6.30.2020

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.

6.27.2020

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.

6.23.2020

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.

6.16.2020

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

6.11.2020

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

6.08.2020

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

6.03.2020

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

5.28.2020

brokenness

so much brokenness.

my child's brain. myriad hopes and dreams. promises. hearts. this nation. too many american families, homes and livelihoods. the criminal justice system. the federal pandemic response. all of this comes to mind in the dim, quiet moments while holding my son as he seizes.

so much brokenness. 

Calvin's strident seizure-gasps, like that of a death rattle. white police officers suffocating another black man—hands cuffed, face pressed hard into asphalt pleading, "i can't breathe." what is wrong with people?

so much brokenness. 

black joggers being stalked and shot. white women calling the cops on black men and making up dangerous stories about threats and assault. black people getting arrested on their own front porch, harassed on their campuses, in their library or dorm, in the foyer of their own apartment, shot while watching television in their homes. white men then questioning whether these blatant acts are racist. white men and women condemning black folks who take a knee to peacefully protest their ongoing oppression and violence against them. what is wrong with people?

so much brokenness. 

folks contemptuous of the act of wearing masks meant to protect those most at risk of exposure to this dangerous virus, like calvin. scornful of masks which are worn because we are supposed to care about and for each other. menacing men armed with AR-15s protesting government protective measures. a president stoking that very dissent. states opening up regardless of the virus' trajectory. folks congregating without masks as if uninfected or immune.

so much brokenness.

greed. corruption. deceit. wickedness. inequity. bigotry. bullying. conceit. narcissism. self-dealing. defrauding. sloth. petulance. recklessness. all these from our so-called leader(s). what is wrong with this man, these people?

so much brokenness.

and yet, that which is broken can usually be fixed. with love. truth. charity. patience. righteousness. courage. unity. science. knowledge. wisdom. ingenuity. leadership. accountability. selflessness. humanity. hope. kindness. compassion. empathy. like holding a broken child, a glimmer of dawn seeping through the shades as he seizes.

Merrilyn Downs prays over a memorial for George Floyd
Photo, Zach Boyden-Holmes, The Des Moines Register - USA TODAY Network

5.26.2020

bones

Every morning I wake with achy feet. Who knows why. Stretching my Achilles tendons helps. Perhaps I'm growing into my mother's soles and toes and various other arthritic bones perhaps exacerbated by having had six kids.

When turning my head I can hear and feel the grit and grind of gears in my neck, its sinews, bones, tissue and tendons as they crackle and pop like embers, or pebbles or sand underfoot. Should this be happening at fifty-six? My inner body is stiff—so unlike it used to be when both palms could press flat against the earth, shoes on, knees locked. My outer body is looser yet less elastic than in years past. And gravity is working on it. Thankfully, my aches and pains don't usually last; they linger a bit, then disappear and show up later in another limb or joint and, like the seasons, the cycle repeats.

To add insult, Calvin flails and grabs and stomps, his hands and fists forever flying in my face, rigid fingers clasping at the back of my neck, scratching and digging in. Changes in his loose routine are sometimes met with frenzy. Or maybe it's that his tummy hurts or that a seizure is "due." I wish I knew. In any case, his grousing chaps my nerves. His clawing dogs me. His restlessness never gives in. Because he does not adequately see or fear or walk or reason, I have no choice but to follow in his ceaseless steps. Daily, I ask myself how long I can keep up.

Lauren stops by to see the garden. I had invited her to come in by way of the field in back. While admiring the blooming rhododendrons and budding azaleas, she and her dog keep their distance. From under her straw hat, she notes the garden's control and structure, each shrub and tree's careful placement, the meticulous pruning meant to make their branches thick and sturdy, the deliberate design of limb and leaf and blossom to work in concert with each other.

"Your garden has bones," she says.

I tell her that they hold me up.

5.25.2020

vigil strange i kept on the field one night

Every Memorial Day I post this poem by Walt Whitman, and every year I think of those who have lost loved ones prematurely and senselessly. This year, along with honoring and remembering those lost to war, I mourn the nearly 100,000 Americans who have died from coronavirus, many of whom—in a better world—could have been spared.

