2016 NJCTS Youth Scholarship Award Essay: “Me, Myself and Tourettes”

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!

SebastianL

SebastianL

Imagine telling a child with the hiccups to stop making sounds. That child will try his hardest to keep it inside of him, but it gets to a point where your body stops listening to your mind. He doesn’t want to have the hiccups, but it JUST WON’T GO AWAY. That’s exactly what it’s like to have Tourettes Syndrome, except you’re stuck with it for a much longer time.

My parents first noticed subtle things that weren’t really that odd, but I just kept doing over and over again at around the age of six. Every time we ate, I had to have had my fork and knife perfectly aligned with the napkin.

Not really that weird, but to the point where it became annoying since I did it everywhere, not just at home. But once I entered elementary school, things became a little more difficult for me. I couldn’t stop shifting around in my seat and I couldn’t stop moving my long hair out of my face. I became a common target for yelling at because while everyone was sitting doing work, I was sitting on my knees and tapping my pencil. My parents thought they were going to be stuck with a troublesome kid, but it wasn’t quite that.

One day at school, my surfer-dude type haircut was really getting on my nerves. Strands of hair were in front of my eye and I felt as if my sense of touch was off the charts because it felt like I could feel every single piece of hair bother me. So, I got my safety scissors out of my pencil case and gave myself a new haircut. From that day on, I didn’t have bangs that would bother me at school. However, when I got off the bus that day, my mother wasn’t too happy to see a twenty dollar haircut go to waste like that. I explained what happened and it was around this time my mom began to think that these weren’t really traits of a so-called troublemaker kid. So we went to a doctor and they told me I had “nervous tics.” I went along with it, because why would I argue with a doctor right. So from then on, I assumed that I was just some nervous kid for no reason.

Time went on and I entered the middle school where everybody was grown up and cool. By this time, I’ve had a track record of being “that” kid and I just accepted the status I was given and tried to run with it. But this is when my “tics” started to evolve into what is actually known as Tourette’s. I started making noises and making noticeable repetitive movements. One day during math class, my favorite period of the day (sarcasm), I was feeling rather anxious. I made a high pitched noise, kind of like when a girl sees a spider and yells “EEK!” Some heads turned but I just played it off like I always have whenever I did something weird. While the teacher was going on with her lesson, I felt this extreme tension in my throat. This is when I compare it to hiccups, because once it starts, you can’t stop it. I tried really hard to “hold it in” but it just hopped out. Heads turned once more and the teacher gave me a warning, telling me to stop interrupting the class. About a minute later, something in me decided to bother the class once more and I let out another “EEK” like noise. My teacher had enough of my shenanigans by then and yelled at me in front of the whole class and told me to go to the office. I walked out with my head low, confused and sad because I wasn’t able to understand why I was doing these things. I wasn’t nervous at all and I’ve never done something that outward. The principal told me to stop being a bother to people and I tried to be as quiet as possible the remainder of the day. When I got home, all the sadness I was holding in just exploded into tears when my mom asked me how my day was. I explained to her what happened and we went to the doctor once more. They spoke with my mom and told her we should go get an MRI of my very nice brain. They did a bunch of stuff I didn’t get and when we left she hit me with the “nervous tics” phrase again. I’m convinced that she knew it was Tourettes but she didn’t tell me because she didn’t want me to feel bad.

Fast forward and I’ve had plenty of time to learn how to hold in my “tics” while at school and public places and to allow them to come out at home. It’s freshman year in high school and by now I’ve figured out for myself that what I have was probably Tourettes. I asked my mom if we could get some medicine to ease them a little bit but that just made me feel sick all the time. So we went to another doctor who asked my morn if he could talk to me in private, so I could speak honestly about my Tourette’s. He and I spoke about what was going on with me and we had a genuine down to earth conversation. He told me about his friend, who happened to have Tourettes, who also happened to be a heart surgeon. That heart surgeon had the same repetitive noises and movements like I did, but whenever he was going into an operation he became as still as a statue. His whole psyche changed and he was able to do amazing things and save people’s lives. My doctor told me I didn’t need medicine, that the power to control my Tourettes was in me and I just had to hone it like his friend did. I walked away from that visit with a new sense of hope and pride. From that day on, I never let my Tourettes get the better of me and I aimed to make the best me possible. And I’ve never abandoned that mentality to this day.

