At 23, I’ve had to accept a lot about my life that many people would never even have to think about. Unless some sort of miracle happens, I’m going to have epilepsy until the day I die.
I’ve had to accept that it can get worse over time. I may never be able to drive a car, which is something that most people take for granted. I’ll probably never get to work my dream job, and even little things like watching TV or surfing the net can be difficult because flashing animations and effects can induce seizures.
There is also a chance I may never get married because the guy will not only be getting me, but the seizures as well. I also face difficult decisions on whether or not to have children. I’ve taken a lot of medication known to cause birth defects, and I don’t know what long-term effects they may have.
On top of that, I could pass the epilepsy to my kids. And even if I wanted to adopt, they are not going to give a kid to a person like me – not when epileptics have had their children taken just because of seizures.
Everything that is regarded as normal presents itself as some sort of problem for me. It’s a lot to swallow at times.
On good days, I don’t appear to be disabled at all. Aside from being a bit clumsy, I look and act no differently than anyone else.
It’s difficult, because I do have a very severe problem and people don’t always treat me like I have a problem at all. They’ve never seen me on a bad day, when I’m having so many seizures I can’t speak, or when I forget where I am or am generally confused beyond belief.
Uncontrollable seizures are bad, regardless of what kind they are. Basically, it means that at any time or place, I can have a seizure, and there is nothing that can prevent it from happening.
Imagine going unconscious for about 7 seconds up to 60-200 times per day. What would your daily life be like?
What if a seizure hit when you were pulling up to a red light at a busy intersection on your bike? Or while you were taking something out of the oven? That’s what I go through daily. I may speak intelligently, but that does not negate the fact that I am disabled.
I know people expect more out of me than I can give simply because they do not see me as disabled. I even go through it with some of my friends. I’m pretty sure one of them thinks I’m just lazy, and another will mention things to me about applying for certain jobs when I’ve told them time and time again that these jobs will not hire me as I am too undependable because I cannot predict the bad days.
They don’t understand what that feels like when they say things like that. It’s like waving a steak in front of a starving dog, but only letting them get close enough to sniff it. It makes me want to scream sometimes.
I don’t pity myself, though, and hate it when other people pity me. I simply do what I can, and try to live with the fact that this is how my life is.
Oh sure, I have my days where I’m depressed and whiny – who doesn’t? But the majority of the time, I’m pretty happy. And I am anything but lazy. I’ve never been a quitter. I’m not giving up without a fight.
Jaime Dempsey attended Kennesaw State University for two years as an art major but dropped out because of her seizures. She hopes to go back to college in the near firstname.lastname@example.org