10.17.2018

of monsters and medicine

Writing would be so much easier if not for my son—my non-verbal, incontinent, legally blind, autistic, disabled, seizure-prone, drugged-up child who, as I've written before, sometimes reminds me of a mini Frankenstein's monster. Come to think of it, everything would be easier—sleeping, waking, eating, traveling. I'm up at least a handful of times every night to check on and reposition my boy. I often wake to the nightmare of his grand mal and partial complex seizures. I can never sleep in past 6:30 since he must get his antiepileptic drugs first thing in the morning, and he's really a two-person child. Since Calvin goes to bed early and often eats different food than we do, we never eat together as a family except on Thanksgiving. And because Calvin is prone to get or fall out of bed and hurt himself, and therefore sleeps in a safety bed, we haven't figured out how to travel with him, plus we can't legally take him on a plane because of the cannabis oil used to treat his epilepsy.

Going back to writing, today I got my third rejection from The Sun magazine for a piece I submitted years ago titled Of Monsters and Medicine, about me and grief, Dad and his cancer, Mom and her Alzheimer's, Calvin and his epilepsy, and cannabis as medicine for all. Four years ago I was ecstatic when the magazine published my first piece in print, Faith of My Father, which appeared in the August 14th issue next to an excerpt from a book written by Gary Snyder.

Earlier this month, The Sun's managing editor assured me she'd soon have an answer as to whether they'd accept my Monster piece for publication, which I had written in response to their request for writing on caregiving, medicine and alternative therapies. I thought my prose would be a good fit. I guess I was wrong.

The rejection hit me harder than expected, probably because I am so goddamn sleep deprived and since Calvin has had such a sucky month seizure-wise. He's had five grand mals (his fifth one this morning) and at least nine partial complex seizures so far, for a total of fourteen in just seventeen days—nearly twice the number he had in all but one month since June—and we still have two weeks to go till the end of the month.

As I write this, my brain is in analyze mode, trying to figure out what the hell to do with Calvin's Palmetto Harmony CBD cannabis oil dose. I think my mind and my gut are telling me to increase the dose (since decreasing it seemed to yield more seizures, and since I decreased his THCA several weeks ago, and since he has gained a little bit of weight, enough to outgrow his Keppra dose which I don't want to increase, and since it seems with the administration of more CBD his seizure clusters usually stop.

What's so difficult is that the range of CBD dosing is so vast—anywhere from a dozen or so up to several-hundred milligrams per day of whole-plant oils, to as many as six- to thirteen-hundred milligrams for kids taking Epidiolex, the non-synthetic pharmaceutical version. But I must remember that Calvin has always seemed to need higher doses than most kids his age and size for any drug to be somewhat effective.

And as I sit here looking out over my garden I'm reminded that, if not for my little monster Calvin—even though he makes everything under the sun uber difficult—I may not have begun writing at all.

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