helplessly hoping

Helplessly hoping

Her harlequin hovers nearby

Awaiting a word

Gasping at glimpses

Of gentle true spirit

He runs, wishing he could fly

Only to trip at the sound of good-bye

Wordlessly watching

He waits by the window

And wonders

At the empty place inside

Heartlessly helping himself to her bad dreams

He worries

Did he hear a good-bye? Or even hello?

They are one person

They are two alone

They are three together

They are for-or each other

Stand by the stairway

You'll see something

Certain to tell you confusion has its cost

Love isn't lying

It's loose in a lady who lingers

Saying she is lost

And choking on hello

They are one person

They are two alone

They are three together

They are for-or each other

—Crosby, Stills & Nash

2017

breathing and cursing

When Elizabeth, a woman I’ve met only once but have known several years, picked up the phone, my tears began to flow. I had called hoping she’d help quell my pain, worry and frustration about my son. I knew she’d understand because she has a child like Calvin of her own—Sophie—but also because I know, in part from reading her blog, that we seem to see the world and react to it in similar ways.

I wasn’t looking to Elizabeth for answers, only for her to lend an ear and perhaps validate my emotions and concerns. I used to turn to my mother, for one, when I succumbed to the gravity of despair. Mom always said in her loving voice, “No one can know how hard it is except for you,” and that was enough to ground me. But I lost my mother to Alzheimer’s by degrees over ten or more years, then finally in early October of 2015. 

It seems, too, that I lost a dear friend, a single woman I'll call Stacy, who has no children and with whom I was very close. I had years ago called her in a similar moment of grief over Calvin, needing someone to listen, my mother having long become unable. Her voice was familiar, soothing and kind. Then, at one point she said something like: 

"Christy, ever since Calvin was born you’ve been so angry."

She went on to talk about acceptance, compelling me to ask her whether acceptance had to mean the denial or absence of anger. I asserted my belief that expressing anger can be healthy, even cathartic, and should be honored as one of our core human emotions right alongside joy and sorrow. She talked about the universe trying to find its balance. Hearing this widely-held and appealing theory offers me little consolation, the cosmos often feeling so much as if it tends toward chaos despite its astonishing beauty. After her mention of balance, we lost the phone connection mid-sentence. She rang me back, but I didn’t pick up because I felt more disheartened than before I had called, so she emailed me and began by saying:

you called today in a place we've all been and sometimes what we need is an ear, sometimes a distraction, sometimes an insight we didn't know we were seeking. 

And while I understood her meaning—knowing we all have our burdens to bear—she's never experienced anything close to what I have with Calvin. Still, I had tried my best to be open to what it was she had said on the phone, though I must admit I probably failed to hide my agitation. She ended her email with this:

my intent is unwavering which is simply to love and support you. 

I replied immediately:

i know. xoxoxo

I haven’t heard from her since; it has been nearly seven years. I wonder if she knows about my mother's death. I didn't contact friends when Mom died—didn't have it in me. But people soon learned from reading my blog.

Not long after that phone call, when Michael, Calvin and I were in the throws of flu, seizures and sleepless nights, Elizabeth, Sophie's mom, wrote to ask if we could talk; she was in a hard place. I told her we were sick but that I’d try her over the weekend. When I reached her I could hear her daughter softly moaning in the background.

For the good part of an hour we chatted about cannabis and a new strain she’s begun giving her daughter, one that helped calm most of her seizures which were getting out of hand again. We talked about grief, frustration, and anger, and about the parents who claim the graceful and patient caregiving of their complex, disabled kids. We marveled at such a feat, indeed wondered if it were truly possible. We joked about losing it when our kids' shit and food fly, when we fear for their lives, when their bleating becomes too much to bear, and when so much of our sleep is deprived (some call our condition PTSD, though in our case the P stands for present and persistent). It seems we two, Elizabeth and I, are sisters in arms when it comes to our fleeting gracelessness and, at least for me, complaints and pity parties. We agreed that being able to vent our frustrations, by writing, cursing and sometimes screaming, helps renew us for our endless duty to endure more. Because this caregiving of our disabled children and adult children who are non-verbal, incontinent, unstable and racked with seizures, is relentless and indefinite, the worry, fear and burden proverbial barbed thorns.

Elizabeth wrote to me, after I lamented not being able to talk with her on the phone at the very moment of her most recent crisis:

I always know you are there breathing and cursing.

I smiled and chuckled as she went on to describe two tin cans connected by a string, as if we were next door neighbors. If only.

