9.22.2018

rough patch

Throughout the film Tully, watching her I saw myself in a thick, frumpy Charlize Theron screaming at her unhinged kids from behind the wheel of a car. I saw a slice of my life in nearly every one of her scenes—moaning in pain from engorged breasts, wincing at cracked nipples, slouching hopeless in a robe with a frowning mouth and sleep-deprived eyes. I watched her chop food into bite-sized bits, neglect housework for days, advocate for her "quirky" child at an ill-equipped school, field scowls from disapproving strangers, surrender what had been an exciting life to be a devotee of family and home.

In any given month our son suffers more than a handful of seizures, countless manic outbursts, tantrums, restless days and nights, the occasional night terror, and—for me—incessant monotony. As Calvin's mom I likely suffer from what other mothers of disabled epileptic children sometimes call Persistent Traumatic Stress Disorder—stress resulting from the accumulation of past and present strain plus the dread of a bleak future for ourselves and our children.

When I see friends around town, having read my blog they often say, "Sounds like you guys are going through a rough patch." What they may not realize is that this rough patch has lasted fourteen-and-a-half years. Since two weeks before Calvin's birth, when we found out he was missing a significant amount of the white matter in his brain, the burden hasn't let up in any substantial ways. Furthermore, outside pressures—reeling from a friend's suicide, confronting maddening issues with Calvin's school, the difficulty managing his illnesses, the lack of a nurse to help us a little, the current circus-of-an-administration and it's shameful treatment of a sexual abuse victim—add to the strain.

Today, I'm at home with a sick kid who, as a result, had grand mal seizures on consecutive days. He isn't eating or drinking and can't tell me what hurts, nor can he seem to remain calm for more than a few minutes before getting up and pacing restlessly.

So, I guess—like Charlize's Tully does—I should admit we're in a bit of a rough patch. I should soldier on through it, relax once Mary gets here to help us out so we can go celebrate our anniversary, and remember that tomorrow is a brand new day.

Photo by Michael Kolster

9.20.2018

humanity of kinds

Humanity is black and brown and white and infinite, glorious other tones. It is preemie and teen, middle-aged and elderly. Humanity is supple, spare, furrowed, hideous, wiry, gorgeous and fat. It is long-legged and stout, walks hunched over and crawls on its knees. It limps with crippled arms drawn to its chest, and glides along exquisitely. It is sweet and reeking, chiseled and smooth, ratty and chic, and thankfully never perfect. Humanity bleeds.

Humanity is iron-clad abs and double chins, muffin tops, beer bellies, rotten teeth, gorgeous curves, saggy boobs, hard arms, unruly curls, waxed bald heads, botox lips and tattoos. It is blind and deaf, blond and brunette, ebony and ashen, gay and straight, female and male and everything in-between.

Humanity is artist, driver, janitor, billionaire, chef. It is designer, clerk, nanny, vagrant, vet. Humanity is bumbling fool and genius. Humanity is a spray-tanned, petulant, petty, small-minded, selfish, immoral wreck. It is an enigmatic child, speechless and seizing, careening through each fragile day.

Humanity is mother, father, brother, sister, child, criminal, saint. Humanity loves who it loves, shares its woes and hides inside. Humanity seizes and shits, suffers angst and despair. Humanity is ignorant and bigoted, embracing, progressive and wise. Humanity sticks a needle in its arm and a finger down the back of its throat. Its flesh and bones are riddled with disease. It is gluttonous and ravenous, skin sometimes stretched over starving bones. It wars, invades, rapes, beats, murders, imprisons and steals. It stumbles, bruises, breaks, grieves. It too often turns on itself.

Humanity—of another kind—is compassion. It is charity, love, empathy, openness, benevolence and gratitude. It is selfless, magnanimous, forgiving and generous. It shares freely of itself, expecting nothing in return. Humanity is not excess nor greed, nor is it oppressive. Humanity helps its brother and sister. It is not afraid of other. Its kindness and understanding have no borders. It reaches deep, crosses divides, walks in the shoes of others, empathizes with the little guy.

9.16.2018

psychotic child

I stood in Woody's driveway and wept. As Woody hugged me and brushed away my tears, Calvin banged and bit the white vinyl siding of the garage where there is a permanent stain from him doing so for years.

My son was experiencing a repeat of the previous day's deranged behavior, a harbinger of the next morning's grand mal seizure. Typically, a grand mal acts as a kind of reset for his lunacy, but this time his fidgeting and "ooh-oohing" and fingering lingered and worsened as the day went on until he was utterly psychotic and, as a result, perhaps so was I.

Later, as I sat on the edge of my bed watching Calvin stand facing out our bedroom window, his jaw clenched, arms up, fingers wildly snapping inches from his face, I wondered how I'd take it anymore. Seizures are easier than this, I thought. This psychotic child of ours is so unreachable—seemingly inhuman—in these agitated moments, which sometimes last for hours and have been reliably happening with frequency for years. Suddenly it occurred to me, as it has before, that perhaps Calvin was suffering from the effects of too much THC. He'd gotten a bit extra cannabis oil after the seizure to prevent subsequent ones, and it worked. But both of the cannabis oils Calvin takes—my homemade THCA oil (THCA is non-psychoactive) and the Palmetto Harmony CBD oil (also non-psychoactive)—have small, residual amounts of THC, which is psychoactive; It is impossible to make whole-plant oils that don't have traces of THC. I should note here that all pharmaceutical drugs are psychoactive.

