The Literal Beating Heart

10

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.

About Author

Elizabeth is a writer living in Los Angeles with her three children. Her work has been published in numerous literary anthologies and journals as well as The Los Angeles Times, and Spirituality and Health Magazine. She received a prestigious writing residency at Hedgebrook on Whidbey Island and is currently working on a memoir about the challenges and joys of raising a child with significant disabilities. She is intimately and passionately acquainted with medical cannabis as it dramatically reduced her daughter's previously uncontrolled seizures. She blogs daily at www.elizabethaquino.blogspot.com. In her vast amounts of free time, she also wrangles two teenaged boys and attends a bewildering number of sports practices and games.

10 Comments

  1. Allison Ray Benavides on

    Our work as mother/healer is beyond sacred and the profane culture emerging around us isn’t necessarily reassuring, to say the least. I love you for sharing what is raw and true and real. We need each other in this mess.

  2. Angella Lister on

    This is brilliantly writ and felt. You are lighting the path that generations after you will follow, and they will have no idea how bruising your journey was at times, but I hope they will know to be grateful.

  3. Heartbreaking and wonderfully written, Elizabeth. For twenty one years you go on, as go on you must, but oh the toll on you and your family and most especially on Sophie. You are indeed pioneers and your beating hearts will resound for generations to come.

  4. Last night I watched the trailer to a documentary presented at a film festival in Berlin (Mother of the Unborn by Nadine Salib) and this sentence from it has reverberated after I read your post: “When a woman has someone to call her “Mamma”, she feels that this world contains the whole world.”

  5. You don’t grow accustomed to seizures. It doesn’t get any easier. Every one comes with some amount of terror of all the others before it. Entire families are carpet bombed with hypervigilance, detachment, and set nose-to-nose with their worst nightmares. Epilepsy is traumatic.

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