movements

The sun is on my face, the wind feels and smells as if I were at the beach. The pines are whispering. Through them, I hear the lonely drone of a small airplane. Despite the twinge in my back and hip, plus a tinge of melancholia, it feels good to be moving.

This morning, Calvin was not his best self. His recent conscious-onset morning seizures have put me on edge. They are typically rare, and lately have seemed to come out of nowhere. I'm afraid to send him to school lest one happens on the bus, in the hallways or classroom. Despite seeing hundreds of them over the years, they're hard to take, and I can only imagine how they make him feel.

As I stroll down a sloping road, moving from one side of the black tarmac to the other while noting the big sky above me and amber fields spanning out from my flanks, I sink into my sadness and angst. I ponder their roots, which have taken ahold and perhaps manifested in my stiff, achy parts. I assume it's simply the weight of the world: the damn protracted pandemic restricting our movements and gatherings; the war waged against Ukraine and elsewhere on this small, precious planet; the terrorism and suffering of so many innocent beings; too many deceitful, badgering, insincere, criminal leaders.

Then, I think about Calvin's burdens: his inability to effectively communicate; his incontinence; his poor vision and coordination; his seizures; the drug side effects he suffers. He's confined to his own little messed-up world in which his movements are greatly hindered.

And yet, my poor boy can't sit still. He's on and off our lap almost in the same moment. He often paces without purpose. He sits at the table for mere minutes, taking a few bites of food before being compelled by something to get up and move. I know what possesses and troubles him: impending seizures and, perhaps mostly, epilepsy drugs and the lingering effects of their withdrawal.

One of Calvin's worst afflictions is a drug-induced movement disorder called akathisia, which, like most drug side effects, I have researched and diagnosed myself:

akathisia: akəˈTHiZHə, -ˈTHizēə | noun | A state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant drugs.

and:

A movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.]

For the longest time, I was convinced Calvin's restlessness was just from years of taking benzodiazepines. More recently, however, I think it could also be from one of his current antiepileptic drugs, Keppra, aka leviteracetam, which he's been taking for over ten years. I fear the (brain) damage from both drugs might be permanent.

I read the literature. It's all there, documented on multiple reputable websites (my go-to is rxlist.com): Keppra can cause drug-induced movement disorders. Calvin's akathisia manifests mostly in his restlessness and repetitive, aimless pacing, but I wonder if it's also displayed by his jaw-jutting, teeth-grinding, hyperventilating, knee-knocking, frantic fingers (pill rolling), and what I call crab-clawing. I believe the akathisia is why he likes riding in the car and spinning in his jumper so much; they allow him to move without expending much energy. 

Drug-induced akathesia is a miserable affliction which causes some sufferers to feel so achingly restless, frantic and panicky that they take their own lives in desperation. I can't begin to understand what a child like Calvin—who doesn't grasp abstractions such as the notions of tomorrow, life and death—must be thinking or feeling when he is most afflicted, which is pretty much whenever he's awake. I've seen him in states of panic, pain, serious discomfort, distress, malaise and misery, which are often impossible for me to alleviate (thankfully, though, extra doses of my homemade THCA cannabis oil seems to help.)

As I approach the final stretch of my walk, the sky is blue and painted with clouds. The sun is beating down. The wind is still sifting through my hair. The road is flat and smooth, and my bit of melancholia still lingers, though has lessened. I think about how amazing it would be if Calvin could walk these back roads with me without faltering or balking. Maybe the fresh air and quiet could somehow relieve some of his own troubles. Perhaps there's a chance one day my wish could come true. I'll keep embracing hope. Sometimes it's the only thing to hold onto.

Photo by Michael Kolster

paraphernalia

I sit motionless in a gray steel and vinyl chair before a grid of full-spectrum compact florescent lights, eyes closed, a double-sided dark cloth draped over my shoulders. For ten minutes, I hold this pose as Michael looks into the ground glass focusing the image of my face onto it, adjusting the camera’s fully extended bellows. He vanishes into his darkroom where he pours the emulsion onto the glass plate and dunks it into a silver bath before emerging and snapping it onto the back of the camera. He counts down, “four, three, two,” and on the count of one, I take a deep breath and hold it for the forty-second exposure. In my stillness, I realize how calm I feel—warm, silent—and I remark about it later, about how I rarely, if ever, relax like that and just ... do ... nothing.

My husband’s studio is packed to the brim with his photographic paraphernalia: chemicals, cameras, flasks, clamps, plastic trays, cloth and latex gloves. And then there are the photographs themselves: large black and white riverscapes; hand-tinted prints of old mill town structures; expansive cityscape triptychs, curled satiny silver-gelatin prints; an oversized cyan sky reflected in a muddled green river reminiscent of an oil painting; translucent glass-plate ambrotypes resting against a black velvet backdrop that magically reveals the rugged beauty of the images. To my delight, in nearly every section of the large space he has hung photographs of me.

Stacked on end leaning against the walls are huge framed photos wrapped in brown paper and masking tape. Some prints are pinned up, others hang framed on screws or nails. Gray file cabinets bulge with 4" x 6" glossy prints inside waxy paper sheaths. Countless boxes boasting thousands of photographs buttress towers of flimsy negative sleeves from recent and years past.

Michael is the most prolific artist I know, tirelessly laboring, inventing, creating, dreaming. His bodies of work are vast, deep and varied. His fearlessness of new territory, different methods, themes and subject matter reminds me of the innovation of Miles Davis or Beck—constantly evolving, experimenting—yet the familiar thread of genius throughout the work remains. He’ll blush at reading these words, dampen them down in his own modest way, but I know his work is gorgeous, provocative, impeccable and timeless.