Despite all the negative things that I was forced to go through, at the end of the day, it made me stronger and I was able to push myself harder than anyone else. Instead of resenting the people who made fun of me, I accepted them and grew to understand why people acted the way they did. With all the time I kept to myself, I thought about things that a child in middle school wouldn’t normally think of, the world, humanity and myself as a person. I also continued to read a lot and it became relatively easy for me to excel in school, always meeting honors. I believe I grew wise beyond my years and rapidly became a person with a wonderful perspective. My Tourette’s created a teen with more love, acceptance, and knowledge than those around me and I am proud of that. And if having Tourette’s was the only way that that could happen, I wouldn’t give it up.

2014 NJCTS Children’s Scholarship Award Essay: “Music Rescued Me”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

I am Matt and I am a senior at Red Bank Regional High School. Graduation will be on June 20, 2014. I am in the Visual and Performing Arts Academy as an lnstrumental Music Major. I play clarinet, bass clarinet and saxophone. I also have Tourette Syndrome.

As early as I can remember I had tics. These tics ranged from a lot of eye blinking, to throat clearing, sniffles, and movements from my head and neck. I interrupted quiet class time especially while taking exams due to my vocal throat clearing and sniffles.

When I was in 4th grade I wanted to study the clarinet. I was discouraged all the way until 5th grade due to my tics. Finally, after really practicing a lot, I got good enough to audition for the All Shore Band in Middle School and I won second chair bass clarinet. I showed myself and everyone around me, including my panents, my older brother and all of my teachers that I could overcome Tourette Syndrome.

My neurologist was very helpful to me. He recommended that I stop eating foods with nitrates in them and to also stop eating anything with food dye and keep my sugar intake low. This is very difficult to do as a teenager. I did my best but it was very hard to do. While everyone else was eating hot dogs, cup cakes, Twizzlers and drinking orange soda, I couldn’t.

I was also prescribed medications. These really didn’t seem to help. But I took them. Some made me very tired but I keep taking these medicines thinking how much worse I would be without them.

My clarinet rescued me. I found out that I had perfect pitch. This gift I believed was my compensation for having Tourette Syndrome. In high school I really started achieving musically. I was accepted to the High School All Shore Band, NJ Region 2 Band, All State Band, All Eastern Band (Hartford, Connecticut) and finally the All National Band (Nashville, Tennessee). Yes, I had my tics throughout these accomplishrnents and yes, many times I was disturbing, but I worked through these.

lf it wasn’t for Tourette Syndrome I may not have pushed myself in the beginning and may not have ever discovered that ! have perfect pitch. I did not let this Syndrome stop me. I will be attending Eastman School of Music in the fall.

Big neurologist appointment today

Well, today is my appointment with my neurologist. Ironically, having had Tourette’s since I was 3 years old and having been diagnosed for about 3 years now, this will only be my second time seeing my neurologist. The first and only time I have seen him as a patient was when he diagnosed me about three years ago.

Now, I am looking into meds, specifically the Clonidine patch, that worked so well with so few side effects for my cousin. I’m nervous but also hopeful. What would it be like to lay down in bed to sleep and be still? I have never felt that feeling, and I there is a small part of me that holds the hope that I may soon feel that — only a small part, though, because I don’t want to get my hopes up if it doesn’t work out.

I will update you guys soon on how my neuro appointment goes. On a side note, my newest decision as of the moment is that I want to study to be a pediatric neuropsychologist who works in a hospital setting with children who have either epilepsy, traumatic brain injury, brain tumors or neuropsychiatric/neurodevelopmental disorders.