breathless again

As my mother once told me she used to do, this morning I tried to drown my sorrows in the shower. Though my eyes stung and my throat began to feel swollen, only a few tears fell. I so wanted and needed to do some serious weeping—about my son's afflictions, the suffering of Ukrainian civilians being bombed by Russian troops, the miseries of this damn pandemic—but instead, all my body had to offer was a halting breathlessness under the stream of hot water.

A couple of hours earlier, not long after waking for the day, Calvin had a rare, conscious-onset grand mal seizure in his jonnny-jump-up. Michael had just stepped out for his early-morning run, so when Calvin began to seize, I ran to the door and yelled Michael's name into the sleepy street, hoping he was still within earshot. Moments later—knowing well what my calling-out meant—he rushed back in through the door.

Unable to pry Calvin's convulsing, vice-like body from the jumper, we managed to get him onto his side—which limits the risk of aspiration—by supporting Calvin's upper body on Michael's chest and his hips and legs on my lap as I sat in a chair pulled under his jumper. Once the seizure was over, we were able to slip Calvin out of the jumper and onto the floor where I placed a folded blanket underneath his head. After a few minutes of our son's own halting breathlessness, together Michael and I hoisted Calvin onto the green couch where he laid in a daze.

Regrettably, it has been only two days since our son's last grand mal. I had just been thinking about how extra homemade THCA cannabis oil often seems to prevent Calvin's seizures from clustering if given in the hours and days after each initial seizure. I wish I had given him extra cannabis oil yesterday afternoon and last night with the hope of preventing this morning's fit, especially considering the advancing full moon which also seems to tug his seizures into existence.

Thankfully, Calvin's conscious-onset grand mals have become a rare occurrence since I began giving him my homemade cannabis oil eight years ago. He used to have them regularly, and frequently in the bathtub. They virtually disappeared with the advent of the cannabis oil, which relegated his grand mals to the middle of the night when he's asleep and secure in his safety bed. Unfortunately, his daytime grand mals began to reappear in the last several years, albeit with little frequency; they still account for just a small handful of the sixty to seventy grand mals Calvin suffers in any given year.

So today, once again, I'm stuck indoors with an unwell kid who is going between resting on the green couch to fidgeting and walking in aimless circles; I doubt he's out of the woods yet. Thankfully, I was able to get outside for a short stroll with Smellie as the sun was rising over the pines that skirt the fields. Thankfully, I got to take a shower before Michael left. Thankfully, I was able to breathe peacefully as the morning sunshine lightly gilt the room (instead of hiding in a bunker without food or water, breathless, while being shelled by the enemy.)

And, like a gift, just as I was wrapping this up while Calvin rested next to me, I got an email from a friend and former Bowdoin College student, Marina Henke, who did graduate work in radio and podcast documentary studies at the Salt Institute last fall. She attached a link to the profile piece she did on me, which I'm now able to share widely. I invite you to have a listen; it's beautiful and telling, and only seven minutes. Hearing it again unleashed all sorts of feelings in me, as well as some much-needed, hard and cathartic weeping.

Calvin recovering on the couch after this morning's grand mal.

absences

As I walk the dog at the fields in late afternoon the sun descends, casting its long, early-autumn shadows. Bathed in the golden light, I get a mix of feelings both sublime and glum. I'm reminded of my splendid childhood summers, but also of times my mother rang the dinner bell calling me away from playing with my friends. I knew the fun part of my day had come to an end. It didn't matter that I'd wake up to another one. I didn't think of it. Just hung my head mourning the absence of my friends. Dragged my feet over the gravely road, heading home alone.

Leaving the fields, a boy jogs across my path. He must be twelve or thirteen. He's a little taller than Calvin and nearly as thin. That's where their commonalities stop. The boy is on his own. He is nimble. He can run. He's a fast athlete and, even at that age, serious and focused on his endeavor. Seeing him gives me pause, and I find myself thinking again about Calvin and our sorry situation with him—what if things hadn't gone so wrong?

I watch the boy run down the path and disappear around the bend. In the distance, a bunch of college students plays soccer, their fit bodies able to do exactly what their brains tell them to do. Their laughter is bittersweet to my ears. Hearing it makes my heart soar and sink, my eyes sting and blink, my mouth tighten into a smile then slacken into something more somber.

My precious boy doesn't have a single friend. He has no concept of play or sport, camaraderie or competition. He can't do those things. Doesn't have language. Navigates his world as if he were blind. Isn't very adept at walking. Has poor coordination. Virtually zero fine-motor skills. He's at the mercy of a brain anomaly, unforgiving seizures and drug side effects. I quietly lament: there's so little joy in life for him.