A few nights after modeling, I return to his studio to see the day’s work. Scattered across the tabletop are countless orange bottles with childproof caps and printed white labels with Calvin’s name. In large bold letters, one reads MAY CAUSE DIZZINESS. Many are empty. Others still contain the sinister little capsules stamped in a tiny font: ZONEGRAN. We’ve saved most of the empty or discontinued drug canisters and their contents over the years for Michael to photograph. Along with the amber bottles are translucent ruby vessels with traces of syrupy liquid beading their insides, paper-backed foil blister packs—the kind that are oh-so satisfying to pop—bundles of striped urine test strips, and multiple dozens of crinkled and stained handwritten medication logs with rows of penned in Xs and administration times.

“Makes me sick to look at them,” I say to Michael, regarding the piles and piles of foil and plastic casings strewn on surfaces or spilling like guts from every possible nook and cranny in the large cluttered space. I imagine Calvin’s little body, his smooth belly and flawless skin, and think of all the wicked chemicals we’ve spooned into him over so many years. Frigging seizures, I think to myself. Effing drugs. And yet this paraphernalia proves so ironically beautiful to behold, like precious metal, little gems or handfuls of pearls. At the same time they remind me of the acrid metal of war, of steely prison bars, padded white cells, of the numb brain and bleak future of my precious, innocent little boy who, every morning and night, we woefully coax to open his mouth and choke down this string of endless, chalky, bitter pills.

originally published in 2012.

psychotic

The kid is often psychotic. Batshit crazy. Bonkers. Virtually impossible. The other night was a terrible one. Calvin woke before midnight and never went back to sleep again. He spent hours tossing and turning, head-banging, wall-slapping and making all sorts of other annoying and anxiety-provoking sounds. He got tangled in his bed pad and covers. He got cold from his wet, drooly thermal. He soaked two diapers. But he wasn't seizing. He didn't appear to be in great pain. And he didn't seem all together panicky—no racing heart or clammy hands. But still, he was amped up and likely feeling miserable.

His head-shaking, grousing, and head-rubbing made me wonder if he might be experiencing side effects from the new seizure medication, Xcopri. But when I researched the drug again, there is virtually no mention of psychiatric effects beyond a low incidence of irritability. So then, I wondered if his mania might be due to the extra cannabis I'd given him, but I quickly dismissed that, having not really seen that effect before. I wondered if he might have a headache (headaches hurt, but often aren't bad enough to make one cry) so I gave him acetaminophen and, later, ibuprofen. Lastly, I wondered about the Keppra, which is notorious for its behavioral side effects. I got a sick feeling in my stomach thinking about all the what ifs. What if things hadn't gone so wrong to begin with? What if Calvin had never developed epilepsy? What if he had never been given benzodiazepines? What if he had never taken any anti-seizure drugs? What if he had never been born? Our poor boy suffers so senselessly; there's no reason for it.

Keppra's list of behavioral and neurological side effects is long: aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability (mood swings), hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder, for starters. I often describe my son as "unreachable." Not infrequently, he has abrupt outbursts of laughing and shrieking. He can never sit still. To complicate matters further, like benzodiazepines, apparently Keppra's side effects can be caused by its use, its dose reduction or its discontinuation. Calvin has been on Keppra for years and, until more recently, on a very high dose. I say to myself, we're fucked, wondering—if he's lucky enough to come off of the drug—if the side effects will be permanent, meaning he'll never, ever be a calm and happy child who feels good. Can you imagine being that person or the parent of a child who feels like that? It's called hell on earth.

I think back to when Calvin was first prescribed Keppra. He was only two and had been newly diagnosed with epilepsy. I remember how amped up he was then, often hyperventilating as if extremely excited. Years later, after ten failed anti-seizure medications and dwindling options for a new one that might work (when the first drug fails to control seizures, the chance a subsequent one will work shrinks to less than five percent and decreases with each successive failed drug) we decided to try Keppra again (a friend's daughter had retried it, and the second time around it worked for her, albeit with the help of two others.) I try to recall if that is when Calvin's agitation and mania began, his mood swings and restlessness. I had always blamed the benzodiazepines. Maybe I've been blaming the wrong drugs all along. Or maybe (probably) they're all culprits. In any case, they've made my kid psychotic, and I fear he'll never be the same again, fear his brain has been forever changed, fear he will be plagued by this miserable restlessness in perpetuity.

Inside this two-and-a-half bedroom home on this small patch of land, there's so much suffering—seizures, sleep deprivation, headaches, anxiety, anger, resentment, tedium, frustration, despair, envy, fatigue, panic, psychosis. Still, I try to hold on to hope. Keep my head above water. Thankfully, I've become deft at that. Rather than sink, I watch from my writing desk as diaphanous clouds drift amid a cornflower blue sky. I see and hear the wind finger through the pines outside my window, see the tops of trees swaying in the breeze. I think of my good ole friends and the ones I've made more recently. I listen to orchestral music which often moves me to tears. I'm grateful for warmth, beauty, comfort, love, light, space, nourishment, seasons, family, friends, strangers, forgiveness and walks in the woods and on back roads. I'm even grateful for my sweet, adorable, affectionate, impossible psychotic child. After all, it's not his fault.

On one such day two years ago.

camped out

Yesterday, the tenth day since Calvin's last seizure, he had a grand mal at three-thirty in the morning. This morning at four-thirty, after I had just drifted off since having been wide awake (for whatever reason) from midnight on, he suffered another grand mal. And while a ten-day seizure-free stint isn't that remarkable, it's better than seven days, or four days, or consecutive ones, and/or larger clusters of his brain's electric storms.

I'm glad I went for a run this morning, because the wind is high and the rain has begun falling hard, making it as good a day as any to be camped out indoors. Maybe I'll build a fire, or put Calvin in bed and take a long hot shower, have an afternoon stovetop espresso, write a little. As for Calvin, he is pretty out of it, barely able to get on and off my lap and the couch. With his head covered by his baby blanket (he loves that) it's easy to mistake him for the piles of clean laundry which seem to have taken up residence there. In-between my lap and the couch, he naps on the rug, cross-legged and folded over, his head in his hands, forehead on the floor. It's a sorry sight and reminds me of what a zombie Depakote—one of his first few drugs—made him into when he was just a tot.

