If you came here for a happy MyTake, this isn't one.
For the past twelve-ish years I've suffered from audiogenic epilepsy with generalized properties of the left temporal lobe.
Pleasure to meet you, Compo! *quiet applause*
Let's take a second to decode what I just said.
"Epilepsy" - a broad umbrella term for seizure based disorders. Even if you're not triggered by flashing lights (more on that in a minute), even if you never even had a full Grand Mal seizure, you can still be epileptic and not know it.
"Audiogenic epilepsy" - a type of epilepsy in which seizures are triggered by sound. More on THAT in a minute.
"Audiogenic epilepsy with generalized properties" - a type of audiogenic epilepsy that, while triggered mainly by sound, comes by every so often because FUCK YOU, THAT'S WHY!
"...of the left temporal lobe" - this one is a tad tricky. The brain is basically a glorified electric meatloaf that is divided into two halves, each divided into thirds, sixths or quarters, depending on the neurologist. The temporal third (upper and lower sixth), despite the name, is not about my rhythmic abilities, but my ability to convert short-term memory into long-term memory. Basically, it's the part that's all about learning.
As I said, I'm triggered by certain sounds. Sounds are made of two main components: the frequency and the sub-frequency.
The frequency is the tone - a high pitched shriek is at a higher frequency than a deep, Morgan Freeman-like voice.
The sub-frequency is the pause between sounds. When you speak, you make pauses between words, between letters or change the pitch. That's a sub-frequency. Combine the two properly, and you can kill me simply by shouting properly. Not quite as impressive a Fus-Roh-Da, but still.
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Coworker: Mornin', man. How are you today?
Me: Not dead yet. How's you?
I have this exchange on daily basis. Short, straight to the point, but mainly provides the highest word-to-info rate possible. I'm not dead, but goddamn, if you have a gun I can borrow, hit me up!
Our kind sees life in a very different way and has many difficulties that other people don't see. The world isn't designed to deal with our kind. Let me share my most favorite example.
You seem like a very good candidate for this work place, yes, yes, very good. I am sorry, but I cannot hire you. I fear you bite an employee and make him like you. I am very sorry.
I was looking for a job. Straight out of the army, broke, barely have a roof over my head. My father had some shoddy job god knows where, so he was the only provider. With my mother gone, I had to do something about the situation. The quote above comes from a very memorable potential employer.
Had I not entered some kind of shock at the time, I would've probably had assault charges on me, because come on! You can't be THIS stupid, can you?
Apparently, that one could.
Finding a job is nigh impossible because most countries demand to state any "special" disabilities during the job interview. I was young, naive, and hoping people would see past the disorder. Nobody did. I was treated like some Lovecraftian monster, something people don't understand. People are very afraid of what they don't understand, so I started hiding it. You can hide it only for so long, though.
What does a seizure feel like?
That's a question that I get often. In terms of epilepsy, I'm privileged. I get "auras". That's how we call 'em. Everyone has different auras. It's a sort of warning sign that a seizure is about to take place, so I better use whatever spare seconds I have left to find a relatively safe location.
Nobody has auras that make sense. It's not like an air horn or something.
The seizure itself doesn't feel like anything. It's just darkness. Waking up is another story, though.
Alright, so how does an "aura" feel like?
Let's try a little experiment here, shall we?
Go find a blind person, one that has been blind from birth, and try to explain the color green to them in a way they'll understand. Go on, I'll wait. Hell, let's make it easier. Just explain color.
Yeah, it's not something you can describe, but by god, do I not wish this on anyone.
How do you hide a seizure?
With decent anticonvulsants and meditation. Smoking is my form.
Is it healthy? No.
Does it get the job done? Yes.
Seizures come in all shapes and sizes. I mentioned "Grand Mal" earlier. Sometimes people call it "Tonic-clonic". Supposedly, "Grand Mal" translates to "Great/Large death". It's rather appropriate, because it's the kind of seizure you see in TV, crazed convulsions, shaking, foam coming out of the mouth, eyes rolling like crazy and terrified women (I have never seen men specifically react like this) running around like chickens with their heads chopped off.
For the record, though, men are often much dumber. Women admit they have no idea how to react. Men try to help.
But you said you're hiding your seizures!
I am, yes. I haven't had the big G in a couple of years now. "Petite mal", aka "Small death", aka "absence seizure" is a different story.
In that state, I'm partially conscious. "Partially" is a big word when it comes to consciousness.
Apparently, I had entire conversations with people. Coherent conversations, during which I took information in, processed it, and produced viable, relevant output. When I had one in front of my neurologist, however, he caught it in half a second, and I woke up tied to a wheelchair, surrounded by three nurses. Thankfully, people that are not medics don't catch those.
An absence seizure is not as terrifying, I just lose consciousness while functioning semi-normally. It's kind of like sleep-walking, except with less chance of pissing in a closet, apparently.
Is there a cure for epilepsy?
Not really, no.
Anticonvulsants only prevent Grand Mals from happening. Try, anyway. Assuming you fit, you can go for a loboCtomy. The C is important. A loboctomy is the act of cutting/carving out an offending chunk of the brain to increase the quality of life. If the ancient Mayans and Aztecs managed to pull that off with old-ass obsidian drills, there's no reason for us modern folks to not manage to pull that off with science and robotics, right?
I'm fighting for one right now.
How'd you get a job, then?
I lied, obviously. I found some random gig at a warehouse where I work to this day. During the interview I said I'm 100% healthy. No weird-ass disease on me, no sir-e! Healthy as a cucumber!
That one is a Russian saying, I'm not sure what the English equivalent would be.
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People still treat me like a monster, or even better - an exhibit of some sort. There's a large number of people with epileptic kids on the street, and they have no clue how to deal with it. I admit I bump into their conversations, starting with "hey, excuse me, I heard your child is suffering from epilepsy. I am too, for the past decade."
Oddly enough, these people are usually glad to receive tips from an experienced epileptic, like me
It feels weird becoming some sort of epilepsy educator, but hey, it helps people. It shows they're not alone, and most importantly, it shows...
WHAT NOT TO DO WHEN SOMEONE IS HAVING A SEIZURE!
I lost three and a half teeth so far thanks to mythology and the fact people are goddamn idiots!
There's a very common myth circulating everywhere that if someone is having a seizure, you should lay them down flat and shove something into their mouth because they'll swallow their tongue.
I can spend the remaining ~15,000 letters explaining why this is beyond stupid.
Don't tempt me, I got diagrams, I did my homework on this!
So, are you ready to become a lifesaver for epileptics? Here's a step by step tutorial how to deal with a Grand Mal:
1) Catch the person, or at least, try to. A concussion is a very prominent side effect of epilepsy, because... you know... falling suddenly, and bashing your head on the ground, and stuff...
2) Lay them on THE SIDE. While swallowing your own tongue is literally impossible, drowning in saliva very much is. I will repeat this a thousand times if I have to - lay them. On. The fucking. SIDE.
3) Put something vaguely soft under their head. If you're carrying a pillow in your purse for whatever reason, then use that. Your purse will do too. Hell, put an arm or something, just don't let our guy bash his head on the floor.
4) Wait. Yes, I'm well aware a Grand Mal is terrifying. It looks like a pissed off, ancient Chinese demon just possessed a guy in an attempt to break free from its prison in hell, but stay there, for fuck's sake, just stay there.
5) Now, this one depends on the personality of the person: some, like me, will want space, while others will want cuddles and assurance that everything is alright. Since we've reached this stage, I'm guessing it's safe to assume you stuck with the guy for the duration of the incident. At this point you may notice one of four possible outcomes when it comes to bodily fluids: either our guy pissed himself, shat himself, both, or neither. The last one is obviously the optimal resolution, but it's not guaranteed.
I'm a pisser, by the way, thanks for asking.
6) Wait some more. Unless you see blood or serious injury or the guy isn't waking up (give him ninety seconds, but do check for his pulse), let HIM decide if he can afford medics.
Medics, you see, are expensive. I'm pretty sure you wouldn't like me very much if you fell on your ass and suddenly woke up to a roughly 300$ bill because I was worried about the state of your ass, would you? Unless there's an obviously visible reason to call in the squad, don't.
So we went over the "do-s", now let's get over the "don't-s".
There are only two I can think of, really.
1) Don't lay our guy on his back.
2) Don't shove stuff into his mouth.
The latter is actually very deadly seeing as the jaw, at this point, is biting with full force. While conscious, you never use your jaw at absolute maximum power. You know the whole "your jaw is really powerful. You can actually bite a finger clean off if your brain wasn't restraining you" factoid?
Yeah, it's true. Now, if you're strong enough to bite a finger clean off with zero effort, what would that mean if someone was to, say, shove a brick (true story) in your mouth while you're having an episode?
Not pleasant.
Also, our guy may choke on the aforementioned brick. Please don't put construction material in people's mouths. I lost a tooth to a brick and two and a half to a giant, cartoonish spoon.
Jesus Christ, man! How do you live with all that crap?!
Lemme tell ya, mate, god's been trying to kill me for the past decade, and I'm not going to let the old bastard win!
My diet consists of pills, mostly, and an occasional meal here and there.
Funnily enough, the suicide rate of epileptics is 22% higher than general population according to this here study, conducted in 2016.
Gee, I wonder why.
Anticonvulsants, most of them, at least, also are used as antidepressants. Most don't function too well in that regard. Depression is another highly noticeable side effect.
Remember your life as a kid, you had dreams, you have ambitions, you had a generic idea of what you want to do with your life, and suddenly all that is taken away from you. Suddenly, life grinds to a halt. You suddenly can't learn, can't hang out with your friends, can't even enjoy a decent beer on a weekend. All your freedom is taken away. Mentally, I'm still seventeen. Maybe a somewhat responsible seventeen-year-old, with a job and a shoddy apartment.
Depression and anxiety play a big part in my life. I'm constantly scared of "being hit", and at the same time, not "being hit" enough. My case seems to follow semi-consistent patterns, so I have a generic idea of what to expect and when. It's kind of like having a period or being a werewolf, except not once a month, more like twice a week.
The depression... well, I imagine you could piece together where that one is coming from yourself.
I don't live, I survive. Barely.
There are others like me. Others with far worse conditions. All in all, I'm in a fairly alright situation. The pills help, having a shrink helps. An online one. The face-to-face ones just try to pump me full of antidepressants and send me on my merry way without even consulting my file first.
Or stick me in a straitjacket in a padded cell.
So basically... we're just people. Sure, a different kind of people, but people. We're humans. We have our own demons, we want to be acknowledged and respected, we are not something to be scared of.
We want to find a girlfriend or a boyfriend, but every time the subject comes up, and it has to come up at some point, the woman runs away screaming.
All I ask for is to give our kind a chance. Don't run away screaming as soon as you see a guy seize, don't refuse to hire us because you don't understand us.
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