The untold stories of Dystonia

Not your ordinary 5 year old

It was 1998, and I could have been just another five year old on the playground.  Unfortunately, that was not the case. There was something uncertain about my behaviors, but numerous doctors assured my family it was just a phase. I was left alone to live the life of any five year old; playing make believe and having tea parties. As the days passed, these behaviors turned into blank and unresponsive stares. It was evident that there was more to investigate. I was referred to a neurologist at the Children’s Hospital of Pittsburgh. After a two hour car ride I found myself staring at a giant colorful building, excited as to what could be inside.  It was not long before this colorful and exciting new place would become a dark and dreadful environment. I underwent numerous tests; poked and prodded each time, before doctors reached a grateful yet devastating conclusion.

As we sat in one of the many small, poorly decorated, doctors’ offices my story took a turn in a direction my family and I will never forget. My diagnosis was a benign oligodendroglioma brain tumor. Although this type of tumor was not cancerous, it was frightening and surreal. My previously assumed “behaviors” were now being referred to as seizures. Without treatment they were bound to get much worse. The very unreliable timing of each battle was something that my parents dreaded.  Brain surgery became the only option.   Trying to explain the procedure to a five year old was probably like nailing Jello to a tree. I was completely unaware of what I was about to endure within the upcoming months. I was oblivious to how this procedure could change life as I once knew it.

Life seemed to fly by until the day finally came to hug my family goodbye.  I walked with a tired and coffee ridden nurse, who asked me one question, “Do you want to have some fun?” Confused, I asked, “how?” I was about to have my head cut open and here she was talking about fun!  I was then asked, “Do you want to ride on the hospital bed or help me push it?”  As I pretended to be just like the nurse escorting me, I wheeled the creaky prison-like bed through the large double doors and into the bright operating room.  I was surrounded by numerous machines and a sea of people in scrubs.  Before I could get a better look at my surroundings I drifted into a deep sleep.

When I awoke it did not seem as though nine hours had passed. I recall waking up to a tube coming out of my throat and gasping for breath. I was connected to all sorts of machines and was constantly being poked and prodded by strangers. I would love to say surgery was one-hundred percent successful, but that would be a lie. In the next moments, I learned that I had suffered a stroke on the same table I previously wheeled into that unfamiliar room. The tumor was successfully removed, but I would now have to endure rehab to gain back my strength.  Recovery was brutal and the hospital food never seemed to taste any better. Days seemed to be going smoothly until the sixth week of rehab arrived. It was then that I noticed I no longer had control of the muscles in my left arm and leg. Each muscle in my left arm had begun to torque and twist every way possible and I had no form of control. My left leg was weak and muscles would tighten without reason. As the days went on I learned my peripheral vision was decreased by twenty-five percent and there was no hope of it returning. I struggled through even more rehab with my distorted muscles, but it was soon time to go home with my disabling condition.

What followed the return to my familiar home included therapy and even more hospitals. After visiting numerous doctors across the United States I was diagnosed with three movement disorders: Dystonia, Spasticity, and Chorea. Dystonia could be characterized by the twisting and torqueing muscles. Spasticity was found as doctors attempted to stretch out my locked and rigid limbs. With each attempted movement came uncontrollable tremors; Chorea was quickly added to my never ending list of ailments. Each of these disorders lacked a cure. My family and I were left with hopeful treatments.

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