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.

breakthroughs on a somber day

again, my mood is somber, reflected in the sky's leaden heaviness. weighty as a handful of stones in my pocket. but like a cloudy sky, there are breakthrough moments of light. little bits of levity, like when i pick up a sleek and clean smellie from the groomer and she goes cutely berserk. or when my husband comes home early. or when i see the space open up as i chop down a sickly, old, monster rhododendron, and michael finishes it off with woody's chainsaw—so much possibility for something beautiful to take its place. something less beastly and oppressive. something i don't have to wrestle. something that doesn't burden me like my son's ongoing struggles.

lately, sorrow has been setting in as i'm reminded of how calvin, who is seventeen, should be a rising senior in high school—should be looking into colleges, reading interesting and complex novels, mowing lawns, hanging out with friends on the town mall or bowdoin quad, leaping off of piers and low bridges into brackish waters. instead, he's chewing on a crocheted rabbit rattle, having his hand held while walking down the sidewalk, tossing his sippy cup sideways like a toddler, playing with baby toys, being potty trained, wetting diapers.

several of my friends and acquaintances have kids his age. they're so grown up. independent in nearly every way. they've got futures as bright as breakthroughs of sunshine and blue sky in a bank of dark clouds—hopeful, sparkling, limitless. witnessing them is lovely, yet, like bittersweet lozenges, hard for me to swallow.

and as the pandemic has slackened a bit of its grip, i feel surprisingly unmoored. as the tethers are loosened, i'm not sure what to do. i find myself flailing. it's a strange mix of emotions. free and yet still imprisoned by my son and his condition. and while my husband made plans to visit italy this fall to print his next book (having photographed in paris and hawaii several times in recent years) i find myself wondering how i'll get through today, tomorrow, and the day after that. wonder where i'll be or have traveled, or what this normally-prolific self will have accomplished in two, five, ten years. nowhere? nothing? same old same old?

and i'm missing the handful of folks who unwittingly helped ground me during the pandemic. familiar strangers—the runner(s), bikers, strollers, dog walker(s)—smiling, nodding and waving to me from the roads. faces i look forward to seeing. lives i can only imagine and live vicariously through. haven't seen them lately. like a starless sky, without them i'm having trouble navigating through the pandemic's rough and receding seas. other than my husband and son, and the landscape itself, they've been my constants this past year, like little beacons or shards of light in a darkened sky. saw them much more than my own friends, though from afar. without their grounding, i feel as though i'm drifting from shore. and though i'm a pro at treading water, i feel slighly seasick. but perhaps, like stars on a cloudy night, they're not reliable. and why should they be? i'm nobody to these strangers. we all have our own lives and loved ones and struggles. and yet i remain eternally hopeful for communion, compassion, friendship, empathy, understanding.

today, however, on a favorite stretch of wooded road, i saw the black-clad couple (though this day wearing more earthen tones) who live on the point. i slowed and pulled over. rolled down my window and introduced myself. while trying hard not to choke up, i told them how i'd seen them frequently while driving the same roads nearly every day during the pandemic with my nonverbal, legally blind, autistic, epileptic, seventeen-year-old boy. they peaked in on calvin, who was in the back seat craning hard to find an absent sun. i told them how reassuring it was to see the familiar faces of strangers like them during months on end of long, lonely days spent solo with my son. they said they recognized my car. i'd seen them wave. the three of us visited for quite awhile, discussing neighbors and kids, drugs and doctors, the pandemic and back roads. i invited them to read my blog. it felt good to finally meet and connect with folks who have unwittingly been my mooring during a very difficult year. felt healing to offer them my gratitude in person. i wish i could have hugged them. they seemed quite affable and open.

finally, we said our so longs, and as i put the car in gear and headed to the point, i felt the sun's warmth and saw its rays start breaking through cracks in a vast bank of clouds reflected in a tranquil sea.

