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My Seizures

What its like to have a seizure and epilepsy

It always begins with words.  

They are simple and broken.  They grow on the periphery of my consciousness.  Slowly they become real, almost coherent sentences.  Though not truly audible, my mind is hearing them all the same.  It’s a song, always the same song, but one I can never grasp the melody to. Its maddening.

This is the point of no return and I know it.  I have always believed that if I could think of something else, another song or lullaby, I would be able to change the path I am on.  If I could only redirect my thoughts I could stop what’s going to happen next. Maybe I have always deluded myself into thinking that I have any control or ability to stop it, but I plan on keeping this imagined power.  I continue to chase it down the rabbit hole.

Part of me changes location.  My eyes see that I am standing in my living room or kitchen, but my mind moves to my grandmother’s dining room.  I can see it clear as if I were there. The old oak desk stands in the corner of the room. Her large red address book lies there next to the yellow rotary telephone, filled with numbers and bills.  The light colored dining room table fills the center of the room which smells musty from the old rug. I still chase the words.

The last thing I feel is the sickness.  It is both comforting and vile, warm and nauseating at the same time.  My mind thinks I’m going to vomit but my stomach respectfully disagrees.

….

The beginning is always the same, only the damage can be different.  Time slows down dramatically as the sensory information floods back in.  My eyes try to take in images, but they come in flashes. They are like still frames that have been pieced together into a very choppy video.  Sound exists and doesn’t at the same time. I can hear the words, more often shouts, but it is almost as if they are coming from voices so foreign that I can’t understand.  All this happens in moments. Mere fractions of seconds that seem to stretch on forever. I don’t know how long it is for those yelling.

I go through a very methodical list in my head.  

Where am I?  I’m on the floor.  

What floor? The kitchen floor.  

Who is that?  I don’t know.

Try again.  That’s my wife.  

What is that?  Its blood.

What hurts?  My face.

What happened?  Seizure.

It’s hard to point to the exact moment they started.   I have hid them for so long it is difficult to remember.  At first I didn’t know what they were. I just pretended that they would stop happening.  If your young enough, it’s easy to ignore almost anything. It gets harder when you open your eyes to your five year old crying because daddy was on the floor bleeding and wouldn’t wake up.  

I have broken furniture while falling on top of it, terrified my family with screaming about nightmarish hallucination in the middle of the night,  bitten through my lip, and been forced to go the hospital for stitches after dropping face first onto a kitchen counter. Still, I have it easy.

Of those with Epilepsy,  I am one of the extraordinarily lucky ones.  I have had coworkers who were forced to quit their jobs because the medicine never got control of their seizures.  I know others that have had to wear headgear on a daily basis to protect their brain from their constant falls. There are even more that can barely go an hour without a seizure.

Of those with other disabilities, I am one of the extraordinarily  lucky ones. We have all known people who have lived with immensely more difficult obstacles before them.  The kid that faces trying to get around in a wheelchair everyday in a world that constantly wants to build curbs instead of ramps.  The friend that had to deal with the sudden onset of Schizophrenia and the stigma that came along with it. The twenty-five year old coworker with dreams of the future yet has terminal cancer and a healthcare system that couldn’t care less.  

I have almost never spoken about my seizures to anyone, in part to protect myself and in part because it’s no one’s business.  Only once have I opened up at work about my medical condition and it resulted in my being harassed and mocked. Obviously this shouldn’t have occurred, but it did and it stemmed from an individual that lacked empathy.  

I wrote this article for a reason and it’s not for a simple cathartic release.  I wrote this as a reminder that everyone has something. Everyone has a secret pain, somewhere and sometime in their lives that we are not all privy to.  If we remember that, maybe it will change how we treat each other.

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