the state of things

When I reached him his skin was gray as flagstone, his sweet face twisted and ghoulish. He was in his bed on his back and seizing. It had been ten days since the last ones and, like the full moon to which his fits often seem tethered, I had anticipated its arrival. I felt it in his hot skin, heard it in his agitated grousing, saw it in his eye-poking, his heroic attempts at sun-staring and restlessness at bedtime.

As Michael and I sat down to the first of his famous home-cooked meals since having spent over two weeks in Paris, I predicted Calvin would have a seizure within the hour. I wish I could say that I was wrong.

After Calvin's grand mal, I crawled into bed with him, noting the earliness of the seizure. Three hours later, just before midnight, he had a repeat. This time I gave him extra THCA oil. I had a hard time sleeping with him. The bed is getting too small for the two of us to share. Nevertheless, I kept vigil, and at five o'clock he woke to a focal seizure, the kind I haven't seen him have since November. It was on the long side of things, and I wondered if it might turn into a third grand mal, so I slowly syringed in his morning THCA oil which seemed to break the spell.

Lying awake next to him, as usual I thought about the state of things in the world. I lamented the coronavirus and its subpar handling in this nation. I love, yet wondered about, the mild early spring we're having. I'm eager to know who is going to win the Democratic election, wishing the two old White guys would drop out and endorse Elizabeth Warren. I considered Calvin's aides at school who have the difficult task of taking care of someone so enigmatic. I wonder if they resent my efforts, advice and cautious criticism meant to make caring for him easier and safer for everyone.

My boy is home from school today. Not eating or drinking much of anything. Very quiet and mostly still. He's having too many grand mals of late—eight in January, seven in February, eight in the past thirty days or so. I asked his neurologist to finally prescribe Epidiolex, the plant-based pharmaceutical cannabidiol (CBD) oil. I told the doctor I would start Calvin on a tenth of the recommended starting dose, i.e. 0.5 mgs/kg instead of 5 mgs/kg of his weight. With CBD, I believe less is sometimes better. Insurance has approved it. We should be getting it this week. I'm hoping it works because I've pretty much run out of reasonably-promising back-pocket options for Calvin's therapy.

As I write, I go back to thinking about the troubles this world is facing: climate change, viruses, stock-market plunges, hunger, hoarding, reckless presidents, gross inequity, trolls, bots, election meddling. But then I remember the photographs of Paris parks Michael brought back to show me. I go to his website and look at more. I dive into them readily, forgetting the regrettable and inevitable, clinging to hope, hoping for change. Then I remember, spring is coming.

St Cloud, 2017 Photo by Michael Kolster

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