Breathing and cursing, I mused. What a nice thought, and I felt much better even though we hadn't really spoken.

Photo by Michael Kolster

geek on the back roads

For the first time in what seems like weeks, I went for a run. The roads were clear of snow and ice, and Calvin was in school. It was only thirteen degrees, and I'd never jogged in such cold, but when one lives in Maine and wants to run outdoors, there isn't much of a choice. Luckily, though the air felt damp, it was mostly still. I suited up, then headed out to my beloved Pennellville and parked the car near the point at the side of the road. Right out of the gate, Smellie took off and ran amok, zigzagging from one side of the road to the other, sniffing whatever there is to smell when everything is frozen. When we passed one of two dog walkers, just to be considerate (because Smellie is the mellowist dog in the world unless you're a tennis ball, chipmunk or squirrel), I clipped her on the leash and she trotted alongside me quite well. I jogged on the smooth, flat roads at a steady pace, feeling light and lithe and kind of cool (groovy, not chilled) despite the fact I was clad in mixed layers and looked like a total geek: big, boxy, patched-up, dirty, drab, puffy jacket; dingy-white, stretched-out, high-water joggers; long, black leggings underneath; bright teal sneakers. At least the chunky wool hat Meggan knit me looked good. But I stayed warm, even my hands, which were gloved, fisted, and drawn into tattered, apish sleeves.

Nearing the halfway point, I ran into my friend Lauren walking her dog. I stopped to give her a big, long-overdue hug, making sure to exhale away from her face, because—you know—Omicron. We chatted for a bit and vowed to somehow get together soon for a homemade cocktail, then I took off again. 

Twice along the way I stopped briefly to take a couple of photos before my phone crapped out in the cold. I've not often seen the early(ish)-morning sky at Pennellville, and today—not unlike every day I visit there—the scenery didn't disappoint. On my way out, clouds spread across the sky in a way that was wonderfully moody, both in color and how they dissolved into each other as if watercolor or smoke. On my way back, I watched a sliver of lemon sunshine squeeze itself through a gap in the eastern horizon. Not surprisingly, it looked and felt sublime.

In all, I went four miles, which is no big deal, but I'm thankful I could do it at all (I hope to perhaps run this summer's Beach to Beacon 10K, if I'm lucky.) As for Smellie, well, considering she's nearly eleven, her performance was amazing. Perhaps most noteworthy is that I didn't worry or think about Calvin even once until my cell phone failed on the way back, and even then I wasn't too bothered since he had had a decent morning and is in good hands at school.

At home now, Smellie is totally conked out. I'm here writing, my feet up on the green couch, listening to music and feeling the warm afterglow of a good workout, plus a slight high some attribute to endorphins while others believe might be endocanabbinoids. It has been seven days since Calvin's last seizure, which isn't very long, but it's better than three consecutive days of the terrible cluster-you-know-whats. Michael will be home soon with groceries. I've just put a fire in the stove. A small glass of red wine is imminent, and I'm already looking forward to tomorrow morning, which is when I've planned another running date with Pennellville.

the clamdigger

On last Friday's back roads drive with Calvin, I stopped at the cove that opens into Maquoit bay. The skies were dark, the winds were frigid and the mercury was beginning to plunge. Nonetheless, a lone clamdigger, a large, clean-shaven man perhaps not quite young enough to be my son, was putting in his airboat. I took a few photos before he launched his craft, then asked if he were going to go out the following day despite the forecast of single digits and windchills as low as minus nineteen degrees. He flashed me a handsome grin seeming to understand my worry, and assured me that he wouldn't.

As Calvin chewed his sock in the back seat, I watched from the car as the clamdigger boarded his boat, revved it up, then glided across the icy inlet as if riding a giant hockey puck. I wondered how he would keep his hands warm while sinking them into the freezing-cold muck. I couldn't imagine he'd feel his fingers for very long, even with gloves. I wondered how long he'd been a clamdigger and if it were his only livelihood. Life is hard, I thought, while considering the clamdigger's back-breaking work in all kinds of harsh conditions, and then of Calvin's daily and lifelong struggles and miseries. I silently wished the clamdigger a big haul in return for his tremendous effort.

