I agree completely! I am one of those people you would never ID as having epi, and I had my first sz as a baby. Epi is just a fact of life for me, and I make that clear to people whenever I get the chance.
This has become important enough to me that it's an significant focus in a novel I've been working on for the past few months. It includes two characters who experience epi very differently: one who has a stroke and ultimately dies, and the other who is the best friend of the brother of that character. When Anna has her stroke and is unable to communicate to her family how she experiences her szs, Will, a medical student and best friend to Anna's brother, Mike, educates her family on them, making sure they understand that she's not suffering during them. When Will and his long-distance girlfriend, Sarah, suddenly break up (they later get back together and marry), he puts his heart into helping Anna cope with her stroke effects and her family to understand how she feels and what she needs.
This is just one theme, but I felt it's important to include at least two degrees of epi. Yes, we hear a lot about the seriousness and potential fatal consequences of epi (which needs to be said, because it can be; my best friend's 3 yo son has Lennox-Gastaut, a very serious epi disorder), but we need balance, so those who don't deal with epi, or are new to it, won't continue to live in fear of it. I sure don't want that, and I think many of us here don't, either.
LIZARD :)
--- On Sat, 10/31/09, SueW <gswidemark@cox.
From: SueW <gswidemark@cox.
Subject: [epilepsy] exposure for epilepsy
To: epilepsy@yahoogroup
Date: Saturday, October 31, 2009, 7:20 AM
For people with or know someone with EpiAfter watching the videos which were shared here and which stated that 50 million people have epilepsy, I ask - do all 50 million want to be represented as having a "terminal" "brain devastating" disease? May I remind that those who suffer that type of seizure are a very small percentage and most folks with a seizure disorder are normal to high achievers? Many high IQ folks also....
For example: Nathen Milstein who was one of the world's greatest violinists and so forth.
No wonder so many are hesitant to admit having it. With that type of publicity, who wants to be thus branded... :( How about some REAL awareness of epilepsy... like... your neighbor who looks totally "normal" may actually have it?
Sue
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