Friday the 13th – Why not?

Friday the 13th – Why not?

Amy Lynn Reifsnyder

A friend of mine suggested I write about myself. I reminded her that that’s what I always do. She wanted something more… something about my upcoming week to the Epilepsy Monitoring Unit at Barrow Neurological Institute. A week or so of intensive evaluations, where they will trigger and monitor as many seizures and other fun and exciting neurological events as possible. The objective is to determine which part(s) of my brain are involved with whatever it is that triggers the absences, twitching, muscle spasms, frozen limbs, vomiting, migraines, and other glee-full activities that are associated with my particular version of neurological malfunction.
She thinks because of my humorous approach to this Vacation in Hell, I should share my insights. My perspective.

My anxiety.

So, sorry, no posts today about the beauties and wonders of the world around us. I’m a gonna go ahead and post some insights to the inside of things, most particularly, inside me.

I’m not alone in this epilepsy/migraine quest for answers. Nope. There are millions of people, all over the world, who, on a daily basis, take note of that twinge in their head and wonder – Will it escalate to something grand? Is it just a minor flick of a nerve ending, or is this the beginning of another episode of twitching, bouncing, banging into things, and then stuttering, crying, feeling depressed, and sleeping, and sleeping, and sleeping.
Will we make it through the work day without anyone finding out, and, what happens when they do? Must we always be on the look-out for yet another new job?
If we follow the law, how far back will this incident push our legal ability to drive? Should we ever be allowed to drive, anyway? Who will take us to the grocery store, to work, to the doctor, if we don’t drive?

Are the candles out? Did I turn off the stove? There isn’t any water running, is there? I don’t want it to overflow.

Seizures are a ton of fun.

No. Really. An absolute riot.
I’m one of the fortunate ones who has warnings. The warnings are called “auras”. This means, when my depth perception shifts things into spatial anomalies (Take the black and white tiles on the floor, for example. First, the black tiles come up. Then they go down while the white tiles come up – Really. Who needs drugs?), and I become hyper-sensitive to smells, light, touch, I have maybe five or ten minutes to get the house turned off, and myself tucked in to some place soft and/or close to the floor, with a pillow, blanket, shirt, or backpack under my head. And then I wait.

I roll on my side, in case I vomit. I’d rather not choke to death. Just saying.

I stay there until I can move at will.
If I’m home, I usually recover tucked in by three very close and concerned dogs, with Dog #4 near the door, protecting me from whatever might want to come in.
If I’m out in public, I try to make it to the handicapped stall of a bathroom. The floors are disgusting, but I like the privacy. I have been known to make it to the floor of a coat room, the players’ lounge at a baseball field, the Health Tech room at the last school where I taught. A little busy, but sometimes ya gotta take what you can get.

I know people mean well, but trying to have a conversation with someone going into, in the middle of, and coming out of a seizure is ridiculous. Just give them time. Your peace of mind is not their first concern. They can’t take care of you, anyway.
For myself, I need time to figure out what I bruised;  if I’ve pulled any muscles; can I speak; will what I think I want to say actually come out the way I want it to – that’s always fun; can I move my legs; have my hands unclenched enough for me to move my fingers. How agonizing is that first movement going to be and will it last long enough to register a whimper or a cry, or will a grimace be enough?

No, I probably don’t need a trip to the hospital. Yes, my blood pressure is higher now than it used to be, so maybe, if my chest doesn’t feel right, maybe an EMT with a pressure cuff would be a good idea.

I will cry. I will be depressed. I will need to sleep.
I will get over it.

This depression thing is worth noting. When we exercise, so many of those lovely endorphins kick in, and we think, “Wow! Dancing is fun! Let’s do it again!” Never mind, the exhaustion, the soreness, or the occasional leg cramp. We want to do it again – so we arrange our schedules to include shopping for new shoes, wearing flattering dance attire, eating good food, and finding places to dance.
If seizures were as much fun, we might be inclined to trigger as many as possible, just for the sheer enjoyment of the recovery.
(Un)Fortunately, seizures are not fun. Therefore, most of us do all we can to prevent them – as if that’s possible.

Playing 20 Questions with someone after they have an episode is just as ridiculous as quizzing them on whether or not they are ok.
“When did you eat?” “Did you get enough sleep last night?” “Did you have too much coffee.” “When are you going to dump that loser?”

Telling us what we should have done is an invitation to nasty looks, and, when we are able to speak, some unkind words.
Last time I checked, I – nor any other human being – am not in charge of the universe. If I had enough control to prevent one episode, don’t you think I’d prevent them all? (Where is that “roll the eyes” button?)

No matter what you know about “triggers” – caffeine, fractured sleep patterns, stress – seizures just do what they want.
Try as you might, there are times there’s nothing you could have done to prevent an episode. Accusing someone of not doing all they can to prevent a seizure is just plain mean. Sure, maybe you had to stand around the cloak room, asking people to not step on your girlfriend, maybe you were mortified to be in the off-field room with the players, maybe you’ll have to find a substitute to cover classes for a few days. Get over it.

Epilepsy is not for those with control issues. Nothing neurological is.

But it’s what I live with, and what I’ll be talking about for a few essays.

Hope you hang around. Feel free to ask questions.
Please note: Everyone has their own burdens. I have no desire to play My Scars Are Bigger Than Your Scars. This is not a competition.
This is my life.

You’re welcome to continue the Journey.




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