Tuesday, March 1, 2016

A Tourette's Story - Living with Tourette Syndrome, A First Draft for My Senior Writing Class

In my senior writing class, we were asked to write a piece on identity. Since it's my senior year and i've now been diagnosed with Tourette Syndrome for 5 years now, I really can't believe it's been that long, I wanted to write my piece on Tourettes and OCD have affected me and my identity. I wanted to come to some sort of conclusion, even if that conclusion was that there is no one solid conclusion I can come to. As I am wrapping up my life as a college student and entering into the real world, I felt like I wanted to do this for myself. Below you can find the first draft of the piece I wrote. I'll be editing it over the next week and the piece will hopefully change to some extent, but here's what I have for now.

Please feel free to comment and let me know what you think! I would really appreciate any and all thoughts, suggestions, or just a comment about how you can relate to my story :)

"Even before I could possibly conceive of the idea of normalcy, it’s strict rules and ideals were pushed upon me without my consent. It was as if the moment I was born, these expectations were written, safely tucked away, in the most primitive parts of my hindbrain, long before I had the chance to weigh in on the matter. The red cherry woman’s exchange dress, the monogramed rattle, the ballet classes: these, among other things, were the staples of a, “normal” childhood where I grew up. Growing up in my family was a strange mixture of privilege and constriction. I was given beautiful dresses,  enough toys to fill my hearts content, a spacious and loving home, and above all I was given the a vast knowledge of the rules that would make me “an exceptional member of society”. At the age of six, I was expected to show proper formal dinner etiquette at the family table, enunciate with clear and correct grammar,  and stand up straight and look adults in the eye when spoken to. I was expected to attend ballet, gymnastics, musical, and etiquette lessons. I was also, of course, expected to put an end to my bad habits and to use my self-control. 

I had a long list of bad habits: sniffing excessively, biting my lips, licking my lips, skipping, compulsively touching objects, and worrying—about everything. I would worry that my mosquito bites had given me West Nile Virus, that the pizza I just eaten had given my food poisoning, that my parents would die in a car crash when they left me home for the night with a babysitter. My mother told me there was nothing wrong with me that a little “self-control” couldn’t fix. She told me I just needed to try harder and I believed her. Each day I practiced using my self control. I tried my best to hide my worries and habits from my classmates, teachers, and friends and although I always knew there was something that set me apart from the other children, I became an expert at passing for normal wherever I went, even in my own home. I never even had to remind myself to behave according to these standards of normalcy. Whenever my bad habits or worries slipped out, my family was right there to remind me to try harder. 

These were the same words my pediatrician used in high school, I simply needed to “try harder”. My doctor was dumfounded when I told her that I was having severe stomach pain because I couldn’t stop swallowing.  For weeks on end, there was an awful feeling in my throat that made me swallow over and over again. It was as if a pulsing electrical wire was tightening around my soft pink windpipe. Every time I swallowed, the wire would loosen, just a few centimeters. A moment of relief. Then the wire would begin to tangle its way around my throat again, strangling me from the inside out. I couldn’t go ten seconds without swallowing large gulps of air. My throat was incredible sore, my stomach felt twisted and full, and I couldn’t describe it as anything else but pure torture. All I knew was that I wanted it to stop. 

My doctor looked in my throat, ran a step test, and when she couldn’t come up with any sort of conclusion she sat me down and said, “I can’t find anything medically wrong with your throat. My suggestion would be that you stop focusing on it and try harder not to swallow so much.” I was enraged. I had come to the doctor for answers, for relief, for at least some support, but had received the answer I had been receiving all my life. I simply needed to try harder to control myself. 

The swallowing spells would last for weeks on end, then they would fade only to return again. In the months that followed, my sniffing “habit” started to act up again, but I also began jerking my head, rolling my eyes, and making squeaking noises. Irrational worries began to invade the inner sanctity of my own thoughts on an hourly basis. One minute I became convinced that killer microbes lived on the inside of my sink and the next I would find myself scrubbing my hands raw, trying desperately to gain some small piece of control over my own  thoughts. I began spending hours trying to combat these irrational thoughts with reality. Nothing seemed to work. No attempt I made to ease the thoughts or to ward off the swallows, jerks, or twitches had any affect. Something so foreign, yet eerily familiar, had decided to hijack my brain to an extent I had never known before. Little swallows turned into barks and screams, little jerks became painful punches to my rib cage, and my worries became an all consuming waking nightmare. I was lost in a body that was so far from something I could even recognize, so far from something that I could call my own. 