My hunch about THC and my hopes for CBD led me to the decision to forgo Calvin's 3:00 p.m. dose of THCA, even though I credit the advent of that dose with virtually eliminating Calvin's early evening grand mals four years ago. At this juncture I feel it necessary to give a secular amen for THCA, which no doubt helped my son get off of his benzodiazepine, clobazam, aka Onfi.

When I was able to grab my computer, I looked up THC and its effect on children. One of the first articles I found was this one, which I scanned from top to bottom. What stood out to me was the use of the words, excessive and purposeless motor activity of the extremities (hyperkinesis) to describe one of the side effects of THC toxicity in children. Though psychomotor hyperactivity is also a side effect of benzodiazepine use and their withdrawal, I wondered if Calvin might be exhibiting this behavior because of the extra THC. Having read the article twice, then used Woody, Michael and my friend Lauren as sounding boards, I decided to also eliminate Calvin's morning dose of THCA, replacing it with an equal amount of CBD in milligrams (the CBD oil has about half as much THC as my THCA oil).

The next day Calvin was cool as a cucumber and fell asleep as soon as his head hit the pillow. Today he is slightly agitated, though I'm fairly certain it's because he is constipated. I'll spare you the details, but suffice to say, we're working on that.

Eventually, I'd like to eliminate the THCA if we are lucky enough to see the Palmetto Harmony CBD do a decent job of decreasing his seizures; so far so good. Already, I feel totally liberated not having to give Calvin his afternoon dose, having to remember to draw it up and schedule activities around its administration. If we can eliminate it, I won't have to carve out two hours to to drive and get the herb, won't have to get a liquor license to order the organic cane alcohol I use to extract the cannabinoids, won't have to pay $125 for one gallon of the alcohol to be shipped from Oregon, won't have to spend a week making the oil, won't have to dose it, won't have to think about it. Best of all, if we can get Calvin off of the THCA I'll feel more confident taking Calvin on a plane with just his CBD, which is less of a risk, legally speaking. Perhaps we can travel again; it's been a part of forever since we flew anywhere as a family.

So cross your fingers and knock on wood ... again. And though praying is not my thing, if it's yours, then feel free to pray we can escape this intolerable psychotic cycle we've been stuck in for years.

Antiepileptic drug agitation, 2011.

9.14.2018

changeling

There goes my kid again—manic, shrieking, flailing, tossing his head back and forth, dropping down, drooling, rashy, agitated, spacey, fingering like mad, unrecognizable to me in so many ways. In my darkest, rawest moments of cumulative sleep deprivation, frustration, despair and fatigue—and when Calvin behaves like this—I sometimes think about what a freak he can be, especially under the cloud of a looming seizure.

Before dawn, my hand resting on his pounding heart, my little imp drifts back to sleep after his fit. My mind wanders. I think about our dear friend who took his life late last month; I wonder what misery plagued him. I remember the videos of Calvin in which he was calm and smiling, sitting quietly paging through his favorite board book, walking with his arms at his sides instead of circling wildly above his head. I revisit Michael's essay about changelings—children who, in medieval lore, were considered freaks having been born with mysterious diseases, cognitive or physical defects. The changelings' curious and abhorrent afflictions were blamed on being the offspring of faeries or trolls who were switched for healthy children at birth. Many of these changelings, too burdensome for their families to care for, perished in rivers.

Our boy Calvin, like the changeling, is certainly an enigma. We'll never know who or what or how he might have been had he been born with a healthy brain, had he never developed epilepsy, had he never taken ten antiepileptic medications, plus drugs for constipation, drugs for reflux, drugs for sleep, drugs for his gut. All I know is that he, a pubescent teen, is in many ways stuck somewhere between infancy and toddlerhood. I see his peers ride past on their bikes; it won't be long before they'll be driving. They play in bands, compete in sports, act in plays, learn foreign languages, read novels, write papers, consider politics and explore the stars. If they haven't already, they will hold hands and kiss sweethearts. In just a few years, they will be awarded their diplomas, will go off to college, perhaps travel the world, take care of themselves. Our changeling will remain here with us doing the same infantile, rote things he's been doing since he was two ... and likely seizing. And though it's painful every time I try to picture Calvin doing amazing yet ordinary things—even having a simple conversation or walking in the woods with me—I can't stop myself from imagining.

As Calvin recovered from this morning's grand mal, Michael shared with me a presentation he'll be giving today at the college. One of the first slides includes a quote from Diane Arbus who was photographing changelings in the mid 1960s before she took her own life:

There's a quality of legend about freaks. Like a person in a fairy tale who stops you and demands that you answer a riddle. Most people go through life dreading they'll have a traumatic experience. Freaks were born with their trauma. They've already passed their test in life. They're aristocrats.

