September 16, 2011
Oh yeh. It’s described as neurons misfiring, an electrical
storm, and an interruption of connections. We constantly hear about people
being able to lead perfectly “normal” lives in spite of it. I’m sick of hearing
that, sick to death of trying to make people understand, be more aware, be a
little more empathetic---give a damn! Its epilepsy----- and it’s ugly and
ruthless and I hate it.
Sure, life chugs along for a while kind of uneventful. Like
this past month for example. And by that I mean, nothing (seizures) approaching
two minutes or more. The other nasty “brief” (5-15 second) seizures continue of
course throughout any nap, before entering a deeper nighttime sleep, before
waking in the morning. And sometimes, like this morning, the nasty brief one
extends to a full blown oh-I’d say- 4 minute one, where I watched the clock and
began to wonder if I’d be calling the paramedics.
That one was at 6:37. After twenty minutes Michael seemed to
settle into a fairly restful sleep. I
was pretty shocked when at 7:37 I heard the sounds of yet another. This time,
two and a half, maybe three minutes-intense, scary. This just doesn’t look like a couple little
innocent neurons “misfiring”. It looks like there’s a damn explosion in the
brain and the body is totally disconnected-stiffening, flailing around, shades
of blue. Breathe----breathe!! Whew. Big
gasp for air. Still.
Ten minutes later I hear a rustling. When I enter Michael’s
room, he’s sitting up. He looks at me. I assure him he’s okay. “Go back to
sleep”, I say. He mumbles. I make out he has to go to the bathroom. He’s
unsteady. I help him get out of bed. At 5’9” he’s got lots of inches on me and
his skinny body is just barely able to stay upright. He’ll fall if I don’t hold
him. “Do you mind Mike? I think I need to stand behind you to keep you up”. He pees. I hold him up---I cry. This sucks!
Oh sure. I’ll recover that positive attitude. I’ll reply
“everything’s fine” when people ask” how’s Michael?” But really---- really and
truly----it’s not fine, not at all.
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