As I stroll home, the sun at my back and the afterimage of the running boy blazing in my brain, I feel lonesome. The wide street that runs in front of my house is desolate. There are no neighbors tending their gardens. No cars or skaters or bikers sailing by. No parents pushing strollers. No flocks of happy students crossing the road. Loneliness is not an emotion I feel often; I like my own company, like being alone. What I feel is the distinct absence of a child beside me. The loss is palpable. I sense the emptiness in it—the absence of conversation, of exchanging ideas, sharing hopes, hearing dreams, of feeling the sheer joy of walking, running, talking, biking alongside one's child. The hollow pit in my gut deepens as if weighted by a stone. The grief and loss constantly and for years gnawing at it. Thankfully, the burden has softened over time, not to the point of being in any way comfortable or easy, just slightly less dark, sharp and heavy. Less likely to literally bring me to my knees.

I've been rereading my blog posts from nine years ago. Back then, Calvin went seventy-eight days without any seizures. Regrettably, his behavior was unbearable—relentless and terrible side effects from taking high doses of three powerful anticonvulsant drugs. It wasn't a fair or sensible trade-off, so we began weaning the drugs one by one. It took us a number of painful years to get him from three down to one. Since then, however, nothing we've tried—five different kinds and repeated tries of CBD cannabis oil, Epidiolex, probiotics, increasing his Keppra, reducing his Keppra—has helped him regain any kind of seizure freedom longer than a few weeks. Lately, he goes mere days between seizures. I'm still fiddling with his dose of homemade THCA cannabis oil hoping to find a sweet spot.

I think about the boy athlete again, the young runner so sure, quick and lithe. I like to believe Calvin would be like him if things hadn't gone so wrong. And, so, I'm mourning the absence of a healthy, able child. But last night, when Calvin wasn't doing so well, I crawled into bed next to him. He reached for me, wrapped his skinny arms around my neck, curled his knees up to his little bird chest and pulled my head to his. With his eyes closed, he relished my kisses on his eyes, nose, cheeks and chin. Then, like he does sometimes, he made the sweet and soft hum I love so much—uh-uh. In my mind, it sounds a bit like Mama, which long ago he said just once. And for a fleeting moment, that empty sense of absence was filled right up.

Photo by Michael Kolster

wicked mix

The call came in at 7:33 p.m., just as we were wrapping up dinner. Mary's voice was quavering on the other end of the line. I knew Calvin had had a seizure in her care. I felt sorry for all of us.

Michael had already paid the bill, so we and a friend were able to exit our picnic table and jet the nine miles back home. It had only been four days since Calvin's last grand mal, which was just four days after the previous one, which was only six days after having had three in thirty hours. In all, he's had nine grand mals in a month's time. That's nine too many, even among thousands of them in his seventeen years.

I'm not sure what is going on. Perhaps Calvin's epilepsy is progressing, having never been snuffed out. Maybe he has outgrown his Keppra dose or maybe it is making things worse. What if the THCA cannabis oil I've been making for nearly eight years just isn't hacking it anymore? Epilepsy is wretched. It's a moving target. Options are few and unattractive. Having mostly forsaken pharmaceuticals since so many have failed him, it seems they may be the only thing left to try—again.

One of the drugs we are considering is called Fycompa. It is one of the few antiepileptic drugs specifically listed for treating tonic-clonic (grand mal) seizures. Like all other anti-seizure drugs, its side effects are wicked; the list is long, and some of them can be dangerous, even lethal. Moreover, since Calvin can't speak, it's nearly impossible to tell if he suffers many of these:

headache, dizziness, drowsiness, anxiety, lethargy, irritability, nausea, vomiting, stomach pain, bruising, weight gain, loss of coordination, hives, difficulty breathing, swelling of your face, lips, tongue, or throat, skin rash, fever, swollen glands, muscle aches, severe weakness, unusual bruising, jaundice, mood or behavior changes, fear, panic attacks, trouble sleeping, agitation, hostility, aggression, restlessness, hyperactivity (mentally or physically), thoughts about suicide, severe dizziness, vertigo, lightheadedness, trouble walking, loss of balance or coordination, feeling very weak or tired, accidental falls, memory problems, confusion, hallucinations. 

No one would want to put their child on these kinds of drugs, but the alternative could be just as ugly. Calvin has tried nine antiepileptic pharmaceuticals—at one point taking a high-dose, three-drug "cocktail" (I hate the use of that descriptor)—starting when he was just a toddler. None of them worked to stop his seizures, and yet he has suffered both short-term and prolonged side effects. I have little doubt the drugs—especially the benzodiazepines—ruined his developing brain, causing permanent problems beyond the neurological anomalies present even before his birth.

So, before we reconsider another pharmaceutical drug, I think I should try reducing his Keppra. That may seem counterintuitive, but most antiepileptic drugs have the potential of exacerbating seizures, and it's probably not that risky since he is having so many seizures anyway.

If I sound exhausted, even peeved, it's because I am. At the moment, I'm not up, but I'm not down, either. I'm just in a kind of daze of feeling hopeless and lost. That's what having a child with epilepsy does to a parent.

But for now, Calvin is content hanging out with his us while recovering from yesterday's seizure. Later, a friend is coming over to shoot the shit around the fire pit with us. We'll tell funny stories and jokes, and I'll laugh until I cry in a wicked mix of emotions knowing that, despite our troubles, somehow we'll get by.

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.