As I mused on her words and studied her photos of children and adults with serious afflictions, I saw in them—in their remarkable faces, expressions and peculiar postures—their utter humanity. I regard my boy and see the same thing in him. He's my little changeling, and somewhere inside his shell of tension, anguish and pain, is a boy who emerges as the best of any of us—warm, sweet, unassuming, loving, uncritical, faultless, pure and unmistakably human.


Photos by Michael Kolster

9.11.2018

a good day at the fair

Sunday was a very good day. Though Michael carried him some, Calvin did not use the stroller while at the fair. He was happy, smiling, hugging a lot and very compliant walking. Best of all, though I found his excellent behavior somewhat suspect, he did not have a seizure that night or the next morning.

Trying my best to appreciate and savor Calvin's good days rather than focusing on the bad ones; it takes some practice.

click any photo to enlarge.

9.09.2018

stunted by drugs

On Calvin's first day of eighth grade, his new teacher asked me what short-term and long-term goals I have for Calvin. I rattled off a list from the top of my head:

learn to eat with a spoon (he had begun to when he was two). be (somewhat) potty trained. learn to nod his head for "no" and make a sound and/or pat his thigh for "yes." stand and wait (something Calvin had nearly mastered when his ed tech Mary was his main aide.) sit and watch a video. walk with his arms down at his sides instead of circling them around above his head and in front of his face. stop putting his fingers in his and other people's mouths.

With what I believe were good intentions, his teacher underscored how much kids like Calvin, once they are old enough, can benefit from working a job. I explained to him how, for eight years, I have helped Calvin practice—almost daily—pushing the doorbell at our neighbor Woody's house. The button itself is textured and ivory, its mount is black; it's easy to see. In nearly a decade, Calvin has been able to manage the task little more than a dozen times without my help, most of those times in the past year.

"Calvin is not going to be able to hold a job," I told his teacher, trying to conceal my despair at the notion. I realized then, with the greatest clarity, that the boy we have now is the boy he was twelve years ago and the boy he will likely always be—one whose development, hindered by the lack of white matter in his brain, was further stunted with the advent of seizures and the initiation of anti epileptic drugs at the age of two.

This morning I came across a video I'd posted on You Tube years ago. A kind stranger had commented, "He is adorable." The video, taken in 2010 just before Calvin's sixth birthday and which is in ways excruciating, shows him getting into a stand from a crawling position. Partway through, I mention how he is, "almost as good as he was two years ago," when he was not quite four years old. I also mention his fatigue from having just taken his morning dose of benzodiazepine, clobazam, which years later we spent four years weaning, eventually coming off of it last February.

For some people, epilepsy drugs have a way of stealing one's life. The loss of hard-earned skills as the result of mind-numbing drugs is painful. The list of failed pharmaceutical medications is endless. The heinous side effects from drugs that don't completely control—and sometimes exacerbate—seizures is harrowing. We end up with children we don't recognize and aren't sure we can ever know, with children who might have turned out completely different if not for the relentless brain- and body-pummeling of seizures and drugs.

Having said that, our son is no less adorable or affectionate. It comes as some solace that Calvin doesn't know what he is missing in the world. I cannot imagine he wants for anything but car rides (he didn't used to) and hugs and kisses, breakfast sausage and blueberries, spinning in his jumper and banging the shutters, biting plastic and wood and cloth, getting tickles from me and his dad, and walking down the sidewalk to ring Woody's doorbell, only to sit in Woody's kitchen rocker briefly enough to eat a piece of chocolate before getting up to leave.

             

9.05.2018

the silver backs of leaves

gales reveal the silver backs of leaves. blue plastic squares are nailed to trees. i don't always follow. moss grows in banks and crooks of crossed roots resembling bones and tendons. others arise as tiny pine forests. behind a swaying canopy, the noontime sky is full of chalk and hidden stars. underfoot, the ground is soft and brown, sheathed in twigs and needles. lichen smothers trunks and rocks. tucked into a sunlit dell, a large stump resembles someone. my heart jumps.

i think of him every time i wake. wonder what tormented him into ending it. my own son seizes before dawn's break. i kiss him in his fit. cradle him as he shivers and quakes. he is alive, but reeling. i wonder what it's going to take.

drought makes everything thirsty. green leaves curl up copper. bark hardens. dust flies in our face, stinging whites and irises, blurring perfect vision. parched skin tents and wrinkles. grass crisps into straw. supple petals wilt and leather. puddles become mud. moist lips resemble deserts. limbs brittle. souls wither.

9.01.2018

august update

We've had a pretty shitty week. A dear friend took his life. Calvin's kick-ass nurse gave her notice due to stresses with the agency. Because of Calvin's grand mal, yesterday we had to cancel a rare mini-vacation (it has been years and years since we've spent a night away from home) to join visiting friends at a lakeside cabin in Blue Hill. Calvin has had seizures—all but one of them partial complex seizures—on six of the past eight days, including three this morning.

