Monday, February 11, 2013

She is Not a Camel...but She Does Have Epilepsy

Maya Shenwar, executive director
of Truthout, with EEG leads
 taped to her head.
 

The two most salient things about epilepsy are 1) that it sucks, and 2) that it is awesome. If you're living with seizures, of course, their awesomeness almost certainly does not make up for their suckiness. Even if you have out-of-body experiences during your seizures or hear old music, smell burning toast, or have orgasms while seizing, you still probably would rather do without them. And yet, I've met a lot of people who have a great deal of respect, if not awe, for their seizures. As they should. Epilepsy may be the enemy, as one philosophical epileptic acquaintance put it, but it is an awesome and mysterious enemy.

Not all epileptics are as enamored of their their seizures as Fyodor Dostoevsky's protagonist Prince Myshkin in The Idiot. As writer Maya Shenwar tells us in her excellent piece today on the political website Truthout, Myshkin flashes, during the auras at the outset of his seizures, to "the highest form of existence" and "the acme of harmony and beauty." Shenwar, who has had seizures for nearly a decade, has less transcendent fits than Myshkin did, but still, she is making the most of them. And she has clearly learned a lot from her epilepsy. She is 
courageous, funny and smart and now as fully out as an epileptic can get, a real accomplishment given the stigma and discrimination that still hounds people with this particular neurologic disorder. Read her excellent piece, and learn many things, including  why she called the essay "I am Not a Camel...But I do Have Epilepsy." 

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