Thoughts on National Epilepsy Awareness Month

Thanks very much to Trisha for suggesting I post this here — it was originally in a protected entry elsewhere, and I’m very happy to have the opportunity to present it to a wider audience with minimal edits.

Today starts National Epilepsy Awareness Month, which you have likely heard about from pretty much no one.  Why?  I honestly don’t know.  Well, I sorta do know, it’s just kinda stupid.  Epilepsy still isn’t really considered a legitimate medical condition by many — to be honest, I’m not really sure what it’s considered.  A joke, probably. A general source of humor.  A catch-all term for any negative reaction to flashy lights.  A dramatic device for medical shows.  A handy addition to historical dramas when we discover that Caesar had epilepsy.  In other words, not many people consider what it actually entails.

In October 2002, exactly eight years ago, I was in a car accident that left me with a concussion.  I was told at the hospital that the concussion would have no lasting effects.  However, over the next several months I started having odd symptoms for I-didn’t-even-know-what.  My first seizure was on 14 June 2003, just after the masquerade at Anime Mid-Atlantic.  I have no idea what led up to it — I remember being onstage, and then I remember being backstage with three friends having come looking for me, one of them hugging me like they were afraid I was going to die.  None of them knew what was going on at the time.  (Those three friends know who they are, and I hope they know how thankful I still am that they were there for me when we were all rather confused — makes me weepy just thinking about it now.)

For the next couple of years, I was having regular seizures on and off.  I had no idea what they were, but people were more than happy to diagnose me themselves: bipolar, schizo, even just having temper tantrums to get attention.  It wasn’t until I collapsed in the staff bathroom at the Credit Union where I worked — in August of 2005 — that I finally took someone’s advice to go see a neurologist.  An EEG showed that my ‘tantrums’ were actually complex partial seizures, and a very nice doctor had the unfortunate task of telling me I have epilepsy.  And this would mean having to change my job and my lifestyle, start experimenting with medications, and hope to God I could still drive.

Needless to say, I was bloody embarrassed.  My knowledge of epilepsy basically extended to the fall-down-and-twitch seizures you see on TV and adverse reactions to Porygons.  My first thought was ‘Damn, I am some kind of laughable invalid freak.’  It didn’t help that there were people I considered rather close to me in my life who didn’t believe me.  One actually said, ‘Well, that’s not like any sort of seizure I’ve ever seen.’  I was very lucky indeed to find a much lower stress job with a far more understanding employer, but the rest of my life was very iffy.  I spent every day wondering when the big-ass seizure would come that would make a doctor say ‘Okay, no more driving for you.’  Every convention I went to, I was frightened there would be a repeat of AMA, but surrounded not by friends, but total strangers or less understanding acquaintances.

Eventually I knew I would have to start telling people what was up whether I liked it or not.  I couldn’t just keep leaving raves early or ducking out of things, and I felt it was only fair to explain to people I traveled or shared rooms with that they might be party to one of these.  The upshot was, unfortunately, my own fault — despite the fact that I’d started talking to people, I was so scared that I just removed myself from the idea of going to parties. And my friends took me at my word.  Not their fault (as far as I know), but mine for likely giving the impression that I wouldn’t go if I were invited.  And at that point, they would have been right.

I made the rather major decision to see JAM Project when they were performing at Otakon in 2008.  I knew it was gonna be pushing myself, but I couldn’t miss them.  And I was amazed at the support system I had: friends asking for first aid information in advance, helping me out of the auditorium when I’d exhausted myself, keeping an eye on me in the midst of all the excitement.  I started to suss the fact that maybe there was nothing to be embarrassed about — that and finally being invited to parties and knowing that people trusted and cared about me enough to actually want me somewhere in spite of the risk I might be running.

I will admit I’m still coming to terms with things five and a bit years after I got the diagnosis.  I have ups and downs, I have other medical issues exacerbating my seizures (and vice-versa), but I also have people who care enough about me to accept me as a friend — and those who go the extra mile to learn exactly what it all means and how to help me if I need it.  I hold no one responsible for me in an emergency.  But I am forever grateful to those who step forward.

The color for epilepsy awareness is lavender.  And I will be using that as a sort of theme to sell certain items at my table for Nekocon, all the proceeds from which will go towards the Epilepsy Foundation.  But I don’t want people to go out wearing it.  To me, that doesn’t mean you’re aware.  It just means you have purple in your closet.

When people talk about “epilepsy awareness,” the point isn’t to know it’s there, but to know what it is in the first place.  People already know it exists.  But they don’t know numbers.  They don’t know proper first aid.  They don’t know there are different types of seizures that manifest in unfamiliar ways.  They don’t know how to help.  There are people out there who still think you’re meant to restrain someone and stick a spoon in their mouth to keep them from swallowing their tongue.  And I will admit a major part of my fear of having a seizure in public comes from the idea of someone stepping forward and doing the wrong thing and possibly hurting me.

If you want to do something, do some reading: TalkAboutIt.org is a site set up by Greg Grunberg, and it’s a fantastic source of very straightforward information (especially for kids). epilepsyfoundation.org/about/ is also a good informational site, and has first aid for all different types of seizures.  It’s not terribly difficult stuff, either — no spoons, no restraints, nothing like that.  Just read up and learn what it all means.

The Epilepsy Foundation also has a place to donate.  If you have the extra cash, please do.  I work for a news website, and it saddens me to see reports come in on medical research that’s stalled or stopped because there isn’t enough money or interest.

[Alternatively, if you’re at least level 30, you can bring bring ten Porygon beaks to me.  You will receive 3 silver and 3000 XP]

I don’t need to know who’s done any of this.  I don’t need any visual or verbal sign that people “care.”  I know when people care.  They invite me places without fear.  They help me when I can’t drive myself somewhere.  They learn what to do in an emergency.  They don’t hold me responsible for my seizures.  They don’t laugh at me or ridicule me (though I’m not going to lie, I have made my share of Pokemon, rave, flashy-light, etc. jokes — knowing when to have a sense of humor is what gets me through sometimes).  They don’t get offended if I can’t go somewhere or if I run off early.  That means more than a ribbon or a shout-out ever will.

Thanks to those of you who have done this for me without needing any sort of national awareness month to do so.  You know who you are, and I’m incredibly grateful.  And if it’s taken this to get people to stop and think and inform themselves, so be it, and thank you for actually doing so.  There are somewhere around 3 million other people in this country going through the same thing I am.  A lot of them are kids with frightened parents and unsympathetic teachers and classmates, and others are people like me who spend years being scared and paranoid that they’re considered freaks or invalids or jokes and start to think that way about themselves.  By educating yourself, you’re doing a favor for thousands upon thousands of people, not just some girl who writes for an entertainment blog.

You can get more information about NEAM at GetSeizureSmart.org.

Posted on November 1, 2010 at 12:50 by Kara Dennison · Permalink
In: Opinions/Editorials · Tagged with: 

One Response

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  1. Written by Marian
    on 2010-11-03 at 09:16
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    I am so glad that you have put up how to help people when they are having seizures, I can say first hand I did not know, and when my boyfriend had one, I was really scared. Thank God that the medical person on the other end of the phone calmed me down and walked me though what to do. But it would have been nice to know before hand…

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