On my facebook today, an epileptic group linked a blog post about 10 things one woman named Tiffany Kairos wished she knew before her epilepsy diagnoses. None of them were super surprising, most of them were practical, like “diet is important” and “tests are important” and “talk to your doctor”, good stuff.
But, of course, as there must always be, there was the “don’t let your epilepsy define you” point.
I’ve stated my opinion on this before, but … just reading the long list of other people’s wishes … I feel like unloading a bit. So here are a few of my OWN wishes.
(I don’t mean offense to her on this, I really don’t. I don’t mean offense to ANYONE, just like I know they don’t mean offense to me, but this is like the only message that comes out of the epilepsy community, and my skin has been rubbed to the bare bone by it.)
I wish I knew how EASY it would be to be an epileptic alone, and how hard it would be to be a “Team Epileptic” or a “Foundation” Epileptic or whatever group I support today or tomorrow. I want the research; I want the treatment; I hope for the cure (though I don’t bet on it … because, seriously, I get how much money people make off of treatments, and how diverse epilepsy is… even IF a cure was tried for, ONE cure wouldn’t cure ALL of epilepsy, it’s too varied for that), but I am always wary and wearied by the rhetoric.
I’m not looking for religion. Wasn’t before, and I’m not now. I don’t need to be told who I am. I just need to know what I am, and how to cope with it. I can do the rest myself.
That I always knew. Even before I was epileptic.