Day 21: Epilepsy and the Arts

I could have written this on Sunday afternoon, but I’ve kept myself busy enough to forget for a couple days.

November 19th was the Creative Arts Showcase hosted by the Epilepsy Foundation of Minnesota. Much like the ad campaign, they asked me to take part and I said, “Okie dokie!” Maybe not in those words, but I agreed to participate nonetheless.

They had displays of paintings, photographs, someone had made a lot of quilts and shoulderbags… all very creative and all created by people with epilepsy. The same went for almost everyone who made some sort of presentation or performance during the showcase (the only exception was a poem written by the significant other of someone with epilepsy).

I first asked if they had a projector so I could show a few minutes of Arsenic and Old Lace. Alas, the venue was too small and they couldn’t have put a screen anywhere. “Curses! Foiled again!” … I guess this was really the first time I was foiled—my backup plan worked fine: I read Pre-Creation Creation for everyone. I made a few adjustments (things like changing the TV show from ER to NCIS and getting rid of the Budweiser frogs) and it worked out pretty well.

Aside from what I did, though, there were people who sang and gave short speeches (I think the youngest singer was 8 and backed up by her father on guitar), the final performer played a few songs on the piano… it was really kinda cool. The point of the showcase was to demonstrate that people with epilepsy are capable of developing and performing different kids of creative arts and that’s exactly what it did. I was glad I could be a part of it and I’m hoping I can do it again next year.

Day 17: “Do I know you?”

I’m hoping this blog entry is the result of a bad type of medication vs. having epilepsy overall (the first would mean it’s a lot less common). It’s likely something my doctor prescribed back in the early 2000’s when I was “medication hopping”, trying (and failing) to find a combination that would prevent my seizures. It wasn’t until I spent some time in the hospital with a bunch of wires glued to my head that they found where the problem area was in my brain and picked an effective pair of meds.

The result I’m referring to is having a really bad long-term memory. I remember very little from high school and college, which makes reunions extremely awkward:

“Hey, remember when we—”
“No. No, I don’t.”

As a result, I’ve only been to one of each: one for high school and one for college. I hate the idea of people reflecting on our good ol’ days and I don’t know what they’re talking about. I can usually recognize former classmates, but our history together? The classes we took, the events we attended, the games of D&D we played? Not likely. I hate it and it also scares me a little. I don’t like being in a room full of strangers in the first place, but a room of strangers who know me and I should know, but don’t? Even worse.

Day 15: Epilepsy on camera

Having epilepsy has made my life more difficult at times, but not unbearable. It didn’t stop me from going through all of the interviews, all of the tests and all of the paperwork to end up being on Beauty and the Geek back in 2005.

For making the final decision about who to put in front of the cameras, they flew a bunch of potential participants to L.A. and locked us in our hotel rooms. During that time, along with interviews with producers and doctors testing me for cooties, I got a visit from a psychiatrist.

One of the forms I sent them during an earlier part of the process was a big “YES or NO” test. “Are you single? Have you been in an adult film? Do you have cooties?” And so on. She wanted to ask me about all of the YES answers on my sheet and there was one that stuck out.

(You’ll have to forgive me for not remembering the exact wording, but things get fuzzy after close to 13 years.) The question was along the lines of “Have you ever experienced something odd or unusual?” You know, like seeing aliens or Bigfoot or the new Godzilla movie in the theater.

She asked me why I checked yes and I couldn’t remember. I had filled it out a few months prior, so… “Well, I mean, we all have different experiences, we all experience the world in different ways, right?” I felt a little ridiculous, but she was satisfied. We went through the rest of the interview without any problems.

It wasn’t until maybe an hour after she left that it occurred to me: “Experiencing unusual things… oh yeah, seizures.”

(In case you’re wondering, they were aware of my having epilepsy. I brought my medication and I was taking it twice a day on my usual schedule, so no seizures. Unfortunately, there was vomiting later in the season, but that wasn’t epilepsy-related.)

Day 13: Epilepsy =/= My life sucks

I was thinking about the posts from the last couple days and they had a pretty negative tone. Yes, having epilepsy is unfortunate and I’d be thrilled if there was an effective cure that would make it go away, but at this point? I’m still doing okay. I can still flourish. Epilepsy is an inconvenience. A big inconvenience, but an inconvenience nonetheless. And if the life of everyone who has epilepsy sucked, why would so many people be smiling in this picture?

Day 12: Problem solved!

I remember when I started taking dilantin in high school, I called them my “stupid pills” because they made it harder to concentrate and focus. It hurt my schoolwork and it hurt my grades. It also prevented my having more seizures, so it was a mixed blessing.

Flash forward to 2000 when I was having blackouts and starting to bounce from medication to medication, searching for something that would solve the problem instead of limiting my seizures to every two months or so. One drug stopped them, a variety didn’t… I’m pretty sure one did some permanent damage to my long-term memory… and some people have surgery and go through other treatments to prevent seizures from occurring, essentially searching for a “cure” for epilepsy.

How does that affect the rest of the brain? My recent EEG showed excess activity in one area, yet the treatment inevitably impacts everything. And there’s no baseline for comparison: where would I be without epilepsy? Without all of the medications? I have no idea and it doesn’t really matter. We’re in the place and time that we’re in with our current circumstances. We have epilepsy and we make do. We survive and we thrive. We are. And that is enough.

Day 10:

I like going back to the website once in a while to see what’s been added to the wall recently. Some are pictures with first names (I had forgotten until I saw her picture there that my cousin has epilepsy); some are comments about how brave they think people with epilepsy are, how it doesn’t limit their lifestyles… some comments aren’t as pleasant.

When I first looked at the page on November 1st, I thought, “Why would you put something on here that’s not uplifting? This is supposed to be a positive, unifying website that shows how strong we are, how epilepsy doesn’t keep us down!” Then I remembered that those negative stories come from people who have epilepsy, too. Sometimes it does limit their lifestyles. A lot. And we shouldn’t disregard or ignore them, especially during Epilepsy Awareness Month. In a lot of cases, there’s nothing that can be done. They’ve tried different kinds of medications, surgeries and treatments, but nothing works. It’s part of who they are and it sucks.

I can only relate a little bit—“I am one”—and I wish I could make things better. I wish all of them could be better. (If someone who’s not doing well is reading this, I wish you could be better, too.) If it helps at all, I can promise you’re not being disregarded by at least one person out here. Take care, everyone.