Nov. 1
Today I am reminded of the physical effects of epilepsy after a night of drinking with friends in celebration of Halloween. I didn’t get much sleep — I drank too much — my hands are shaking. These shaky hands my pediatric neurologist once referred to as “puppet hands” because I look like I’m being controlled by a puppeteer from above. I am the puppet but who is my master?
The proper name for these shakes are myoclonic jerks.
Sometimes, I black out and wake up somewhere else after these jerks. My tongue is swollen from biting, my head is bruised from falling. My shoulder is dislocated, I am disoriented, angry, confused, or a combination of all these things. I have walked in the snow with bare feet only to find myself at the old woman’s house across the street.
Other times, the jerks go nowhere. And to me, that’s what’s really scary — not knowing which way it’ll go. This or that.
I prefer this. But I’d rather have neither.
I’d rather not have been diagnosed at 15. I wish explaining my “hidden disability” to professors and employers and friends wasn’t so difficult. According to every doctor — to everyone in the epilepsy community — the kind of epilepsy I have is “easy” to manage. I know there are others in the community who have it worse. Who have uncontrollable seizures daily. I feel bad — I feel lucky — hell, I feel privileged.
I am a fifth year student in college because of this hidden disability. My intention was to spend four years at Missouri State University, but I ended up needing Labrum Repair surgery due to multiple epileptic seizures which dislocated and tore my labrum. I admit, this was due to me not taking care of myself. I was generally sleep-deprived and stressed out in my first semester at MSU.
But those were my choices.
Just like drinking last night on Halloween. Just like all the other decisions I’ve made in my adolescent years. I am an imperfect human being — in thought, word, and disability.