heartbreak kid

awake since quarter of three. worrying about my kid and the bad spell(s) he's been having. four grand mals in two weeks. two within four days. impossible behavior between seizures. bleating all goddamn weekend. no respite from his bellowing, even on our drives. his shrieks are unhinging. i roll up the windows so as not to startle bikers and runners passing by. nothing we do seems to help soothe or fix his affliction. it's relentlessly heart-rending. impossible to imagine how he feels inside.

i can't fall back to sleep. i get up for a drink and to pee. i see the waxing moon in the window frame. i understand its gravity as satellite and omen. i try hard not to resent the orb slung low in the southwestern sky. after all, it has no interests or designs. just glows there gorgeously, stars seemingly nearby.

slipping back under the covers, i worry about my sleeping child. i feel the seizure coming. like a perfect storm, everything has aligned—the blustery weather, the dramatic change in temperature and barometric pressure, the full moon just days ahead. the lord works in mysterious ways, some people claim, but only when it's well-timed. i don't find religion helpful or convincing. i feel the world would be better off without its sanctimony and warring. that's partly why i left it behind. calvin is living proof we don't need religion to be decent, loving and kind.

at three-thirty, the seizure hits my kid. at four o'clock, from the comfort of calvin's bed i hear a cardinal's first chirps. sunup is imminent. i stroke my son's head. in the dark, i picture him—his creamy skin, auburn locks, huge blue eyes with dabs of amber, noble nose, full lips, straight white teeth, slender frame, broad shoulders, sturdy back, flat tummy, little muscley pecs. i let my imagination wander—if not for calvin's brain anomaly causing his limited vision, wordlessness, awkward manner, sounds and gait, relentless seizures and side effects, calvin might have been so many things. if events had been different, he might have been a talented athlete. he has it in him somewhere. if things were different, he might've been a good student, artist, helper, activist, advocate, friend. no doubt he would have been quite the looker in the way of ordinary kids. my calvin might've been a heartbreaker. right then i stop imagining and realize—he already is.

one such day a year ago

seventeen

seventeen years ago today, calvin was brought into the world. a full moon triggered him into existence. six weeks early. several days before a planned c-section in boston. on the heels of an ice storm. that's just how he rolls.

one o'clock in the morning. waking on a sheet soaked with clear fluid. remember dropping the f-bomb. quickly donning sweat pants, favorite boots, puffy coat. grabbing toothbrush, hairbrush and wallet. michael kicking open the ice-encased mudroom door. icy-black night. eerily quiet. rooflines, trees and power lines dripping with frozen crystals and diamonds. otherworldly. cold and still and strange as mars. breaths making frost inside of the car. traffic lights flashing caution reflecting as snowy yellow pools. desolate streets. feeling desperate and alone, but not overcome.

medivac helicopters grounded due to the storm. boston no longer an option. local hospital unable to deliver a preemie like calvin, his brain malformed. having nanoscopic contractions. thirty-five-mile ambulance ride to portland. its jangling chains like some kind of omen. pre-dawn arrival at the hospital. reciting, for the umpteenth time, history of my uneventful pregnancy up until the shocking sonogram. recounting our day-trip to boston—the diagnostic tests and specialists, theories, plans and strategy. silently doubting the small-city hospital. no donor platelets in case calvin bled. extracting mine by pheresis in case he did. blood sucked from one arm, centrifuge-spun, then pumped back into the other. too few remaining platelets for a safe epidural. only option: general anesthesia. michael forbidden to be by my side meant neither would witness our child being born. remember holding his hand until we were torn. wheeled away on those waxed linoleum floors. wondering if i'd see him and calvin on the other side of anesthetic, c-section void.

operating room just as you'd imagine. sterile and cold. ample plastic tubing and chrome. aluminum tanks, bright lights, monitors and leads. sharp, shiny instruments, white cloths, blue sheets. naked and shivering under a gossamer gown. stainless steel table a shock to my body, like putting a tongue to a frozen pole. nurses shuffling about, lovingly touching my arms. doctors' voices attempting to calm. gas mask in place before passing out.

michael held calvin within minutes of delivery. whisked away quickly to the NICU. at my first glimpse he was twenty-one hours old. my morphine fog kept us apart. he slept in a plastic isolette like a dozen others. a giant among them, weighing just under five pounds. i couldn't yet hold him. tachycardia. trouble breathing. animal surfactant. ventilator. C-PAP. monitors. tape. leads. head no bigger than an apple. sweet, wrinkly brow. thin, pinkish skin. a nose so familiar. precious little bundle. he opened his eyes for the first time when i called out his name. he recognized my voice. that was his beginning. today he turned seventeen.

