candlelight vigil

In my dreams as a kid I used to smell death. The scent was sickeningly sweet. Typically, no one in my dream had died. It was just a sense that came over me, a notion more so than an aroma, that death was somewhere nearby. In any case, it made me queasy.

Last night at six-thirty, Calvin had a grand mal. It was only day three since his last one, and an unusual time of night for him to seize. No interventions were necessary but to lay our hands on him and kiss his neck. In its wake, he was more fitful than usual, couldn't lay down or sit still. Eventually, though, he settled and we pulled the covers over him as he fell asleep.

Sudden Unexplained Death in Epilepsy (SUDEP) is thought to be more common in the twenty minutes, or so, after a grand mal. So, I remained with Calvin while Michael brought up our dinner which we were just about to eat when we heard Calvin seize. Michael pulled a chair into the room and set a lit candle on Calvin's dresser among his various medicines. I sat on Calvin's changing table with my plate in my lap. We ate our dinner bedside, a candlelight vigil, lamenting Calvin's struggles and stresses, wondering if he'd one day succumb to SUDEP, then deciding finally he's too much of a fighter to submit.

After sleeping peacefully for hours, this morning at four Calvin woke to a focal seizure. The fit was long. He wasn't breathing during part of it. I syringed his morning THCA cannabis oil into the pocket of his cheek and under his tongue. Finally, he came out of the seizure, then fell right back to sleep. As I had feared, an hour later he suffered a second grand mal.

As I laid in bed next to him my mind wandered. I wondered how many seizures a brain can handle. I listened to the songbirds outside his window feverishly making themselves heard. I remembered how the only word Calvin ever said—just once—was Mama. That was before the seizures and drugs started to do their hurtful work on his development. After half an hour I returned to my own bed. I tried to get comfortable, focusing on relaxing my jaw and face muscles. Eyes closed, a hint of that death dream-smell came over me. I held Michael's hand. I thought of my friend Woody, of the little girl Charlotte who had epilepsy and died from probable complications of coronavirus. I imagined the candlelight vigil of the night before. I never did make it back to sleep.

advice and intuition

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

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

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

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

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

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

forget-me-nots and cardinals

Crouching, I toss mulch across the beds in swaths of brownish-red. I take care not to cover the baby growth, like seedlings, of what will next year be clouds of tiny blue and white and pink flowers. Twenty-plus years ago, Mom and I scattered my dad's ashes north of San Francisco, the city in which he was born, in a glen shaded by moss-covered trees and a creek running through the hollow, its banks massed with the same flowers. I asked my mom what kind of flowers they were. She told me they were forget-me-nots.

A few weeks ago, I spotted a couple of forget-me-nots sprouting in my neighbor Woody's yard aside his house in the soft earth near where a few years ago I had planted a couple of azaleas for him. He and my dad were similar in some ways—cleaning engines, mowing lawns, keeping things in order.

As I pulled my garden cart beside the burning bush, peering into its center I met the eye of a female cardinal, her orange beak glowing like an ember amongst a forest of green. There she sat as she did this morning and the evening before and the morning before that, her tail a stiff orange pencil poised on the edge of her nest. I saw myself in her, sitting and watching the world go by from her solitary perch. Going nowhere. Intent on her commitment. Captive. Waiting for something—anything—to disrupt or threaten the object of her vigil.

a day in the life of calvin

Pretty much.

             

seeing and breathing

the tick tock of clocks belies the passage of time. slow-motion video feels more real. i reconsider breathing—quick and shallow, deep and labored. I regard his hollow eyes and shiny lids and wonder if i am seeing things. he takes my hand. his is blue-veined, skin like tissue. i stroke his arm. rest my palm on his bald forehead. tell him that i love him. get him to crack a smile. if only i could hold him close one last time.

on long car rides i can sometimes flee grief and monotony. like a roller-coaster, even familiar hills and bends and vistas make me feel more alive, as if i'm actually going places instead of in circles. still, i'm grateful for the car and roads and time and space that take me away, even with the kid in tow. the point changes day to day. gray clouds stitched to hard waves become blue skies kissing land and sea. the view is one none of us will ever see again.

there's a scent in the air that i can't finger. witch hazel blossoms are long past. lilacs have gone to seed. fragrant azaleas have spent their lazy blooms. might it be honeysuckle? roses? peonies? not the sickly sweet that used to seep out of calvin's pores the day after getting rescue benzodiazepine. still, i've smelled something akin to that lately. again, i consider breathing. i consider N95 and covid-19.

the kid has been all right. happy, calm and smiling. four days seizure-free. he's eating well and growing like a weed. no bad side effects—yet—from the pharmaceutical cbd. if only he could make it past day thirteen. if only he could run and play and speak.

