Sunday, March 6, 2011

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.

6 comments:

Jessica Keenan Smith said...

Rock on!
Jessica
Founder of
http://Livingwellwithepilepsy.com

Spaz Girl said...

this is awesome. i am going to do one on "What Cerebral Palsy Is"

Neurodivergent K said...

@SpazGirl DO IT DO IT DO IT DO IT DO IT!

disableddramaqueen said...

love this @ spaz girl read yours 2, can relate to both

Rebel Mommy said...

I heart you! Thanks for this.

Neurodivergent K said...

<3 you too. This is the disabling aspect of epilepsy so often.