I can sense the goddamn things. I can feel them, see them, even smell them on his breath as they approach from around a bend. It’s unnerving on several levels. He gets agitated, starts ripping at my hair and bonking my head with his own noggin. He goes nuts in the bathtub, the jumper, the high chair, the changing table. He’s wired and loopy and bound to smack his head on something or take a bad fall even though we are holding his harness tightly in our grip. He doesn’t want to eat or drink or walk.
I usually spot Calvin’s seizures from a distance one to three days prior. As if sheltering from a bitter wind, my shoulders cinch up around my neck. I can feel a dull ache behind my eyes and a hard, plasicky shell around my entire body that makes it hard to move. Inside I’m molten lava and nerves, feel like I’m trembling even though I’m not. And, so far, there’s not a thing I can do to save my boy from them even though I try.
Lately we’ve tried evening out one of his seizure medicines, the one with the long half life, to see if it curbs his stubborn dinnertime seizures. We’ve increased one of his other meds hoping for the same. We’ve taken away gluten to see if it improves his behavior, his rashes, his reflux, his immune response, his seizures. Today is day twenty-four since the last one, but I think I see it coming like a freight train in the far off distance. I want to lay my body down in front of it just to save my boy. But these freight trains cannot be stopped once they are set in motion. They just sail on through like a ton of bricks and wreck whatever is in their path, smash it to smithereens, then coast off into the distance only to come through again on their next round.
But I’m hell bent on derailing this epilepsy mother-fucker (excuse my french) and I’ve been known to be a formidable opponent in the past. I don’t give up. That’s the key. Never, ever give up. In my mind I’m like the cowgirl who rides up alongside the damn speeding train, jumps it, jams something steely into it’s gears until it comes grinding to a halt, frozen in its goddamn tracks. Watch out. I’m in a mood.
I usually spot Calvin’s seizures from a distance one to three days prior. As if sheltering from a bitter wind, my shoulders cinch up around my neck. I can feel a dull ache behind my eyes and a hard, plasicky shell around my entire body that makes it hard to move. Inside I’m molten lava and nerves, feel like I’m trembling even though I’m not. And, so far, there’s not a thing I can do to save my boy from them even though I try.
Lately we’ve tried evening out one of his seizure medicines, the one with the long half life, to see if it curbs his stubborn dinnertime seizures. We’ve increased one of his other meds hoping for the same. We’ve taken away gluten to see if it improves his behavior, his rashes, his reflux, his immune response, his seizures. Today is day twenty-four since the last one, but I think I see it coming like a freight train in the far off distance. I want to lay my body down in front of it just to save my boy. But these freight trains cannot be stopped once they are set in motion. They just sail on through like a ton of bricks and wreck whatever is in their path, smash it to smithereens, then coast off into the distance only to come through again on their next round.
But I’m hell bent on derailing this epilepsy mother-fucker (excuse my french) and I’ve been known to be a formidable opponent in the past. I don’t give up. That’s the key. Never, ever give up. In my mind I’m like the cowgirl who rides up alongside the damn speeding train, jumps it, jams something steely into it’s gears until it comes grinding to a halt, frozen in its goddamn tracks. Watch out. I’m in a mood.
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| photographer unknown |
I've often compared myself to a seizure dog -- when Sophie was really young, I'd sit up in bed, totally awake a few seconds before I'd hear her go into a seizure. Very, very strange connection, that one.
ReplyDeleteI like to think that predicting seizures makes us more empathetic, more understanding. I recently read about a new tool that is being tested by the FDA that people with seizures could wear that would predict how likely they were to have a seizure at a given time and I found myself thinking "what's the point?" Learning to predict my seizures made me listen to my body better. And goddamn! If you can do that for *someone else's body!* You guys are super people.
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