So as I sit on Calvin's changing table as he rests in his bed, rather than romping in the garden with the sun on my shoulders and the wind in my hair, I'll give you a seizure update, and at least I can say I've been productive.

Between July and August, Calvin went forty days without any grand mal seizures after having begun giving him Palmetto Harmony CBD oil in late June. This month, Calvin went thirteen days between grand mals, and while not forty, it is still a good run considering a few months ago he had been having grand mals every couple to several days and, on two separate occasions, three in fifteen hours.

Otherwise notable is his recent increase in monthly complex partial seizures. We had seen them diminish, going from the low teens down to two or three soon after discontinuing the benzodiazepine Onfi in late February, and also after stopping a previously-used CBD oil.

On the face of things, it appears we may have traded grand mals for partial complex seizures: in June, Calvin had six grand mals and three partial complex seizures; in July he had three grand mals and four partials; in August he had two grand mals and twelve partials. What has remained the same since February is the number of days in any given month that he has seizures: six to eight.

The recent uptick in complex partial seizures leaves me in a quandary. I am wondering if Calvin is having more of them because he is taking too much CBD (granted, he is only taking 30 mgs/day which is not that much for a boy who weighs less than sixty pounds) or if it is because we reduced his morning and bedtime THCA oil. In making simultaneous changes, I muddied the waters, and as a result it isn't clear what I should do next.

While admitting that I hate his complex partial seizures nearly as much as his grand mals because of their stealthiness and their propensity to come in clusters sometimes leading to grand mals, I was somewhat comforted when reading recently that it is the frequency of grand mals that is the primary risk factor of succumbing to SUDEP: Sudden Unexpected Death in Epilepsy. A new study finds SUDEP occurring in about one in every 1000 people with epilepsy.

Since I don't know what is causing the recent uptick in partial seizures, I think it best to sit tight for a few days or more, keeping Calvin's current doses where they are. Though challenging, I'll try not to act too hastily, try listening to my gut. Maybe I'll try musing on the birds outside my window, the trees swaying in the breeze, the sun on my back if I can get outside, the butterflies, the stars.

Photo by Michael Kolster

8.30.2018

more than we can handle

My last words to him were, "I love you." He had returned the favor. Though the expanse of the Atlantic separated us, I felt close to him. He said he'd be coming back to Maine in a few weeks as part of a workshop to learn how to turn wooden spoons, and that he'd like to stay with us for a few days. Several times in the past he'd stayed with us for weeks on end. That conversation, along with a second, shorter one, happened just three weeks ago.

He began by expressing some concern having just read one of my darker posts, patience thins. We spoke of my periodic despair over Calvin's troubles, of his own recurring loss of faith in the world and in himself. He gushed about what he saw as extraordinary grace and resiliency in the face of caring for a non-verbal, incontinent, legally blind, cognitively disabled, chronically ill child, saying that he didn't know anyone who could do what Michael and I do. I reassured him that humans are remarkably adaptable creatures, and that most parents would rise to the occassion, adding wryly, "Good thing Calvin's cute." Sensing his own aguish—the months of silence, the rare back-to-back phone calls, the abundant accolades regarding my ability to handle misfortune—I wondered, then asked, if he'd ever thought about taking his own life.

"Yes, of course," he replied matter-of-factly and, after thanking me for my frank concern, noting that few others had ever broached the subject with him, went on to say, "but I'm not in that space right now." I urged him to please call us anytime, day or night, if those dark thoughts ever crept back again. That was the last time we spoke.

Tuesday morning we woke to learn that our dear and longtime friend had died by suicide. I've heard about life flashing before the eyes of those who are about to die. When Michael cried out after receiving the devastating news in an email, scenes of time spent with our friend flashed before my eyes.

I thought about the time when, in line for a matinee, he embraced me as I sobbed having gotten a call from the nurse announcing one of Calvin's grand mals. I remembered the mornings he'd arrive with large paper bags brimming with fancy pastries and breads—croissants, chocolate crinkle cookies, sticky buns, asiago fougasse, gingerbread, baguettes. I recalled the thin slate disc arranged with hunks and cakes of aged artisanal cheeses he hand-carried—just for us—on a flight from New York City. I remembered the Thanksgiving he spent here, when he tried his first taste of bourbon, and how on subsequent Thanksgivings he arranged, from afar, for a brown-bagged bottle of bourbon to be mysteriously delivered to our doorstep as if by a ghost. I realized we had watched him grow from a skinny, bespectacled seventeen-year-old—young enough to be our son—into a handsome, strapping man in his mid thirties. We watched him passionately delve into the making of art, wine, bread, coffee, custom bicycles and furniture. I became happily familiar with his taste in fine yet understated apparel. I admired the elegant, blue-black cursive-script tattoo—a quote or prose, which I regret forgetting—emblazoned across his broad chest. I got accustomed to his sensible shoes, his sharp wit, keen sense of humor, characteristic laugh, strong embrace, world curiosity, ingenuity, attentiveness and genius with notions, words, paint, wood, steel. And though—like so many others—he didn't seem confident in knowing how best to engage with Calvin, his compassion and love for us as a family was palpable.

