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

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.

musings

a stink bug perches on the bristles of my toothbrush. i know more about ventilators than i should. this morning's coffee tastes luxuriously of earth. as i run through the forest, pileated woodpeckers hammer and cackle from above. nearly every surface in this house is covered in dust. some things never give up. i've got an ache in the ball of my foot. on the underside of smellie's ear there's a mat that feels exactly like felt. it's astounding what some people call leadership. one tablespoon of butter has as much saturated fat as half a cup of vanilla ice cream or a large bag of potato chips. the campus is silent. students' bicycles rest on flat tires. matching cuts on my middle fingers throb, but only when i focus on them. the full moon works its gravity on seizures. charlotte, a little girl a lot like calvin whom i never met but loved just died from probable complications of the coronavirus. her mother was my mentor and is my hero. the morning sun shines in sideways, its light refracting through glass like opals or rain or the way trees blur through windows of a speeding car. my wedding ring clinks like a wind chime against my mug. steel cut oats get stuck in my teeth. the chair i write from groans and squeaks. pride gets in the way of apology. i imagine the hand that painted each brushstroke of face and landscape. reflections are everywhere and everything.

Photo by Michael Kolster

good run

It was a good run while it lasted, until this morning at four-thirty. Calvin went twenty days without a grand mal seizure, nearly three times his recent average and one of his longest seizure-free stints in the past few years. If he can make it until Friday without having any more, he'll have had only two grand mals in a month's time on the heels of March in which he had only three. My best guess is that the recent increases in my homemade THCA oil are what's helping. I'm giving him about three mgs THCA per kilogram of his weight. The only other drug he is taking for his seizures is Keppra, which is at his lowest dose in a decade.

What might also be enabling his seizure freedom is the fact that, beyond being bored, he is relatively stress-free staying home from school with Michael and I as his only caregivers. We spend a lot of time snuggling, hugging, kissing and tickling him all day long. What else is there to do? Weather permitting, we walk in the garden where he touches his favorite rhododendrons, the prickly mugo pine and several Alberta spruce. He takes leisurely baths, and we go on long car rides while I reach back and feed him grapes and blueberries from the driver's seat. During this coronavirus lockdown, he isn't taxed at all.

The past month or more we've seen Calvin smile a whole lot, like when Michael reads him his favorite book and even when walking down the sidewalk on our way to visit Woody. Sadly, because of the pandemic, we can no longer go inside and pilfer Woody's chocolate jar.

With any luck Calvin will have another good run with lots of smiles and giggles. Cross your fingers. Knock on wood.

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.

lockdown

Our boy Matty just made a delivery to our kitchen window. Technically, I'm not sure he's supposed to since our governor, Janet Mills, just put us in lockdown today. However, I imagine beer delivery is an essential service, so I think we're good. Matty kept a safe distance as he put the brewskis through the window, and Michael grabbed them with kitchen towels before putting them in the refrigerator. When Matty said so long, he smiled at me from under his raincoat's hood, and I told him I love him and his family. Right then it became more real how hard it will be not to commune with our beloveds for who knows how long. My guess is September.

Everything coronavirus is intensely fascinating.

In the background we were listening to KEXP, which is broadcast from near my hometown in Seattle. They had just played a gorgeous cover of David Bowie's Young Americans by Durand Jones & The Indications, and were pausing for a top-of-the-hour break. Two DJs sitting in separate sound studios spoke of how they could perform dorky dances since no one was there to see them. They went on to notice how they were getting low on wipes to disinfect the equipment, adding that they'd play music until they ran out. That last comment made me begin to weep. Seeing me, Michael said something to the effect that music will save the world. He says that all the time.

As the one DJ was signing off, she said, "Be kind to each other." If I hadn't already been slayed by the previous comment, that one pretty much killed me. I thought of a recent conversation I had with a loved-one in which I might have been over-the-top and not as forgiving as I might have been in other times, even if a reaction was duly warranted.

As dusk is setting, a fire rolls in the wood stove. Michael is fixing salmon and sushi rice for dinner. Thankfully, a dear old friend who lives alone in a farmhouse on the edge of town, and whom I've been worried about, finally responded to me saying, among other things, that he is fine.

Love in the time of coronavirus is wild.

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass