What epilepsy is.

Epilepsy isn't just seizures.

Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'.
Epilepsy is always having to be aware of potential flashing lights.
Epilepsy is having to choose between leaving a place & risking the lights.
Epilepsy is teaching other people how to turn off their red eye reduction flashes.
Epilepsy is having to explain why that matters.
Epilepsy is people telling you that your safety is less important than their picture.
Epilepsy is being yelled at for advocating for yourself.
Epilepsy is being yelled at for not advocating firmly enough.
Epilepsy is being yelled at for not being able to be diplomatic about how someone is hurting you NOW.
Epilepsy is being told you don't have a real disability.
Epilepsy is often being disabled by the very people who tell you that.
Epilepsy is spending days making arrangements so an event is accessable.
Epilepsy is having those agreements be broken, ruining your weekend.
Epilepsy is being expected to thank people for almost making an agreement.
Epilepsy is being yelled at for saying “you could have done better”.
Epilepsy is being expected to be nice about them trying, even if you just had a seizure that they caused.
Epilepsy is people telling you to stay in your house if others cause dangers.
Epilepsy is people thinking you are being too cautious by avoiding people known to be ableist.
Epilepsy is not knowing how many flashes will be a problem, but that whether 2 or 20, it's coming.
Epilepsy is having to educate people unwilling to learn, and doing so while you are at your worst.
Epilepsy is not being believed about your needs until you are in a drastic situation no one was willing to be ready for.
Epilepsy is being expected to be grateful when people almost treat you as a real person.
Epilepsy is knowing they don't think you are a real person.
Epilepsy is always hearing “you are an extreme minority so you don't matter”.
Epilepsy is hearing that from another minority who should get it.
Epilepsy is being unable to win, ever, because the rules keep changing, and giving up is losing too.

My brain is not your punchline.

I've been searching twitter for the #epilepsy tag.

A lot of what I'm finding is awareness stuff, including Epilepsy Foundation retweeting their Seizure Smart link (I'd post it, but it's too simplistic). And then I'm finding things that make me stabby.

No, you don't have fucking epilepsy in your fucking arm because it's tired. That is called exertional tremor, and arms do not have epilepsy. Brains do, and while they can manifest as arm shaking, that's not the same as exhaustion.

Your friend who is angry is not going to have a godsdamned seizure. That isn't how epilepsy works. They can shout themselves blue at you for being an utter shithead, and yet chances are good they will not have a seizure.

A visually overstimulating video that gives you a headache does not mean you have epilepsy. Seizures do not feel like headaches. Headaches do not feel like seizures.

Whatever you are doing isn't going to "give you epilepsy". Jesus fuck. I could spit in your cheerios and sneeze on your face and put you in a room with all my seizure triggers and if you have a normal seizure threshold, it will not do diddly shit.

You aren't cute, you aren't funny, no, a Ceaser salad isn't dangerous, and my brain is not your punchline.

Partial WHAT?

The majority of my seizures are partial complex seizures. In my case, they live in the right temporal lobe. Left temporal lobe are more common, but I always did have to be difficult.

What that means is that a part of my temporal lobe says "hey, I'm bored! let's change it up!" and starts in with the unregulated activity. All of the unregulated discharges stay in the temporal lobe, rather than spreading to the entire brain (which causes generalized seizures, which are what most people think of when they hear the word "epilepsy").

Partial complex seizures can happen in any part of the brain, and each location looks different. Common seizure manifestations, depending on location, include hearing or seeing things that aren't there, random out of nowhere feelings and emotions, wandering, movements called automatisms (things like chewing air, lip smacking, picking at clothes), tingling in the extremities, and generally acting strange.

My seizures tend to involve language problems-no matter what is said to or around me, I respond with "I dunno". Apparently I sound disconnected, even by my standards. I stop what I'm doing, or half-ass keep going & chew on air and do...this THING...with my hands. Like my thumb and forefinger are drawing circles around each other. I do something very similar under stress, but not identical. Apparently there's a "lights are on, nobody's home" facial nonexpression going on, and if I was standing when it hit I tend to wander around aimlessly (as contrasted with after, but that's another post).

Everyone thinks of tonic clonic seizures as the real thing, but partial complex have caused me more problems. Police (and for that matter, pretty much everyone else) assume drugs rather than a medical issue if someone is standing there chewing on air and wandering vaguely with a vacant expression. That's just not the case. It's written on my medicalert, but who reads that? And since grabbing my arm is a good way to freak me out-even in a seizure, it's absolutely possible to trigger an automatic NO GO AWAY reaction-I live with the knowledge that something I cannot help may get me killed or injured at the hands of those who are supposed to help.

Since partial onset seizures are the most common, contrary to what Red Cross first aid training implies, that's kind of scary.