Our friend had studied painting and photography. One of his paintings was a rough-hewn self-portrait, camera in hand. In large, broad-stroke red letters he included the words, I SUCK AT LIFE SO I WILL DO AS I'M TOLD. I marveled and applauded its irony and irreverence, had wanted to feature the painting inside my cubicle at the toxic employer I felt increasing contempt for. I wondered about the quote's basis; I wish I had asked him then.

In thinking of the tragic loss of our friend these past several days, I considered again the flabby platitude that folks have so thoughtlessly offered to me when they hear about Calvin's challenges—God doesn't give us more than we can handle. My response—calling bullshit—usually silences them: "Then why do people kill themselves?"

Eighteen months ago, Michael went to visit our friend at his home, a former Berlin hospital converted into spacious apartments. The two of them had a grand time exploring the city by day, wining and dining until the wee hours of the next morning eating from a buffet of various walnuts and fine cheese, drinking too much ridiculously delicious wine. No doubt they joked, laughed and reminisced, talked art and politics, and maybe even waxed philosophical. I had hoped to make the trip myself sometime soon.

We love you, man. You are and will be sorely missed. You're truly one in a billion-trillion. Next star I see has your name on it, brother. Rest in peace. No more anguish, no more pain.

Maine's Androscoggin River, photo by Michelle Lisi D'alauro

8.24.2018

misery

In bed with my son again as he thrashes and screams. He lunges at me, grabbing what would be fists of hair if I still had that much on my head. He flails for hours, the acetaminophen and THCA cannabis oils doing nothing to assuage his pain. Huddled in the corner of his bed, I guard my eyes, teeth, groin, and breasts from being inadvertently kicked or punched, while protecting Calvin from hitting his head or falling out of bed.

His screams are haunting, as if he is having his fingernails or teeth yanked out one by one—they are strident, deafening, tormented, deranged. He suffers these hours-long bouts of misery every couple of months and I still don't know their source or nature, wonder if they're migraines, kidney stones, gas cramps, impaction, muscle spasms, benzo withdrawals, night terrors.

And though he isn't even in the first percentile—barely four foot five inches and just under sixty pounds, he's half the size of an average boy his age—he is getting bigger and stronger yet.

Exasperated, I lift my wailing boy out of bed and lay him on the changing table. There, I undo his diaper and squirt 0.25 mls—5 milligrams—Palmetto Harmony CBD oil from a syringe into his rectum. Within seconds he calms. Within minutes he is asleep. He has been thrashing and shrieking for hours. It's 11:30 p.m.

When I wake up my arm is asleep. Stealthily, so as not to rouse my sleeping imp, I crawl out of his bed, raise and lock its safety panel, secure its netting, then return to my bed, hoping he'll be okay, hoping this never happens again.

Still frame, from the film Melancholia

8.21.2018

real boy

For years I have dreamt of taking Calvin to the movies, but our son won't watch television or videos. They don't hold his attention and he can't sit still very long anyway. There have been countless dreary days with nothing to do when I'd have given my left eye to take him to a movie. But Calvin can be loud as hell and quite distracting. So when my friend told me of a special children's performance of Pinocchio, lasting only one hour, I called up the Maine State Music Theater box office. After explaining our circumstance, we were gifted the tickets.

The house was packed. Little kids with their parents and grandparents filed into the auditorium. I must admit I was nervous and, regrettably, my anxiety seeped out in the impatient way I treated a couple of ushers when navigating the way to our seats, which were at the back of the main floor in a special row reserved for wheelchairs.

When the lights went down Calvin turned his attention to the neon exit sign, but then seemed to settle on the stage. The audience's cheering and clapping didn't seem to faze him at all. To keep him otherwise occupied, throughout the performance I fed him blueberries, grapes and pieces of chicken sausage. At times he shook his head back and forth manically, flailing his arms, then he began to vocalize. Thankfully, his intermittent grunts and howls were not loud enough to warrant removing ourselves from the show.

To my surprise, Calvin made it to the finale. I considered it a major feat for us both—my crazy kid and I venturing so far out of our comfort zones.

As the crowd dispersed, two women sitting next to us remarked on how well he did. One of them, Linda, told me that at times during the show Calvin patted her shoulder. As we waited to make our way down the aisle to the exit, the other woman, Marcia, asked me if I thought Calvin understood the play. I told her, no, going on to explain that though he does seem to understand some language, he probably doesn't comprehend conversation.

"He doesn't seem to grasp abstract things, like birthdays," I told them.

I went on to mention how surprised I was, shocked really, to have been so emotionally affected by a fable I've known since childhood. As the parent of a disabled, chronically ill son, the notion of a floppy puppet—one who can't walk or talk, and who has wooden legs resembling my Calvin's spindly ones—becoming a real boy proved painful for me.

"I want that for Calvin," I told the women, tears welling up in my eyes.

Marcia opened her arms widely and pulled me in. Linda offered the same gesture. I felt the warmth of their hearts in the long embraces they gave me. I told them I had had a similar shock when I had gone to see the theater's production of Young Frankenstien years ago, when The Wretch breathed life, then sat up from the slab, groaned and took his first awkward steps. In Frankenstein's Monster, as in Pinocchio, I saw my little boy.