Last night, having sensed the second seizure coming, I doubled Calvin's minuscule Xcopri dose with the hope of dodging the bullet (thankfully, Calvin's neurologist and his team are quick to respond to my questions, concerns and requests for help regarding bad spates and new medications.) But a single night of an increase wasn't enough to stop the oncoming storm. I hope today's major lethargy is simply his body recovering from the grand mals rather than a side effect of the new drug. But fatigue is common with most if not all antiepileptic medications, and I've read it's especially true with Xcopri, even at relatively small doses in adults far bigger than Calvin. Sigh.

Tonight, we had planned on having a few covid-negative (rapid-tested) new colleagues of Michael's join us for some of his tasty slow-cooker lasagna, my go-to spinach salad, and the remainder of my chocolate-malt-marshmallow-cookie ice cream cake, but we decided we should cancel since Calvin isn't doing too well. So instead, we'll spend the rest of this dark day camped out on the couch listening to raindrops hitting the widows, cars swishing by through the puddles, and the tick-tock and gong of the wall clock. Around five, we'll get Calvin his meds and tuck him in, make dinner and eat it in front of a movie or fire, and retire early to bed, all the while hoping the storms in his brain will ebb. Otherwise, tomorrow we might find ourselves camped out again on the couch.

cross your fingers, knock on wood

yesterday, calvin cried. i cried hard, too. his furrowed brow and pouty mouth are enough to slay me. it was the first time in a long while for both of us. what was the source of his misery? was it yesterday's three seizures? the rectal valium's side effects? did he have a headache? was he nauseous or crampy? i wondered if there were more seizures coming despite my best efforts to stop them. i wish i knew. living with epilepsy is hell on earth—the only hades i believe exists. i'm certain there is no merciful deity. no god pondering whether or not to save my kid from his suffering and afflictions. as calvin's mother, it's obvious. nature is simply going about its business. but i'm not offended by its indifference. the offense is in dogma which insists calvin's suffering is part of some divine blueprint. that would be sadistic.

after years of various seizure treatments—trileptal, keppra, depakote, klonopin, lamictal, zonegran, ketogenic diet, neurontin, banzel, clobazam, cbd, epidiolex, a second try of keppra—we're left with few options. but with mounting seizures, we feel compelled to try another drug, lest his fits run amok more than they already do. he's had so many these past few weeks. and he hasn't seemed very happy for years. his smiles are fleeting. a lot of the time he doesn't really seem to enjoy himself or feel good. for years he has been suffering a handful of grand mal seizures every month, plus some focal ones. he misses too much school. instead, he camps out on my lap, in his bed or on the couch. it isn't much of a life for either of us.

so, after months of research and consideration, we're going to try a novel drug. its generic name is cenobamate, its brand name, xcopri. it hasn't been around for long, but it reportedly surpasses other drugs with regard to seizure freedom. of course, like all the other drugs, the side effects are scary. so, with an abundance of caution, i'm putting calvin on half the recommended starting dose; his neurologist—who knows i'm in charge—is with me. i'm both frightened and hopeful. so many drugs have failed my child and caused a number of miserable and enduring afflictions, worst of all his wicked restlessness, which is a barrier to most everything.

yesterday, when i began writing this, i set out to craft a more poetic post. one with gorgeous, lyrical imagery, the kind that helps me escape my grief and stress. the kind that can maybe take you away to somewhere else. a dreamy post, describing back road travels, with painterly landscapes, sky and water, and the lovely friends and strangers you and i might meet there. instead, i feel it's just another entry about our hardship, worry and despair. and so at least i'll leave you with this photograph of yesterday's sunrise on a field skirted by trees bright as wildfire. from afar, i saw a ghostly mist shrouding the lawn. i meant to capture it. but the nearer i got, the more it dissolved, until finally it was gone. i'm hoping that can happen with calvin's seizures. cross your fingers, knock on wood.

cocktails

When Michael is out of town, Matt leaves his wife and kids to come make me Manhattans and to keep me company. Lauren sometimes concocts pomegranate martinis while I sit at the bar in her kitchen. Dallas has been known to craft all sorts of delicious cocktails to imbibe at his place or mine. Kevin will mix me anything I want, but if memory serves, he makes a killer gin and tonic. Tim brews up the best and sneakily spirituous margarita I think I've ever downed; watch out! Luke loves to pour me a Maker's. Lucretia mixes elderberry with spirits. Jens and Barbara almost never show up without a bottle of bubbly in hand. Back before the damn pandemic, when I'd visit New York, I'd go to Petrarca, Ivano's family's amazing Italian restaurant in Tribeca, and he'd mix me up an Aperol spritz for curbside slurping. I used to belly up to the bar with a girlfriend or two and order beet yuzu martinis, rusty cowboys or Rita Hayworths, all garnet-colored drinks with a tart or spicy kick for any season, but especially good for sipping in winter. At home, my go-to is red wine, especially Gigondas and Côtes du Rhône. I enjoy a tiny glass, sometimes two, on most nights before switching to water. Once in a blue moon, I'll sip a shot of bourbon on the rocks, though not as often since my pal Woody died summer before last. During the holidays, Michael makes his family's bourbon eggnog; anyone who has knocked one back will tell you it's killer.

In short, and though I think of myself as a moderate drinker, I love a good cocktail. Perhaps since I don't drink them often, there's something special and festive about them that makes me giddy, even before I drink them! Sounds ridiculous, I know. But as Calvin's mother, I have to delight in the little things or I might wither and die on the proverbial vine.

But there are cocktails I loathe, and I don't mean the alcoholic kind. I'm talking about what neurologists and other physicians have coined drug cocktails. It's the piling-on of more than one drug at a time to treat a condition and/or treat the side effects of the drugs used to treat a condition, and to treat the side effects of those drugs, and so on. It's sickening, and I'm far from convinced it's necessary in many cases.

