some days I'd rather have a seizure than deal with the stigma
Epilepsy is a double diagnosis. There are the seizures to contend with, and then there's the stigma. Sometimes I don’t know which is harder to live with or overcome. To the general public, epilepsy equals a tonic-clonic, convulsions, loss of consciousness - the big and scary. If I hadn’t been diagnosed with epilepsy, I wouldn't have had any idea what it was either, but there are multiple types of seizures and types of epilepsy.
During my second video EEG, they induced a tonic-clonic. I was able to watch the video, and I now understand the stigma and fear associated with epilepsy. It was scary to watch. And because the myths surrounding epilepsy have built up like a Jenga tower, each piece of the truth got taken away, and eventually the truth tumbled to the ground. It used to be that some cultures deemed people with epilepsy possessed by demons, and women with epilepsy were thought to be witches. Not long ago, people with epilepsy were considered crazy, and put in asylums, but they were kept separate from others with psychiatric disorders because it was thought that epilepsy was contagious.
The stigma has changed but it hasn't gone away, and, as a result, there are plenty of days where I would rather have a seizure than have to deal with how some people perceive me. At some point you will encounter the stigma, and the only thing you’ll want to do is hide in a corner with your head down.
After I left the public school system, I had a rude awakening. I enrolled in an EMT course in a community college. I knew I couldn’t be an EMT (because who wants their medic to suddenly start seizing?), but I liked the subject matter and wanted to learn more.
I'd already gotten my certification as a first responder, which I'd really enjoyed, and wanted to take my knowledge a step further. I discussed my situation with the college counselor, the disabilities coordinator, the instructors, etc. The instructor had no problem with me in his class, and almost wanted me to have a seizure in the class as a learning opportunity. Careful what you ask for.
Two weeks into the class I had a tonic-clonic. It lasted a few minutes, but I was okay, and class continued on after it was over. The next day I received an email from my disabilities coordinator that said I was too disruptive, and therefore the college is allowed to ask a student to drop the class. It was like getting diagnosed all over again. I didn’t know what was going to happen from here. If I wasn’t even accepted in school, where would I be?
Just how limited will my life be? I thought I already knew the limitations epilepsy had placed on my life: no baths, no scuba diving, no swimming. But no school?
I couldn’t breathe. I couldn’t look in the mirror, because all I saw was a disabled person who can’t even take a class to learn. That’s it. That’s all I wanted was to learn, and one seizure and I’m out? The ADA clearly states, “...the school cannot refuse to allow a student to participate in a program because of his or her disability, even if it believes the disability makes him or her unqualified to perform the job for which he or she is training... A student with epilepsy cannot be automatically excluded from a class because the instructor fears that a disruption (e.g., a grand mal seizure) may occur during class.”
"If we can hear the word cancer without equating it to a death sentence, then the same should be possible with epilepsy. "