Later on and well past my bedtime—which is often as early as seven-thirty or eight due to frequent sleep interruptions from Calvin—I watched from the bathroom window as some friends delivered a big piece of the ice cream cake that I had gifted to another friend for her husband's birthday party. Having been guests at the small celebration, they were given the foil-wrapped hunk of cake by the host to leave on our porch so I could taste some of it later. A few minutes before they arrived, the wind and Calvin's whimpers had woken me, and so I had gotten up and covered him (he can't do that by himself), then went to pee and get a drink of water. With a clear view to our driveway from the upstairs bathroom, I had seen them pull up. Watching my friend Stephanie brave the bitter, gale-force winds while trying to avoid patches of ice on our driveway made me appreciate her and her husband's effort, especially considering it was late enough they probably would have preferred to zoom straight home from the dinner party and crawl into bed themselves.

I tiptoed again through Calvin's room into ours and slipped back into bed with Michael (the ice cream cake would no doubt stay frozen outside.) Wide awake, my mind drifted from one angst-laden hope to another: that Calvin's seizures would someday soon abate; that his new medicine would begin working better than it is—if it is; that none of us comes down with Covid; that on Tuesday, Calvin's school will really reopen after eleven long days of having him home with me, both of us going in circles; that I can start running again in earnest; that more folks will get their vaccines and boosters; that this virus doesn't mutate into worse versions; that hospitals and their staff can soon catch a break; that people can get back to work; that more Americans decide to start protecting each other instead of being so small-minded and selfish; that voting rights legislation will pass despite despicable, unthinkable, partisan obstruction.

Lying in the darkness, I wondered again when so many Americans became so indifferent to the health and well-being of others—those in their community, their friends, their neighbors, their own kin. I wondered why some people insist on thwarting proven public health measures such as wearing masks in public during a goddamn pandemic. I mean, seriously, what is there to prove? Some twisted notion of freedom to do as one pleases despite posing grave risks to others? Some hackneyed belief in the myth of rugged individualism? Dude! Exactly no one accomplishes anything on their own, which made me think of my many friends who support my emotional well-being with their small kindnesses—flowers, cards, books, homemade goodies, entire dinners, phone calls, champagne, oysters, homegrown veggies, smiles, waves, hugs, love, and all kinds of cake. I thought, too, about the mailman and the grocery store clerks and the bookstore owners and Calvin's primary care provider and neurology team and teacher and aides and bus driver and therapists. We all rely on each other for sustenance. We're in this together. We need to look out for each other.

Then, I thought again about the clamdigger, who works in brutal conditions so he can pay his bills by peddling his harvest to restaurants for their patrons. In a previous life, despite being a stranger, zany me might have asked if I could join him. I'd have learned something new, might have lightened his load a bit and perhaps even made a new friend. Who knows?

Two hours later, as I finally began to unwind, I went to sleep hoping: that the cold snap would break soon; that my gifted ice cream cake (cherry chocolate fudge brownie with a coconut twist) was a big hit; that we can soon begin to see friends indoors again; that spring will arrive early; that the clamdigger made it home safely, and that his hard work, plus the care and help of others, keep him warm and dry, fed, healthy and loved.

Maquoit Bay

wishing

wishing i could get out to simpson's point and pennellville today. it is beautiful on days like these when it's seven degrees. wishing calvin hadn't suffered two grand mals last night. wishing he had made it further than eight days. wishing he hadn't been so panicky for hours afterwards—heart racing, palms sweating, his little body tense and trembling. wishing i had a harmless antidote to give him. wishing i'd gotten more sleep. wish i had less stress. less anxiety. less clenching of my teeth. my worry over him is devastating.

wishing calvin didn't get a fourth close covid contact at school last thursday. wishing school weren't remote this week. wishing he were a normal kid, whatever that means. wishing this pandemic never got to this point. wishing more folks trusted and understood the science. wishing folks thought of others instead of just themselves. wishing people had masked and vaccinated and stayed home whenever they could. wishing people didn't take certain unnecessary risks possibly putting others in peril. wishing hospitals and their staff were not overwhelmed; everyone is tired of this pandemic, but our fatigue pales in comparison to that of healthcare workers. wishing so many people weren't getting sick and dying. wishing so many children weren't losing their parents. it didn't have to be this way.

wishing i knew what ailed my son. wishing he could tell me himself. wishing i knew the source of his distress on either side of his seizures. wishing there were something i could really do to make it better. wishing i had more patience to endure his misery. wishing i could wish this all away to oblivion. wishing i didn't feel so contemptuous the way i sometimes do.

paraphernalia

I sit motionless in a gray steel and vinyl chair before a grid of full-spectrum compact florescent lights, eyes closed, a double-sided dark cloth draped over my shoulders. For ten minutes, I hold this pose as Michael looks into the ground glass focusing the image of my face onto it, adjusting the camera’s fully extended bellows. He vanishes into his darkroom where he pours the emulsion onto the glass plate and dunks it into a silver bath before emerging and snapping it onto the back of the camera. He counts down, “four, three, two,” and on the count of one, I take a deep breath and hold it for the forty-second exposure. In my stillness, I realize how calm I feel—warm, silent—and I remark about it later, about how I rarely, if ever, relax like that and just ... do ... nothing.

