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Dear Reader, Here's What You Don't See About This 'Normal' 19-Year-Old

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In anticipation of a new year and the approach of International Epilepsy Day, a day that binds this community together over a common experience, I sit down here to write about what people who have not walked in our shoes may not see when they meet people who live with epilepsy.

Dear reader, what do you see when you look at me? Do you see an ambitious 19-year-old girl with a normal life? A friend, a daughter, a family member, an acquaintance? Someone blessed to have not had any seizures in four years?

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Do you see the possibility that I omit the fact I had seizures this past summer because I don’t want to shatter your ideal image of my “success story?”

Do you see the long-lasting sedatives I give to myself every morning and night, the constant turning of my mind trying to remember if I took my medicine this morning amongst the hurry of getting out the door to my first class? Do you see the fear in my eyes when I wake up in the middle of the night and realize I forgot to take my medicine? I’m afraid, reader, I’m afraid I’ll have another seizure because I made a human error.

I’m afraid to be lost and alone after coming out of a seizure, of disappointment and shame, uncomfortably familiar visitors that inevitably linger. My license — a privilege — taken away and telling people that no, I am only two days seizure free, not four years. Do you see the fear of those possibilities in me, reader?

Do you see the “what ifs” spilling out of the back of my mind every time I drink in moderation with friends? They said I could, right? “This is supposed to be OK for me,” I tell myself. I’m striving for the normal ideal — I’m wanting to be normal — knowing at any moment I could be anything but. “What if,” I ask myself, “this sip lowers my seizure threshold just enough?” What if? What if? 

Uncharted territory is terrifying when a strict diet of benzodiazepines and anticonvulsants has produced the desired results.

Do you see an ambitious 19-year-old girl with a normal life who is trying to forget that once upon a time, she was forced to grow up too quickly due to a life that was anything but normal? It was poking and prodding and tearing and ripping and scarring and “Am I dying, Mommy?” and anything but normal.

As I begin another new year, I will only continue to speak out about epilepsy and stand in solidarity with my brothers and sisters who live with it as well. I call on all people to look deeper than the diagnosis when meeting someone who lives with epilepsy. Across the world, we are not only bound together by our diagnosis, but by our strength and compassion for one other. This is what I will be celebrating on International Epilepsy Day. This is what I celebrate every day.

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Originally published: January 10, 2018
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