Little Known Facts: Pre-Epileptic Wishes

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.

Ugh.

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 that I would often be an outcast in my own community because I easily got tired of all the optimistic “don’t let it define you” stuff. It defines me as much as my gender and my family and my education and my nationality and my hobbies and my job…. if not more so because my control over it is far more tenuous and deserving of my attention and focus. Stop, for the love of goodness, stop telling me how I should see myself.
 
Maybe they mean “only” thing that defines you, but that is so rarely what is written, if ever.
 
I’m not depressed – at least not recently, since haven’t been on Depakote since I was a kid – and I’ve been epileptic for half my life. I just see epilepsy as a part of myself, not something I deal with. It DOES define me, I DO define myself by it. I AM epileptic. I own it, it owns me. After my cats, my pills are the first things I see when I wake up, and they are the last things I see before i go to sleep. When I travel, they are the most important thing I prepare ahead of time, the first thing I pack, and the first thing I unpack.
 
Yes, I make life choices based on whether I feel it is safe to do, because I spent a brief amount of time feeling like a coward for being cautious and ended up having seizures in public when a more cautious me would have chosen to spend that day indoors. I wish I knew people would tell me to “be more courageous” and to “not let epilepsy control your life”. That’s bullshit.
I wish I knew that people who I thought would understand what I was going through would so often make me feel more guilty than supported.

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.

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