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. 

what grief looks like

Unless there's rain, dreary days can make me grieve. Gray skies end on end tend to put the glum on me. Damp air chills my bones. Any attempts to walk with spring and purpose are hobbled by icy sidewalks.

These mid-winter doldrums make it all too easy for me to feel deeply some transient despair. Stuck inside, The Turkey is up to his usual antics—manic outbursts, intense, erratic and aimless behavior. He can do a good job of driving me absolutely batty. Hard to concentrate. Impossible to relax. Difficult to get anything done. Despair about how he's turning out feels inescapable. Baseless guilt and gnawing worry shadow glimmers of what might be considered joy.

We take Calvin to the coffee shop and the grocery store when, in winter, there are few other places for him to walk, and roughly zero other activities that he can do—we can't play in the snow, we can't take him skiing or skating, we can't bring him to the movies or for walks in the woods. I watch him limp across the street with his father, his gangly legs stiff and crooked, his feet turning awkwardly inward, one arm circling above his head as if he were riding a bucking bronco. Someone once said my boy walks like an astronaut. It wasn't meant as a compliment. I ask myself, when did what was already wrong with him get worse (in this case, his walking)?

When, rarely, Calvin looks me in the eyes without his glasses, I can sometimes see glimpses of a normal boy—the one he might have been if not for any number of things which we can't make right. But when I pull back and away I see one eye turning in, I see him drool, see him shriek, stomp, bite, bang, careen, drop, flail, wander, perseverate, seize. I see a face and body so handsome, mild and familiar and yet so very foreign and bizarre to me. And, I see my own grief. I wish he could talk to me. Eat with a spoon. Dance. Run. Play with friends. Watch videos. Draw. Sing. Get along on his own.

On a beach walk last autumn I remember musing on what grief looks like. I decided then that grief looks like the curly sprig of a young widow's mane in the wind. Grief looks like a slate-blue day in winter. It looks like khaki pools of water filling footprints left in sand. Grief looks like a messed-up sonogram. A withered rhododendron. A face rendered unrecognizable by sleep deprivation, stress, disappointment and age. Grief looks like a loved one being gradually defeated by cancer. A gorgeous bird found dead on the sidewalk. A mother lost to dementia. A desolate street in an ice storm. A child in mid-seizure. A helpless parent. An empty seat at the table.

But grief also looks like a prison cell. A hungry child. A genocide. A war unending. Raging wildfires. Melting icecaps. Suicide. Poverty. Famine. Abuse. Oppression.

And as the sun briefly climbs out from behind the clouds and warms my thighs this morning, I think to myself, perhaps we have it easy.

in case you didn't know

Epilepsy can kill. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder for which you take a pill and everything is okay.

Epilepsy affects over three million Americans of all ages, as many as 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of epilepsy occur each year and it is estimated that up to 50,000 people will die every year from epilepsy or seizure-related causes, such as drowning. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating and sometimes lethal. Side effects include dizziness, headache, nausea, poor coordination, visual disturbances, trouble with balance and gait, insomnia, drowsiness, confusion, abnormal thinking, fatigue, hyperactivity, agitation, aggression, depression and suicidal ideation, just to name a fraction.

Those who don't benefit from medication risk brain damage, cognitive decline, hospitalization, exorbitant medical bills and sudden death.

