Epilepsy Rant and Other Thoughts

[hiddenmuse]

Dear Epilepsy Foundation of Northern California:

If you're going to have events about living with epilepsy (e.g.; The Living With Epilepsy conference at Stanford University), how about providing some information on mass transit options for those of us epileptics that can't/ don't drive? I'd love to attend ... but I'm not going to leave my house at 4 a.m., just to get 90% of the way to the conference that starts at 8 a.m.

Yeah, yeah ... it's convenient for you, because your office is located in that area ... but quite inconvenient for the people that you are supposed to be helping, dammit!

Same goes for that Stroll For Epilepsy. I'd love to do that - but again, totally inaccessible for someone that prefers to not endanger others by putting her epileptic self behind the wheel of a car.

Fuckers.

No Love,

Carly

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Speaking of epilepsy, I'm kind of glad that I'd made the decision to not drive ... I was perilously close to 6 months seizure-free, only to have one on Saturday. A minor one, but a seizure all the same. As I've probably mentioned before, that decision (no driving) was a very hard one for me - especially when I lived in St. Louis, which tends to be a rather car-dependent town. Thankfully, San Francisco is more transit-friendly, and I do have more of a sense of independence here.

Do I wish that I could drive? Yes, sometimes I do - I'd love to be able to putter around town on a Vespa, or experience the freedom of driving a car. But, I know that I'd be putting myself and others at risk - something I'd known long before I became an Insurance Geek. And I can't bear to have my conscience weighed down with the knowledge that I caused a major accident out of my (perceived) selfishness and stubborn-ness.

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Finally, the doctors and other people within the Epilepsy community that refer to people such as myself as "people with epilepsy" ... I want to just slug them. I am epileptic. It took me half my life to own up to that, to accept that as my reality - and I don't need and/or want someone to come along and try to be all PC about my epilepsy. Don't kiss my ass, be apologetic about my "disorder", or treat me with kid gloves because I have to take three different medications to keep my seizures under control. Just treat me like a human being - make the epilepsy something that is secondary, or tertiary, about me. File it behind "slightly nerdy and geeky"; "small-time country music fan"; whatever. The condition is there - but does not define me.

Comments

[geekwriter143.livejournal.com]

Have you sent them that letter (or an edited version?) That's the kind of shit they probably need to know, and maybe they'll appologize--or at least plan better from now on.

And I didn't even know that some people considered "epileptic" to be an offensive term. Am I way behind on these things? Is diabetic offensive now, too? What about apoplectic? Narcoleptic? Do I hurt my music collection's feelings when I refer to it as eclectic?

This is why I can't do Political Correctness--too many rules. I just try not to be a bastard and hope for the best.

[hiddenmuse.livejournal.com]

I haven't sent a letter yet - I mainly wrote that to just get it off my chest, before I even think of sitting down and writing an actual letter to them.

As for being PC - I kind of gave it up years ago, because I just got tired of tip-toeing around, worried about offending one person, only to wind up offending five others! (Yeah, I know ... a politically incorrect lesbian. Hehe.)

[catsluvdmb.livejournal.com]

Too bad the girl who had an epileptic seizure and crashed her car into my ditch didn't figure that one out earlier.

And yeah, that's retarded they don't provide public trans info.

[hiddenmuse.livejournal.com]

Ouch - I had a friend total her car when she had a seizure behind the wheel, and I've read several stories in the paper about some nasty accidents caused by that kind of thing, so there is/was no way in hell that I'd do that!

I think the lack of public transit info probably comes from their (mistaken) assumption that anyone with epilepsy that can't drive probably has such severe problems that they need a caretaker of some kind. Ah well...

[it-glitters.livejournal.com]

I still don't get it.. And I've seen it before - when the foundation that's servicing a group of people... Forgets to serve it properly. It's like have a school for the handicapped with no elevators...

And well... I'd like to say something helpful and insightful, but I think you've got it down in your 'fuck off' stance. Seriously... I hate dancing around the issue... I can't fucking dance. :P

[hiddenmuse.livejournal.com]

Well, I can *almost* forgive them, since they are dealing with such a wide swath of people - from little kids to senior citizens; and the seizures can be so different for everyone, that it can be hard to tailor the organization to meet the needs of one group ... only to leave several others behind.

And I can't really dance either, which is why it's so much easier for me to just write out the venom and frustrations, before sending an actual letter!

[kathykat.livejournal.com]

Carly, when is it?? I work in Palo Alto very very close to Stanford...all you'd have to do is take the train to my house(east bay), or even to a location on the peninsula and I'd drop you off at the conference, then you can bum around til I get off work, or I can till the conference is out, and I'd take you to whichever train it was.

:)

just a thought