When Calvin was first diagnosed with epilepsy when he was two, the first few drugs he tried were as monotherapies, that is, one drug at a time. When each inevitably failed him, his neurologist would switch it out for a new one. It wasn't long, however, before the neurologist began practicing polytherapy on my little guinea pig. Calvin was barely three years old when he was prescribed three powerful drugs—Lamictal, Zonegran and Klonopin—in attempt to thwart his stubborn seizures. I questioned the addition of the third drug, a benzodiazepine, to be used as a bridge drug until the Lamictal, which must be slowly titrated to avoid serious, sometimes lethal rashes, reached a therapeutic level. I wondered why Zonegran wasn't a sufficient bridge drug since it was up and running at a therapeutic level (determined in clinical trials) from the beginning. The neurologist, who I'll call Dr. Rx, told me the Klonopin was meant to be used for only a few weeks. A few weeks turned into eighteen months, and in that time Calvin developed serious complications, including increased seizures, from the drug and its subsequent withdrawal. The use of the benzodiazepine—a class of drugs prescribed cavalierly for anxiety, insomnia and seizures, and meant only for short-term use (mere weeks because of their tendency for habituation and addiction)—felt like a cover-your-ass maneuver and a seizure-control-at-any-cost tactic. In any case, these drug combos, which are sometimes made up of as many as eight or nine antiepileptic drugs all at the same time, are commonly called cocktails. Sickening.

Thankfully, with some gumption, patience, research and gut instincts, I've been able to wean Calvin off of all but one pharmaceutical, Keppra. And with as many as five to eight grand mals most months, it's clear the Keppra isn't really working, which is why I've been slowly weaning it, too.

Suffice to say, the only cocktails we want in this house are the pretty ones made by loved ones from spirits which sometimes make me giddy.

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

strange, rare, amazing gazes

strange gazes. bad appetite. sour breath. restlessness. intensity. wanting to drop. choking on food. hot skin. agitation. euphoric mood. these are harbingers of calvin's seizures.

too soon. only five days since he suffered the last fit. still, i saw it coming. i gave him extra cannabis oil hoping to prevent it. maybe i waited too long; it failed to do the trick.

i kissed my restless kid. laid him back down in his bed. a rare and sadly suspicious smile crept across his face. minutes later, we heard his telltale shriek. i thought we had dodged it. i was wrong. he seized and choked. something inside his mouth bled. afterward, he had trouble catching his breath. it's always unsettling. something we dread. never gets any better.

i quickly brushed my teeth and undressed. crawled into his bed. with my palm against his chest, his heart felt as if it would burst right through his ribs. it remained pumping wildly for quite some time. caused me to fret. made me think we should start him on a new med.

finally, my little calvin drifted off to sleep. dim light seeped in from the next room. i peered over his shoulder to a portrait of him propped against the wall above his dresser. it was made when he was five or six. often, when i lay in bed with calvin in the wake of his morning seizures, i see it in the shadows, its cool blues, pinks and reds. it was done from a photo. gifted to us by a painter friend. it's masterful. full of life and color, vivaciousness. in it, my boy's eyes are bright. his smile is big and broad. his gaze, unusually fixed. he's looking right at me. it's clear he sees me. these are rare and amazing gazes. on the days when i don't see my son smile—which is most, lately—at least i can always rest my eyes on it.

over the years, calvin has lost his sense of cool. of calm. of happiness. we see glimpses, like when we tickle or kiss him. but those moments are far between and fleeting. i wonder what the drugs and seizures did to him and are doing. wonder if he is in constant discomfort or pain. wonder how his hormones factor into the equation. wonder how we can recapture his happiness again.

junior

This morning, I put my coulda-woulda-shoulda-high-school-senior, Calvin, (he's actually a junior because he repeated kindergarten) on the bus and got to work. I walked Smellie, did a load of laundry, folded some of it on the green couch for all passersby to see, transplanted a shrub, watered the entire thirsty garden, prettied up the withering day lilies, put clean dishes away, did my first legitimate grocery shopping (wearing my N95 mask) in a year and a half, read a bit of news, and wrote. A little more than halfway through the day, Calvin's teacher Paul, whom I adore, texted me to tell me that Calvin was doing well, and attached a photo of him walking down the stairs. No doubt The Kid is on the move.

On Facebook, oodles of friends sent me loving sentiments in response to expressing my angst about sending Calvin to school for such a long day after having spent most of his time chilling with me since the damn pandemic began. One person wrote, "he's gonna be FINE." I wish I could be so confident, but he had seven grand mals this month, and our boy has a habit of not being fine much of the time.

Because of Calvin's sheer number of grand mals, which have been ticking up for several years while his focal seizures have almost dissolved, I've been pondering adding a second pharmaceutical to his regimen. We've cut back pretty far on his Keppra to see if that makes a difference, though it's still too soon to tell. But when I read about all of the side effects of new and old drugs—some of them behavioral, others lethal—I get cold feet.

Epilepsy is a goddamn beast. There's no cure, and the drug side effects can debilitating and impossible to tolerate. Calvin's wordlessness complicates everything since we can never know what he is thinking or feeling. With at least one grand mal every week, a day or two of recovery, plus the drug side effects, I can't imagine he ever feels really good.

When it came time for the bus to show up, I sat in the dappled shade on the front porch with Smellie, my pink Chuck Taylors brightening me up. The bus was a bit late, allowing me to do what is exceedingly rare for me, which is NOTHING. When it finally arrived, seeing Calvin stand at the top of the stairs with his aide, Fern, keeping him safe, I was amazed at how much Calvin has grown since the spring.

