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The Literal Beating Heart

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I’m leaning over Sophie as she shakes in her bed. It’s about 3:00 in the morning. I’m loathe to turn on the light, but I do, and I lean over her and say the same words that I’ve said, over and over and over, for the last twenty-one years. It’s okay. It’s okay. It’s okay. When the seizure is over, I lift her gently over one arm where she slumps against me, and with the other arm plump the pillows and then lay her back down. I pull the blankets over her and then turn, sitting on the bed facing away. I am at once terribly present and necessarily dissociated. It never gets easier.


Sophie appears, right now, to be saturated with cannabis. When this happens, we stop giving it to her for a few days, fiddle with the dosage, sometimes change the strain and then re-start, hoping again for seizure control. It works, generally, and the rough time passes, she sleeps through the night, goes one week, even two, seizure-free, and then might have a bad day or two but recovers quickly. In the middle of the night, it’s difficult to remember these things. I have a tendency to get dramatic, have existential thoughts,  Sartre’s la nausee. I am resilient, but I have my limits.


When the sun rises, I will start calling my comrades or private messaging them on Facebook. I’ll make the rounds of the groups that discuss the vagaries of cannabis medicine and seizure control. I will wonder whether it’s time to try THCa again or increase the dosage of THC. I will text an expert mother in San Diego, and she will text back. I know a mom who’s been using THC-only now, and it’s working. Another will tell me that a strain has stopped the seizures of her adult daughter for a month. I will consult with the cannabis doctor, and she will remind me that Sophie did better on a smaller amount of CBD. We will reduce the dosage as our next plan.


I remind myself that we are pioneers, here. Politicians might be duking it out, state by state, begged and cajoled by lobbyists and advocates, and the stoners stand in front of the White House with phallic doobies, blowing smoke at the President to de-schedule marijuana. Fat cats of all persuasions sit in offices counting up the money, and state coffers bulge in anticipation of dollars. You can almost hear the sound of the pharmaceutical companies, racehorses snorting behind gates, waiting for the shotgun start. The industry is exploding, I either read or am told by someone or another, nearly every day. A few generations of men of color languish in jail for marijuana drug infractions. The irony is not lost on me. I pay an exorbitant amount of money for a dark brown bottle of green-tinted oil that I shake vigorously, draw up in a syringe and shoot into my daughter’s mouth, only because I live in California. I can’t afford the oil, but I’ll figure it out. I, and perhaps thousands of other mothers and fathers, are sitting on the sides of our daughters’ and sons’ beds, trying to figure it all out. I’m not sure everyone knows that we are the heart of the movement, the literal beating heart, that we are resilient, but that we have our limits.

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