.

New Jersey students get lessons about Tourette from NJCTS Youth Advocates

NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.

Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.

“Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all,” NJCTS Education Outreach Coordinator Gina Jones said. “He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion.” Continue reading

Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

Continue reading

I’m still at it!

5 years post National Youth Ambassador Training in Washington, DC and I am still at it!

Following my fall semester at SUNY-Binghamton I was asked to return to Memorial Middle School in Fairlawn, N.J., to speak with the 7th-graders about Tourette Syndrome and bullying. During the back-to-back presentations, I had the opportunity to tell my TS story, as well as explain what the disorder is and why you should not bully anyone.

The students were engaged throughout the entire presentation and had a bunch of questions. For example:

  • Were you ever bullied in school?
  • Do you still tic?
  • Do you know alot of other people with TS?

They were all shocked at how difficult it was to hold in a tic when I compared it to a scratch on their head and did not allow them to touch their heads for two minutes; everyone was squiriming in their seats.

All of the students promised me that they understood my message and that they would not bully their peers.

I encourage all of you readers to speak out about Tourette Syndrome, bullying and your own personal story. If you have any quesitons about how to get involved, please contact the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS).

Haddon Township (N.J.) High School students learn about Tourette Syndrome

Faculty members of Haddon Township High School and student members of the school’s Psychology Club devoted time on February 2 to learn about Tourette Syndrome.

Known also as TS, Tourette Syndrome is a neurological disorder characterized by uncontrollable sounds and movements known as tics. Even though as many as 1 in 100 Americans show symptoms of the disorder, it’s still frequently misdiagnosed and misunderstood.

The New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) Education Outreach Program offers school in-service presentations for faculty and students. For educators, the focus is on identifying and accommodating students with TS and its co-occurring disorders including ADHD, OCD, depression and anxiety. Students are given a lesson in acceptance, anti-bullying and empowerment.

NJCTS Executive Director Faith W. Rice is grateful for the invitations to present at schools throughout the state. “Awareness and training go a long way in creating understanding of Tourette Syndrome and compassion for those who are living with it,” she said.

“Even if a teacher or classmate hasn’t met a student with TS yet, chances are likely that they soon will,” added Rice. “Our presentations are taking away the stigma of this disorder, and by doing we’re making schools a safer place for kids with TS and other neurological disorders.”

NJCTS School In-Service presentations are delivered by master’s level educators with (often personal) experience assisting students with Tourette Syndrome. For more information about the Education Outreach Program, or how to arrange a presentation for your school or club, visit www.njcts.org or call 908-575-7350.