8.18.2018

fortieth morning

Stepping outside behind Nellie, mug of coffee in my hand, I thought to myself, I shouldn't go outside until Michael's done in the bathroom. Still, I went, leaving Calvin unattended in his jumper, if only for a moment.

In the soggy garden, mosquitoes flitted around my head. Limbs were dripping with last night's rain. The earth was shrouded in mist, birds and crickets chirping. Partway through my stroll I heard Michael shout for me. I knew what was wrong, so I sprinted across the lawn, slopping coffee into my rubber boots as I did.

Entering the house I called, "What kind?"

"Grand mal," Michael answered, just as I saw him struggling to yank our convulsing boy from the jumper, his crooked limbs tangled in its straps.

I ran to the fridge and grabbed a ready-made partial syringe of Palmetto Harmony CBD cannabis oil to give to Calvin once the seizure stopped, aiming to prevent further ones. I thought about giving it rectally, a method its maker had suggested to stop seizures or clusters of them, owing to the cavity's rapid absorption.

The seizure was typical in every way except that its onset was while Calvin was conscious, which has only happened three times in the past four-and-a-half years since introducing a homemade THCA cannabis oil; all other grand mal seizures since then have occurred while he's been sleeping.

Today is the fortieth morning since Calvin's last grand mal, one of his longest stints ever between convulsive fits. I'd seen a few harbingers of an imminent one yesterday—rashy butt, eye poking, some grousing, intense hugging, fingers in his mouth and in mine as if trying to tell me something. While changing his first diaper this morning, I noticed his right eye turning inwards more than usual, then I watched both of his eyes panning back and forth. I made a mental note, thinking he might be heading toward a partial complex seizure, the kind which are more common not long after he wakes up.

Though it's uncommon for Calvin to suffer a grand mal after he's woken, I'm not that surprised. Seems ever since Calvin's epilepsy diagnosis twelve years ago, the seizures have a way of migrating away from higher doses of medication. We've been giving him his CBD oil—the medicine to which I attribute this very long stint free from grand mals—just at night. I've read that CBD's half-life is nine hours, so it makes sense the seizures might start appearing in the daytime.

After Calvin came out of the fit, I slowly squirted in half his nighttime dose of CBD—10 mgs. Tomorrow, I may start giving him small doses of it—0.25 mls equal to 5 mgs CBD—every morning to see if we can control his a.m. seizures.

In the wake of this morning's grand mal, our boy has suffered two partial complex seizures. After the first one, I gave him a small dose of THCA by squirting it into his mouth. After the second, I gave him the same dose, though rectally, something I've never done with cannabis oil. The seizure stopped immediately.

Our boy is resting now. I hope with all my heart he doesn't have any more today. They are no fun to watch. It is hard to feel so powerless in their midst.

And just as I was editing this post, Calvin woke from a nap to a third partial complex seizure. He rubbed his eyes and began to tremble. His lips and face went pale, his breathing shallowed. I gave him half a milliliter of CBD oil rectally. The seizure stopped immediately. He is already asleep again. I hesitate giving him any more medicine because it is within the realm of possibility too much will cause him to have the fits. But my gut says epilepsy is the culprit, and perhaps, too, the ugly remnants of benzos—now gone—that for years were in his system.

8.16.2018

things i'm grateful for

tall phlox. shiny new toilet seats. the look and smell of mulch. monarch butterflies. pink. transgender women smiling at me. autistic girls signing to calvin that they love him. kitchen shops and their owners. small glass tumblers. neighbors. palmetto harmony cbd cannabis oil. five-plus weeks free of grand mal seizures. quiet drives down harpswell neck with an untroubled boy. roadside ice cream cone with iconic view. bourbon within reason. dry days. sleep. calvin finally able to sit by himself (sort of) at a picnic table. nellie. cicada buzz. cardinals. beaches. walking through the woods holding hands with calvin for the first time without bringing a stroller. chips, any kind. happy boy. smiling boy. homemade mint ice cream. rosewater. the blue of baptisia. cool showers on blazing hot days. freshly mowed lawn. strong arms. denim. linen. kick ass nurses. sudden downpours. birdbaths. geraniums. my husband. the kindness of strangers. the love of friends near and afar. family. maine. commercial-free music. vinyl. weathered cedar shingle. alberta spruce. rhodies and azaleas. rain. screen porch. twilight time. good books. breeze over naked body. bats.

8.12.2018

personal best

Late last week, Calvin matched one of his personal bests having not had any grand mal seizures in a month's time after having suffered six to eight per month since April. The longest Calvin has gone between seizures is seventy-eight days. That was five years ago when he was taking high doses of three powerful antiepileptic drugs—Keppra, Onfi and Banzel—before I began giving him a homemade THCA cannabis oil, and before starting a four-year wean from Onfi. On the downside, this month he has had ever slightly more partial complex seizures than of late, but—only a handful—they have been mild and brief.

