the kindness of strangers

It's Thursday at two a.m. I'm in bed with Calvin after his seizure. With my hand draped across his side to monitor his breathing, I reminisce about my previous day. I think about the kindness of strangers: the salty, sunburned guy in sleeveless sweatshirt and torn jeans who wanted to help me when Calvin dropped down in the middle of the grocery store; the woman in the checkout line who let me and my impatient, pre-seizure Calvin cut in front of her; the kind clerk who was uber-patient as I fumbled with my wallet and stumbling child.

In the darkness of the room, my thoughts then drift to the strangers I've met while driving around on the back roads with Calvin. Countless folks brightened my brutally-long and sometimes dark pandemic days, but none as much as the runner, the Carhart dog walker, and the black-clad couple, all of whom I used to encounter with some frequency. Since our car-ride schedule has changed, however, and since Calvin is having so many seizures which require a day or two of recovery, I rarely see these familiar faces anymore. I miss them, miss our exchange of nods and smiles and waves. Because my days are still long and my child is still sometimes near impossible, their absence is palpable. Recently, I finally pulled over, introduced myself and connected with the latter three for more than a fleeting moment in passing. I expressed my gratitude for their unwitting source of comfort amid a difficult time. The first of these roadside stops was with the black-clad couple. It yielded a kind invitation from the woman, Lynn, for me and Calvin to visit her and her husband, John, at their home on the Point. Yesterday, while Calvin was in school, I took her up on her offer, deciding to go solo to suss things out for a possible future trip with Calvin. As we got acquainted in their kitchen, John frothed up some milk for my coffee and made us breakfast. With plates of cinnamon French toast and berries propped in our laps, we sat on their deck overlooking a misty inlet. We spoke of a dear mutual friend, of the other back-roads travelers, of art and family and pharmaceuticals and politics and pandemic. Lynn then gave me a tour of their home and gardens, which she and her husband have worked on improving for decades. I found the two of them to be intelligent and artistic, with good senses of humor, and they revealed an easygoing openness and humility. The short time I spent with them in their idyllic setting felt like being on vacation. Upon my leaving, Lynn and I gave each other goodbye hugs, and made a mental plan to get together on my turf; it felt as if I'd known her for years.

Finally, dawn begins seeping in through the windows, and as it does, my day at the grocer and with John and Lynn seems like a distant memory. As the shadows recede, so too does the risk of Calvin's demise from SUDEP (Sudden Unexpected Death in Epilepsy), so I finally sneak out of his bed and into mine. As a cool breeze drifts over my body from the open windows, I close my eyes and continue to dream and wonder about the lives of strangers, and of the pleasure of making friends with them. 

every path i take

it had been just four days since calvin's last grand mal. still, i sensed it coming on. his agitation and mania. his restlessness and intensity. his peculiar noises and expressions. last night, while walking smellie along a familiar path at dusk, it arrived. it was the cusp of the new moon. i returned home to find my husband cradling a postictal calvin, who had bitten his check or tongue till it bled.

after the seizure, i spooned my sleeping child. wide awake, my hand on his chest, i reminisced on recent events: finally jogging the trails with my dog; nice, longish visits with a few, familiar, back-roads strangers i had finally and very happily met; a kind invitation from one of them to sit by the sea; chatting under stars and strings of lights on a girlfriend's back deck; sipping the delicious blackberry, mint, gin cocktail her daughter had concocted; meeting an unknown runner who stopped mid-workout just to visit with me and calvin on the sidewalk; four separate gatherings with new and old friends; my glorious bike ride to simpson's point and back again; along the way, hearing a hermit thrush's haunting song; eating lobster rolls and corn on the cob; a conversation about pity and compassion with my visiting sister-in-law.

finally, sleep arrived. like life sometimes, my dreams were vivid and difficult. at five o'clock, we awoke to a second grand mal and, when it was over, i crawled in next to calvin again. this time, shut-eye proved impossible. instead, i mused on recent expressions of compassion and love from friends and strangers:

i've had deep sympathy for you from day one; i think about you and calvin all the time; i couldn't handle your situation with the grace you show; i wish there were something i could do; i love you then now always; you break open the heart and the stories; thank you for the little window into your world; wish that the pain i genuinely feel for you could somehow make your days easier; all you want is to live in your full motherhood and not as a caregiver, too. not too much to ask, my friend. not at all. 