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville

5.22.2020

just two

Suppressing my instinct to embrace her felt strange. It had been easily two months since we'd last met over coffee to discuss politics, writing, dreams, food. At a safe distance—more like ten feet than six—we took Smellie to the fields and made our way along the path through the woods, veering into the brush whenever we encountered others. It was only the second time since all this coronavirus craziness began that I met with a friend. As we strolled, we caught up on each other's goings-on, and that of our sons and husbands. We toyed with the idea of the four of us gathering for cocktails around a backyard fire, but neither could say when we'd feel comfortable enough. It seems there's still so much we don't know about this virus, and we worry about letting our guard down.

When we arrived back at the house, I considered offering her something to drink so we could sit and enjoy the dwindling afternoon sun in the garden. But I'd have to touch her glass, I thought to myself while trying to work out how I could logistically handle it safely. She told me she had to be on her way, anyway. So I walked her to her car and, from yards away, we gave each other air hugs, and I blew her a kiss goodbye as she drove off.

Later, I told Michael that though I loved seeing her face and visiting with her in person, it felt dispiriting to have to keep so far away from someone I like so much. There's something melancholy and alien—especially since I, like Calvin, am a very tactile person—about seeing beloveds but not being able to hug them. It's a feeling I don't get when I FaceTime with others, though there's a tinge of emptiness in doing that, too.

But until we feel in our bones and guts that it's safe to gather, drinks will be made for one couple. These chairs will be lounged in only by us. The garden will be visited by no other humans, except maybe in passing. The backyard fires will be warming just two.

5.19.2020

still sheltering

After a couple of months sheltering in place, and despite a rising coronavirus death toll, states are beginning to open again. Folks are lining up to get into their local barber, salon and drive-in. I heard that the ice cream stand up the road a spell was packed last weekend. I'm beginning to see groups of kids riding bikes together. Glorious weather is drawing neighbors outdoors. And while I miss our friends terribly, and long to gather with them, I'm still skittish.

Some folks are comfortable hanging outside in small clusters, their chairs spaced at what is thought a safe distance. Others are bringing childcare workers back into the fold. Many have continued to visit their extended family members—parents, grandparents, sons, daughters, in-laws. Some families have been "quarantining together" with other families all along—albeit not under one roof—citing their trust in one another despite evidence that wider circles exponentially increase the risk of getting the virus and spreading it to others.

Sunday, when I visited my friend outside for the first time since autumn, I kept my distance. He sat on one end of his ample porch, I on the other. When he sneezed, I pulled the collar of my jacket over my nose, envisioning the droplets hitching a ride on the wind. For months he's been receiving visitors on a daily basis, some of them frontline healthcare workers, others employed in various essential businesses potentially exposing them, and him, to the virus. So visiting him makes me a tad nervous.

As I watch the news unfold, I wonder how many of the brazen gun-toters protesting government shutdowns know that perhaps as many as half of infected people experience no symptoms while actively shedding the virus. Have they heard that small droplets can hang out in the air eight minutes, perhaps longer? Do they understand that wearing a mask is meant to protect others? When I explain to people why I am keeping such a distance, I wonder if they think I'm too zealous. Do they get how vulnerable Calvin is, or what a clusterfuck we'd be in if Michael or I were to get seriously ill? I mean, who would take care of Calvin if we were laid up, or worse? These questions lead my thoughts to little Charlotte Figi, a girl a lot like Calvin who died last month from complications of what was undoubtably Covid-19.

I feel there is so much we still don't know about this thing. We don't have a vaccine. We don't have a decent treatment. Immunity may be elusive; five sailors who fully recovered from it have recently become reinfected. And so, even though I'm eager to visit friends and host gatherings of our lovelies, for now I'll keep sheltering in. I'll continue to spend my days taking lots of short walks around the neighborhood and long car rides near the water with Calvin. I'll keep spending my mornings savoring time to myself in the woods walking Smellie and in the garden soaking up the beauty of flowers, hummingbirds and bumblebees, and dreaming. I'll keep looking forward to evenings with my husband who, thankfully and for a multitude of reasons, is the best person with whom I could ever find myself in quarantine.

Simpson's Point

5.15.2020

listening

Above the tick-tock of two old clocks, the rattle of storm windows, and the knock of radiators, I swear I can hear gas hissing through copper lines to the furnace downstairs. Outside, crows caw and cars rumble past, the traffic having picked up some since cities and towns are slowly opening, even as bodies pile up. In less than three months, there's been a staggering eighty-seven thousand coronavirus deaths—and counting—in this nation. The collective mourning must be deafening. Is anybody listening?

