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Befriending my Neurological Disorder – Anna H.

Anna was a winner of a 2022 NJCTS Scholarship Award. 

This was the essay she included with her application.

Most childhoods consist of recreation sports and playdates with friends. Mine consisted of all these factors with an abnormal twist. I spent years in a never ending cycle of seeing strange doctors in scary offices. I sat in chair after chair being told I had something wrong with my brain that would affect my life drastically. They provided textbook definitions of my disorder, however, they had no cures and unreliable medication routes. Growing up with a neurological disorder that was visible and misunderstood was incredibly hard in a town with a bumper sticker mentality. I was always told that my disorder didn’t define me, but I constantly feel like I’m drowning in my own body due to lack of control over my movements and thoughts. Some days are easy but most days, my tics are so severe that I develop an undying urge to crawl out of my own skin just to get a few minutes of peace without tics.

Throughout the years, I learned the hard way that humans can be downright cruel without purpose. From elementary school to high school, I’ve been labeled “different” because of my tics. At a younger age, I was treated like I had a contagious illness. I was incredibly friendly and always open to meeting new people but that didn’t matter when kids saw my Tourettes before they saw me. Unfortunately, the same students never learned, even when I did presentations, fundraising walks, and speeches explaining my disorder. I’ve educated many people who don’t mind my faults and accept me for who I am, yet I’m seen differently and not in a good way. Humans tend to develop a fear for things they don’t understand and that results in seeing me and others with neurological disorders as frightening. All of my life I’ve had to adjust my daily activities and attempt to hide my tics to make other comfortable. In elementary school, I was asked to hide my tics during shows so I would look “normal” while on stage. These adjustments have become my normal during the years. Recently, I’ve had to alter my schedule due to students complaining about my tics being too distracting for a classroom environment. This is just another example of being treated differently from others because of my disorder.

As I grew up, Tourettes seemed like a shadow. It would constantly follow me and I could never escape the stigma associated with having an uncontrollable neurological disorder. At age six, I would go home every single day and cry into my parents arms because of how I was treated. I never knew how to handle my emotions about Tourettes when I was younger because I had no understanding of myself and why I couldn’t control my sounds or movements. At age eighteen, I’ve learned how to fight back and found ways to distract myself from how detrimental my disorder can be. I’m beyond grateful that I have the ability to limit myself with my emotions regarding my tics but I would be lying if I said I wasn’t jealous of the little girl that could break down in mommy and daddys arms after a hard day of handling normal stress without any control over her own body. Fortunately, adapting to the struggles that I’ve encountered daily have taught me the greatest lesson that life with a neurological disorder has to offer: No matter how others treat you and how negatively you feel about yourself, you have to befriend your disorder. Life can seem like a whirlpool of stress and the only way to handle that is to take things one step at a time. For me, when things get a little too overwhelming I find that taking a step back to breathe always helps. Neurological disorders make daily life an unimaginable struggle, however, the situation teaches a lesson. I’ve learned that life is about living – not surviving. We have to overcome our disorders and use them as strengths.

I was diagnosed with Tourette’s Syndrome at six years old. This diagnosis came with many other underlying disorders and struggles. Adjusting to these new aspects of myself cause an unbearable cycle of self-doubt and negativity. I was always given the impression that being different meant that there was something wrong with me, but that’s not the case. To be different is to be intriguing. As I grew older, the harassment got worse and my disorder caused pure embarrassment. My mental health was at rock bottom because of my lack of education on handling my own disorder. After years of ridicule and misery, I sat down and decided it was time to reinvent myself as being more than my disorder. The realization was the main factor in starting my growth process. It led to developing a new mindset on my weaknesses and more positive outlook on life. All of these factors fed into embracing the strong, independent human that I am today.

I will never forget the moment I understood that I could control my disorder instead of letting it call the shots in my life. I spend every day grateful for how far I’ve come despite feeling trapped by a major neurological setback. Coming to this realization helped me see the true beauty that the universe holds and how to make my life my own. Being diagnosed with a neurological disorder is a life-altering moment for anyone that experiences it, but what we aren’t taught is that our disorders don’t define who we are as human beings. With the right medication and management, life can be lives to its fullest potential and that understanding led me to recognizing the importance behind growth and loving yourself, disorders and all.

Personally, I believe the biggest role that Tourettes has played in my life is learning that I am more than my disorder. Going through daily life with Tourette’s Syndrome is the hardest thing I’ll ever encounter. However, I am grateful that is has taught me how to adjust to unfamiliar situations and find the rainbow in the gray sky. I spent years feeling sorry for myself and being scared of who I was because I was different but once I learned how to be friends with my disorder, I was introduced to the idea of accepting myself, which led to being happy with who I am. Every single day is a never ending battle with my Tourettes. Luckily, I’ve adapted to me weakness and begun my fight to use it as my biggest strength because it turns out that after all, I’m more than my disorder.

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