I have another story from Sophie’s recent hospital stay to tell you that I’ve been saving up because it’s just so good. It takes place on about the fourth day of her 44 day stay in the ICU at UCLA in early March. She was admitted to the hospital for aspiration pneumonia, intubated, and we were hoping for the best. You can read all about that in earlier posts, if you’d like — or not. What I haven’t told you is that prior to her admittance, Sophie had been pretty much seizure free for about seven weeks. This seizure freedom was attributed to raising her CBDv — a cannabinoid we added to her cocktail about a year ago. She has done really well on it, and when her seizures started to pick up our beloved and trusted Dr. Bonni Goldstein advised raising the CBDv, and that did the trick. Why did I not write about this before? I guess I didn’t want to jinx it, an instinct I figure comes from my Italian peasant ancestry — too much good shouldn’t be shouted about, look behind you because something bad is going to happen! Regardless, Sophie was fighting for her life in the hospital, but she was still relatively seizure free and we were unable to give her the cannabis medicine on the first day or the second which didn’t bother me too much but around the third or fourth day, she had a big seizure and everyone in the ICU freaked out and wanted to give her Ativan immediately. I had a whole group of doctors huddled in the room — a neurologist, a charge nurse, a resident, the dude in charge of the whole ICU, a pharmacist etc. etc. — and they were all insistent that there was no way we could give her the cannabis because it was illegal — a Schedule 1 drug with no medicinal benefit and federal law and yadda yadda yadda. I said what’s the plan then because if you deprive her of her seizure medicine, we will have a shitshow.. The plan, of course, was continued sedation with Ativan or whatever other nightmare drug is given to seizing people these days, so I said no you won’t and I will sue UCLA if you do not let us give her her medicine that keeps her seizure free and maybe my voice was raised but I was about as stressed and angry as I’d ever been in my life yet exquisitely aware, as per usual, of the absurdity of the situation. When I recall it now, I think of big eyes and the pony-tailed, tattooed pharmacist and the bullshit, Sophie lying in her $22,000 a night bed fighting for her life. I think of the bags of Fentanyl and Propofol that were hanging on IV stands in the room. Dr. Goldstein was talking in my ear, reminding me of Ryan’s Law* which I eventually evoked along with the threat of a lawsuit and the group scurried out and about ten minutes later one intrepid nurse brought in some papers for me to sign allowing me to give Sophie her cannabis medicine. She also brought in a small plastic box with a combination lock on it (pictured above). It looked like something you’d pick up at Rite-Aid for storing your nail polish and make-up. She gave me a tiny envelope made of brown plastic that looked like it’d been cut from a garbage bag. Inside was a strip of paper with some numbers on it. Here’s the place where you will secure your cannabis medicine, she said. In this envelope is the combination for the lock — AND ONLY YOU CAN SEE IT AND KNOW IT! She was solemn. Other instructions included how we would administer it ourselves, letting the nurse on shift know so that she could watch us. No one was to help us or administer the medicine.
I often compare my and Sophie’s lives in the great United States Medical Industrial Complex to a big and extended Monty Python skit, and I didn’t know whether to laugh or cry so I stuck a straw in the Fentanyl bag and took a quick sip before stashing the lockbox in a safe spot in the room and hiding that combination from all the potential cannabis addicts in the hospital.
Sophie quit having seizures for the most part for the rest of her stay. You know the rest.
On September 28, 2021, Gov. Gavin Newsom signed SB 311, “Ryan’s Law”, to allow terminally ill patients who have been authorized to use cannabis under California’s Compassionate Use Act to use their own medical cannabis in a health care facility.
You can’t make this shit up. 💕
The best part is how threatening a lawsuit is the only way to get anything done. As an aside, isn't Epidiolex essentially CBD and now FDA approved?