Through the southern windows, sun fades the back of the green couch where Calvin sleeps in our laps on the days after grand mals. He pulls my head into his, wants them nested together. I gladly accept. It gives me time to rest. Smellie pads over and plops her head on my leg where there's a free hand that can pet her. This will be how we will spend much of our day together.

If I were to sit up from here, I could nearly spy the gray fox if it were crossing our backyard. She's a wild-looking thing, low to the ground, grizzled and lean, a straight line going from snout to tail when she's hunkered down on the hunt. Once, I heard her screech like a woman or child being tortured. It gave me shivers. Though small—about the weight of a cat—if backed into a corner she might give our dog a run for her money. Luckily, Smellie's got seventy-five pounds going for her—the same as Calvin. Nature is crazy.

Peeking out the side window, I watch our neighbor's fifteen-month-old daughter who's already doing cartwheels around Calvin—walking down the sidewalk without holding her mother's hand, picking dandelions, tossing balls, waving at strangers. Recently, I wrote to someone about Calvin, telling them he's as much like a baby or toddler as a teen. Some things never change.

I'm almost drifting off when Calvin comes to. Such is the story of my life in this house. Rarely do I get more than a few minutes or hours of uninterrupted sleep or solitude, especially now. Never enough time to dream satisfyingly except when I'm walking in the woods with Smellie, hearing the woodpeckers drum, the songbirds warble, and the wind rush through the trees like a collective voice telling my mind to hush and not to worry—it's listening.

The end of the day finally arrives. In a cool shadow, I hear a bumble bee bounce off a window. They're huge this year for whatever reason. Earlier, I was able to dig three holes in the back corner of our yard and plant some arborvitaes. They look happy, as if the've been there forever, like trees yearn to be. As the sun sinks, there's almost no traffic. I notice again the clocks ticking and that same buzz or ring or hiss, though the furnace isn't running. I think it must be so quiet that what I'm hearing is just myself listening.

Photo by Michael Kolster

5.13.2020

so far not so good

Since Calvin got his first dose of Epidiolex—the plant-based pharmaceutical CBD oil—three-and-a-half weeks ago, he went eleven days between grand mals. But then he had four days in a row of seizures, a one-day break, followed by another grand mal this morning. In all, he's had five grand mals and, at the very least, three focal ones in that timespan. He seems to be under the weather, his foul breath indicative of some sort of illness which may have triggered the spell. Extra doses of my homemade THCA oil has worked well to keep any single seizure from clustering into more, and for that I am filled with gratitude.

Until I jump to any conclusions about the efficacy of the Epidiolex, I should mention that, prior to starting the drug late last month, Calvin had one pain episode of unknown source, plus four days in a row of seizures, most of them bad focal ones. I should also note that, with the neurologist's blessing of my stewardship, we began Calvin on a fraction of Epidiolex's recommended starting dose; Calvin started on 20 milligrams per day instead of 170 milligrams. Since then, we've increased his dose twice, and now he is taking 50 milligrams per day. So far, besides too many seizures, we have not seen any bad side effects—no insomnia, no diarrhea, no agitation, and definitely no loss of appetite—you'd never know it by looking at him, but The Kid can eat! And besides being sick and napping a lot, he's been pretty content, if not happy.

So, even though so far Calvin isn't doing so good seizure-wise, I hesitate to say it's because of the Epidiolex. It's really too soon to tell. Instead, I'll recross my fingers and knock on wood. Join me, will you?

5.09.2020

struggles

The snow hadn't yet begun to fall when I heard my son cry out at nine last night. I only half expected the seizure's arrival, this one in the wake of the full moon and a decent eleven days since his last grand mal. As usual, I crawled in bed next to him to make sure he kept breathing—the twenty minutes or so after a grand mal being the most risky to succumb to SUDEP (Sudden Unexpected Death in Epilepsy.) Just as I was falling asleep, Calvin clocked me in the face with his fist while he was shifting. I decided it was a good time to go sleep in the bed with Michael. Sadly, the extra THCA oil I'd given Calvin after the first seizure did not thwart the arrival of a second grand mal at 4:45 a.m. Perhaps it would have worked if I'd waited until midnight to administer it, but I was so goddamn tired I just couldn't.

