Surrealist Doodle

Surrealist Doodle
This was used as the cover of Karawane in 2006 and I have included it in on a number of bags and postcards over the years. Someone on the subway asked me if it was a Miro. I was very flattered!

Monday, February 11, 2013

Epilepsy

Many people don't know this about me, but I had epilepsy as a child and thankfully, I outgrew it, although I wonder what the adult implications will be now that I am getting older -- a predisposition to have a stroke (which I believe that I have had already) or Alzheimer's (which runs in the women on my dad's side of the family anyway) or other brain-related conditions that affect older people.

But I was very lucky. I grew up in the 70s and my parents tried very hard to make sure that I did all the same things as the other kids and did not make a HUGE deal about my epilepsy (although it was always there in the background). One memory that stands out is when one of my friends had a roller skating party. My mother had read that strobe lights can set of seizures in epileptics, and she and I drove the 20 miles into Peoria to check out the roller skating rink. She did that so that she could say yes to my going to the party. She could have just said no right away and lived with the consequence of having me whine for the next week (or 20 years). It wasn't until years later that I really thought about the implications of her doing that so that I could go to the party, and thankfully, I was able to thank her for doing that while she was still alive.

To my knowledge, my teachers treated me as they did anyone else. I think there might have been some things going on behind the scenes, which I have come to realize only upon reflection since I have been older. For example, when I first started high school, I was put in the lower level English class, the one that I later identified as borderline "remedial," which meant that I read from an anthology instead of reading Shakespeare, like the kids in the advanced classes. (Little did they know that I had read King Lear when I was 10!) But I paid those things no heed and they never held me back. I showed myself to be at the top of the class and by my junior year, I was able to pick my own classes anyway and after that year, I actually graduated. So if they were attempting to hold me back in any way, they failed, not me.

Most of my classmates knew I had a seizure every once in a while, and they would tell the teachers what to do when I had one. The teachers told them not to tell me about my seizures, but of course they did, including tales of how the teachers freaked out. (That was probably why the teachers didn't want me to know, but it was wrapped in the guise of "not upsetting me.") We would laugh about the behavior of the teachers as well as my own behavior during the seizure, because I would frequently do odd things before passing out. (Once, when we were playing baseball in the backyard, I apparently stepped off base and went to the neighbor's house and started sniffing the flowers.) Sometimes, when we had to do something we didn't want to do, my classmates would try to ask me if I could have a seizure to get out of an activity.l (I of course, couldn't invoke a seizure at will!) It was treated very normally among most of my classmates, friends, and neighbors.

I had no idea about the levels of discrimination that even existed during my lifetime that the author discusses in this article in Truth-Out. We had occasional comments from friends and family members to the extent that they were amazed that I was able to go to college or to do this or that, but I always thought that was just *their* ignorance. I had no idea that these were coming from shared social stereotypes and stigmas. I am glad that I was oblivious to this kind of thing because it meant that I just went about my life and did what I wanted to do at every turn, not feeling self-conscious about my epilepsy, not feeling like I had a "disability."

I graduated early from high school, I have my master's degree and several years toward my PhD, and have never felt that my epilepsy limited my opportunities. Consequently, I have also never felt ashamed to talk about it. I never felt a stigma. I encourage people with epilepsy to not be shy about talking about it. Just tell people around you, hey, I have epilepsy and sometimes I have a seizure, and here's what you do if you see me have a seizure. It's like coming out gay. The more people know people who have "hidden disabilities" or anything else considered "abnormal" by society, the more people see these people as competent, intelligent, creative, funny human beings just like everyone else they associate with, the more normal having these kind of conditions will become.

4 comments:

Mike and sometimes Rachel said...

Interesting, well said, and thanks putting this up. This is a very common problem, even though it takes people into a deep strangeness. I am not epileptic, but I lived through a year in which I had about 20,000 seizures. It makes you live more in the moment, I think -- a little anyway.

Mike and sometimes Rachel said...

This is an interesting "Blogger" style -- http://danielefinley.blogspot.com/

Fluffy Singler said...

I have heard about people who have multiple seizures even in a day. 20,000 a year is a lot. Hopefully most of those were petit mal and didn't result in you passing out at the end of them. I had a couple of petit mal seizures toward the end where I just became disoriented for a few minutes and then it was over.

Since I had lived with it since birth, I'm not sure about its effects on personality--it was just something I always had an always lived with and I transitioned relatively easily from having it to not having it. I am sure it is harder to deal with when you develop it later in life.

Mike and sometimes Rachel said...

Well, with me it was a matter of my brain reknitting after a serious thrombosis. After a year they calmed down. We did sleep tests that showed I has having 400 mini-events every night, stiffening and lurching up from the mattress. It was all news to me. I always woke up feeling well rested.