Living with Epilepsy is like this: It’s going to a theme park with your best friends, only to pass out and have a seizure in the middle of a ride, and waking up with all of them around you. It’s asking, “how long was I out?”, in a heavy, slurred voice, hearing, “only a couple minutes”, but feeling like it was forever. It’s heavy limbs and incredible nausea, being unable to eat your favorite foods in your favorite place on what should be your favorite night. It’s the inability to walk without holding two people’s hands and leaning on them heavily. It’s being inconvenienced at the worst times, wetting yourself past the age of 7, and it’s knowing there’s nothing you can do. It’s knowing your body has, once again, betrayed you.
Your brain will simply choose to over-fire its electrical charges, sending signals where there should be none, and not accepting them where they should be. It’s not your fault, but it feels like it is. It feels like you should’ve done something, like you should’ve been able to control it, forced your brain back into its normal routine. Like that since you know dehydration only exasperates your disease, you should’ve drunk more water. As if you could know that this time, two bottles wouldn’t be enough.
And when you wake up, it’s the words in the tones you’ve never wanted to hear. Concern. Sympathy. Pity. All of it mixed in their eyes and the irrevocable change of their perception of you. All of it ruined. They’re never going to see you as anything different again. Whenever you see these people, they always ask you the same question, in the same tone they did that night, “so how are you doing?”, over and over again, so much so that you want to stand up and scream, “I AM NOT MY DISEASE”, but you can’t, because you know they’ll only ever remember that one night where you were the disease.
You want to scream that they should forget it and move on, because you have.
But you can’t.
You can’t forget the just-before, the feeling of falling and losing consciousness. You can’t forget waking up to your best friend looking more terrified than you’ve ever seen her, and hearing, “you had a seizure”. You keep replaying those moments, keep hearing yourself answer the very nice ride attendant, who asked as many questions as it took to keep you awake, and pretended he didn’t notice how your head kept lolling and your words were slurring into nothing. Now you pretend, but it means nothing.
And though those moments are bigger, contain much more drama than you ever thought possible– somehow the little ones are worse. The ones where you lose focus for a few seconds. Where your body continues moving, but you are no longer present. You don’t know that you’re just staring off into space when you should be at work in a drive thru, collecting the money of the guest impatiently thrusting it at your unseeing face. When you finally come back, it’s embarrassment. It’s knowing you lost control and that that person saw you. These are also easier, because you can brush them off. “Oh I’m sorry, I was looking at the computer, it’s not working.”. You can make excuses. “Sorry, it’s been such a long day.” You can find the magic words to make it all go away. “I don’t know where my head is.” With the right words, in the right tone, with the right gentle laugh, you can make people forget that you’re different. That your brain is wired incorrectly and that it means you can’t do a lot of the things a regular person could.
You can’t drive a car. Legally, you’re not allowed to drive unless you go six months without a seizure, but you would pay money to go a day without one. Walking down the street makes your mother worry more than anything now, because going blank for even a second could mean trouble. Your father refuses to believe anything is wrong, even though he saw you after your very first seizure. Everything for you changes. Words thrown around carelessly by you and other children at young ages now sting even more. They make you cry and wonder if anyone can ever look at you the way they did when you were younger and unspoiled. Even when people who don’t know you say anything about it, you feel it like it’s a personal attack. This ruined you.
You don’t know how to accept it. How to finally cave and admit that it’s something you have to deal with every day. It’s hard to accept something that you wouldn’t have wished on your enemies, let alone yourself. You check “no” on the disability forms for your job applications. You don’t say the words out loud. Seizure is another word you hide and refuse to say. If you say it, then you need to fully realize the unchangeable part of yourself. If you say it, you can’t hide behind magic words and nice ride attendants. If you say it, you better be ready to own it.
They say epilepsy is a disorder of the brain, but to me, it feels more like a disorder of the soul.