Nowadays, Calvin is taking a fairly high dose of Keppra, but we have not increased it in two years or so. Moreover, his daily dose of THCA cannabis oil hasn't increased for years. In late June he began a low dose of a new CBD cannabis oil called Palmetto Harmony, to which I attribute the virtual disappearance of Calvin's grand mal seizures.

For the most part, since initiating the Palmetto Harmony, Calvin has been sleeping better and, besides a few brief manic episodes on most days, our boy seems happy, is smiling and giggling and hugging. His improved behavior and compliancy means it has been easier to take him places; he willingly walks farther and has gotten slightly better at sitting still. My guess is this improvement is also due to the CBD oil and/or the reduction in his seizure activity.

For those of you wondering why CBD seems to be helping Calvin now when it hadn't seemed to help during the years he was on a couple of different ones, I think it may come down to the way Palmetto Harmony is made; it is infused directly into the oil rather than being extracted using ethanol or CO2 methods. In this way, the oil captures the broadest, deepest spectrum of cannabinoids and terpenes from the cannabis strains its makers use. In other words, nothing is lost.

So, we've entered Calvin's second month with zero grand mals on the books. It is an amazing feeling of liberation, and I have hope that we can make the partial seizures go away.

8.08.2018

a better day

After two miserable days, Calvin is back to his best self—smiling, giggling, eating some, drinking, not apparently seizing.

Thanks to all of you who called and wrote, sending messages of love and support after reading my last blog post. It means the world. I'm doing fine. Thanks, also, to the accident of birth—of emerging from my mother's womb a fairly upbeat person just like her and her mom—to my dad for showing me the merits of hard work and of never giving up, and to competitive swimming for helping me discover further how capable and strong I can be—emotionally and physically—and the difficult challenges I can endure when it matters.

All these gifts, along with gardening, writing, my awesome husband, our dog Smellie, our friends, family, my precious son, even the kindness of strangers, keep me going in the midst of his relentless epilepsy.

I'm most grateful for it all.

8.07.2018

patience thins

Patience thins as my boy has more mild, short, insidious seizures—four yesterday and at least one this morning. One eye is red—mine; there is something in it I can't seem to get. Did I forget my child hit it? My fine hair has been ripped off and out by my boy's clammy grip.

It's oppressively hot and humid outside. Inside, the air is close. I sweat. Surfaces are sticky. My son is home from school again as I await his next fit. I hope the cannabis quells them into submission.

He pokes his eye and shrieks at times. He shakes his head back and forth crazily—drool flying—flailing his arms in a spastic frenzy. In my exasperation, I've a rare primal urge to slap him upside the head. I take a big breath instead. Earlier, I threw his shoe into the far corner of his bed. Pulled a muscle as I flung it. Felt no satisfaction as it punched the softness of his quilt. Pent-up yesterday, I mused on hurling opaline bowls into cement to mimic my heartshatter from the days' and weeks' and years' events.

Now my son swings and spins in his jumper. His jaw juts and clenches in the repulsive way that makes the "seizure dimple" I detest. His arms crimp, elbows up, claws inches from his face, fingers madly snapping. He's my son, but I don't recognize him, or perhaps I don't want to when he looks and acts like this.

It's not his fault, and yet.

8.06.2018

how to ruin a day

I said to Michael that Calvin's day yesterday was one of his best ever; he was calm and super happy, compliant and smiling all day. He ate, he drank, he pooped. He hugged us at every chance, held my hand in the car and giggled when we kissed and tickled him.

But epilepsy knows how to ruin a good day. So far today, Calvin has had four complex partial seizures. The extra THCA oil I gave him after the first one did not thwart the second. The Palmetto Harmony CBD oil I gave him after the second and third did not thwart the third and fourth, though I gave him tiny doses thinking—rightly—I might have to give him more. After the fourth one, I gave him another small dose of CBD cannabis oil, but that was only twenty minutes ago, so too soon to tell if it works. Next time he has a partial seizure, I'll forgo the THCA oil and instead try giving him half of his bedtime CBD dose (twice the size of the singular doses that I gave him today) and see if it stops a cluster from occurring.

So today, the first day of the last week of his very brief and abbreviated summer school session, he's home with me. The windows are shut to keep out the heat. The sky is a powdery blue laden with moisture. The phlox and lilies are blooming, the grass is greening up from so much recent rain. Calvin isn't drinking or eating and isn't what I'd call his best self. And he keeps seizing.

But tomorrow is a new day, and I'm holding fast to the knowledge that Calvin hasn't suffered any grand mals in very nearly a month, the last one being the ninth of July. And I'll muse on his yesterday, hoping there will be more good ones like it in our future.

Photo by Michael Kolster

8.02.2018

milestones

After several discouraging months of Calvin suffering too many grand mal seizures, in late June I stopped keeping track in my daily journal the number of days between them. Perhaps, I thought, by not counting the days in ink, I'd be erasing some of the stress that frequent seizures put on me. After all, it was dispiriting to see him have three within fifteen hours two months in a row and, at the very most, go only eight or nine days before suffering another. Recording their frequency on paper seemed only to serve in validating—and perhaps in some strange, cosmic way sustaining—their pattern.

