I’ve been searching, probing, and pounding away at my
psyche, trying to figure out what really made me want to begin telling people
about my epilepsy. On the surface, I’ve
felt that I finally got angry about the senseless stigma against epilepsy. But why?
What sparked it or what was wrong before then that suddenly righted
itself?
Starting at the beginning, I felt the stigma when first
diagnosed because of my own misconceptions of what “an epileptic” is. This was the Seventies. People with epilepsy were less than, the
other, not like me. Suddenly I was one
of them, and rather than change my views of what such people are like, I
changed my views of myself. As the
decades progressed, so did the outside world.
I grew, too, to some extent… but not really. My confounding Twenties, led to my shaking
off of the negatives in my life in my Thirties.
My Forties brought with them more perspective, motherhood, and feeling respected
by others. In a sense, I was maturing.
And then there were my Fifties. The minute I entered this decade, I felt that
I could do anything I wanted. Don’t get
me wrong. I didn’t think I was
infallible, but rather that I could break free of convention, getting a white
streak in my hair, painting my toenails purple, and the like. Soon, I’ll get a small, discreet tattoo of a
moon - purple, of course!. The definitions
of each distinct decade of my life were all unnecessary constructs I had
made up. Nonetheless, I internalized them
and, to some extent, shaped my life by them.
Halfway through my Fifties, I suddenly felt that coming
clean about my epilepsy became part of my “to heck with all of you”
attitude. Let’s face it. It was a mid-life crisis. I was in a revolt, and my zeal
physiologically felt invigorating, similarly buzzing like the enervating experience when
angry. Ah, ha!!! I had confused the two.
Lo and behold, people whom I told about my epilepsy reacted
pretty well – surprised, but accepting, and usually curious to hear more about
epilepsy. They didn’t let me down. And in doing so, they unknowingly encouraged
me to take one step further.
Beginning to work as a volunteer with the Epilepsy
Foundation New England and blogging, I now was becoming an advocate, something
I had wanted to do for a long, long time.
Epilepsy, in fact, wasn’t making me “lesser.” It’s was giving me a sense of pride in my rising
up against the challenges of our condition and being part of a community whose
members all have to do so.
So that’s it. It was
an “I’m me, and I’ve been around for too long for anyone to tell me what to do.” All I can say is that I’m glad that the
Millennial generation has figured this out before waiting five decades. We with epilepsy are not the other. We’re all part of a diverse world, not
defined by any one aspect of ourselves, and certainly not by having epilepsy.
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