gut punches (and others)

Reading the news Friday night felt like a gut punch.

"Oh, no!" I cried out, upon learning of Supreme Court Justice Ruth Bader Ginsburg's death, my verbal reaction reminiscent of Michael's response when he heard that a dear friend had taken his own life.

On the heels of my grief and disappointment over the news of RBG's passing came the regrettable recognition that the current administration would move quickly to replace her, no doubt with a nominee apt to, at the very least, kill the Affordable Care Act and its mandate covering preexisting conditions, broaden avenues for continued voter suppression, and subvert (further) the body autonomy of American women.

My mind went into a frenzy recalling myths about abortion and the ways in which conservative men, for the most part, have for decades worked hard to politicize and legislate (away) women's reproductive health and freedom by limiting access to birth control, and by further diminishing the reasonably small window in which most abortions are allowed to be performed. Republican-led, mostly-male legislatures continue their aim to tighten regulations and mount burdensome hurdles so as to strictly limit the number of the nation's abortion clinics making it difficult for women, especially those who are poor, to access safe and legal procedures. Consider, too, the disingenuous pro-life claims, borne out in attempts to stifle proven, best methods of preventing unplanned pregnancies and abortion, such as free and accessible contraception, family planning and comprehensive sex education. Despite the fact that neither the Old Testament nor the New mentions abortion—not one word—many people cite their religious beliefs as the basis to condemn it. Noteworthy, too, is that Christian women make up nearly two-thirds of those who choose to have an abortion.

I became further vexed pondering the fact that many who profess their belief in the sanctity of life also support capital punishment—state-sanctioned murder—while still others suggest allowing abortion in the case of rape or incest, thereby belying their pro-life claims. And what of the growing number of Americans like me who aren't religious, who don't buy into the notion that a zygote or fetus has more rights than its pregnant mother, who don't condone the legislative and punitive coercion of women to carry unintended pregnancies to term? Should the religious freedom of some Americans supersede the basic human rights of others? I don't think so. Moreover, consider the fate of malformed fetuses which will endure brief though agonizing lives if their mothers and fathers are not allowed the option of sparing them certain pain and suffering after birth.

All the while—incomprehensibly, if not for the current patriarchal paradigm—the subject of making accountable the male impregnators never seems to enter the political discourse or legislative debate regarding abortion. How convenient. This continued strangling of women's reproductive rights and personal empowerment and freedom is insufferable—a literal and figurative gut punch. And the stomach-churning truth is that now, with RBG's death, the specter of yet another diehard conservative on the Supreme Court makes women's hard-fought sovereignty as precarious as ever.

Obviously, I'm pro-choice, which is not the same as pro-abortion. However, were I aware early in my pregnancy the extent to which Calvin's brain anomaly would lead to his miseries, I wonder what I would have done. I think I know, but I can't be certain. Regardless, I don't believe I have the right to decide the outcome of other women's planned or unplanned pregnancies, which impact their mental and physical well-being, the stability of their families, the trajectory of their careers, and the health risks to themselves and/or their unborn.

At a time when over three-quarters of all Americans support a woman's right to choose, and when one in four American women access abortion, the passing of Justice Ruth Bader Ginsburg leaves American women vulnerable to a handful of privileged, conservative, male, Supreme Court justices, all with Catholic roots. As deft as these conservative justices are on the Bench, I have my doubts that they are capable of fully considering, from a woman's unique perspective, the sweeping risks and considerations, the threat to very private, personal and constitutional freedoms and equal access to life, liberty and the pursuit of happiness that unintended, unhealthy or hopeless pregnancies—or a government mandate to take those pregnancies to term—may represent.

As I mused on the terrible dilemma of losing one of America's best champions of gender, religious and racial equality, I recalled The Notorious RBG's use of a statement by the abolitionist, Sarah Grimké:

I ask no favor for my sex; all I ask of our brethren is that they take their feet from off our necks.