Quick facts:

• Epilepsy affects 65 million people worldwide.
• Epilepsy affects over three million Americans of all ages, just over one in 100 people. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. 
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• One in twenty-six Americans will develop epilepsy at some point in their lifetime. 
• Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
• In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
• The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. 
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. 
• The mortality rate among people with epilepsy is two to three times higher than the general population, and the risk of sudden death is twenty-four times greater. 
• Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
• There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
• Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
• For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 
• SUDEP: SUDDEN UNEXPECTED DEATH IN EPILEPSY FAQs

David Beauchard, illustration from his graphic novel, Epileptic

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

breathless

The sun, readying to set above smoky embers, kicks up a cool breeze. Gusts skip across the fields, flipping skirts like flags and ballooning blouses in a kaleidoscope of oranges, blues, reds and ochres. Ties fly sideways. Hats tumble off backwards. The diners, this year's college students, are dressed in their late-summer best—vibrant frocks and jumpers, slim sport jackets and slacks, suede loafers and strappy sandals. They arrive in clusters on the heels of convocation. Some run and hug each other. One squeals and jumps piggy-back onto another. Others stroll hand in hand, in pairs and trios. I feel their joy quite palpably, and it makes me smile ... and wither.

As I lead Nellie away from the flock, shielding my gaze from the sun's glare and from the unabashed gleam of hardy kids in their teens and twenties, I bow my head and cry. I weep lamenting my son Calvin's misfortune and his inability to one day experience such pomp and circumstance, such brotherhood and sisterhood, such revelry. I pity myself, too, lamenting my first few years of college which were so very different from this—the enormity of the university, the lack of good council, my disconnectedness, my disappointing swimming career, my disorientation in a sea of forty-thousand students, my lack of forming lasting deep connections.

I watch as these eighteen-hundred youths commune at rows of tables amid a sunny field, some of the best and brightest, these lithe and curvy, stout and muscly, black, brown, pale and white bodies speaking with various accents from around the nation and world. I want so much for things to be different. I want Calvin to suddenly speak and read and write and philosophize. I want him to look up into the night sky and wonder, want him to gaze across a sea, yearning for distant places to visit. I want him to hear and speak different languages, take risks, dream. Thinking of all these lost possibilities makes me breathless.

On our way home we walk against what seems like an endless stream of dapper students. Seeing them, I waffle between delight and despair. Out of the strolling throng pop two familiar faces, J.P. and Nate, two of Michael's former photography students. They each embrace me, smiling, before disappearing back into the crowd. For a moment I glow, knowing were it not for Michael's job as professor I'd never have met these worldly, kind and gifted souls. Then a young man walks past who reminds me of our friend-brother-son who took his life this time last year, and the one who lives nearby and yet has vanished, and I wonder where the others will go. And as I unleash Nellie to run the last few yards toward home—her understanding and ability seemingly far surpassing Calvin's—I remember his limitations and the ones which tether us to him so tightly, and my breath is whisked away once more.

Photo by Michael Kolster

whatever you are, be a good one

Chronically sleep deprived—in general and of late—and despairing of life's various disappointments, including my son's recent spate of focal seizures, I opened a book that Calvin's school had awarded him for being a so-called honor student.

The small book, Whatever You Are, Be a Good One: 100 inspirational quotations hand lettered by Lisa Congdon, proved therapeutic as I flipped through its pages. Below are some quotes which struck me most, particularly considering the state of things in the nation and in my mind, plus other smaller, albeit troubling, goings-on. I hope you like these and find meaning and solace in their wisdom, as did I. If so, meditate on them:

Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind.

—Henry James

Life appears to me too short to be spent nursing animosity or registering wrongs.

—Charlotte Bronte

Unselfish and noble acts are the most radiant epochs in the biography of souls.

—David Thomas

Nothing in life is to be feared, it is only to be understood.

—Marie Curie

Be curious, not judgmental.

—Walt Whitman

I hold this to be the highest task for a bond between two people: that each protects the solitude of the other.

—Ranier Maria Rilke

Nothing contributes so much to tranquilize the mind as a steady purpose.

—Mary Shelley

I feel safe in the midst of my enemies, for the truth is all powerful and will prevail.

—Sjourner Truth

Hope smiles from the threshold of the year to to come, whispering, "it will be happier ..."