By six the snow was coming down in gnat-like flakes, some of them floating upwards and crosswise as they neared the window. Like most everything in these coronavirus days, snow in May, even in Maine, is strange. Watching it come down, head on my pillow, I imagined it as some magical dust, some cooling off of the white-hot suffering, despair, frustration and anger many people are feeling during these essential shutdowns.

Slowly, I rose to see the garden, worrying that the young peony shoots might have been burned by the night's frost. Since yesterday, many blossoms have opened on the pink and purple small-leafed rhododendrons, a white one having already beat them to it. The garden is gradually coming into it's glory, even as deciduous trees are still mostly naked, save some tiny leaf buds emerging.

As if winter, today has been spent indoors trying my best to help my suffering kid feel better. He's not back to baseline, is more restless than usual, has clammy hands, stinky breath, foamy drool and no appetite to speak of. I'm tired and achy, and the sore throat I developed the other day is only slightly better. Still, looking out over the garden, the snow having finally given up without sticking, I'm feeling grateful. I have a house chock-full of windows, a gorgeous garden to devour and in which to wander, a sweet and loving husband who does all of the cooking, friends who leave delicious care packages on our porch, good books and films to lose myself in, and the privilege of not being a frontline healthcare or other essential worker during this pandemic.

But despite all there is to be grateful for, I'm still nervous about what is going on in this country, and ashamed of some Americans' behavior. It vexes me to hear that grocery store employees are being harassed by customers who do not want to follow state guidelines for wearing masks in public. I'm incensed at the ongoing lies, backpedaling, blame-shifting, cronyism and hypocrisy coming from the White House. I'm sickened by the news of hate crimes—so many still going unpunished—of innocent Black and Brown people who, amid their ongoing oppression, are disproportionately affected by this pandemic.

Outside, it's still below forty, though with winds at eighteen miles per hour it feels like the Arctic. But I'm sitting here at my desk with a view of the garden. Michael is home taking care of Calvin, who is doing slightly better and will be heading upstairs to bed fairly soon. I've just lit a fire in the wood stove and poured Michael and I a couple of early cocktails. Later, we'll warm up some ridiculously delicious chicken enchiladas with spicy salsa verde, and discuss the messed-up state of the nation. Then, we'll muse on gratitude, and I'll go to bed early and tired, though hopefully not pitying the situation with our own messed-up kid, but rather sympathetic for those out there in the world who are truly struggling.

5.07.2020

collective breath

On the way to Woody's, walking hand in hand with Calvin and Smellie, a friend approached on the other side of the street riding his bicycle. We shouted above a passing car or two, then he peddled across and stopped a safe distance in front of us. After chatting a bit, I asked how he and his family were doing.

"Oh, we're struggling," he said in a resigned tone.

My heart sunk.

"Yes, everyone is struggling in their own way," I replied.

He smiled, put his head down to find his peddle and nodded. We said fond goodbyes as he rode off.

When Calvin, Smellie and I reached Woody's house, I called him on the phone. When he picked up, and from opposite sides of his window, we complained about the biting wind, and I told him about my conversation with the neighbor. Woody's silence made me think he agreed that life is strange and difficult right now.

I've been thinking about the tens of millions of unemployed Americans struggling to make ends meet. While I believe we need to continue to shelter in place to mitigate the stress on the healthcare system, I'm sympathetic to the need for hurting people to get back to work. So, too, I've been lamenting those who are sick and suffering and who have lost loved ones to this insane virus. I've been missing seeing friends, gathering around a table to share food and drink and to shoot the shit from across a table. I miss the college students terribly; their absence is palpable and I know it has been hard on them to be away this semester. I feel things have been particularly devastating to doctors, nurses and teachers, especially those with young families.

Strolling home from Woody's house, Calvin turned to me for a hug, and while I embraced him I took a deep, collective breath for everyone.

5.05.2020

wanderings

Nowhere to go. Nothing to do. No one to see. Awake at night fretting. Has the moon always shone through that singular window, or have the trees thinned as they've gotten older?

Days drag. Monotony seats itself and stays. In the meantime, patience wanes. Adult becomes child. Child becomes fiend. Words hurt, even as they come forth from the throat and pass the lips, and like the sharp slap of a hand, they sting. Infinity is marching in circles. While time expands, space compresses. Still, there's too little room for minds and feet to wander aimlessly or with purpose.