My husband’s studio is packed to the brim with his photographic paraphernalia: chemicals, cameras, flasks, clamps, plastic trays, cloth and latex gloves. And then there are the photographs themselves: large black and white riverscapes; hand-tinted prints of old mill town structures; expansive cityscape triptychs, curled satiny silver-gelatin prints; an oversized cyan sky reflected in a muddled green river reminiscent of an oil painting; translucent glass-plate ambrotypes resting against a black velvet backdrop that magically reveals the rugged beauty of the images. To my delight, in nearly every section of the large space he has hung photographs of me.

Stacked on end leaning against the walls are huge framed photos wrapped in brown paper and masking tape. Some prints are pinned up, others hang framed on screws or nails. Gray file cabinets bulge with 4" x 6" glossy prints inside waxy paper sheaths. Countless boxes boasting thousands of photographs buttress towers of flimsy negative sleeves from recent and years past.

Michael is the most prolific artist I know, tirelessly laboring, inventing, creating, dreaming. His bodies of work are vast, deep and varied. His fearlessness of new territory, different methods, themes and subject matter reminds me of the innovation of Miles Davis or Beck—constantly evolving, experimenting—yet the familiar thread of genius throughout the work remains. He’ll blush at reading these words, dampen them down in his own modest way, but I know his work is gorgeous, provocative, impeccable and timeless.

A few nights after modeling, I return to his studio to see the day’s work. Scattered across the tabletop are countless orange bottles with childproof caps and printed white labels with Calvin’s name. In large bold letters, one reads MAY CAUSE DIZZINESS. Many are empty. Others still contain the sinister little capsules stamped in a tiny font: ZONEGRAN. We’ve saved most of the empty or discontinued drug canisters and their contents over the years for Michael to photograph. Along with the amber bottles are translucent ruby vessels with traces of syrupy liquid beading their insides, paper-backed foil blister packs—the kind that are oh-so satisfying to pop—bundles of striped urine test strips, and multiple dozens of crinkled and stained handwritten medication logs with rows of penned in Xs and administration times.

“Makes me sick to look at them,” I say to Michael, regarding the piles and piles of foil and plastic casings strewn on surfaces or spilling like guts from every possible nook and cranny in the large cluttered space. I imagine Calvin’s little body, his smooth belly and flawless skin, and think of all the wicked chemicals we’ve spooned into him over so many years. Frigging seizures, I think to myself. Effing drugs. And yet this paraphernalia proves so ironically beautiful to behold, like precious metal, little gems or handfuls of pearls. At the same time they remind me of the acrid metal of war, of steely prison bars, padded white cells, of the numb brain and bleak future of my precious, innocent little boy who, every morning and night, we woefully coax to open his mouth and choke down this string of endless, chalky, bitter pills.

originally published in 2012.

while alive

delight in the mundane. step outside—of doors, shoes, boxes, habits, expectations, comfort zones. dance like a maniac whenever compelled. sing until it hurts. scream until it swells and burns. let go more than once in awhile. marvel at the day-to-day. honor every emotion—bliss, anger, grief, sorrow. trust science and trust your gut. stand up for yourself and others. pursue truth. read books voraciously. explore new genres. try unfamiliar foods. keep your friends' secrets untold. jump pantless off low bridges into warm waters. eat cake for breakfast. hug others often as possible. damn all forms of bigotry. say i love you often. let go of petty obligations. question organized religion and its patriarchal architecture. embrace nature. befriend those who are wildly different from yourself. live simply. give to others. turn to music and film. breathe deep. love misfits and weirdos. forgive yourself and others. release regret and resentments. abandon fear and angst whenever possible. practice compassion, kindness, respect, inclusiveness, gratitude, humility. travel the world if you can, and if you do, get to know the locals, their language, their food. expect success. fail miserably—at anything. imagine. wonder. create. explore. find a perch or cave from which to ponder the world. reflect. muse. hold onto hope. get lost. take risks while taking care not to hurt others. founder, but move forward with as much grace as can be mustered. listen well and live awhile in others' shoes.

looking into a chunk of ice i found on the side of the road.