I have recently realized that I am living the life I always wanted. I am an author! I am a good mother! I just didn’t know it until now. My disability has controlled so much of my life, I couldn’t see it. Epilepsy has tinged my life with sorrow and fear. I have felt disappointed in myself for a long time. I don’t have a “job.” I have found myself more or less homebound by illness and loss of my driver’s license. I can’t go to work. Don’t you think that I would if I could? I’m smart, I’m educated, and I have a Bachelors’ Degree! It would be so much easier if I could just go to work like the rest of the world. But I’m not like the rest of the world. I’m “differently abled.”
This has shackled me for so long. I don’t like staying at home all the time, all the while seeming fine to much of the world. I only seem sick and afraid to those who know me well. Once, I wanted a career. Then I started having seizures. Have you ever had a seizure out in public? It’s not fun, and I try desperately not too. I am so afraid that someday, someone will put something in my mouth during a seizure during some misdirected attempt against myth. I cannot swallow my tongue, but I can break my teeth. I’d prefer that would not happen.
The easiest way is to educate the people around me, and keep the rest of the world at arm’s length. I don’t trust other people to understand and put my best interests at heart. They might not believe I’m possessed or a werewolf, but I can still scare the crap out of people. Plus they usually think I’m on drugs. I get drug tested whenever I go to the hospital. It’s always the first question, “What kind of drugs have you taken?” None, my brain just exploded in an electrical storm, par for the course. It happens just because I was tired or the moon was full; just because I was on my period or STRESSED OUT or for no reason at all. And most people just don’t understand.
There are days that just feel like seizures about to happen. I live in a barely controlled panic on those days, just in case. I keep the curtains shut and don’t do anything dangerous. The worst part about a seizure may not be what it does to you, but what you can do to yourself when you fall over or crash your car or fall into boiling water or a pool. I live in fear of these things. Especially on the days when I can feel that sick feeling wavering just on the verge of something horrifying in the back of my mind. It is the most terrible feeling in the world. It is a malignant feeling that something horrible might happen soon. Or maybe something terrible has already happened, and I don’t know. A loss of consciousness is a tricky thing, I don’t know if I’ve had a seizure. And I have absolutely no control over it. Turn off the TV, stay off the computer, and don’t go outside. Be careful. At all times, I must be so very careful. I am consumed by the fear of having a seizure. I am seized with fear.
A person very close to me once laughed at me when I told him my neurologist wanted me to have brain surgery. He laughed voraciously, “Are your seizures really that bad?” I felt like he slapped me. Our relationship has been permanently damaged. I wish I wasn’t a petty person and that I could forgive him. But I cannot. Not yet anyway. So many people, people I know and care for, believe me to be lazy, not sick. I know, they all tell me as much. Thanks so much for thinking me to be so much more healthy and competent that I am. What an honor!
Maybe someday I will forgive them all for this prejudice. Let’s call it what it is. Because, let’s be honest, prejudice against disabled people still run high. It’s still okay to think lowly of the disabled. We Americans believe that we are a pull yourself up by your bootstraps country. What’s wrong with you? Everyone has the same opportunities. Unless you are sick, then you’re fucked. Not everyone starts at the same starting line. Some people can’t even see the starting line. Some of us need help.
I have LOST friends over The Affordable Care Act. My cousin un-friended me on Facebook. All because I believe that people with “pre-existing conditions” should be allow adequate and affordable health care. Do you want to know how many seizures I had when I was uninsured? Hundreds. If I could have afforded my meds, I might not have had any.