The Kid gave me a hug, clawing my neck the way only Clawvin can do. While we stood in the driveway, our arms wrapped around each other, I tried hard not to imagine that—if things hadn't gone so wrong—he might be joining some of the seniors on the playing field, in the classroom, in the halls, and well on his way to college.

unthinkable

Tropical depression Henri didn't make landfall in Maine, but we had low barometric pressure and insane humidity anyway. It seems the full moon also helped tug Calvin's seizures into existence—he had one grand mal at nine p.m. on Sunday, and another at three the next morning.

Last night, after putting Calvin to bed, Michael and I ate barbecued salmon and sushi rice with spicy fish sauce while watching the last half of the film, Aliens. During one of many grisly scenes—at the very moment when an alien burst through the chest of its wide-eyed, terrified human host causing her to convulse—we heard our son shriek. It was his third grand mal in less than a day. We sprinted to his room where we found him tangled in his blanket, convulsing, his lips a dusky blue.

"I'm going to give him the Diastat," I told Michael, who expressed unease with my decision to employ the benzodiazepine because they can be so problematic.

But my brain and my gut said, do it!, so I grabbed the vial from the changing-table drawer, cracked off its plastic cap and squirted lube onto its tip. While Michael kept our boy safely on his side, I unsnapped the crotch of Calvin's onesie, ripped open and pulled aside his diaper, then carefully inserted the tip of the vial into his rectum, depressing its plunger slowly. My intent was not to stop the seizure which had already begun to subside, but to thwart a probable fourth, perhaps more devastating one, from occurring in the night.

The Diastat knocked Calvin out. Benzodiazepines like Diastat, aka rectal Valium, can cause respiratory suppression, and since SUDEP (Sudden Unexpected Death in Epilepsy) is thought to occur within twenty minutes after a grand mal, I wanted to monitor him for awhile. So I brought our unfinished meals and glasses of wine into Calvin's room, plus a chair for Michael. With my plate in my lap, I sat on top of the changing table where I could easily see Calvin's chest rise and fall. Holding vigil, we ate the rest of our dinner in the dim light of the small room grieving the impossibility of our child and his sorry lot in life.

As we munched our salads, Michael expressed regret about Calvin's unthinkable limbo: he can walk, but can't—or won't—walk well enough to stroll any distance down the street, in the woods, or at the beach, and yet he cannot sit still; he can see, but we can't know what or how well; he can manage finger foods, but cannot use a spoon; he can swallow, but sometimes chokes on food and drink; he is having some success sitting on the toilet, but he still has to wear diapers and can't poop without the use of suppositories; he cannot speak, so sometimes it's near impossible knowing what he might need, understand, feel, suffer or think; he's right there, but so often he's out of reach. In short, he's an unthinkable enigma.

Finishing our dinner, we discussed the paperwork we have to complete and submit to probate court in order to be granted guardianship of Calvin when he turns eighteen in February. Yes, even though we are his parents, we must apply to become his legal stewards since he can't make decisions for himself. One assurance we've been asked to give is that we will continue to provide Calvin with activities he enjoys. As if his suffering from seizures and/or drug side effects isn't regrettable enough, the list of things that give Calvin joy is extremely limited; he likes hugging, baths, music, car rides, swings, sweets, and a few baby toys. He doesn't have friends. He can't do sports. He doesn't know how to play with trucks or dolls or games or Legos. He can't run or ride a bike or play catch or swim in pools, lakes, rivers or seas. He doesn't watch movies or cartoons. He can't walk the dog. He can't write or read or camp or bake or fish or hike. He is capable of doing just enough to avoid being confined to a wheelchair or to a bed in a room, but he can't do most of the things that make most kids feel happy or truly free.

This enigmatic and beloved child of ours lives in a limbo alien to most, one he'll likely endure his entire life. Oh, how I wish him to be free of his unknowable, unthinkable miseries.

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.

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

worried sick

Yesterday morning at 4:30, after I'd been tossing and turning for over an hour, the dreaded seizure came. It had been just six days since the last one. In the early evening the night before I had seen its approach, Calvin's telltale agitation, his finger-knitting and eye-poking common harbingers. Sadly, there isn't much we can do but lie awake worried sick waiting for it to happen while fretting over all things big and small—the supreme court, neglected inboxes, this filthy house, the election, social justice.

Since Calvin was two, he has had thousands of seizures. During them, he has bitten his cheek till it bleeds. He has struggled to breathe and turned blue. He has fallen out of bed and gotten bruised. He has succumbed to all kinds of dizzying side effects from antiepileptic medications—headaches, nausea, dyskinesia, ataxia, agitation, confusion, panic, anorexia, malaise, withdrawal. At least four times this year Calvin has taken a fall, usually on days before a seizure as he cranes his neck to stare at the sun. Sometimes he topples straight backwards as if he were timber. At others, he tips and drops to the side like a stone. Despite the fact that we've got our hands on him, he somehow manages to slip out of our grasp. The few times that he has hit his head, he was thankfully on the lawn, which is somewhat forgiving. 

As I lay awake next to Calvin as he drifted back to sleep after the seizure, I thought about our litany of miseries—his hospitalizations, his injuries, his seizures, his close calls, the difficulties in caring for him. The only thing we don't have to worry about are his medical costs thanks to decent health insurance through Michael's job, plus supplementary state Medicaid just for Calvin.

The healthcare costs for a child like Calvin are astonishing and include bills for medications, examinations by his primary care provider, neurologist, endocrinologist, urologist, gastroenterologist, neuro-ophthalmologist, pulmonologist, orthopedic surgeon, and x-rays, sonograms, CT scans, MRIs, EEGs, sleep studies, splints, orthotics, glasses, eye surgeries, nuclear medicine tests, ambulance rides, emergency department visits, hospital admissions, intubations, IVs, blood work, insurance premiums, copays, deductibles, and in-home nursing when there's not a pandemic.