Passing for normal was no longer going to be even a slim possibility. My noises garnered so many glances and stares. In the moments where I would lose control of my body, all eyes would turn to me and embarrassment would flood my veins with and quick and sudden jolt. Who was this? Who was this person whose body defied every burning desire to appear as I was—intensely motivated, capable, and passionate about all the things in life I truly cared for? It certainly wasn’t me. It certainly wasn’t  the little girl in the red cherry dress, the young woman who loved life like sweet peach juice dripping on a warm summer morning. It became a daily struggle to try to separate the person I used to be, from this confusing and tangled body. As I sat at my desk jerking my arms, squealing, and barking, I envied my classmates, their still bodies and quiet minds. I envied their ability to blend into the background, to sit through a class or walk down the halls remaining unnoticed. I envied the life I once had. 

When I was officially diagnosed with Tourette Syndrome, you wouldn't have expected my reaction to be one of relief and happiness —but it was. I finally had an answer to why my body refused to listen to me now, and why I my childhood “bad habits” refused to disappear regardless of how much self control I had attempted to use. I even a reason for the constant worrying, and the irrational thoughts that I couldn’t seem to ward off. It turns out, almost everyone who has Tourette Syndrome also has Anxiety and Obsessive Compulsive Disorder (OCD), two disorders that be often be even more distressing that the physical tics themselves. There wasn’t something inherently wrong with my personality; I wasn’t simply a weak or incredibly strange person. There was a physiological cause to my constantly jerking body and the invasive thoughts that accompanied it. 

However, the bliss of this answer was all too temporary. Giving my tics a name didn't put an end to the judgmental glares of the others around me, to the foreign feeling of living in a body that had no choice but to concede to the demands of this powerful disorder. I tried many different medications, and each time I was hopeful that they would dull the intense power that Tourette Syndrome held over me. Some medications made me incredibly tired and moody, and others would help to lessen my symptoms only occasionally. Ultimately, there was no cure. I would go though periods of time where I would think the mediations were finally working, times where my tics and OCD would become barely noticeable. And then, suddenly and without warning, my body would be seized once again, taken back from my control. 

I began to realize that more likely than not, I would be forced to share my brain long term with this demanding and childish disorder. How then would I begin to separate myself from Tourette Syndrome? How then could I share my brain without letting this disorder consume my identity, my sanity? There is no one answer. There is no one single way to protect myself from the daily social and emotional trauma that Tourette attempts to inflict upon me. Instead there are many ways. Many ways to show the world around me that I will not sit back and let a disorder take from me what I hold to be most precious and true. I attempt to look at the skills Tourette Syndrome has given me— the power of empathy, the intense drive to succeed regardless of what obstacles lie in the way, the ability to see the depth and beauty of life in a way some people cannot. Now that is not to say that I do not sometimes feel overpowered, overshadowed. The reality of living with Tourette Syndrome is that some days I will lose my battle to feel secure in my identity. Some days I will feel as if the true reality of myself is hidden, invisible behind the countless tics, twitches, and obsessions that seem to have taken center stage. Some days I will feel as if others see me simply as collection of my symptoms. How do I leave these days behind? Should I? Should I try to forget about those feelings or should I embrace them as a part of living with a complex neurobiological disorder? I cannot say I have an answer. Right now I take life as it comes, try take each experience for what it truly is in that moment, and try to move forward in the best way I know how—by living. "

5 comments:

  1. http://pessimisticshrink.blogspot.com/2013/12/normal-0-false-false-false-en-us-x-none_17.html

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  2. Hey there! really thoughtful details you have portrayed here..and loved the fact that you're living and moving forward with life with such complex agony but to keep things in better track have a day with Dr.Birendra Trivedi Neurologist NYC if you are living NY best neurologist..will help you eliminate your disorder.

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  3. Awesome read.... and SO ME! Thanks... may get many friends and co workers to read this.

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  4. I know the exact same feeling, my family all saying "use some self control" or "break your bad habits". The funny thing is that in my darkest times the only person that was there for me was my Tourettes, for it has been and will always be the greatest condition i have ever known.

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  5. Well not really a person more of a thing

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