This November, get out there and vote. Know how to vote in your state. Vote early. Vote by mail. Complete your ballot carefully and put it in your city's drop box. Be prepared for long lines if you vote in person. Vote as if your healthcare is in peril. Vote as if your or your partner's reproductive rights are at risk. Vote as if corporations have more rights than you do. Vote as if your right to vote is in jeopardy. It's all hanging in the balance.

Now is not the time to pull any punches.

keep on truckin' (toward justice)

Sweat trickles down my ribs. It's warmer outside than I guessed, but cool enough for a walk. I lead my son out the door, down the deck steps, then out to the field in back. Strolls with him have been more rare this summer than I'd like; it has just been too damn hot. As soon as we hit the path he balks. Yet again, I have to yank him along to keep him from trying to drop. With his left finger in his mouth, he looks slightly peaked and flushed, but nearing our goal, I refuse to give up. I keep on truckin'.

There used to be a time when Calvin could hold my hand and walk with little trouble. His gait was better, his balance more sure, his forward momentum, dependable. Now, if I don't tug him along, he stops in his tracks and stares at the sun. Sometimes he teeters backwards and I must catch his fall. The entire way I have to right him when he careens and stumbles. I worry that his brain's epileptic assaults are impeding his progression.

We just barely manage to make it around two corners and past Woody's empty house, but by the end of it I'm cursing and beginning to sob. I want to scream and punch a wall. So many hours, so many years, so many obstacles, yet so little progress. What a difficult, stressful situation, I think to myself, his and mine. It takes Calvin part of forever to scale the four back steps. I'm despondent. Spent. Empty. I'm weary of other, stupid, niggling troubles. Our nation is a hot mess—a reckless president whose mixed messages, indifference and neglect has led to a largely uncontrolled pandemic with 180,000 dead, a faltering economy, mass unemployment leading to millions without healthcare, civil unrest—and yet some folks want four more years of him. Black men, women and children keep getting shot by cops and vigilantes, their necks crushed by knees and chokeholds until they pass. Away. Beyond. Gone. Though these heinous incidents are legion, too many people still insist they're anomalies. But where are the scores of videos of unarmed White folks getting killed by cops? White-supremacist mass shooters and vigilante killers are handled with kid gloves, even as they tote the guns used to shoot people. They're described by some as "patriots" and "mother's sons," the latest's right-wing backers praising him for being executioner. Black victims, on the other hand, are routinely maligned as thugs. Their histories are picked apart and tarnished, their whereabouts, motives and movements questioned even after their lives have been tragically and unjustly snuffed out. Enough is enough.

As I reread the start of my last paragraph, I'm reminded of the civil rights fight in this nation. It is eternal. Burdensome. Exhausting. In too many ways, regrettably fruitless. Attaining racial justice in this country is a slog. A part of forever has passed, yet too many people still insist on being arbiters of the oppressed—deciding their truths, how they speak, where and how they should live, where and how they move, behave, dress, celebrate, grieve, protest, vote, perish. I understand Black anger and anguish to be immeasurable, something most of the rest of us can't fully grasp, save the indigenous who continue to fight similar injustices.

Calvin and my imperfect, burdensome life-walk is lamentable. But there are those who face worse dangers, stresses and impediments because of implicit bias, societal and systemic racism—we're talking cumulative trauma over 400 years. I think of the righteous who have the decency—not to be confused with courage—to proclaim that Black lives matter, and to protest the gross inequity we see played out daily in housing, healthcare, education, employment, voting, policing, courts and prisons. Though painfully slow and halting, there is a forward momentum toward racial justice which must advance for our nation to live up to its original promises. To attain it, we have to be fearless. We have to be relentless in our efforts. We can't give up.

As Reverend Dr. Martin Luther King, Jr. said, The long arc of the moral universe bends toward justice. Perhaps it's just around the corner, so keep on truckin'.

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.

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.

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

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.

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

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

not easy

Life's not easy, especially of recent. The coronavirus pandemic is wreaking havoc with our world. We're all facing hardship and uncertainty of one kind or another. Will we or our loved ones get sick? Will we have enough food? How will we pay our bills? When will physical distancing ease up? Will life go back to normal? When will we be able to have dinner parties?