Back in 2008 near the start of the Great Recession, my husband's case for tenure at Bowdoin College was in doubt. We spent weeks worrying about what we'd do if he were released into the worst job market since the Depression in a field with scant opportunity. If Michael were ultimately denied tenure and unable to find a new job, we worried that healthcare insurance premiums and deductibles would be cost prohibitive, assuming we could even get insurance for Calvin considering his myriad preexisting conditions.

In the end, despite the uncertainties, Michael was awarded tenure. This meant we were not faced with the dire situation in which many Americans find themselves today having lost their jobs and, thus, their health insurance due to a recklessly managed and consequently rampant pandemic.

Over the years, I've read and heard stories from countless Americans who have gone bankrupt due to massive healthcare costs from everything from appendicitis to cancer. From its inception, the Affordable Care Act (ACA), aka Obamacare, which provides healthcare to over 20 million Americans and requires insurers to cover preexisting conditions, has been attacked by republicans. Prior to the ACA, insurance companies regularly denied health coverage to people like Calvin, or charged exorbitant premiums to do so. The Biden/Harris ticket aims to expand the ACA to include a Medicare option for anyone who wants it. In stark comparison, the current administration is actively fighting to destroy the ACA despite still not having a plan to replace it; the Supreme Court will hear oral arguments on the fate of the ACA one week after the November election.

Americans' healthcare—a necessity to life, liberty and the pursuit of happiness and essential for a safe, secure, healthy, and prosperous nation—hangs in the balance, leaving many of the most vulnerable Americans to lie awake at night worried sick and getting sicker. In the most prosperous nation in the world in which so many people like to claim that all lives matter, none of us should have to live that way.

Calvin in the hospital after a prolonged seizure, March 2006

where i roam (and don't)

As other kids head back to school, mine is staying home. During a pandemic, sending Calvin back into the classroom is too much of a risk for us. He can’t keep a mask on his face, can’t maintain a safe physical distance. Everything he touches—railings, tables, people’s hands and faces—become part of his microbiome. Because of his condition, if he gets the virus he likely won’t fare very well. If either Michael or I were to fall quite ill, it could prove disastrous for our family.

In mid March, we let the nurses go. Since then, we’ve been going it alone. Calvin has seen virtually no one but me and Michael the entire time. Regrettably, we no longer take him to the grocery store, one of a very few places he liked to go. I’ve been within mere feet of my son nearly twenty-four hours seven days a week since his last day of school six months ago. My only respite is my morning walk with Smellie. We traipse the fields and their surrounding wooded trails. It's the only place I roam alone.

Our days are mundane. Each begins with waking too early. Sleeping in is not a luxury we enjoy, even in a pandemic, because I have to give Calvin his time-sensitive, anti-seizure medicine. On most days, Michael helps me at least until mid morning and at night. The rest of the day I go it alone. I change Calvin's diaper, feed him, bathe him, clothe him, toilet him, wipe him, hug him, kiss him, fend him off, hold him close. We tread endless circles around the house and yard. I take him and Smellie for long car rides and sometimes, though not nearly enough, for strolls. In between, I listen to music or news. Lately, I hear stories of wildfires causing smoke and ocher skies, choking states in which were my beloved former homes. I read of Covid outbreaks, massive layoffs, healthcare nightmares, betrayals and lies leading to unnecessary deaths from the virus. Despair and fatigue set into my already weary eyes.

When six o'clock arrives and we put Calvin to bed, I can relax a little bit, have a glass of wine. Once a week, or so, we visit with another couple for a limited time at a safe distance outside; I get energized. At night, Michael and I hunker down with a good movie or to read, then hope to get a decent sleep. Too often, we're rattled by the sound of Calvin's seizure scream; he has them once or twice a week. Like the pandemic, they're unsettling. I dread them. I lose much-needed sleep.

Like last night, lying next to Calvin in the seizure's wake, in my mind I try to roam to faraway places. I go to where the haze in the air is mist. I visit familiar cities which are gleaming. I go to where vistas are myriad, waters are calm and azure, fields are vast and green. I go to where there's no pandemic and where Calvin doesn't seize. I dream of times when leaders are virtuous, and the future isn't bleak. 

unforgiving

It had been only three days since my son's last grand mal seizure. As Calvin convulsed, at first tangled in his covers, Michael and I caressed his arms and legs, kissed his face and told him that we love him. It was the first time in awhile that I cried after one of his seizures. Perhaps my tears were triggered by a state of physical and emotional exhaustion from months of taking care of a child who can do absolutely nothing by himself save play with his baby toys in a bed with side panels and a netted canopy. This pandemic has made everything about life harder. On top of that, Calvin's epilepsy has been unforgiving as ever.

When the seizure was over, Michael went downstairs to finish preparing dinner. I sat on a step stool next to Calvin's bed and kept vigil, watching and feeling my boy's chest rise and fall. In the dim room, as I mourned my son's condition, I wondered again how I'd keep it up, this caring for him as he grows into a young man. I don't really know the answer. In the quiet, I recalled how, earlier that day, I had seen little kids riding bikes with their friends, siblings and parents. Last week I'd seen a child half Calvin's age swimming in the brackish water off of Simpson's Point with his mother, the two of them chasing schools of hungry fish churning the water. I'd seen a little girl skipping down the street with her dog. I'd seen a young family buzzing around in a small community garden, perhaps picking raspberries, beans or tomatoes. My child has nothing to do with any of it. His body grows but most everything else about him stays the same. Though sixteen, he's still an infant-toddler. He still wears diapers, which in the hot, humid weather make him sweat. His go-to toys are still rattles and chewies. He still seizes. About the only things that are different are the soft, thin mustache that has appeared and is gradually darkening, and the thought that he is becoming permanently psychotic due to years of seizures and antiepileptic drugs.

