anecdote

In the world of cannabis as treatment for epilepsy and other disorders, the word anecdote is often tossed around, uttered by cautious, skeptical or ignorant physicians. When pressed, they repeat the vapid stance that there are no randomized double-blind, placebo-controlled studies proving cannabis' safety and efficacy nor studies of its interaction with other drugs. They also question cannabis' psychoactive constituent, THC, which is found in trace amounts in the non-psychoactive CBD and THCA cannabis oils. What they fail to consider is that all pharmaceutical antiepileptic drugs have mind- and body-altering effects—slowing of the brain, behavioral disturbances, emotional disturbances, sleep disturbances, bodily disturbances—some of which can be dangerous if not fatal. They also fail to observe that not all pharma drugs are tested on each other for interactions.

Since introducing Palmetto Harmony a little over a month ago—a CBD cannabis oil, which some parents have advised calling botanical or hemp oil—Calvin has had fewer grand mals. This month, he has had only three compared with last quarter's monthly average of six or seven. Since increasing it to its current dose—one nightly milliliter equalling 20 mgs of CBD or about 0.3 mgs per pound of his weight—he has not had any grand mals in twenty-two days, which is three times longer than his recent average between grand mal seizures. And in that time we have observed only two very mild, brief partial complex seizures.

Calvin's anecdote: a major reduction in overall seizure activity in the wake of a four-year-long benzodiazepine withdrawal.

Had I not been in the habit of taking copious notes all these years—scrawling on my calendar and in my journal with black Sharpie, orange, blue and yellow highlighter—I might not believe it myself. Calvin is two days away from a near-all-time record low of monthly grand mals (one) and just over a week from what could be a thirty-day stint with zero grand mals. To call this positive result an anecdote is akin to calling it fake news. Fake news it is not; and cannabis oil—contrary to what Jeff Sessions, the Feds, and the Prison Industrial Complex will have you think—is not the enemy of the people.

empathy

The sky opened up at one a.m. I rose from a deep dream to shut windows in the house so the rain wouldn't come in. As I was lowering one sash, I heard the quick slap-slap of a runner's gait on wet pavement. Peering out, I saw a guy run past under the streetlight. I recognized him. A youngish man compared to me, I'd met him in town years back. We had exchanged pleasantries. Later, I had greeted him several times as he ran past me on the street and in the trails around the field, his waif-like frame, bony limbs and gaunt face as distinctive as his long wavy hair and shy smile. Had he been caught in the deluge? Or had he—perhaps anorexia's captive—been compelled to run despite the storm's arrival? Or, had running in the middle of the night been his liberation, his savior, like writing and gardening have saved me from the grief-grip-loss that my son embodies?

When I put Calvin on the bus yesterday we were no doubt floating within a cloud, its sprays of mist collecting on our heads, dripping from trees, droplets adorning webs and beading up on leaves. If not for a good breeze, the humidity would've proven oppressive. Later, on my way back from a walk with Nellie, I stopped to talk with a neighbor. A nicely-dressed woman drove up curbside and exclaimed that she was looking for a notorious local man so she could run him down. The man she hunted had been seen recently knocking and entering open homes in the area, taking cash and jewelry, ostensibly to support his heroin addiction. Police confirmed that I'd seen the stranger earlier that morning knocking on the door of a home down the street. Though I didn't see him enter, somehow I'd thought his incessant knocking odd, so I memorized his description: white guy, medium build, brown hair, early forties, khaki shorts, dark hikers or sneakers, long-sleeved tee.

I winced when the driver, a colleague of Michael's who I don't really know, said she wanted to run this guy over. She claimed he was violent. I gently (hopefully) challenged her notion, but she could provide no supporting evidence. I tried to imagine what I would do if I were in his condition. I remembered a piece I heard about a former addict who described what addiction was like. I told the woman I thought it sad that the guy was in such a state that he needed to steal from others. She lamented she'd been dealing with him for years. I wondered what I'd do if I came across him, wondered if I'd give him a buck or two.

Troubled, I removed myself from the conversation, crossing the street to visit with Woody who was sitting on his porch. He was familiar with the man police were pursuing. The man's family, Woody said, had always had some sort of trouble as long as he could remember. I expressed my regret that anyone get hooked on opioids, knowing full-well—contrary to popular myth—that the average addict begins with opioids prescribed for pain by unwitting and/or cavalier physicians. Woody said the guy should get some help. I countered by admitting that I'd never been addicted to a substance, but that I imagine heroin must be nearly impossible to kick, perhaps even making it difficult to seek—or even want—help.

