Saturday evening we enjoyed a bit of a warming trend: thirty-seven blessed degrees just before the snow began to fall. Michael hauled out the barbecue that had rusted a bit having not been used for months. He brushed the hot grill then slapped some thick shumai burgers on it, searing the shrimp-sausage-cilantro-ginger-scallion-habanero slabs on both sides. Luke and Sarah brought homemade steak fries tossed in olive oil and herbs which we baked to a golden crisp. For one night we managed to quench our seasonal affective disorders, slathering our burgers in garlic guacamole and mustard like we do in summer, slurping beers and bourbon on ice and, for a time, mostly forgetting about our disabled sons.
The week before I’d been shocked back into winter having spent several days out west in seventy and eighty degree weather. The relative calm I’d experienced sleeping in, seeing girlfriends, spending time with my mom and siblings—child free—was, once home, yanked out from under me by my whiny, hyper, stumbling kid. The one thing that kept me from losing it completely was the thought—the hope—that a tincture of medical marijuana was just days away from melting into my son’s mouth and dissolving away his seizures and his irritability and, thus, my angst.
But, like a carrot dangling in front of my nose, this medical marijuana thing has become frustratingly elusive, this spiraling forward motion that I sense is mere illusion, one that appears to be moving in a direction but in reality is static. It’s vexing, because day by day Calvin grows, and as he grows he outgrows the doses of his two pharmaceutical seizure medicines. I don’t want to increase them because the hope is to eventually decrease them if the medical marijuana tinctures work.
A few days ago I visited Michael in his photo studio. He showed me the huge prints he’d made for a friend and client. They laid on top of a large worktable, their silver tones shifting and swirling in the flat white sky and silken water of a reservoir and its dam, the chemicals used to make the photograph eerily alike the toxic blend that once was the polluted river itself. As we were leaving I noticed a large cardboard box on the floor. It was overflowing with amber bottles and plastic bags, urine test strips and foil blister packs, remnants of some of the drugs Calvin has ingested during the eight years since his epilepsy diagnosis. Michael means to continue photographing the junk, the awful paraphernalia strewn like pollution in the wake of repeated seizures and vicious side effects, of EEGs and blood draws, ambulance rides and emergency room visits, IVs and intubations.
And then I think about the plant—cannabis—growing in some warehouse all tall and beautiful, lush and green, drinking in all of our carbon dioxide and breathing out life-sustaining oxygen. This plant is there for the taking—for the tincturing—but certain folks ignorant of its uses and benefits are attempting to make it more difficult, perhaps even impossible, for children like Calvin to access in Maine. And, so, I’m frozen in this static winter of ice, paralyzed and fearful of giving Calvin a treatment that might be whisked away at any moment, rendering him with little to no chance of thriving from its benefit. Then I remember what I recently told another mother in a similar situation: that there is nothing to fear but fear itself. So I’ll move forward, pull on my ass-kickin' boots. Gonna go out and kick some major butt. There's a warming trend coming and I'm going to melt the frigid grip of ignorance, testify against the bill prohibiting kief, because without it there will likely be no medicine for my son. Anyone wish to join me?
The week before I’d been shocked back into winter having spent several days out west in seventy and eighty degree weather. The relative calm I’d experienced sleeping in, seeing girlfriends, spending time with my mom and siblings—child free—was, once home, yanked out from under me by my whiny, hyper, stumbling kid. The one thing that kept me from losing it completely was the thought—the hope—that a tincture of medical marijuana was just days away from melting into my son’s mouth and dissolving away his seizures and his irritability and, thus, my angst.
But, like a carrot dangling in front of my nose, this medical marijuana thing has become frustratingly elusive, this spiraling forward motion that I sense is mere illusion, one that appears to be moving in a direction but in reality is static. It’s vexing, because day by day Calvin grows, and as he grows he outgrows the doses of his two pharmaceutical seizure medicines. I don’t want to increase them because the hope is to eventually decrease them if the medical marijuana tinctures work.
A few days ago I visited Michael in his photo studio. He showed me the huge prints he’d made for a friend and client. They laid on top of a large worktable, their silver tones shifting and swirling in the flat white sky and silken water of a reservoir and its dam, the chemicals used to make the photograph eerily alike the toxic blend that once was the polluted river itself. As we were leaving I noticed a large cardboard box on the floor. It was overflowing with amber bottles and plastic bags, urine test strips and foil blister packs, remnants of some of the drugs Calvin has ingested during the eight years since his epilepsy diagnosis. Michael means to continue photographing the junk, the awful paraphernalia strewn like pollution in the wake of repeated seizures and vicious side effects, of EEGs and blood draws, ambulance rides and emergency room visits, IVs and intubations.
And then I think about the plant—cannabis—growing in some warehouse all tall and beautiful, lush and green, drinking in all of our carbon dioxide and breathing out life-sustaining oxygen. This plant is there for the taking—for the tincturing—but certain folks ignorant of its uses and benefits are attempting to make it more difficult, perhaps even impossible, for children like Calvin to access in Maine. And, so, I’m frozen in this static winter of ice, paralyzed and fearful of giving Calvin a treatment that might be whisked away at any moment, rendering him with little to no chance of thriving from its benefit. Then I remember what I recently told another mother in a similar situation: that there is nothing to fear but fear itself. So I’ll move forward, pull on my ass-kickin' boots. Gonna go out and kick some major butt. There's a warming trend coming and I'm going to melt the frigid grip of ignorance, testify against the bill prohibiting kief, because without it there will likely be no medicine for my son. Anyone wish to join me?
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| photo from web |
It's so difficult to balance on that tightrope of patience and urgency, isn't there? It'll happen, though, Christy -- I have faith that it will --
ReplyDeletei just want to say "fuck it" and go ahead with the tincture and give it to calvin and see how it all plays out. i think there is a good chance we can alter the bill so that our kids can access kief. but then, what if we can't? then where are we????
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