As if overnight, bodies weather. That shock of grey, that spray of flecks, that crepey skin. What matters? Things feel so unchanged, and yet alien. Is happiness so fleeting, despair something to cling to like wrapping arms around a tree when bodies are off limits? Which bark serves us—smooth, so that we don't feel too much, or rugged, to remind us we are not alone in bearing scars and hardships?

Mouths hunger even when the gut doesn't. Food—or its refusal—is a steadfast companion for stress and worry. At times there's no filling that inner pit. At others, emptiness and abstinence quench.

A face unseen for mere days looks akin to one that's been missing for ages. Under a cap, mask at her chin, is she familiar or somehow foreign? And who is inside this body? Someone new? Or the same ole tired one, perhaps emerging from a long facade of optimism. Are we coming undone, or being remade?

How many days has this shirt been worn, this exact path been trod, these same backroads been traveled along? Wear the garment inside out and it's altogether different—raw-edged as if neglected, or perhaps well loved. Meander the path and roads in the opposite direction and stumble upon an unseen landscape. So many missed vistas to discover.

Forgiveness. For ourselves. For others. It is possible, even easy, like bending a sapling nearly in half without a break or splinter. Inside, we're that tender. If anything, the sheath may give way, revealing a heart rarely seen, like a moon held between branches, or a wooded path roamed in the opposite direction.

Photo by Michael Kolster

4.30.2020

i can hardly wait

I can hardly wait to belly up to the bar with my husband or girlfriends and order from my favorite female bartenders some wine and fries and Rita Hayworths or beet yuzu martinis while nibbling fish tacos or Asian slaw with peanut sauce.

I can hardly wait to stroll in the woods with Smellie while she's off leash chasing squirrels. I can hardly wait to jog along the college trails without swerving wide to the left and right to avoid others' breath which might be drifting on the wind, (and to feel rested enough to do so.)

Someday soon I hope I'll be setting the table for four or six or eight, lighting candles, putting out the weathered red napkins on top of the handmade placemats we got from friends we don't see anymore. Hopefully, in the not-too-distant future I'll be making a big batch of my famous salad with mixed greens and little orange tomatoes and crumbled blue cheese with chopped red onion and avocado plus our favorite cheesy garlic croutons drizzled with Michael's delicious mustardy salad dressing. As soon as it's safe, I'll be delighted to greet our go-to guests arriving with just-mixed cocktails, bottles of wine, impossible cakes, home-foraged mushrooms, and wicked-smart, funny, deep, frivolous, intellectual and bawdy conversation.

I'm still holding my breath for Calvin to stop having seizures, or at least too many of them (which is more than one), and for the federal government to legalize cannabis so that dispensaries can do business with banks and some day maybe medical insurance will cover it.

Goddammit.

I'm so ready to dance to funky music in our kitchen, elbow-to-elbow with all of my peeps laughing and munching and swerving and sipping and shouting and writhing and delighting in each other's company.

I can hardly wait to have friends commune with us in the garden, to gather around a fire at twilight, to see the smoke settle in the field behind our house, the same field where not that long ago I waved at the college students passing by. I'm ready to host potlucks and barbecues and cocktail parties and to have a fabulous mess to clean up while drinking my coffee the next morning.

Like you, I can hardly wait for all of this coronavirus craziness to be over. I hope it will be soon. Until then, we just have to be smart and cautious—more so than The Unhinged One and his Unmasked Veep—and wait a bit longer to see our besties right up close.

In the meantime, call us. We're pretty much always home.

Homies, Luke, Jacob and Sarah.

4.26.2020

looking glass

Emerging from the foreground is a blue-and-white-striped duvet folded neatly and laid upon an ivory coverlet. On the other side of the glass, to the left, sits my eighty-seven-year-old buddy, Woody. The reflection of the outside world is too vivid to see him reclined in the shadows, but he's there. Behind my figure is the house in which Mike lives, my ninety-seven-year-old widower-friend whom I haven't seen in several days and whose voicemail is full when I call.

It's nearly five o'clock. Michael just got home after a day of printing the photographs he took while in Paris, Hawaii and Lisbon Falls, Maine, which is just up the river a spell. It feels weird that travel isn't really possible or advisable now. Smellie is somewhere in Woody's yard, her leash trailing behind her as she trees squirrels.

The way we connect in this crazy coronavirus time is strange—by phone, by FaceTime, through bandana masks, from across the street, and from the opposite sides of storm windows.