What flashed through my mind next was a glimpse of how others might view me and Calvin; I wondered what kind of judgment family, friends and strangers pass on us—what did she do wrong while pregnant? why is she so strict with her son? why so lenient? why is she so demanding and impatient? why is he so wild? why is she so skeptical, so harsh? why does she let him get away with this, yet make him do that?

I pondered compassion and what I see as today's empathy gap, which is widening in an increasingly polarized nation with a self-obsessed, callous man at the helm.

At the close of the day, while putting on Calvin's nighttime diaper and pad, giving him his cannabis oils and Keppra, and brushing his teeth, I listened to a piece on National Public Radio. Journalists spoke with the Idaho Director of Agriculture and to a pig farmer who described the hardship in the face of the warring trade tariffs that The Donald put in place. Hearing their distressing stories, I got teary.

"No one deserves to suffer like that," I said to Michael, "even if they voted for him."

Michael, though he agrees with me that support for The Donald is short-sighted at best, expressed his dubiousness that any of us is deserving of anything—beyond human rights such as healthcare and education—whether it be good or bad. I get it.

As the news segment closed, a wave of sorrow washed over me, leaving me wishing relief for the hard-working farmers, many who risk losing their businesses because the tariffs stand to strangle the decades-long, worldwide trading relationships they've developed. I went to sleep thinking of them.

Hours later, in the shiny black after midnight, I watched the jogger sail down the street into darkness, the driving rain matting his hair, his spine and ribs exposed beneath a soaking shirt. I wondered if he was cold. I thought of the petty thief rummaging desperately through strangers' homes just to get enough dough for his next fix. I wondered if he is lonely. I thought of the farmers, heads in hands, families to feed, crops and livestock and legacies in jeopardy, and I wondered how they'll cope. I thought of my sweet, innocent, unknowing Calvin sleeping upstairs, seventeen days since his last grand mal seizure. It's no matter, but empathy gave me some trouble falling back to sleep.

unfurling

Witnessing the evolution of a bud becoming a flower is astonishing to me. I ponder how each petal knows exactly when to unfurl and how, opening within days of others of its kind in the garden. Rarely do I see a flower which isn't all-together perfect, unless, of course, it has suffered from drought or some pest gnawing on its flesh. Nature simply seems to know just when and what to do. In my awe of these gorgeous events, I feel a bittersweet regret, knowing what seems true for simple flowers—and for most kids—is not true for my boy. His brain did not unfurl like it was supposed to. Instead, its delicate white matter never fully bloomed, leaving it thin and therefore incapable of transmitting his brain's messages to his body quickly and smoothly and, perhaps in some cases, at all.

Fourteen years later, I still wonder what went wrong.

Did I eat too little, too much? Was my egg decrepit? Did I eat bad cheese? Were my pants too tight? Was it a botched amniocentesis? Was it that sip of beer or that spot of wine or that lump of tuna or cheese? Was it the woman with the cough who we’d sat next to on the plane? Did I get her virus? Did I fly too late? Was I just too old? Was it something in the water? The chlorine? Did I swim too hard, too far?

Alas, I'll never know. Doctors assured me it was nothing I did while pregnant, that it was simply a blip in his brain's development. In my life's mourning, I hold fast to their assertions and to my boy, my sweet and lovely flower of another kind whom I can still hold in my hand and clutch to my heart while watching the slow-motion of his unfurling.

life-radius

Lately I've been stir crazy, perhaps a case of cabin fever having spent most of this summer plus the last decade plodding along behind my son in a life-radius too small to serve most anyone well.

There was a time when both Calvin and I were relatively calm: me before becoming a mother, Calvin when he was a tot. Though for years he cried from colic, there were long stretches of time when he lay quietly next to us in bed, on the couch or on a blanket or towel spread out on the grass. On hot days, he'd recline in a baby bathtub outdoors, cross one foot over his other knee, fold his hands behind his head and just chill. He was tranquil. His body could stay still. And even though our life-radius was limited, there were placid moments within it.

All of that changed after he began taking the drugs meant to combat his seizures, including benzodiazepines, the first of which, Klonopin, was prescribed by Dr. Rx when Calvin was just three years old. The drugs took a toll on our boy. I lament having learned too late that the Klonopin was unnecessary—ostensibly prescribed as a bridge drug while he titrated up on Lamictal. Zonegran, which had been simultaneously prescribed at a therapeutic level, could and should have served the same purpose. Instead, one drug became three.

