Monday, December 28, 2009

98 bottles of beer on the wall

oops - forgot to post this

Nope - didn't watch a movie so far, was surfing the internet looking for information on the type of EEG I'm getting done. Sigh ...

I read so often about the persistent fear or stigma of epilepsy. Perhaps ... well, no not 'perhaps', definitely ... I am insanely lucky. The vast majority of my friends are well educated. My family is well educated. I hardly ever have seizures. I'm pretty sure I could count them without needing more than my fingers & toes. I got the seizures under control on the first drug. I've never had my driver's license revoked (issues, yes, revoked no); hell, I have a license to drive. One of my first cousins has epilepsy. Last year, I had a (hem, "real") laboratory course for the first time in years, no decades. The great impact of epilepsy? I told my teachers, who simply said "oh, okay, let me know if you need anything". See above about educated acquaintances.

People say they fear to reveal they have epilepsy due to the response of ignorant proles. Even if divine/demonic possession isn't the common diagnosis any more.

I was reading these stories (the Epilepsy Foundation has a great website - give them money if you can't think of what to do with that excess in your 401k). How could I possibly compete with such tales of courage & perseverance against such obstacles?

When I was pregnant with Jr.Gopher#2, I heard about a program the Epilepsy Foundation has: since one cannot perform clinical trials on pregnant women, there's no way to do a prospective study of anticonvulsant drugs during pregnancy. They solicit women to submit their pregnancy related medical records to a study group. They can at least get data retrospectively. I had both sets of records forwarded to them. Especially since I was on different medications for the 2 boys. I figure I should do my part to contribute to the available knowledge.

But, how to eliminate society's residual ignorance?

I figure, since it has a relatively minor impact on my life, my battle standard is to refuse to refer to epilepsy by sissy euphemisms; to be completely open about having epilepsy (albeit not one of those people who gets in your face about it). I always check the box "handicapped" (or whatever it's called today) on demographic questionnaires. This has gotten me some really strange looks during job interviews.

I'm soooooooooooooooooooooooooo tired ...

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