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TOURETTE ASSOCIATION GOLF CLASSIC (09/19/16)
Matthew Eskenazi

Thank you for attending this event and for your continued support of the Tourette Association of America. My name is Matt Eskenazi, I’m a sophomore in high school and I have Tourette Syndrome.

Throughout my life, people have asked “How would you feel if you didn’t have TS, if you just woke up one day and it was gone?” and they’ve assumed I would wish it away but I can’t imagine my life without it and I’m thankful for the lessons I’ve learned along the way.

My tics began when I was four years old. I blinked my eyes and scrunched my face and the tics would come and go. I didn’t really notice it, but my parents were concerned so they took me to the doctor and were told to “keep an eye on it”.

During elementary school my tics got worse and I developed arm thrusting, head jerking, foot stomping, sniffing, snorting, throat clearing, and squeaking. I didn’t want to be different from everyone else and during school I fought to hide my tics but there were many days I had to leave the classroom to find a place where I could let them out and I worried that someone would see me and make fun of me. I also fell behind in school because I couldn’t concentrate on the teacher and I missed a lot of instruction when I left the classroom. There were many days I often wondered “why me” and wished that I could be “normal”; I felt so frustrated, stupid, sad, and angry.
Shortly after turning 9-years old, everything fell apart. I remember coming home from school one day and sitting on my mom’s lap crying because the tics were relentless. I went to the Neurologist and was diagnosed with a motor and vocal tic disorder within the category of Tourette Syndrome. I took medication but it was hard to find the right ones and there were side effects such as fainting, weight gain, and fatigue. I also went to therapy to learn strategies to help manage my tics and anxiety. Through their own research, my parents contacted the TAA and we were offered support, guidance, and the opportunity to meet other children and families living with TS through Chapter activities and programs such as meet-ups and the Buddy Program. I realized I wasn’t alone; there were many other children and families going through a similar experience.

During fourth grade my tics got worse as eye rolling, shoulder shrugging, jaw snapping and screaming were added to the tics that I already had and the tics occurred hundreds of times an hour. I was officially diagnosed with TS, OCD and ADHD. Everyday I dreaded going to school as I fought with my body to control what I had no control of and I fell further and further behind. It was impossible to hide my tics and others couldn’t help but to glance or stare, ask what was wrong with me, call me names such as “freak”, or tell me to “be quiet”. My self-esteem was at an all time low and I wished they realized that the inconvenience they experienced from my tics was nothing compared to the challenges that I had to deal with everyday.

Again, my parents contacted the TAA and they arranged for a Youth Ambassador, a teen with TS, to educate my class about TS and this was life changing for me. While I listened to the presentation, I was amazed by the Youth Ambassador’s confidence as he spoke about living with TS and when he finished I found the courage to stand next to him and answer questions from my classmates. When it was all over, I was so relieved because I didn’t have to hide my tics anymore, everybody was more understanding, and I promised myself that I would not let TS take over my life and that I would become a Youth Ambassador.

Between fourth and sixth grade my tics got even worse. I ticced hundreds of times an hour and the tics became harmful and disruptive. I suffered sores in my mouth from a cheek biting tic, strained muscles in my neck and back from jerking and bending, bruising on my shins and ankles from a leg banging tic, and bruising all over my stomach from a tic that caused me to punch myself. My screaming was so loud that our neighbors across the street could hear me and I developed corprolalia, which you may know as the “cursing tic” and only occurs in 10% of those with TS.

I hated going to school but everyday I got up and faced the challenges that awaited me. The kids would tease me by mimicking me and I learned early on to ignore them. I struggled in my classes and the help that I received was just not enough and although most of my teachers were compassionate there were a couple that made insensitive remarks or requests. Once again, my parents contacted the TAA and a team of Youth Ambassadors came to my school to educate the sixth grade about TS and at the end of the presentation I stood proudly with them and answered questions from my classmates. Also, an adult from the TAA came to my school and educated the administration and teachers about TS.

Towards the end of sixth grade I began missing a lot of school. Even though I tried my best, I could only make it through a couple of hours each day. Eventually, my tics were so severe that I had to stay at home with a tutor which was lonely but I made the best of it and saw my friends after school or on the soccer field which was my escape because when I stepped on the field my tics seemed to disappear.

In seventh grade, I didn’t return to my school and instead spent the next two years at a small private school for kids with learning disabilities and I loved going to school. During this time, I learned how I learn best, all of my skills improved, the medications were helping, and my tics decreased a lot but my greatest accomplishment was that I kept the promise that I made to myself in 4th grade and went to the National TAA Youth Ambassador Training in Washington D.C.

Today I still have motor and vocal tics everyday and some days are more challenging than others but I’m better equip to handle them. I have a great group of friends and a loving and supportive family. I’ve moved up to another small private school and receive extra help. I’m a high honors student, on the varsity soccer team, coach in a youth soccer program, and work as a soccer referee. As a Youth Ambassador I’ve educated over one thousand students, teachers, and parents about TS and I participate in our Chapter’s youth and family programs as well as mentor newly trained Youth Ambassadors.

Throughout my years I’ve gained a unique perspective on life. It’s easy to be grateful for the good things in our lives, but what about when life throws you a curveball? Don’t get me wrong I’m not like “whoo-hoo, I have Tourette’s” but I’ve adapted to my TS and I’m thankful for all of the lessons it has taught me:
• Thank you TS for teaching me resiliency and perseverance; how to get back up after being knocked down and to keep fighting for what I want out of life no mater what the challenges may be.
• Thank you TS for teaching me open mindedness and compassion; to step back and observe before making an assumption and reacting because you don’t always know the whole situation or what someone else is going through.
• Thank you TS for teaching me tolerance and acceptance for myself and others who are different.
• Thank you TS for teaching me how to laugh at myself because let’s face it, sometimes TS causes me to do silly things.
• Thank you TS for teaching me how to hold onto hope; to always believe that one day everything would be okay.
• Thank you TS for teaching me forgiveness; to forgive others who may be insensitive due to a lack of understanding.
• Thank you TS for teaching me how to be confident so that I can advocate for myself and others who live with TS.
• Thank you TS for teaching me that it’s okay to ask for help, it’s not a sign of weakness.
• Thank you TS for giving me the passion to help others and for the opportunity to be a part of the TAA and their continued efforts to make life better for those people affected by TS and Tic disorders.

I am happy with my life and with whom I’ve become and often remind myself of what Tim Howard, professional soccer player and hero of mine once said:
“I live with Tourette’s. I try to excel with it. But I don’t suffer from it. That’s…the one thing I don’t do.”

Thank you for joining us today at the Westchester Country Club in support of the TAA and a special thanks to the NY Hudson Valley Chapter of the TAA who has provided me with support and encouragement every step of the way!