Meanwhile, in India, millions of migrant workers are trekking outrageous distances—some 500 miles or more while wearing flip flops—to return to their villages after losing their jobs in the cities. Some have died along the way from starvation and exhaustion. In this nation as in others, refugees crammed in camps have no protection from the coronavirus. Some Americans are still not heeding physical distancing. Too many so-called leaders have been, and continue to be, slow to react to the crisis. Domestic violence is on the rise. Some nations are still in the thralls of civil war.

Because of these worries and stresses, at times I find myself more on edge taking care of Calvin while he is out of school and without his nurses here to help me. Thankfully, Michael is doing all of the grocery shopping and cooking, and taking care of Calvin so I can walk Smellie or do a little writing. Life for us, though historically protracted because our disabled child expands time in ways which are sometimes vexing and at others a blessing, has slowed even further now that we are on lockdown. Days feel longer and more monotonous, especially if we're trapped inside because of the weather. But I'm quickly getting back into the groove of taking care of him for hours and days on end, and I can see its benefits in the gift of having to practice mindfulness and the bringing into sharper focus what is both trivial and important. And, it helps that it has been nineteen days since Calvin's last grand mal, thanks, at least in part, to THCA.

This change in routine has prompted me to reflect on my own parents. I long for them—Dad who died twenty-four years ago, and Mom back in 2015. I wonder how my mother survived being at home alone all day when resources were thin, friends were scarce, and my father was away at work—one stint for months—leaving her with a six-year-old, a four-year-old, a three-year-old, a two-year-old and a newborn. How did she shop and clean and cook and wash and feed them and deal with poopy diapers all by herself? Then, four years later, I was born. Raising so many children must have been hell for her, and yet rarely did I ever see her lose her shit.

The gravity of this pandemic and the strict measures to contain it will no doubt heighten passions. Those emotions, like any, are real and valid, though perhaps now more fragile. I try hard to be patient and understanding with Calvin when he begins to chap my nerves. When he is screeching, my selfish instinct is to tell him to hush up, to say that he doesn't need to behave in the manic way he does. But what do I know about the way he feels? Not much. How could I? I can't get inside his head or his body to know how he is feeling physically or emotionally. What do I know? And so, now that I'm with him all day long, I've been trying to slow down, to meet his eruptions with love and affection, with as much understanding and sensitivity as I can muster. But when I fail, which I do often, I'll ask him for forgiveness and, in his own way, he'll give it to me willingly. He always does. We should do that for ourselves and for each other.

snow day blues

When I take showers I turn on the baby monitor so I can hear Calvin in his room down the hall. He plays in his safety bed with a bunch of his favorite toys—Sesame Street cell phone, crocheted rabbit rattle, Oball football and other light-up, musical toys. Today, he is doing all sorts of vocalizing—screeching, grousing, cooing. When he coos he sounds like a big baby, which in ways, though he is sixteen, is just what he still is. When I hear his happy sounds, I imagine how awful it would be if he got sick. I feel my eyes sting and well up with tears wondering if we'll be able to fend off this flu.

Last night we got about a half foot of heavy snow. I wish Calvin and I could go outside and build snowmen and women and make snow angels. I wish we could go cross-country skiing at the fields and through the woods. I wish I could feel safe taking him to the grocery store, which is one of the two places he likes to go. The other is Cafe Creme, which is closed to indoor seating but, like many local establishments, is offering food and drinks to go.

Hopefully the town, which has been practically shuttered, will clear the sidewalks soon. Hopefully the snow will melt quickly; Calvin cannot walk well in deep snow or slush.

This coronavirus shit is getting real. The projected numbers are sobering at best. There is a massive shortage of ventilators and masks for sick people and health care workers. GOP senators are trying to funnel money to their rich constituents and corporate backers, twisting the truth to fit the absurd narrative their so-called leader tweeted so recklessly, "Democrats want the virus to win," when what Democrats are trying to do is to get a win for the average American worker. The Occupant is still lying to the American people, trying to save face, shifting blame, playing down the pandemic to secure his reelection and the solvency of his private businesses. Too many Americans put their faith in the Charlatan instead of in the scientists and experts who know and tell the truth.