As evening fell and the room around me darkened, my thoughts turned to the young man I just started writing to who is living the rest of his life on death row. Online, I've seen photos of the cramped, rusty, neglected cells in his so-called correctional facility. I wonder if he can ever see trees, stars, the moon, or hear wild things bark at night like I do. I wonder what he dreams about while I dream of things like my mom and dad, San Francisco, missing flights, breathing underwater, Calvin seizing. I wonder if this captive soul can remember what the world looks like outside the massive prison walls. Does he ever catch the scent of sweet clover? Hear the buzz of bees and the chirps of birds? Does he remember or see bodies of water slip under low bridges? Does he imagine gleeful children so unlike my son leap from their spans on these unforgiving days of summer?

mixed bag

The last month or so has been a mixed bag, much of it a bit of a disaster. At one point, midway through July, Calvin had had ten grand mal seizures in a rolling 31-day window. That's probably his worst stint (grand mal-wise) since being diagnosed with epilepsy when he was two years old. He ended the calendar month with seven grand mals, three focal seizures and one pain episode—night terrors? migraines? benzo withdrawal?—which we treated with ibuprofen, rectal THCA oil and, finally, nasal midazolam.

After the first bad stint of seizures, we decided to try reducing Calvin's Epidiolex, the plant-based pharmaceutical version of cannabidiol (CBD), which, over weeks, we had eventually increased to a dose of 90 mgs per day. Despite the fact that that dose is only half of the recommended starting dose for Calvin's weight, it seemed reasonable to reduce it for a few reasons: one, because high doses of artisanal CBD oils seemed to exacerbate his focal seizures; two, because his seizures had increased since starting it; and three, because his behavior has been so bad—lots of grousing and mania.

So, in the third week of July, we nearly halved his Epidiolex to 40 mgs per day, then a little over a week later reduced it again to just 20 mgs per day. Since then he's gone seven days without any seizures, which is no milestone, but it's better than having grand mals on three consecutive days.

In other news, Calvin is growing like a weed. The crown of his head reaches my nose, and my best guess is that he has easily topped eighty pounds. So, though he is still a shrimp for his age (though sixteen, he's the size of your average tween) he is getting bigger. And while growth is evidence of him thriving, he's getting harder to lift and handle.

Two days ago we started giving Calvin Milk of Magnesia to treat what we think is acid reflux which might be causing some of his manic outbursts. Thankfully, magnesium is known to be calming and it also treats constipation, so we were able to discontinue his Miralax, at least for now. Years ago, I remember reading that magnesium was being researched for its effect on seizures, so I am interested to see if it seems to help, though it might be hard to distinguish if any reduction in seizures is due to the recent decrease in Epidiolex or the initiation of Milk of Magnesia.

Thankfully, the past two days have been good ones. He's slept fairly well and been much calmer and happier despite the full moon. I'll leave you with photos taken yesterday, just up the river in Richmond, one of our favorite spots in Maine.

advice and intuition

She cried the cry I've cried so many times. Helpless, hopeless, sleep deprived. Racked by seeing her child repeatedly seize. Pummeled by too many drugs to manage and consider, enduring their countless impossible side effects. Exhausted by too many hospitals and doctors, days on end of spoon-feeding and changing wet and poopy diapers, all compounded by stresses of the coronavirus. I know the feeling, that sense of drowning. I picked up the phone and tried my best to throw her a life ring.

This mother had previously connected with me on a social media page about epilepsy. She was reaching out again for advice about Onfi, which was the second of two stubborn benzodiazepines (think Xanax, Valium) that Calvin was on for more than half his life. It took us four years to get him off it. Onfi had been prescribed to help Calvin wean from the first benzo, Klonopin, which he regrettably started taking when he was just three years old. His neurologist at the time, who I'll refer to as Dr. Rx, added Klonopin to Calvin's regimen as a bridge drug while we titrated another, Lamictal, to a therapeutic level. The move was totally unnecessary considering a second drug, Zonegran, had already been prescribed to serve that purpose. I felt it was a cover-your-ass maneuver. I questioned Dr. Rx's logic, asked why he prescribed Klonopin when benzodiazepines aren't meant for long-term use, but at the time I wasn't confident enough in my own research or assertive enough to press further. I was so green then. Everything was scary, new and confusing. And Calvin, even at three, was so tiny. But I should have known since I had questioned Dr. Rx's prescribing of the previous drug, Depakote, which risked causing liver damage especially in someone like Calvin; after six months, it appeared to be doing just that. When it came to the Klonopin, I was told Calvin would be on it for just a few weeks, but despite my repeated pressure to take him off of it, he remained on it for over a year, making it more difficult to take him off of it without experiencing a doubling of his seizures and the introduction of another benzodiazepine, aka Onfi.

During the course of my conversation with this mother, I tried to lessen some of her worry over having re-dosed the Onfi after her child had vomited. I hope I disabused her of any guilt or fear. I described how, years ago, neurologists never really knew how to council me in identical situations. Each neuro had a different suggestion for me, which were clearly best guesses, and in the end I always relied on my intuition. This mother and I talked through her situation. I told her what I knew about Onfi's long half-life. I asked her some questions about her son's behavior and seizure activity during the wean. Together, we strategized, deciding it might be best to skip his bedtime dose, then to give her child his morning dose a little early.

"Above all," I told her, "trust your gut," suggesting that if in the middle of the night things didn't seem right with her child, she shouldn't worry about giving him his next dose; she could get back on his regular schedule gradually. (In the end, our plan worked.)

I went to sleep remembering those awful moments of doubt, guilt, self-pity and angst, all exacerbated by days, months, years of too little sleep. I tried to recall what Calvin was like before his epilepsy diagnosis and before starting a battery of antiepileptic drugs—sometimes four at once. I imagined what he might be like if he'd never taken so many mind-altering medicines, especially at a crucial time of brain development. I drifted off wishing this mother strength, wishing her baby peace and healing, wishing epilepsy didn't exist.