Before I literally look in on Woody, I ask him, in the manner of my late father, if he is decent. He chuckles. I walk around the back of his house to his den. Though I can barely see him through the glare, we joke on the phone about how strange it might look to the neighbors to see a woman peering into his home through a side window. I told him that for me to do so seems completely normal. Through the glass, we tease and laugh. I wish I could hug him like I used to. Maybe in warmer weather we'll again be sitting on his front porch together sipping bourbon and ginger ale, watching passersby, discussing birds and neighbors and politics, even if from a safe distance. I hope so.

Later, Michael and I speak with our buddies on FaceTime, first Jim, then Matty. Jim makes me laugh until I nearly wet my pants. Clever little devil, and with a face as earnest as any young fellow. He told us so. I wish Jim and San Francisco weren't three-thousand miles away from us. And I miss Matty's frequent visits, along with dozens of others. Because of the coronavirus, everything is so beyond what we've come to understand as normal.

I've been making an effort to see one or two loved ones' faces and or hear their voices on the phone every day or so. For me, these quarantine times require it in order to get through without too much despair seeping into the long hours. The news cycle and state of things and The Unhinged One are crazy, fascinating and outlandish, like looking at an image and not really knowing or understanding what you're seeing and what might be hidden in the shadows. And yet, the rest of the world and its people are so beautiful.

4.21.2020

trying epidiolex

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

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

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

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

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

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

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

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

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

Calvin coming out of a seizure, August 2014

4.18.2020

invisible giant

Walking Calvin around the block yesterday felt like dragging a stubborn dog. He'd start and stop, swerve and hitch, sometimes weaving behind me even as I held onto his wrist. At one point he pivoted and fell onto his back at the edge of the sidewalk. Since my right hand had Smellie by the collar, I wasn't able to prevent his fall. Still, I was able to let him down slowly so he didn't hurt himself. Then, he wouldn't budge, so I had to lift him back up. I became frustrated, let Smellie go (she's such a good dog) and yanked my careening kid the rest of the way home.

Thankfully, the remainder of the day was mellow, consisting of a nice car ride and lots of cuddling. While putting on Calvin's nighttime diaper I asked him if he was tired, and he made a little hum. He fell asleep as soon as his head hit the pillow.

After sleeping soundly, Calvin aroused at eleven p.m. in the thralls of a focal seizure, wide-eyed, restless and trembling terribly. I dripped some THCA cannabis oil into his mouth and held his head so the oil had time to absorb and so he wouldn't drool it out. I took his temperature, changed a soaking diaper, then crawled into bed with him. Three hours later this repeated, and a third time an hour after that. At four-thirty I gave him his morning Keppra hoping to avoid more fits, but the strategy didn't work and at five o'clock he had the worst focal seizure yet. As I was reaching to turn on the light, Calvin, in the middle of the seizure, began to sit up, put his hand on the side of the bed, slipped and fell out. I halfway caught him, softening his fall but not before his lip caught the sharp corner of the wooden step stool. Michael helped me pick him up and put him onto the changing table where I syringed in his morning cannabis oil, noting a lip that was bleeding and beginning to swell. The seizure began to worsen. His tremors became so violent he looked as if he were a rag doll being shaken by an invisible giant. Something akin to fear filled his eyes as he kicked the arm of the lamp clamped to the end of his changing table. I put my arms around his neck and held him closely until his trembling ebbed then quit.

When it was over, I crawled back into bed with him, lamenting so many seizures amid what had been shaping up to be another good month. Stroking Calvin's face in search of possible fever, my thoughts drifted to the little girl so much like Calvin who died last week from likely complications of the coronavirus. Her name was Charlotte Figi. She was thirteen years old and, without knowing it, had become the face of CBD oil as therapy for epilepsy. Her mother, Paige, had been my mentor of sorts—one of only two parents I knew of who were treating their children's seizures with cannabis. She had suggested different strains of the herb with which I could make my own oil (this was years before it could be ordered online and shipped) and she walked me through how to safely wean Calvin's benzodiazepine. As I embraced my son, I wondered what this dutiful and loving mother, this pioneer and champion for so many, was feeling. I wondered when she might begin to feel relief from the loss of such an extraordinary child who filled so much space with her brightness. I wondered if she felt any modicum of solace in knowing that the invisible giant which is epilepsy no longer haunts and harms her daughter. I wondered if, one way or another, Calvin and I will ever feel that same peace.