—Alfred Tennyson

Photo by Michael Kolster

if-onlies and might-have-beens

Foul is the smell coming from my son's mouth, as if there's something rotting inside him. It stinks like a festering wound. I think some of it might be blood from having bitten his tongue during the seizures he suffered the other night and this morning. Of late, the grand mals are coming in clusters—nine in the past month.

These seizures, drugs and side effects have been ruinous for all of us in some form or another, and there's really no end in sight. Calvin can't stay still for even a few minutes. It's called akathisia, the movement disorder characterized by an inner feeling of restlessness due to the use of antipsychotic drugs. I know for certain it's a side effect of the benzodiazepines Calvin was on from the age of three until fourteen. Keppra is also a culprit. I fear they've changed my boy's brain forever. Ruined. Devastated. Wrecked. I despair thinking of all of the if-onlies and might-have-beens.

Forlorn, my antsy boy held briefly in my lap, I remember Michael's notion that music will save the world, so I get up and turn on FIP (France Inter Paris) radio network. I've been tuning in a lot lately, and it's eclectic music and ticklish French accents have been a saving grace. The second song, River Man by Nick Drake, is gorgeously sorrowful and familiar. A few of its lyrics always bring me to tears.

Betty said she prayed today
For the sky to blow away
Or maybe stay
She wasn't sure.

I'm not a praying gal, but sometimes, like when Calvin can't settle, is manic or is in the thralls of epilepsy's fits and I feel myself sinking, like Betty, I find myself wishing for the sky to blow away. Other times, like when Calvin can remain in my arms for extended periods, looks straight into my eyes, or when I see him smile and give Michael hugs and kisses, I'd grip fists of that sky forever.

hell is an ambulatory eeg

i really don't feel like going into it. suffice to say, this happened today and is still happening. #ineedfourmorehands #fuckthisshit #webetterlearnsomething #colossalpainintheass #impossiblekid #tomorrowcannotcomesoonenough

treading water

From the age of seven until twenty-two, I was a competitive swimmer. At fifteen I was the lead on my high school's 400 freestyle relay team at the 1979 Washington State swimming championships. We won the event and became All-Americans. In college, I swam a mile under twenty minutes, the 50-yard freestyle in 24 seconds and the 100-yard freestyle in 54 seconds. I placed second at NAIA regionals in the 400 individual medley having never swum it before. At least once in my life I swam nine miles in one day. On most other days I swam four or more miles, and lifted weights. I bench pressed 135 pounds. And while there were periods in my swimming career when I might have been considered decently fast, by no means was I elite, though I swam with and against a couple of Olympians.

All of my time in the pool made treading water effortless for me. I could tread holding both hands above my head for minutes at a time without tiring, and could sculpt the water with my hands well enough to keep afloat without using my legs.

Last night, after our son Calvin suffered a second grand mal seizure in just over two days, it occurred to me that living with the nightmare of epilepsy feels like treading water in quicksand. Relentless seizures make it difficult to keep my head above water—to get enough sleep, to hold anxiety at bay, to catch a breather once in a while, to keep my child safe, to avoid sinking in a sea of despair.

Before Calvin, a life immersed in competitive swimming presented some of my most difficult challenges. The pain was relentless. Dreaded and grueling workouts began at ungodly hours. Rest between sets was fleeting. The torture lasted for weeks, months, years. Competition proved to be nerve-racking. Defeats were dispiriting. Much of the time the suffering outweighed the joy. At times, triumphs were few and far between, leading me to wonder if it was worth all of the suffering. 

In a strange way, swimming has steeled me for this marathon of caring for my non-verbal, legally blind, incontinent, physically and intellectually impaired, chronically ill teenager. All those years in the pool taught me the meaning and value of commitment and hard work, made me strong, tenacious and resilient, and enabled me to discover just how capable—physically and emotionally—I am both in calm, clear waters and in raging seas.

