Faces of Epilepsy
It's been almost twenty years since the smooth wooden bunk bed shook and my father's voice receded while reading a Goosebumps book to me. This was my first seizure at age five. Since that frigid evening in November epilepsy has been part of my life, but has not been my life. I have spent the past nineteen years working with what I have been given, no different than anyone else.
I have tried almost every epilepsy drug on the market. This process began with my first seizure and continues until today. During the first year of experimentation with anti-epileptics, I was taken out of school for six months due to the negative side effects and for my uncontrolled seizure activity. Regardless, and with home tutoring, I was able to continue my planned academic progression. However, I had acquired a learning disability that affected my long-term memory and factual recall, requiring me to take part in the special education program. During this time I was also enrolled in Martial Arts, took up the Alto Sax, began snowboarding, skateboarded, played soccer and found time to successfully irritate my brother.
Then an opportunity for improvement was presented. At age ten I was offered a chance to undergo a trans-sectional brain surgery, aimed at reducing, if not eliminating my seizures. This surgery changed my seizures from being complex partial to simple partial, a significant improvement I am grateful for.
And life went on. I continued skateboarding and snowboarding and Martial Arts. Age thirteen also marked my first involvement with the Epilepsy Foundation. I was offered, along with a few other teenagers, a chance to participate in an Epilepsy awareness video about teens living with Epilepsy. The video recorded conversations about our experiences with epilepsy, individual interviews about what our lives were like, and our views regarding how Epilepsy affects our lives. It was an incredible experience to be able to talk with other teens about what it was like for them living with Epilepsy. This same year I underwent my second surgery. The goal of the surgery was to remove as much of the damaged area as possible without affecting my depth perception. My seizures were once again changed so that, with medication, I began having seizures only at night while going to sleep, a pattern that has continued, for the most part, until today.
And life went on. Two years later I was awarded my Black Belt in karate. At age eighteen, and against medical odds, I was again fortunate enough to be able to get my drivers license, having not had a single seizure during waking hours for over a year. I also accomplished another goal that, from the beginning, was very much questionable; I was accepted to, and entered college. However, before stepping foot, as a student, on campus, I went through yet another surgery.
I was part of a test study for the Neuropace stimulator, which is an experimental device that should soon receive FDA approval. Last year the battery in the Neuropace Stimulator again died, and, due to its lack of effectiveness in my case, I chose not to have the chip replaced.
Four years after my last surgery I graduated Cum Laude with a B.A in English/American Literature with minors in Psychology and Education. I'm currently pursuing an M.A in American Lit. at Brandeis University and live with my girlfriend in Somerville. I continue to drive and snowboard. I have had the opportunity to travel extensively throughout the U.S and Europe. However, I still have approximately 3-8 seizures a night, when falling asleep, while asleep and when waking up. Epilepsy has, and will probably always affect my life, but it is not a hurtle or a stumbling block, it just is. We are the authors of our own lives, and the narratives we create can only be written using our talents and skills. It is our job to cultivate the unique abilities we have and write our own Pulitzer Prize winning novel.
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