My Epilepsy Stigmata

***This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!***

me

Once when I was in the middle of having a seizure, I had the paramedics yell at me.  It was terrible.  I couldn’t help myself, I was lost in my mind, unable to control my body.  When I could float to consciousness, they were yelling at me to stop vomiting.  I had been vomiting all day, I wished I could stop vomiting.  They screamed at me to stop spitting at them.  I promise you I was not intentionally spitting at them.  I’m not a dick.  It’s called a complex partial seizure.

All I wanted was some water.  I was so thirsty.  I couldn’t move.  They treated me like a drunk, a drug addict or a raving lunatic.  I was none of the above.  Nobody deserve that, even if they are a drunk, drug addicted, raving lunatic.  Seizures are none of those things.  Medical professionals should know better.  I’m afraid I’ll need an ambulance again.  I don’t ever want to be treated like that again.  I wanted to come downstairs, that’s why they were there.  To help me.  I couldn’t control my body.

Epilepsy is isolation.  That’s what people don’t see.  I try not to have seizures out in public.  I stay home.  I can’t drive anyway.  Even when I want to do things, I can’t.  I’m not going anywhere when I’ve had a seizure.  Not for days and days.  This limits my contact with the outside world.  When I am the sickest, I am all alone, at home.  When I feel sick, I don’t go anywhere.  I miss soccer games and birthday parties and only my immediate family sees me.  I stay at home.  I don’t want to go out and have a seizure and be treated like a drunk, raving, lunatic.  Which is something that happens to epileptics all the time.  It’s hard to respond when you are having a seizure.  Epileptics get shot by the cops with shocking regularity.  People ask me if I’m drunk all the time.  “Nope, I just bump into things and slur my words everyday!~”

I am misunderstood by the world.  I can’t work because I can’t keep a schedule.  When I have a seizure, all I can do is sleep.  I can’t go to a job.  I am down and out for days no matter when it happens.  And it happens all the time.  I can’t predict when I will have a seizure.  All I can do it try to minimize my triggers.  Which does nothing, but stress me out.  How can I minimize my hormonal changes, or the path of the moon?  I am lost, at the whim of electrical impulses.  Who knows what makes the lightning strike where and when it does?  Seizures are like lightning strikes that spread over the brain in a chain-reaction of altered consciousness.  Sorry, I can’t make my scheduled shift tonight or tomorrow or the next day.  Employers don’t like that.

Sleep consumes my life.  After a seizure, sleep is all there is.  If I don’t get enough sleep, that’s a trigger too.  My seizure meds make me tired.  It’s a side effect of the main effect of slowing down my electrical impulses.  I have too much electricity for my own good.  A seizure is exhausting.  I am not lazy.  I am sick.

I should be happy that so many people minimize my disease.  They all think I should be functioning better since I seem so smart.  I can’t remember shit.  Ask my kids.  It’s kind of a problem.  Just today my son was upset that I couldn’t remember watching Buzzfeed videos with him yesterday.  I couldn’t remember what we watched.  People remember stuff like that?  You can watch a video and know if you’ve seen it before?  Everything is brand new to me!  Yee-haw!!  Epilepsy is a rodeo!  You never know how the bull is going to ride.

NEXT UP: Be sure to check out 

http://www.soosepilepsycorner.blogspot.com  for more on Epilepsy Stigma.

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Filed under Essays, Living w/ Epilepsy, News, Non-fiction

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