Photo by Lisa Kolster

nocturnal hours

It's hard to believe that five years have passed since I began making a THCA cannabis oil to treat my son's epilepsy. Shortly thereafter, I started the difficult and protracted effort of weaning his benzodiazepine, Onfi, aka clobazam. The endeavor took us four years, but we succeeded. What I find most noteworthy since starting Calvin on cannabis oil is that his daytime grand mal seizures—despite the benzo withdrawal—have virtually disappeared. The seizures, which were common in late afternoon, have been largely limited to nocturnal hours; he has suffered only a handful of them during the day in those five years. Calvin's partial seizures, on the other hand, often come in clusters and often occur in the wake of grand mals, usually presenting in the wee morning hours, yet still nocturnal, as they did today and on most if not all of the past six days.

This spate of complex partial seizures is disheartening. For the past few months, the Palmetto Harmony CBD oil seemed to have reduced their monthly numbers from double digits down to three or four. Regrettably, however, as I have been increasing its dose, we have not yet seen them disappear as I had hoped. I might now know why.

Yesterday, after Calvin received a meningitis vaccination, I weighed and measured him. I've sensed he has been going through a growth spurt, but I was surprised to see he has gained nearly seven pounds and has grown over an inch since October. This rapid and substantial weight gain prompted me to slightly increase his bedtime Keppra to equal a previous level, effectively zeroing out one variable as I continue to titrate his CBD oil. My hope is that it will lead to better seizure control. I'll let you know.

This past week's nocturnal seizures have meant that I've been waking up between two and three-thirty and getting little if any sleep from then on. Sleep deprivation is a form of torture, spiking my despair, anger, impatience and resentment. And yet, when I pull myself from its grip, get some rest, take a shower, I can see my way out of its shadow and am heartened when I remind myself of Calvin's seizure-free afternoons. I am pleased with how quickly he now (usually) bounces back from grand mals. I'm consoled by the notion he is finally growing, is taking a fraction of the drugs he used to, is walking tall, standing steady, having fewer mood swings and tantrums, and is more often going to sleep when his head hits the pillow. And though I still have to get up in the middle of the night, watch him seize, deal with the aftereffects of grand mals, change poopy diapers, dress, bathe and feed a fifteen-year-old, I can say with confidence that my boy is easier to take care of these days.

Photo by Phoebe Parker

beyond reason and dreams

I dreamt of him the other night, the friend we lost last August. I could feel his strong body standing close to mine, could see the anguish in his brown eyes. In the dream, he hadn't died yet, but we all knew this was his plan; we all knew he had made up his mind and there was nothing anyone could do. In life, I wish I'd known how deep his anguish went.

With his dream-time coming to a close, I wanted every minute of him to be mine. But I knew there were others who felt the same, and I knew also that he needed space to himself, this friend-brother-son of ours. And so, after embracing, he kissed me and I released him to say goodbye to the others he loved. As I rode the streetcar to downtown San Francisco (I dream of that fair city almost nightly), I saw him riding inside a trolley headed in the opposite direction. Looking quite young again, his face thin and clean-shaven, his small ears and nose holding dark-framed spectacles, he was alone and weeping, his face buried in his palms. I understood then how hard his life had become.

Later in the dream we were together again for one final moment. I held him as if he were my child, then kissed his chest where in life a gorgeous tattoo had arced. The tattoo, a quote from Voltaire's Candide, had read, in French:

All is for the best in the best of all possible worlds.

But in my dream, his tattoo had vanished, revealing a smooth, blank expanse of skin, the one he had been born with. That was the last I saw of my friend-brother-son; he had said goodbye to me in dream-person.

I awoke melancholic, and yet yearning to go back to sleep and dream of him again. In dreams, we see people who aren't reachable, can hear and touch them. I understood how selfish I was to be glad to see him alive again, knowing that he suffered, and yet it pains me to think he's not out there living the life in which he seemed to revel.

While seated at a cafe later that morning, Michael and I saw Hector, one favorite of his former photo students who have kept in touch in recent years. As Hector approached me from behind, I watched Michael's happy surprise. I remained in my seat and leaned into Hector while he slung his arm around my shoulder. Resting my head against his side felt safe, familiar, like it did when I had embraced my friend-brother-son in the dream that morning, and in real life.

