weather report

Written yesterday, in the hours before Calvin suffered a grand mal:

Thanks to his Covid vaccinations, Monday was Calvin's first day back in school after more than a year. It was a good day for both of us. Calvin kept his mask on well enough to roam the high school's hallways with his aides. I spent the morning working in the sunny garden accomplishing most of what I had set out to do—which was a lot—on my first half day without my kid in tow. When Calvin got home at noon, we strolled around a bit before he led me to the car and patted its door, seemingly indicating that he wanted to go for a ride.

We visited our usual haunts—Pennellville, Simpson's Point, Rossmore, Wolfe's Neck, Mere Point, Bunganuc, Macquoit. Along the way, I stopped several times by the side of the road. I spotted a red fox, the sun in her eyes, squinting at us from a grassy slope. We greeted a couple of muddy clam diggers just after their back-breaking harvest. I chatted with two wildly friendly, hip, young, pierced, tattooed lawn care workers, and found myself wishing I could call them friends. I watched a woman unload perennials from the back of her car. We got caught in a fleeting squall.

This time of year is especially beautiful in Maine. The temperatures are mild and the air is dry. The trees haven't reached full foliage, so their branching is still apparent, unlike in summer when masses of green leaves limit one's sightline. The delicate yellows, greens, reds and ocher buds of spring trees are a softer, subtler version of autumn and are, in my opinion, more gorgeous, especially when sunlight illuminates their canopies after a rain.

Today, Calvin had an okay day at school, but something's bothering him. He's a bit unhinged, plagued by manic outbursts and eerie silent spells. A perfect storm is brewing what with the new moon's gravity, the low barometric pressure, and the fact that nine days have passed since his last seizure, which is a bit longer than of late. In other words, he's due. Hopefully, though, last week's increase in his bedtime dose of CBD oil will allow for longer stints between fits. In the past thirty days he has had "only" four grand mals, which is better than the six-plus grand mals which have been occurring in any given recent month, so maybe it is helping. Hope springs eternal.

Despite Calvin's outbursts, our drive was mostly relaxing and allowed me time to reflect and come to some realizations: having Calvin back in school isn't nearly as angst-provoking as I feared; car rides are nice any time of day, despite that I already miss seeing a few of my favorite, familiar, back-roads regulars; though sometimes windy and cool, late spring is an amazing time to be in Maine; getting vaccinated is an uber-liberating chance at life back in the real world; the CBD oil appears at a glance to be helping to quell some of Calvin's seizures. After nearly twenty years, Maine is growing on me by degrees.

little bits of good news

calvin received his second pfizer vaccine with michael, and will achieve peak immunity by tomorrow. i'll be good to go by saturday. calvin and michael had minimal side effects after their second shots. besides a sore arm, i had none whatsoever.

calvin's former ed-tech and bff, mary—who is also fully vaccinated and is the first person to step beyond the entry to our kitchen in over a year—took care of him monday for a few hours so i could finally get into the garden to rake and prune and weed and feed emerging peonies. calvin and i were extremely happy to see her and give her hugs.

as i had hoped, since restarting 20-milligram evening doses of harmony cbd cannabis oil three weeks ago, all three of calvin's seizures have been one-offs (one every seven days); prior to that, his grand mals were, for months, coming in clusters of two or more in as many days, and often within hours of each other.

calvin is calmer, steadier, and has been sleeping better since re-adding the cbd to his regimen.

his focal seizures have all but disappeared, and he hasn't had any pain/panic episodes—which are likely caused by latent benzodiazepine withdrawal—since early december; with time they're getting fewer and farther between.

the kid has been doing pretty well at practicing wearing a mask. our goal is for him to be compliant enough to ride the bus to school and without having to be confined to a classroom by himself (with an aide.)

Calvin hugging his buddy, Mary.

giving it another go (cbd oil)

calvin went six days between grand mals. not nearly long enough. maybe it's the infection. maybe it's the antibiotic. maybe it's just the fucking epilepsy; (sorry for the expletive, ma, but seriously.) six to eight grand mals per month is too damn many. years ago he'd have just one a month. back when he was little. back when he was on high doses of three mind-altering antiepieptic drugs. back when we had to peel him off the ceiling. back when he couldn't sleep. nearly stopped eating. couldn't walk without falling. had to wear a safety harness. back when the drugs impaired his already lagging progress and caused eternal restlessness:

akathisia: [pronounced: [ak-ah-thĭ´zhah] noun | 1. a state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant [and antiepileptic] drugs [and/or their withdrawal, especially benzodiazepines.] 2. a movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.] people with akathisia experience inner restlessness which causes them to fidget, rock, pace and panic [and sometimes end their life as a result.]​

the seizures keep coming in clusters over two or more consecutive days. he almost never seems to suffer isolated ones. it's why his monthly numbers are so high. last night we went back to trying harmony cbd cannabis oil. on calvin's first go three years ago, he went forty days with no grand mals. sadly, he never regained the same control. so we suspended it. but since the pharmaceuticals have so many wicked side effects, we're giving cbd another go. he hasn't had a second seizure since yesterday morning; perhaps that's promising. too soon to know. crossing fingers. knocking on wood.

Back when, photo by Michael Kolster

double whammy

Wednesday night Calvin suffered another double whammy: a grand mal at 7:30, then another one at 1:45 a.m. I had meant to get up at midnight to give him an extra dose of THCA oil hoping to avoid the second seizure, but since Calvin slept soundly in the wake of the first one, forever sleep deprived I snoozed right through.

In eight days Calvin suffered eight seizures (four grand mal and four focal ones.) It's not a good spate, and he remains lethargic with little appetite. I can see he's losing weight. As I laid next to him yesterday morning for hours, my mind raced over so many vexing thoughts and unanswered questions:

is this the anemia? is he oxygen deprived at night? is the calcium in the yogurt i give him at bedtime blocking the absorption of his antiepileptic medications? is the iron supplement triggering his seizures or causing some other stressor? should we try the palmetto harmony cbd oil again? it worked so well for a time. should we consider another antiepileptic pharmaceutical? would the drug treatment be worse than the seizures, like it has been in the past? would he succumb to their dangerous and troublesome side effects, some of them lethal? will we ever get our relatively lively boy back again? is he somehow slowly dying?

I imagine that last question might come as a shock to some of you. But this is how we—the mothers and fathers of children with epilepsy and other chronic and acute conditions—think. I remember a time when Calvin, because of a high dose of a powerful antiepileptic, didn't smile for a year. I feared I would never see his cute, dimpled grin again. I remember a time when I cried every day with a child who had become a raging little monster. I remember a time when Calvin was two when Michael and I sat next to his hospital bed preparing for his death during a forty-five minute seizure that wasn't responding to emergency medication.

Today, again, I lay with Calvin on the green couch as he catnaps. We have walked outside only about once in over a week. Thankfully, from our cozy spot in the corner of the house we can see the garden and all the lovely trees in their yellow, chartreuse and orange glory. An unknown donor dropped off some soup and cake yesterday. It's raining and the rhododendrons are super happy. The house is quiet. I'm optimistic about a sea change come the election. I have hope for the future, despite these double whammies.

a familiar hangout