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

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.

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

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.

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

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

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?

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.

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.

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