Closets, Closets, Closets!

“My name is BigDave, and I am an epileptic”  ¹

So here’s the deal:  In 2003, I had a seizure.  This put me in a select group of about 9% of Americans who will have a seizure in their lifetime. In 2005, I had another.  According to the clinical definition, then, I have epilepsy.

1 seizure + 1 seizure = Epilepsy

Whew.  Band-Aid: torn off.  This puts me among the elite 1% of Americans diagnosed with this condition (a one-percenter!). 

I’ve had a couple of seizures since 2005, but overall my condition is very responsive to medication.  Maybe this is why I’ve been able to keep it to myself for so long.  For a long time, I could count in my head the number of folks who knew — they included my family, my roommates from New York, and my close friends from grad school.  The question is, why keep it to myself?

Ian Franks, in an article in Epilepsy Today, writes eloquently on the hesitation that people with epilepsy have sharing their condition with others. His term, the Epilepsy Closet, has been used in scholarly research as well.  It points to the age-old stigma attached to the disease: its association with madness, violence, mental illness, and all kinds of other fun stuff.  

I know, I know.  It’s 2018.  We’re past all that.  We acknowledge the uniqueness and human dignity of every individual regardless of his, her, or their gender, color, creed, ability and so on.  But at the very least, the person in the throes of a seizure is a person who has lost control of their faculties, and no matter how much we love each and every one of our snowflakes, American culture still has certain ideas about people who are sick.  They are weak, and we don’t like weakness. And I’ll admit that as a man in America, I have many of those ideas bumping around in the dank basement of my own subconscious.

So yes, I have kept it hidden.  For one thing, it’s not exactly something that comes up in everyday conversation (“You know, speaking of partial-complex seizures the other day…”). And since for me a seizure is not a regular occurrence (I’ve gone as much as a whole decade seizure-free), it’s easier to skip the topic completely than to get into “all that stuff.”

But more than that, it’s knowing — or at least fearing — that this one thing, a glitch in my brain wiring, has the power to define me as a person in a way that I’m not entirely comfortable with.  There are many labels that I accept with pride: husband, teacher, rower; and many others that I accept with some reluctance: white guy, big guy, middle-aged-guy, doofus.  But the label of “epileptic” (or, to be PC about it, “person with epilepsy”) is one that I resist.  The label feels heavy and all-consuming in a way that is all out of proportion with the small role that the disease plays in my day-to-day existence.  

For the same reason, I’ve been slow to write about it.  The last thing I want is to be pigeonholed as an “epilepsy writer.”  I have interests in writing more broadly than just this one thing, after all.  

One year ago, however, I “came out” (or, more to the point, was pushed out) to my friends and coworkers in the most dramatic fashion.  More on that later.  For now, this post is my coming out — my virtual debutante ball, if you will — to the internet and the larger world as a person who has, and writes about, epilepsy.  

Why now, after 15 years?  Recently I’ve done lots of reading, exploring, and reflecting about epilepsy: what it is and what it means.  I’ve discovered some interesting stuff, and I’ve gotten to the point where I just can’t keep it to myself.  And in the end I suspect that Alison Zetterquist is right in her article on the topic.   As difficult as it is for me to come out, it’s the right thing to do: for me, and for the rest of the one-percenters out there.  

PS: I couldn’t find a way to work it into the article, but here’s the most wonderfully horrible movie ever about closets and the state of being trapped therein:  https://youtu.be/zFosUj6A22c  In internet parlance, is both NSFW and an ear worm that will haunt you the rest of your days.  Enjoy!

1.  Yes, I know. “Person with Epilepsy.” But that doesn’t rhyme, and doesn’t have the shock value I’m looking for.  So please save your angry comments.  I use this antiquated, oppressive label here in full awareness that it is outdated nomenclature, and only for effect.

Note: The ramblings published on this blog are the opinions of the author alone and shared for entertainment purposes only.  The author is an English major with no medical or scientific background; thus, his words should never be taken as medical advice.  Consult with your doctor or medical professional before undertaking any diet or exercise program.