2015 NJCTS Youth Scholarship Award Essay: “My Story with Tourette’s”

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!

NyamekeS

NyamekeS

Ever since I was a child, I have had small symptoms of Tourette Syndrome. I use to blink my eyes multiple times, when I hiccuped it was extremely loud and annoying. I use to get made fun of because of my hiccups but it didn’t acquire to me or my parents that this had something to do with Tourette Syndrome. My parents and I didn’t notice my symptoms on February 2011. In February I had an attack where I couldn’t stop shaking my hands my head jerks quickly. I was rushed to the hospital where I was tested for several diagnoses but not Tourette Syndrome. Towards the end of my visit, they then brought a neurologist in who then proceeded to diagnosing me with T.S.

Since I was diagnosed with T.S., it was very challenging to accept myself. I always doubt myself thinking I couldn’t do anything. I questioned my parents and God blaming them for what I thought was a sickening disorder. Everyday during class I made my tics however, they were small and I made them slightly noticeable. As the years progressed, I started to feel comfortable with myself and my parents always told me “God will never give you something you can’t handle”. After hearing this quote and eventually believing it I started to open myself more and began to tell my teachers and close friends. My tics grew slightly bigger but I never tried to hide it. Last year, in my major class which is Child Development, we did a research project on children with special needs. I figured this was the perfect time to share what I know, learn and a bit about me to the majority of the class who didn’t know that I have Tourette Syndrome. Towards the end of the presentation I asked my class if they know anyone with Tourette, only two students raised their hands. I continued with saying “You should all raise your hand because I have Tourette Syndrome”. The class was shocked but they never left my side, they supported me through everything I did. They brought Tourette Syndrome awareness buttons for T.S. Awareness month. All of the students in my class made me realize, that if I can share my story, I can do anything I put my mind to.

As a future educator in the child development field, I want to spread the word about Tourette Syndrome. I don’t only want my students to be aware but my coworkers as well. Telling my coworkers and my students will spread the word to other coworkers, students family members until the whole state, better yet, country is aware of this motivational disorder. I want my preschoolers to know that just because people have disorders or may look different doesn’t mean they are different. I want them to learn about bullying and how it shouldn’t be practiced at all. As a future educator, I want my preschoolers to see the positive of everyone with a disorder and/or disability. People with disorders or disabilities are just as smart, caring, loving and friendly as people without disorders or disabilities. Yes, I have had some challenges and I am still going through them. But I also remember, just because I have Tourette Syndrome doesn’t make things impossible for me, just a little difficult.

2015 NJCTS Youth Scholarship Award Essay: “Holding My Breath”

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!

JacobF

JacobF

In fourth grade, I was diagnosed with Tourette’s Syndrome. This condition has influenced who I am, how I act, and how l think of myself. Because of Tourette’s, I will always consider words like spazz, uncontrollable, and random as terms of endearment. I would gladly use these words to help define me, because to some extent, all are true. I didn’t go through a particularly turbulent childhood, but often found myself on the opposite side of name calling and taunting. For anyone unfamiliar with it, Tourette’s is a condition in the brain that causes a person to make random sounds and movements. Importantly, these sounds or movements are Unvoluntary, not Involuntary, essentially meaning that I can, at times, hold them back to some uncomfortable degree, similar to how a person can hold his breath. Go ahead; hold your breath for as long as you can. How long before you are compelled to take a breath? That compulsion, the one that made you breathe, even though you fought it for a short period of time, that is very close to the impulse that l feel when I need to tic. Having Tourette’s has always made me feel different, sometimes disjointed and often angry with myself over my inability to fully reign in my own body. Even now, years after being diagnosed and having come to terms with my condition, I still find myself having odd fits of rage directed inwards, livid with myself for the inability to stop something I know I cannot control. But when I step back and take a look at who I have become, I see the deep roots and tendrils of Tourette’s penetrating myriad facets of my life, personality and behavior.

My Tourette’s experience has provided me a unique and beneficial perspective in various situations. For example, my participation in the Model United Nations (MUN), a political debate organization where we assume the views of different countries like the real UN, creates scenarios that I am better at navigating because of lessons learned from my Tourette’s. In MUN committees, I can quickly combat poor information, coordinate people, and get a full picture of the balance of power within the room. I believe that this can be traced back to my experience of entering a new classroom or situation where people do not know about my Tourette’s. The absence of basic knowledge in both situations translates to a sense of a lack of power and control. Although this is a discomfort for most people, I believe that steps that I have learned to take to deal with the inevitable lack of control over my own body and other people’s reactions have made me more capable than most in dealing with these types of scenarios. In life, I have to quickly educate people, make them understand my Tourette’s and try to get them on my side, so to speak. ln MUN, I have to do the same thing although not only about my Tourette’s, but also about the position that I am taking on behalf of the country that I have been assigned. Constantly having to run through this exercise can be exasperating at times, but it also makes me more sensitive than most to the power of logical explanation and knowledge and also more vulnerable to the detrimental effect of their absence. I find it gratifying that learning to deal with Tourette’s has helped me in MUN, and other facets of my life. lt has instilled within me a rational and objective approach to life based on the quest for knowledge and understanding. lt has provided me with a thick skin, and a self-deprecating sense of humor. Tourette’s is a part of me. lt influences who I am, and I gladly accept the challenges it presents for that opportunity to be uniquely, sometimes loudly, and always
completely, me.