Later, I recounted my dream to Michael, told him how sad it made me and how much I missed our dear person. As I described my dream, Michael's eyes turned pink, and watered. Between us, Calvin was up to his usual antics—drooling, fidgeting, cackling. Watching Calvin, I pondered why a boy like him—intellectually and physically disabled, legally blind, incontinent, nonverbal, epileptic, autistic—goes on living with so little tangible purpose, goes on making me sometimes resent him, making me sometimes wish I were free of him, while another life, one with so much genius, vibrancy and potential ends so tragically early.

But then I remember the phenomenal essay, A Life Beyond Reason, written by my friend Chris Gabbard about his son, August, who was not too unlike Calvin. At the end of the piece, Gabbard, who has just written a memoir with the selfsame title, describes his son:

August ... is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.

August died a few years later when he was just fourteen.

Having reread the essay, pausing on that last paragraph, I reconsider the despair Calvin often brings, and the grief I feel from having lost my hurting friend-brother-son to suicide. And instead of feeling sorry for myself, I feel grateful for having been able to know and love them deeply, and to have had the chance to tell them as much, in person and in dreams, past and yet to come.

Photo by Michael Kolster

pent up, awaiting escape

In so many ways Maine was not made for someone like me, for a fair-weather chick with a disabled, chronically-ill teenager who can't manage to walk all by himself, let alone in snow or on frozen tundra. And so every long, Maine winter we stay pent up at home when outside it's five or twelve or twenty or thirty-eight degrees. Frozen seas form in the wake of torrential sleet and rain, sheathing the earth in ice and crusting up pathways. Time outside is impossible for my child in conditions like these.

Yesterday, I wept in Michael's arms, lamenting this feeling of imprisonment, stuck in this place with a kid like Calvin who too often has seizures. I wished I were in California. If we lived in San Francisco—home for Michael and me in our late twenties and thirties—we could take Calvin anywhere quite easily on streetcars, on Muni trains, on buses, on the subway. In minutes we could be padding in the sand aside the Pacific, eating pizza in North Beach cafes, searching storefronts for the best dim sum in Chinatown. Year round there, days are mild and glorious. Parks, cafes and museums are numerous and bustling. Art is everywhere. Vistas abound, begging possibilities.

Here in Maine, January began well; Calvin had only two grand mal seizures by the sixteenth. However, the past two weeks have not been so good. Calvin has had at least five days with seizures in that span. He has stayed at home from school too often. His nurse called in sick. Monotony and melancholy set in. Worry knit its way into my brow. Sleep escaped me, though not from insomnia.

Understanding my despair, Michael came to the rescue as if for a wake, bearing extra attention, tenderness and understanding, and by delivering from "his" kitchen, multiple delicious dinners.

Today, as I look out over the back yard I see a veritable glacier in sun and shade. The rhododendrons have curled up, some tight as toothpicks, amid the frigid temps. All I can think about is spring and making escapes. Maybe I'll take a train south to see my sister. Hopefully I can get back to New York in May. In fall, I hope to make another a trip to San Francisco; too many things I missed while there last spring. All these journey's I'll do solo while Michael stays home taking care of Calvin. We can't easily travel as a family and still manage to enjoy ourselves, the places, our friends and each other, restricted as we are by our difficult boy and his needs.

On the phone yesterday with my dear friend Heather from California, she reminded me that every single day I take care of a sick child. Although I know this to be true, sometimes I forget, probably because Calvin has become my new normal. And though I love him to pieces, he's in great part why I often feel lost, stuck, hopeless.

Despite the fact it's windy and twenty-three degrees outside, I sit here on our green couch soaking up sun rays while trying to remember we're headed toward spring. Maybe it will arrive early. Perhaps we won't get much more snow. Hopefully, with more CBD oil, Calvin's seizures will continue slowly trending further downward. Perhaps I'll get more sleep.

And maybe, just maybe, come spring I'll escape.

Photo by Michael Kolster

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.

             

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.

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

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 blog HERE
**Here's a list of things you can do if or when Roe v Wade is overturned.

Photo by Elizabeth Aquino