This morning, however, I had to tell Michael how delighted I was that, in the past thirty days, Calvin has had only one grand mal seizure.

"When was the last time that happened?" Michael asked.

I went to my desk and pulled out a stack of past calendars, paging through them in search of a month in which Calvin had less than two grand mals. After a few minutes I found one; it was August 2013.

For five years, Calvin has had between two and nine grand mal seizures every single month, totaling as many as fifty-eight in one year, plus as many as 105 annual complex partial seizures. And though that is far fewer seizures than many children endure, I'm heartened to think that, since starting Palmetto Harmony CBD oil, my son could be on track to have as few as five or six more grand mals before the end of the year, perhaps even fewer, with only a smattering of complex partial seizures.

There is no guarantee that upcoming months will yield such a positive outcome; epilepsy has a way of catching up. Even so, having reached this milestone, I have felt my anxiety level drop not worrying as much about an imminent seizure. I'm beginning to dream about one day decreasing Calvin's Keppra. I'm beginning to muse on traveling more, and as a family. I'm hopeful Calvin's progress might improve. Maybe he'll be able to walk with us on the beach for a spell, like Michael and I did yesterday, something Calvin has never truly done more than once in his life and, even then, not very far or well.

For now, though, I'll bide my time enjoying this slice of seizure freedom, hoping it becomes his new normal.

click on photos to enlarge.

7.31.2018

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.

7.26.2018

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.

7.24.2018

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.

7.22.2018

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.

7.15.2018

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.

7.12.2018

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.

7.09.2018

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

7.03.2018

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.

6.29.2018

rule number one: do not obey in advance

I'm away from home having traveled nine hours to attend a wedding. My time is not completely my own, which is why you have not heard from me. I should tell you that Calvin is doing okay and has had some of his best nights of sleep since adding a nighttime dose of Palmetto Harmony CBD oil last week.

When I woke up this morning while the others slept, I read my dear friend Elizabeth Aquino's blog, a moon worn as if it were a shell. She, like I, writes about her disabled child afflicted with severe epilepsy, intermingling her stories of despair, frustration, gratitude, perseverance with more than a smattering of the politics of social justice; she is a kindred spirit.

Her post is so powerful, expedient, and cogent I had to share it here:

Rule Number One: DO NOT OBEY IN ADVANCE
by Elizabeth Aquiino

Sophie got a new wheelchair yesterday, thanks to her private insurance which is governed by the Affordable Care Act's protection of pre-existing conditions and her qualification to receive Medi-Cal which helps to pay for any out-of-pocket expenses. I am filled with gratitude for these things and well aware of my immense privilege, particularly as these things are not afforded to everyone and are now under threat for everyone.


The week after Trump was inaugurated and became the POSPOTUS in 2017, my therapist (I know, LA, and all that stuff) gave me two pieces of paper stapled together, titled Twenty Lessons from the Twentieth Century.* Written by Tim Snyder, an American historian of Central and Eastern Europe and the Holocaust who is a professor at Yale, the list draws on the experience of those who lived before, during and after the rise of Fascism in Germany and Communism in the former Soviet Union. I think we're well past the rise part in Trump's America and into the fascist part, so I'm reviewing the lessons and was struck, especially this morning, by the first one:

Do Not Obey in Advance

Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.


Despite the ease of it (for those who are privileged like myself), caving to despair or cries of how fucked we all are, we just can't. I know that I have "obeyed in advance" many times during my life, have handed power or agency over to not just institutions but to people in my family and even people that I love. Part of that is due to deep cultural influences, to patriarchal systems, to my own apathy or cynicism. It's a slow process toward acknowledgement of that anticipatory obedience, even in my privilege, yet having a child with severe disabilities has pushed me along that path of self-awareness and agency a bit further. 


When I heard yesterday that Justice Kennedy was retiring, handing the POSPOTUS the chance to ensure a draconian legacy of conservatism on the Supreme Court, I did feel despair, particularly about the threat to women's reproductive rights and the Affordable Care Act's protection of those with pre-existing conditions. My despair shows itself in biting humor which isn't funny at all. I imagine Sophie driving a car, proving her "worth" in lieu of getting "free hand-outs" through Medi-Cal, yet unable to get insurance to pay for the drugs and treatment of her life long epilepsy. I imagine her getting raped by some free enterprise private contractor in an institution for the handicapped and not able to have an abortion because it will be illegal. I crack sick jokes because it helps me to cope and perhaps jerks people out of their malaise and into action. 


Here's the thing.  I am thinking that we're entirely not fucked, that we're actually in a fight and that we have to stay in it. We have to stay awake. We can't succumb to despair. We can't obey in advance.


It will be me, maybe, actually driving that car with Sophie in it and any woman or women who needs to go to a state that still guarantees their reproductive freedom.** Sophie is very quiet and capable of holding great secrets. I am very loud.


*  You can easily look up the lessons, but I typed them out on the bloHERE
**Here's a list of things you can do if or when Roe v Wade is overturned.


Photo by Elizabeth Aquino