A photo of Calvin just before his 2nd birthday, before he was taking any anti epileptic drugs.

trying epidiolex

Sunday morning, after a second restless night filled with what I believe were focal seizures, we gave Calvin his first dose of Epidiolex, a plant-based pharmaceutical version of the popular cannabis constituent, cannabidiol, aka CBD. We've had the bottle containing a minuscule amount of the drug, which is in oil form, for about a month, waiting for the moment when I felt right about giving it to Calvin.

I began reading about Epidiolex nearly five years ago when its clinical trials began. Because of social media and the network of parents—mostly mothers—of children afflicted with epilepsy, I knew about the drug trial before Calvin's neurologist did. There was an ongoing trial at Massachusetts General Hospital, but Calvin wasn't having enough seizures to qualify and participate.

Shortly after the drug was approved in June of 2018, I began following a Facebook Epidiolex group. My sense is that, not unlike other CBD oils, many patients seem to do better on lower doses of the drug and have fewer dose-related side effects such as diarrhea, agitation, insomnia and loss of appetite. I've also seen documentation showing that some doctors are having success starting their patients on a fraction of the recommended starting dose of five milligrams per kilogram of the patient's weight. On the whole, however, it's a mixed bag; some children have become seizure free on Epidiolex while others have seen their seizures exacerbated, albeit on higher doses of the drug, which is not unlike other pharmaceuticals.

Calvin's first experience with medical cannabis was in early 2014. I had been researching its use in treating seizures for about a year, after a lifetime total of ten antiepileptic drugs had failed him. The learning curve was steep; I knew of only two other parents treating their children's seizures with the herb. Both were using CBD. Paige Figi, whose daughter Charlotte died recently, was one of them. At the time, Maine did not have any high-CBD cannabis strains with which to make an oil. Connections on Facebook led me to a guy in Sacramento named Dave who was making a cannabis oil using one of its other non-psychoactive constituents, THCA (tetrahydrocannabinolic acid.) Blindly, I set out in search of a strain that might help reduce Calvin's seizures while not making him too wired or too sedated like the pharmaceuticals had done. I spoke with several local dispensaries and individual caregiver growers. I met some of them in my home. Eventually, I decided that a high-THCA hybrid—part indica (sedating) and part sativa (stimulating)—might be best. I was able to procure some flower from a local dispensary, and Dave from Sacramento held my hand through the process of making a THCA oil using his recipe, which employs a cold process meant to avoid altering the non-psychoactive THCA into psychoactive THC.

Prior to giving Calvin my homemade THCA oil in February of 2014, he had been having grand mals every week or two during the day, usually when he was in the bath. After reaching a therapeutic dose of the oil, Calvin had no daytime grand mals for five-hundred days. Since then, he has had only a handful or two of grand mals during the day, greatly reducing my anxiety and his risk of getting hurt. Calvin also began sleeping better and his behavior improved.

During Calvin's first four years on THCA we were also weaning him from the benzodiazepine, Onfi. As we slowly lowered the benzodiazepine, Calvin's seizures, not surprisingly, increased. Sometimes he had more than a dozen per month, including focal ones. We tried a homemade CBD oil followed by a branded one, but they only seemed to exacerbate his focal seizures. Finally, in June of 2018, we started him on Palmetto Harmony CBD, which uses a different extraction method than the other ones we had tried. On a daily dose of about 25 milligrams, Calvin went forty days without a grand mal. After the breakthrough seizure, however, we struggled to regain that same kind of seizure control, eventually increasing the Palmetto Harmony to 145 milligrams in that effort. Sadly, Calvin's focal seizures also increased. When we cut the dose in half he did far better, but was still having too many seizures. So, in anticipation of trying Epidiolex, we gave Calvin his last dose of Palmetto Harmony in February of this year.

Since then, we have had some luck managing Calvin's seizures with higher doses of my homemade THCA oil; he has had only two or three grand mals in each of these last couple of months. But a recent flare-up of focal seizures, which had virtually disappeared back in late November, compelled me to finally start Calvin on the Epidiolex.

Having observed over years that smaller doses of CBD seem to work better for Calvin and other children, I was able to get his neurologist's buy-in (not that I needed it) to start Calvin on a fraction of Epidiolex's recommended starting dose of five milligrams per kilogram. Instead, Calvin started on just over half a milligram per kilogram of his weight, for a total of twenty milligrams per day instead of 174 milligrams per day. Having seen firsthand how well Calvin did on Palmetto Harmony CBD at a similar dose gives me hope.

So far so good. Calvin has been in a decent mood and his sleep patterns have not really changed, but it is only day three, so cross your fingers and knock on wood.

Calvin coming out of a seizure, August 2014

good run

It was a good run while it lasted, until this morning at four-thirty. Calvin went twenty days without a grand mal seizure, nearly three times his recent average and one of his longest seizure-free stints in the past few years. If he can make it until Friday without having any more, he'll have had only two grand mals in a month's time on the heels of March in which he had only three. My best guess is that the recent increases in my homemade THCA oil are what's helping. I'm giving him about three mgs THCA per kilogram of his weight. The only other drug he is taking for his seizures is Keppra, which is at his lowest dose in a decade.

What might also be enabling his seizure freedom is the fact that, beyond being bored, he is relatively stress-free staying home from school with Michael and I as his only caregivers. We spend a lot of time snuggling, hugging, kissing and tickling him all day long. What else is there to do? Weather permitting, we walk in the garden where he touches his favorite rhododendrons, the prickly mugo pine and several Alberta spruce. He takes leisurely baths, and we go on long car rides while I reach back and feed him grapes and blueberries from the driver's seat. During this coronavirus lockdown, he isn't taxed at all.

The past month or more we've seen Calvin smile a whole lot, like when Michael reads him his favorite book and even when walking down the sidewalk on our way to visit Woody. Sadly, because of the pandemic, we can no longer go inside and pilfer Woody's chocolate jar.

With any luck Calvin will have another good run with lots of smiles and giggles. Cross your fingers. Knock on wood.