the cardinals lost their nest to predators it seems. could it have been the gray fox? i read they can climb trees. they're out there, predators. sometimes with feathers, fur, claws and fangs. at others, flabby-faced in suits and ties, uniforms, camouflage or riot gear. often they're incognito. they hurl their barbs and slurs, spray their gas and ammo, their conspiracy theories. hidden in their shade they undo modern policy, press their knees in the necks of the powerless struggling to breathe.

safe in the backseat my kid takes grapes and blueberries from me. he pulls off his shoe and chews it. yanks off his glasses and gnaws their temples and lenses. pulls off his sock and sucks it till it's sopping unless i can stop him. when setting out he almost always smiles. grimaces in the wind when the windows are down. cranes his neck to stare at the sun every time we turn south. i wonder what he knows of this world. if only i knew what he feels and sees.

i make another bedside visit. this time his house is quiet. no humming of the oxygen machine. i close my eyes with him. listen to him breathe. i tell him it is sunny and mild. a great day for gardening and porch-sitting while sipping bourbon and watching folks and cars sail off down the street. i tell him again that i love him. i tell him not to hold onto this world for me.

Simpson's Point, Maine

revolutions

Awake since one-fifteen, again reflecting on the state of things. Worrying about my restless son. Thinking about the racial strife, the righteous protests, the police.

An hour later the seizure came, my son shackled in its steely grip, at first unable to breathe. His heart beats wildly. I think about that handcuffed Black man dying, his neck under that White cop's knee.

It's day thirteen—a decent span without any fits since having increased my son's new medication: pharmaceutical CBD.

Things around here are getting green. Rhododendrons are blooming while wildlife encroaches—turkeys, foxes, raccoons, squirrels, chimpmonks—in the relative absence of humans on campus and cars zooming down the streets.

The status quo is unsustainable—in terms of seizures, racism, this unhinged administration, and policing. People previously silent are speaking. America is beginning to listen. Seizures seem to be abating. Revolutions of all kinds are within our reach.

Photo by Michael Kolster

cries of anguish

If I told you that taking care of my disabled infant-toddler-teen sometimes feels impossible— emotionally, physically, psychologically—you'd probably take my word for it.

If I told you I know more about living with epilepsy than my son's neurologists—the drugs' heinous side effects, the manic ramp-ups to the seizures, the awful fits themselves, the fallout from them, the cumulative stress—you might concede.

If I told you there are moments when I want to punch a wall, nights when I scream my head off in sleep-deprived frustration, mornings when I want to run away from it all—the dirty diapers, the managing of medicines, my relative confinement, the traipsing around behind my wobbly son in mindless circles all day long, the blocking of his efforts to stare at the sun and smack me in the face and bite everything in sight and drool on every surface in the house—you wouldn't doubt me.

If I told you I have little to no time or space or freedom to do the things I want to do and that sometimes I resent my son, my husband, my life circumstance, you'd take me seriously.

If I told you that I live with the fear that my son will die in his sleep after an epileptic attack, you wouldn't deny me that anxiety.

If I told you that my son's future seems bleak, and that I worry if he outlives us that others might mistreat him and that no one else will love him when he's no longer cute and cuddly, you'd feel me.

If I told you we've been gawked at, scorned, cheated, avoided, ridiculed and neglected, though that might come as a surprise, you'd believe me.

If I told you all of these things on a regular basis and for years, even if I've never met you, I've no doubt you'd likely show me love and compassion and maybe even ask if there were something you could do to make things better.

And hopefully, few if any of you would respond to my cries of anguish by telling me I'm imagining things or blowing them out of proportion, that I'm too serious, too sensitive, playing the victim, that I need to get over it, or that our situation doesn't matter nor does it warrant telling.

With this in mind, it never ceases to amaze me that when African Americans decry racism, police brutality, oppression and injustice, there are still those who respond with deflection, distraction, condemnation, disparagement and denial. Even in the face of mounting cell phone videos showing innocent Black men, women and children getting harassed, brutalized and killed by White cops and civilians, there are those who will claim that the victims are playing the "race card," must somehow be deserving of their mistreatment or demise, or that the offenses are anomalies.

Despite frequent anguished pleas, those steeped in racial bias or animus—whether consciously or not—condemn the ways in which Black people peacefully protest their oppression and the violence waged against them whether it be by taking a knee, taking the stage, taking the mic or taking to the streets. Others cling to ignorant and dismissive platitudes like, "All lives matter," a tone-deaf and hurtful retort to the more urgent maxim, "Black lives matter," even going so far as to create, share and repeat tasteless memes while innocent Black men, women and children are murdered with appalling frequency.