I towel off and get dressed. Calvin is "singing" from his bed. Though he sounds happy for now, I feel sorry for him and for us, what with little to nothing to do. I imagine he is bored, but I guess that should be the least of my worries. We've got to take it one day at a time, even when it snows.

On my way to the fields

sheltering in place

Sheltering in place. Stuck at home. Missing school. In our current circumstance, we can't go to the movies. Can't browse our favorite stores. Concerts and birthday parties and day camp and sleepovers aren't options. Can't go out for family dinners at our favorite restaurants. Can't do play dates. Can't go to the playground to swing or climb on the equipment. Can't go on vacations or spend the night away while someone else babysits. Not yet, anyway.

Stuck at home for what is and will be hours and days and weeks and months on end—for the foreseeable future considering the state of things. We can listen to music, turn on the news, call friends, read a few chapters, write a little. We can do house chores, take naps and long showers, enjoy films, go to bed early. We can watch our offspring play alone. We can cook and eat and drink. Weather permitting, we can take walks in the neighborhood. We can go on long car rides. We can stroll through the woods. Mostly, though, we're stuck at home.

Visiting friends for family dinners isn't an option. Going to the grocer is a challenge. They're frequently out of what we need, often when we need it most. When we do go, other shoppers regard us with suspicion. We have to steer clear of touching certain surfaces, especially since some of us so often touch our face and mouths.

Times are strange. Life is hard. Welcome to our world.

As the parents of a non-verbal, incontinent, impatient, unsteady, severely developmentally-delayed teenager with autism and frequent seizures who is often loud, can't sit still or play with others, touches and mouths everything including his fingers, and who sleeps in a special safety bed, we've lived the way I've just described—stuck at home, mostly, with little else to do—for sixteen years. Thankfully, in great part because of the love and support of others, I've survived and remain mostly sane.

That's why I'm convinced, in this strange and scary time of coronavirus, you can too.

Call me if you need a pep talk. I'll most likely be at home.

Photo  (screenshot) by Michael Kolster

inevitable

While walking Smellie today I saw a pair of morning doves perched on a stump. These are not the kind of birds I see all winter. In a sunny patch near the house, crocuses are just coming up. And while there is still snow on the ground, I feel spring is inevitable. Days are getting longer. The weather is milder. The sun is higher. Soon, perhaps, I'll be sitting with Woody on his sunny front porch sipping a rare bourbon. Perhaps with the thaw will come the ever-so-slightly lessening of viruses. For now, however, outbreaks seem inevitable.

I've no doubt right now the birds are building nests in hidden places around us. Though the earth is still frozen, I've got plans to move a couple-few plants as soon as it softens. When I can, I'm taking longer walks, trying my best not to wipe out on the swaths of ice still coating large sections in the woods. I dream of early summer when buds will be open and smoke from the barbecue will fill my nostrils. I yearn to dine in the screen porch, and walk in the garden holding hands with Calvin. For now, all that is still impossible. He and I are still trapped indoors because of the elements. But getting outside is inevitable.

I wonder if Calvin pines for summer. He stares at the sun, but I wonder if he ever regards a blue sky with clouds passing over. I wonder if he too laments the cold weather. He can't revel in fresh snow or skate on ponds with the others. I wonder if he's ever seen a cardinal. I'm pretty sure he hasn't. In the thaw, the squirrels—which I also don't think he's ever seen though they are abundant—are digging holes unearthing a thousand buried treasures.

Today is day six since Calvin's last seizure. I feel one coming. They're all disagreeable, but slightly easier to take these days mostly because they're so predictable. I just wish they didn't come in spades—or at all—but for now they're inevitable.

