So I Have Epilepsy

I’m already cringing at the hopefully not overly excessive melodrama surrounding all of this. I mean no, I don’t have cancer. Both of my parents are alive, I’m in a loving and committed relationship, and I have a consistent roof over my head.

That, from the very beginning, I need you to realize that I recognize.

These facts, however, do not make my disease any easier. It does not lighten the burden of the unknown—of never knowing if and when everything is just going to…stop. It doesn’t make the total loss of control any less scary or my total loss of a driver’s license any less frustrating.  It does, though, offer some perspective and a bit of backwards comfort. Sure, I seize and lose chunks of my tongue sometimes but I’m a college-educated, upper middle class white girl, right?

The infuriating, darkening, and totally paradoxical thing about epilepsy-especially for someone like me-is that it’s like the biggest, “Fuck you,” the universe could have thrown at my type A, obsessive, compulsively controlling personality.  I mean seriously, I organize my desktop for fun.  One of my favorite Christmas gifts ever was a label maker, complete with an extra ink cartridge. So, the fact that my current lot in life involves not knowing when I’m going to be conscious or not is pretty fucking ironic, to say the least. Caustic, even.

Every time it happens, I feel different.  I’m not saying that I react differently physically or even emotionally each time I’ve had a seizure, but I feel like every time I wake up three to six minutes later from the total darkness and the complete unaware, I’m a bit changed.  I’m not suddenly a different person or anything close to that but I feel that with each seizure, each involuntary jerk of my body, clamping down of my jaw, and foaming of my mouth, I lose a little piece of myself. Each time I lose control and wake up in an ambulance or on the floor or with a bloody bump on the back of my skull, I leave a fragment of myself in the neurological aftermath.

My doctors assure me that it’s really not that big of a deal, I can still grow out of it, I can lead a completely normal life, and that everything will be okay. Believe it or not, I actually have faith in their words. Maybe it’s because I was raised to realize that things can always be worse…maybe it’s because I refuse to show my fear unless I’m transposing it into words on my laptop on the train ride home…maybe it’s because I’m too stubborn to lose any more control than I’ve already lost.  But when the perfectly pitched voice of my neurologist coos at me over the phone (he’s helping victims of AIDS in Africa right now, another aptly timed dose of perspective) I can’t help but to give in to his optimism.  After all, I’m alive.  The tip of my tongue grew back, and I’m not choosing between paying my rent or taking the medicine I’m now prescribed to take every day, twice a day.

As I sit here, rolling along through New England and occasionally glancing out the window, catching glimpses of small town beaches and the joy of summer bursting through the seams of life with every bend of the train, I am still not exactly sure why I felt the need to type all of this.  I know I am tired of talking about it, tired of reassuring my mother that I feel fine today. I know I am tired of being consumed by the question I first skated over in the ambulance ride last weekend, “Is that what death is like?  Just….darkness?”

I also know, on the other hand, that I am more hopeful now than ever. Because every time I’ve woken up from one of my episodes, I’ve been surrounded by people that love me. And not just corny, fake, or forced-together-by-medical-circumstance love, I mean really love me.  It’s been my brother and my boyfriend and my uncle who I learned sarcasm from and my best friend. I know that, again, life could always be worse and that the word “epilepsy” is not a curse or a death sentence. It is simply another noun in our language and one that I refuse to define me.

My name is not Epilepsy Sheridan.  My name is Sara Sheridan, and I am the same as you, the person reading this.  My brain just farts out on me sometimes. TC mark

image – Jochen Spalding

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