Despite cries for equality and reams of evidence supporting its disparity, there are still those who perpetuate rugged-individualist and bootstrap theories. They doubt, deny and turn a blind eye to the grim and profound effects of systemic racism, discrimination, and the maligning and marginalization of Black people. As a result of such offenses, African Americans are at higher risk of living in substandard housing, in food deserts, in cities with underfunded and crumbling schools and drinking water tainted with lead. And due to the fact that institutional racism exists at every level of government policy—education, housing, lending, healthcare, employment, criminal justice—African Americans are at disproportionately higher risk than White people of suffering from coronavirus and other diseases, infant and maternal mortality, police violence, arrest and incarceration.

The hardships raising my severely disabled son have never been questioned, even though most who claim to understand them cannot truly empathize. But somehow, the decades- and centuries-long protests by African Americans against injustices, fear and risk of bodily harm have historically—at least until more recently—gone unheard. Too many people remain entrenched in their denial of benefits they enjoy because of having white skin—a reality that in no way whatsoever discounts hard work and ingenuity and is nothing to be ashamed of. Perhaps fear or pride gets in the way of conceding that success isn't ever achieved in a vacuum. Maybe, like me, whiteness might have helped you get that decent education, that interview, that job, that apartment, that loan, that benefit of the doubt, that second chance. Maybe, like me, whiteness helped you skirt defeat, suspicion, catastrophe. And maybe—probably—whiteness helped you avoid the risk of getting stopped, questioned, arrested, your neck crushed under some cop's knee.

Protesting the killing of George Floyd, outside Brooklyn’s Barclay Center. Photo, Yunghi Kim/Contact Press Images

unrest

My teenage boy is speechless. He whines and howls and cries. Is he in pain? Is he soiled? Is he hungry? Bored, anxious, sad, confused, lonely, frustrated? Does he feel as if he's been treated unjustly? He must want so terribly to be heard, to be understood, perhaps even to be freed from his reality. He goes most crazy—fever pitch—just before a seizure hits, his brain attacked, his body racked with spasms. His protests are righteous, his message, deafening, just trying to get our help and attention.

Other voices are far more articulate in expressing their dissent of unarmed, shot or suffocated bodies left to languish alone in the streets, in cars, parks, subways and apartments. Their only offense: having black skin. 

Rodney King. Trayvon Martin. Sandra Bland. Tamir Rice. Freddie Gray. Aiyana Jones. Laquan McDonald. Alton Sterling. Michael Brown. Oscar Grant. Philando Castile. Eric Garner. Walter Scott. Renisha McBride. Ahmaud Arbery. Breonna Taylor. George Floyd.

Countless other priceless souls are stolen by White cops and vigilantes with tasers, guns and chokeholds. Knees pressed on necks. Bullets in backs of heads and chests, close range or while retreating. Only cell phones in their grip. Asleep in their beds. Driving to work. Playing in parks. Out for a jog. Asking for help. Watching television on the couch. 

The anger over their hurt and murder is mounting. Peaceful protestors choke the streets. Some take a knee. Others sit cross-legged, arms raised. Braids of Black and Brown and White bodies hold signs and cry out the names of those whose lives were stolen, echoing the phrases:

Hands up, don't shoot! Enough is enough! No justice, no peace! I can't breathe!

Decades have passed. Nothing changes. Another gruesome video inevitably emerges. Tensions and anger heighten. Black and Brown bodies are disproportionately lost in other ways because of systemic racism—cornonavirus, weathering, hypertension, diabetes, mass incarceration. When will justice be served?

MLK said a riot is the language of the unheard. Yet these are not riots. Rather, rebellions, uprisings, unrest. Demonstrators are not the enemy. Looting is not worse than being an innocent victim of a shooting. Cities strangled by unrest can recover; bodies strangled by cops cannot. These homicides are not anomalies. A barrel of bad apples can taint legions. Too many are rotten. Those seeds meant for breeding have cyanide, you know. Enough to go on killing innocents. Enough poison to spoil generations of Black families. Enough to deep-six the dreams of tomorrow's fathers, mothers, wives, sons, daughters.

White privilege exists. Well-off or poor, it has helped most get where they've gotten without getting racially profiled, unjustly stopped and frisked, pulled-over, harassed, stalked, suspected, questioned, arrested, trodden. I promise. I should know.

To protest systemic oppression is righteous. In plain sight, our Black brethren are being neglected, abused, maimed, scapegoated, murdered. And though our collective cries of injustice have been deafening, it's as if they're still unheard.

Stephanie Keith for The New York Times