For years it appeared to me Calvin might be on the verge of walking by himself, but when he began the ketogenic diet at the age of four, what little balance, coordination and strength he had fell to pieces. Subsequent blood work revealed an increase in his antiepileptic drug levels; the diet must have been causing his body to metabolize the drugs differently. To improve his balance and muscle tone, we were counciled by Calvin's new neurologist to take him off of the Klonopin—the once-temporary bridge drug having remained in place for well over a year despite my previous pleas to discontinue it. Within days of initiating what I understand now was a swift elimination, Calvin's seizures doubled, and we were advised to add a fourth antiepileptic drug while he completed the benzo wean. Not knowing what we know now, we added another benzodiazepine, clobazam, aka Onfi. We were told it was thought to be less addictive and less of a muscle relaxant than the Klonopin, and that it might help ease his Klonopin withdrawal. It did, but because of habituation, which is a hallmark of benzodiazepines, Calvin eventually advanced to a very high dose of the addictive drug, and soon he was no longer capable of sitting still, sitting on our laps to read his favorite book, lying next to us in bed. His body became a mass of flailing nerves.

This past Februray, Calvin had his last dose of clobazam (insert secular amen here); the wean took us nearly four years. But his restlessness, though improved, for the most part has remained. He has a hard time sitting in a chair without being strapped in. He sits on our laps for mere seconds, minutes at best. He snaps and rubs his fingers incessantly. He doesn't attend to toys for more than a few moments. He paces around the house, constantly on the move from table to chair to jumper to shutters to stairs to couch to door and back again. I wonder if he will ever calm enough to learn to feed himself with a spoon.

But on a good note, it has been thirteen days since Calvin's last grand mal, nearly twice as long as his average span between convulsive fits of late. In that time we have witnessed only two partial complex seizures—one this morning—and he is, for the most part, sleeping very well. I'm tempted to owe the long span between grand mals to the new CBD oil from the good folks at Palmetto Harmony, but we need to give it more time before we can feel more certain. In the meantime I'll remain in my tiny life-radius, antsy and anxious to find an elixir that works to rid my boy of his fits, hoping for some newfound calm.

Michael and Calvin, July 2006 before his first apparent seizure, before the drugs.

cautiously optimistic

Lately I am feeling cautiously optimistic about the promise of Palmetto Harmony, the new CBD cannabis oil we started giving to Calvin a few weeks ago. We had discontinued a different CBD oil several months ago thinking it might have been exacerbating Calvin's complex partial seizures. But in a slight a panic over more frequent grand mals of late, I remembered hearing years ago that finding the right strain of cannabis can sometimes take a bit of trial and error.

Since Calvin's first dose of Palmetto Harmony, Calvin has consistently slept more soundly and had an easier time of falling asleep. He has also been calmer and is smiling more. The most profound effect I've witnessed was a couple of days ago when he exhibited almost every one of his seizure harbingers—eye poking, extreme agitation, mania, restlessness, dreadful butt rash, completely amped up behavior, repetitive humming, pacing, mad finger-stimming, dropping down, shrieking, warm skin. Suspecting an impeding seizure, I increased his CBD oil, which we give him only at bedtime. Calvin was asleep within half an hour; the seizure never transpired. The next day Calvin was back to baseline and has been a pleasure to be with since.

So, though it is still too soon to tell, I am cautiously optimistic that this new CBD oil is working to calm Calvin's brain and body. Hopefully it will help to reduce his seizures, but if nothing else, at least I can delight in a few days of a compliant, fairly calm, happy child.

With his Gpa last year ... Calvin's looking more like this of late.

shitshows

Everyone needs something to laugh about, particularly in these days of shameless bigotry, of families being painfully separated, infants "defending" themselves in immigration court, White folks calling police on Black men, women and children for rightfully swimming in pools, barbecuing in parks, entering their own homes, mowing lawns and selling water in their neighborhoods on hot summer days, in these days of a POTUS eroding our alliances while cosying up to tyrants, his administration attacking our clean water, clean air, reproductive rights, human rights, health care, free press, and diminishing our standing in the world as a reasonable, ethical, dependable, faithful nation worthy of respect.

Yes, the cartoon below made me laugh, giving me a brief reprieve from the shitshow going on around us these past eighteen months.