I'm proud to have voted for Elizabeth Warren. The ending of her presidential race is regrettable. When will we forsake our biases and fears and elect a female president? I heard of so many women who hedged their bets when it came to casting their votes. We so need diverse and female leadership. The world is not doing so well under the oligarchic patriarchy. In fact, the earth, its flora and fauna are showing acute signs of sickening. I'm dreaming of ministries where at least half of all members are women. It may take time, but, like spring coming, I must hold onto the notion that it, too, is inevitable.

trees photo by michelle lisi

in the wake of ice storms

Last Friday's ice storm on my only child's sixteenth birthday reminded me of the day he was born. My water had broken at one o'clock in the morning. The doors to our mudroom and car were incased in ice. Michael punched them open, and we made our way along desolate streets to the emergency room of our local hospital. Shortly thereafter, we were transferred by ambulance to Maine Medical Center in Portland. After a lengthy pheresis during which my platelets were extracted to give to Calvin for his suspected brain bleeds, and during an emergency cesarean under general anesthesia, Calvin was born. Neither Michael nor I witnessed his birth because, since I was unconscious, Michael was not allowed in the operating room.

Upon his delivery, Calvin did not need the platelets, nor did he need brain surgery to install a shunt; spinal fluid was not backing up in his brain, so his enlarged lateral ventricles were stable. But he was six weeks premature and weighed less than five pounds. He was flaccid and had awful Apgar scores, had difficulty breathing and regulating his temperature, had dangerously rapid heart rate and respiration, and no suck-swallow reflex. He spent seven weeks in the hospital—half of which he boarded with me in a labor and delivery ward—before we were able to bring him home.

Every year for at least the last decade Calvin has gotten a hand-delivered, handmade birthday card from my friends' son, Felix, who was born in the room next to ours a few days before we were discharged from the hospital. Felix's card, and past ones from his sister, Zoe, who is away at college, tell me that Calvin is thought of and remembered, even when life itself seems to have neglected, sidelined and harmed him in so many ways. The gesture usually moves me to tears.

This morning, Calvin suffered one of thousands of seizures he's had since he was two years old. When he has a grand mal, I sleep next to him for at least an hour just to make sure he keeps breathing. People can die in the wake of seizures, and so I remain vigilant as possible for my son. As I rested my hand on his waist, I felt keenly aware of every moment from the past sixteen years—the pain, the sorrow, the grief, loss, despair, fear, doubt, struggle, sleep deprivation, fatigue. So, too, I felt the moments—however fleeting—of triumph, joy, hope, love, tenderness, understanding and even levity. Then I drifted off to sleep.

In the days after an ice storm, streets can be treacherously slick. Craggy slush impedes sidewalk progress. These icy-white tempests can lay waste the landscape, breaking branches and taking down power lines. But in their wake they reveal crystals which glow and glimmer like halos when the sun filters through the treetops. And sometimes, despite bad odds and weather, precious babies like Calvin make their way into the world and amaze us.

dragon moms

We hear our children shriek and see them seize. We hold them in their suffering, dab lavender on their wrists and feet. We dread and loathe their cries and moans, regret their frequent misery.

We lug their gangly, growing bodies, change their dirty diapers, wipe and salve their seats. As if infants, we watch them in their slumber. We lay our palms against their chests to feel them breathe. We bathe and dry and dress their fragile, flailing frames. Lamentably, we feed them endless medicines. Readily, we stroke and kiss their cheeks.

We cut their food into bite-sized bits and dole it out piece by piece. We feed them by the spoonful though they're toddlers, tweens and teens. We wash their hair, wipe their chins, brush their teeth. We thwart their falls and hold their hands to keep them on their feet. They may be always in our keep.

These kids of ours have made us into Dragon Moms, in great part because they cannot speak. We become their voice, translate their sounds and moods and movements, foresee and understand their wants and needs. On their behalf we challenge, question, crusade, condemn, critique. Protect their vulnerability. Despite our candor, others still neglect our pleas. We are sometimes seen as monsters—feared, maligned, too often misconceived. No doubt to some we're nuisances, hysterics, freaks. We're merely fierce champions of our uncommon offspring. Come walk in our shoes. Please see our rocky path. Please feel our aching feet.

We Dragon Moms—though not our wish—a rare, formidable breed.

Photo by Michael Kolster