Photo by Michael Kolster

4.17.2020

nothing to do

My nonverbal disabled son and I are a couple of goddamn pros at sheltering in place with nothing to do. Seriously. Calvin and I can't play cards or board games or solve jigsaw puzzles. We can't watch movies together because he doesn't attend and can't sit still. We can't draw pictures, work crosswords or write haiku. We can't make funny videos and share them with others. He can't text or FaceTime with friends even if he had friends. We can't sit quietly in the sun and read our own books. We can't walk the dog together or throw her a ball. Though he is sixteen, I can't use this time to teach him how to drive a car. We can't ride bikes or bake bread or pop popcorn. He can't sit and play video games for hours on end. He can't climb trees in the back yard or help me rake or weed or pick up downed limbs and twigs or plant seedlings, water them and watch them grow. We can't dance together to our favorite tunes or talk about what this crazy coronavirus time means to each of us or how it makes us feel. I can't explain to him my indignation that some folks still think healthcare is a privilege, that others gripe about things like raising the minimum wage or paying teachers more. I can't describe my love for the all that is good in the natural and civilized world and for my good peeps, nor my contempt for things like voter suppression, corporate welfare and greed, inequity, xenophobia, racism, sexism and misogyny, and the reckless, backwards, ignorant, deceitful, egocentric, shameless, conceited, crooked, self-dealing, cowardly, lame-ass president.

Nope. Can't do any of it.

Instead, Calvin and I sit on the green couch and cuddle for a few seconds or minutes—as long as he can sit still—then I pad behind him in circles, sit back down on the green couch and do it all again. This cycle happens umpteen times within any given hour on and off all day long. When he wants a bath I give it to him. I help him out of his clothes and diaper. He sits there in the warm water biting his Oball, spinning and splashing and putting his face in the water, holding his breath or drinking it time and again. I help him out and dry him off and help him put on his clothes. I pry him into and out of his shrinking johnny-jump-up so he can spin in that too. I help him in and out of his bed where he plays with his Sesame Street cell phone and other toys made for babies. I give him lots and lots of hugs and kisses and tickles. I spoon-feed him and dole out finger foods, but not too quickly lest he choke. Most days, we go on long car rides to places where we can nearly glimpse the open sea, though I'm not sure he sees it. We take frequent short loops around the neighborhood and garden. I hold his hand most of the time so he doesn't careen into the street or fall into a shrub. Sometimes, he'll perch on one of the backyard benches trying his best to stare at the sun. When I sit next to him he puts his arms around my neck. If I'm lucky, I get a kiss or two, maybe more.

During this coronavirus shutdown, as in any other time, I wake at night to lay my sleep-sitting son back down and cover him since he can't manage to himself. I give him extra homemade cannabis oil if I sense a seizure coming. If he begins to moan and shriek and sob and writhe like the other night I give him acetaminophen, usually in suppository form, and then wonder what else I can do to stop his misery. With Michael, I hold him while he seizes. I note his ashen skin and blueish fingers. Afterwards, when he's back to breathing, though irregularly, I slip him more cannabis oil to avoid a repeat. I crawl into bed next to him. My palm on his chest, I feel his heart pound, his ribs rise and fall. Together, we drift off to sleep.

Yep. We've been practicing this sheltering in place for sixteen years. No place to go. Nothing to do. No one to do it with while Michael is hard at work in his studio. The two places Calvin liked to frequent—the grocery store and the coffee shop—are now off limits. We've become a couple of goddamn pros, and though I always hope for release from our unique imprisonment, it's probably not going to happen any time soon. So, in this coronavirus quarantine, I guess we're lucky that for us it's relatively easy to do.

Calvin giving me a kiss

4.14.2020

to my peeps

In this crazy coronavirus time, in-between changing my sixteen-year-old's diapers, bathing him, dressing him, feeding him and taking him for long car rides and short walks, I find I have a lot of time to muse on gratitude—for this house in this small town, for a garden emerging from winter, for my adorable impossible child, for a cozy bed, a wood stove, for music, tenderness, humor, deep and silly conversation, engrossing films, delicious food, good drink.

Mostly, though, I am grateful for my peeps.