Like politics, life with Calvin has its ups and downs and exacerbating in-betweens. I'll be the first to admit that taking care of him is the most difficult challenge of my life, and it tests me daily. Caring for our tiny teenager who in reality is much like an infant on the verge of walking—he's non verbal, still wears diapers, can't really feed himself, suffers poor balance, has occasional tantrums—has been hard on my mind, body, spirit, and psyche over the years. It turns out, for whatever reason, I'm up for the challenge. But don't tell me that it's because God chose me to be Calvin's parent due to my strength and patience. Don't tell me everything happens for a reason which, if you break down that theory, it means that some divine entity—the likes of which I don't and could never believe in—put Calvin here on Earth in the fucked-up and suffering condition he is in only to teach some twerp like me a lesson; I am not worthy of my son's suffering. No one is. And don't tell me that God doesn't give folks more than they can handle, because my response to that will always be, "if that is true then why do people off themselves?"

Nope. Calvin is very simply here. And I am simply the mom who birthed him. And his brain is messed up because something in nature went awry or simply didn't develop. And I choose to find purpose in the shit that happens to him and to us, in great part because I must've been born an optimist, I believe deeply in the power of gratitude, I am strong, patient and resilient, and I luckily inherited my mother's effervescence and my father's sense of humor and cynicism.

So, world, turn up that shitshow dial to eleven if you must. I—and the rest of us—can take it, even if we're sometimes weary.

earth's oppressions

A blast of sky presses down on me, humidity's weight lingering in my lungs and limbs. Sweat gathers at the nape of my neck, collects under my breasts and trickles between my ribs. The morning air is sometimes white with moisture, its blades of grass beading up beneath my feet. At times I feel it's hard to breathe.

Plodding along I think of Earth's oppressions, not in terms of weight or mercury, but in time and space and lives: bawling babies hastily taken from their mothers' milk; frightened fatherless toddlers teetering between strangers, on the brink of depression and detachment disorder; refugees fleeing untold dangers crammed into rafts and trucks and tiny, frigid cells awaiting ... what?; young boys trapped in a flooded chamber, monsoons coming, oxygen waning; women and girls enduring, suffering, lamenting the control and abuse of sordid men—some they trusted; Whites calling cops on Blacks who are just minding their own business; truth and virtue under fire by diabolical despots and their cronies, here and abroad.

I hang with my boy Calvin who cannot speak, his monthly seizures holding steady just under ten. For now, he seems happy, is smiling a lot and sleeping well; a week ago, the reverse was true. I've been here before, the place where time and space expands luxuriously only to be compressed by increasing seizures. The new moon is coming, its gravity waxing oppressive.

I think of those stranded boys in Thailand, trapped in a cave, exhausted, feeble, unstable, afraid, by now blind as bats to light. What if one were like mine? He couldn't hold a regulator in his teeth; wouldn't know how to breathe. Couldn't swim or scuba dive, unable to escape the watery tomb alive.

And so, as always, Earth's oppressions lead me into weeping then to gratitude—grateful for my time and place, grateful for my non-verbal, incontinent, legally blind, uncoordinated, intellectually- and physically-disabled, autistic, enigmatic, epileptic child.

Calvin, photo by Michael Kolster

joy ride

Red-eye flights are aptly named; mine came in this morning at just after seven. I returned from a short trip to Seattle, having stayed up past midnight one-too-many days. It was good to get away, though I had too little time to see everyone I wanted to see, and re-entering the atmosphere that is all-things-Calvin has proved a bit trying, particularly when it is his third day in a row of seizures, humid, and ninety degrees.

My trip was relaxing and invigorating. I spent some time driving around my old suburban digs—the pool where I spent all of my summers, the brand new high school, the house I lived in from the age of two until twenty, which now seems a dwarfed and somewhat dilapidated version of the one I remember, the pond where I used to catch frogs. The place had changed and yet, in ways, had remained remarkably the same.

I dined with dear friends whom I've known most of my life and who have kept in touch with me, noshed on homemade Indian food and pizza. I rented a car and cruised south to my nephew's wedding, met his new bride, sat and shot the shit with my brother Steve whose wit and humor I so appreciate. On Sunday I sipped a sidewalk bourbon at the Pike Place Market, ate roasted octopus and gigante beans in Adirondak chairs on the shores of Lake Union, strolled past sleepy Capital Hill mansions and—one of my trip highlights—rode the ferris wheel on the wharf drinking chilled white wine from a sippy cup. My other nephew and I scored some tasty shawermas on Broadway, satisfying a craving I've had since having left San Francisco seventeen years ago.

And though all that is a distant memory already, I'll still have etched in my mind forever the faces of people I love deeply, and the joy ride I took on a cool summer day in June, Seattle style.


from Christy Shake on Vimeo.