2015 NJCTS Youth Scholarship Award Essay: “Facing limitations on life”

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!

HaleyF

HaleyF

I carefully listened to the orthopedist explain the new limitations on my life. He gave me rule after rule of how to configure my activities to my injuries. I could not participate in sports or any physical activities. I was restricted from many of my favorite hobbies—horseback riding, gymnastics, softball, soccer, and even roller coasters! I had two herniated disks in my neck and three bulging disks in my back. At nine years old, my doctor told me I had the spine of a woman in her 60s. I didn’t understand why my spine was so deformed until a neurologist explained the cause of my spinal injuries as well as the mysterious jerking, twitching motions I couldn’t control. At nine years old I was diagnosed with Tourette’s Syndrome.

That was the moment I began the transition from child to adult. I knew things would be harder for me than most other kids, but I was determined to live my life the way I wanted to. After almost a year of back braces and grueling physical therapy, I was cleared to resume the activities I loved. I still struggled with tics, but I worked hard to manage them and still participate in my sports teams and classes.

Even with all I had overcome, the ongoing restrictions from my Tourette’s Syndrome built a wall between me and my classmates. I was not the most popular girl in elementary or middle school. However, I learned something most kids do not learn: when everyone else is doing the same thing, don’t be afraid to be different. When other kids were chatting online, or shopping, or sleeping in on the weekends, I decided to volunteer at the local hospital, work as a lifeguard, take piano and dance lessons, and join the school play. Being myself and learning not to care so much about what other people thought made me more outgoing and social as I grew up. I learned to speak with ease and comfort in front of my peers.

In high school, things started to get more challenging. Although I had become more comfortable with myself as a person, school became more difficult. Tourette’s Syndrome can be accompanied by ADHD, and I noticed in high school that it took me twice as long as the rest of the class to complete my assignments. For a short time, I cared less and less about my grades because it was harder and harder for me to succeed as I used to.

Then one day when I was working as a lifeguard, I was struck by the happy, successful
families I saw around me. It hit me. People don’t become successful unless they work hard and earn an education. I remembered how hard I had worked at 9 years old to achieve my goals and become independent, and I knew would have to do the same thing again. I realized that things do not just get handed to you—you have to earn them. Just because things were harder for me didn’t make them any less important to achieve. I dedicated myself to excelling in school and I brought my grades up through perseverance and work ethic. I understood that to live the life I wanted in the future, I needed to work more and save money. The only way to get a job that can provide the lifestyle I want is through education. Now, I know I want to study Business and Spanish, in order to be a resource to foreign business owners who want to expand their operations but face a language barrier. Just as I have overcome challenges with the help of doctors and family, I want to help other people face their own obstacles.

I have seen how wonderful success can be. I understand that things do not come with ease into my life. However, I take every opportunity I can to better myself and my education. I enjoy working, volunteering, and participating in activities because those accomplishments exercise my brain and help me develop useful life skills. I am motivated and excited about going to college this upcoming fall because I am eager to see what new challenges await me, and I know the experience will positively change my life forever.

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

The final push

I have approximately a month of university left. A very, very scary prospect.

Before I forget – last semester I wrote a dissertation about the impact Tourette syndrome can have on educational attainment, which was interesting to research and write! I will share the results from this and the possible implications these can have soon, but I simply don’t have the time to write about it right now!

This semester is all about drama. I am directing a short play based on the book The Man Who Mistook His Wife for a Hat by Oliver Sacks which has been a really enjoyable experience (although it is testing my organisational skills!).

I am also going to be playing Dorothy in our university production of The Wizard of Oz. This is literally a dream come true for me. I never thought I would truly be able to tread the boards in a blue gingham dress with ruby slippers…but that’s what I will be doing in under three weeks time!

I feel lucky to be playing this role now, but a few years ago I would have thought it would be completely impossible for me to. But TS has not been a barrier to me achieving my goals and reaching my dreams! I have said things along these lines so many times before, and although I always tank I truly mean it, there is always a voice in my head to say the contrary. However, that little voice is now fading, and hopefully soon it will be gone for good!