I'm grateful for Michael, my best champion who takes great care of us, is a loving husband and father, has a very good brain, is a talented photographer, a magnificent chef, and loves my attempts at humor. I'm grateful for so many childhood friends, for the gal I've known the longest who understands me better than most siblings, for the unwavering all-weather swimmer who thinks of me often and from afar, and for the sister-mermaid to whom my heart is tethered forever. I'm thankful for the gentle brother who shares my birthday and life philosophy, and for the chickee who, because of her family's own situation, genuinely empathizes with ours. I'm grateful for my thoughtful pal who visited us in Maine, and sends us care packages every October. I can seriously talk and joke with these people for hours. I'm full of adoration for the scores of rock-solid folks who grew up in nearby homes and neighborhoods and schools, for first crushes and former boyfriends whom I still love righteously, for my amazing teammates from summer league, year-round, high school and college swimming, for the swimmers I coached while in my late teens, and the gal who assisted me. Thanks for keeping in touch, y'all.

Big love goes out to the folks I got to know during my decade in San Francisco—for the blond mama who makes me laugh until I pee my pants, weep and dream like crazy, for my former Ashbury Street flatmates who help me view the world through different lenses, for the friends of Michael's who have become like brothers, most who have made trips to see us here in Maine, some who have graced us with their lovely families. I adore the San Francisco native who was my steward in exploring the place and capturing it in photos, and the soul mate who helped me through a rough breakup and who kills me with his wit and affection. I'm grateful for my beloved and funky former upstairs neighbors who are so much more than that and who still host and celebrate me when I visit, and for the oodles of terrific people I met through them. I thank my lucky stars for the gifted women and men I worked alongside at Levi Strauss, in pattern making class and other apparel industry companies with whom I've forged deep and lasting friendships, and for untold other lovelies I hung out with while thriving in one of the most special and spectacular places on earth. I left a piece of my heart out there, so thanks for giving me part of yours.

I dote on so many friendships made in this small college town in Maine, on heaps of Michael's colleagues, former colleagues, students and others. There's the witty Irishman who does the funny accents, brings us bouquets and beers and shoots the shit with us for hours, the chick who makes outrageous cakes and, with her fabulous man, leads the shortlist of stupendous couples who wage the best kind of home invasions. There's the steadfast man who so often gifts us with his humor and love, facts and fabulousness, who takes my shit yet still looks after me when Michael's gone. There's the sometimes fragile, always authentic and hilarious couple who lift our spirits and understand us like no other. There's the sisters who are always there to listen to my dreams and despair, triumphs and troubles—the one who dreams about Calvin and mixes killer cocktails and salads in her kitchen, the one who always shares an Asian slaw, beet yuzu martini and potstickers at the bar, the ones who meet up with me over coffee or wine to discuss everything deep and frivolous. These women love and accept me as I am, flaws and all. I praise the sage who keeps me fed with farm stand pies and fruit bars while we discuss soup to nuts tangentially. I honor those who walk Smellie, visit me when I'm home alone with Calvin, take my husband fishing, deliver vegetables and flowers and egg nog and hugs and homemade bread and salve, and those who include us in their gatherings and parties. I cherish our ridiculously generous go-to guests who love us recklessly, make us cocktails, dine at our table and go home semi-early (heh heh.) I praise the lovelies who bring me to tears, and those who have sat or stayed with me at night when Michael's out of town. And, I'm ever grateful for the mates who moved here, stayed awhile, then sadly moved away. We shared stories and food and jokes and bourbon and croutons and failures and troubles and dreams and triumphs. I miss you sorely.

I bow my head in solidarity and love to the mothers of kids with epilepsy, especially those in the medical cannabis world, some whom I've learned from, all whom I've grown to love and respect so much. And to all the lovely people who I met in the in-between.

But I'm not done yet. I'm grateful, too, for Calvin's former pediatrician, his primary care provider, his nurses and his caregiver who we are keeping a distance from for now, and for so many great neighbors—ones who shovel our driveway and who, before coronavirus, used to drop by impromptu. There's my favorite huggable republican and his wife of so many juicy tomatoes, the fellow gardeners across the street, next door and down the block a spell. There are lovely families and retirees and professors and loners who share this long block, including my eighty-seven-year-old pal, Woody, with whom I visit daily, now via telephone from the opposite side of his window. Thank you all.

And, dear readers, I count you on my list of those I'm deeply grateful for.

Seriously, there are too many amazing peeps for me to count! You know who you are. You are thought of fondly and often, and you rock my world. Stay safe in this crazy coronavirus time. More so, keep in touch.

My buddy Woody.