knowing i'd be mostly stuck indoors for the next day or two, i laid awake imagining travels, like my next back-roads adventure, a bike ride to the rise where i can see the salt marsh meeting the sea, hearing that hermit thrush croon, rolling up my jeans and wading into the bay at simpson's point, running the shaded trails on a gorgeous morning like today. most of all, receiving love and compassion from friends and strangers along every path i take.

breakthroughs on a somber day

again, my mood is somber, reflected in the sky's leaden heaviness. weighty as a handful of stones in my pocket. but like a cloudy sky, there are breakthrough moments of light. little bits of levity, like when i pick up a sleek and clean smellie from the groomer and she goes cutely berserk. or when my husband comes home early. or when i see the space open up as i chop down a sickly, old, monster rhododendron, and michael finishes it off with woody's chainsaw—so much possibility for something beautiful to take its place. something less beastly and oppressive. something i don't have to wrestle. something that doesn't burden me like my son's ongoing struggles.

lately, sorrow has been setting in as i'm reminded of how calvin, who is seventeen, should be a rising senior in high school—should be looking into colleges, reading interesting and complex novels, mowing lawns, hanging out with friends on the town mall or bowdoin quad, leaping off of piers and low bridges into brackish waters. instead, he's chewing on a crocheted rabbit rattle, having his hand held while walking down the sidewalk, tossing his sippy cup sideways like a toddler, playing with baby toys, being potty trained, wetting diapers.

several of my friends and acquaintances have kids his age. they're so grown up. independent in nearly every way. they've got futures as bright as breakthroughs of sunshine and blue sky in a bank of dark clouds—hopeful, sparkling, limitless. witnessing them is lovely, yet, like bittersweet lozenges, hard for me to swallow.

and as the pandemic has slackened a bit of its grip, i feel surprisingly unmoored. as the tethers are loosened, i'm not sure what to do. i find myself flailing. it's a strange mix of emotions. free and yet still imprisoned by my son and his condition. and while my husband made plans to visit italy this fall to print his next book (having photographed in paris and hawaii several times in recent years) i find myself wondering how i'll get through today, tomorrow, and the day after that. wonder where i'll be or have traveled, or what this normally-prolific self will have accomplished in two, five, ten years. nowhere? nothing? same old same old?

and i'm missing the handful of folks who unwittingly helped ground me during the pandemic. familiar strangers—the runner(s), bikers, strollers, dog walker(s)—smiling, nodding and waving to me from the roads. faces i look forward to seeing. lives i can only imagine and live vicariously through. haven't seen them lately. like a starless sky, without them i'm having trouble navigating through the pandemic's rough and receding seas. other than my husband and son, and the landscape itself, they've been my constants this past year, like little beacons or shards of light in a darkened sky. saw them much more than my own friends, though from afar. without their grounding, i feel as though i'm drifting from shore. and though i'm a pro at treading water, i feel slighly seasick. but perhaps, like stars on a cloudy night, they're not reliable. and why should they be? i'm nobody to these strangers. we all have our own lives and loved ones and struggles. and yet i remain eternally hopeful for communion, compassion, friendship, empathy, understanding.

today, however, on a favorite stretch of wooded road, i saw the black-clad couple (though this day wearing more earthen tones) who live on the point. i slowed and pulled over. rolled down my window and introduced myself. while trying hard not to choke up, i told them how i'd seen them frequently while driving the same roads nearly every day during the pandemic with my nonverbal, legally blind, autistic, epileptic, seventeen-year-old boy. they peaked in on calvin, who was in the back seat craning hard to find an absent sun. i told them how reassuring it was to see the familiar faces of strangers like them during months on end of long, lonely days spent solo with my son. they said they recognized my car. i'd seen them wave. the three of us visited for quite awhile, discussing neighbors and kids, drugs and doctors, the pandemic and back roads. i invited them to read my blog. it felt good to finally meet and connect with folks who have unwittingly been my mooring during a very difficult year. felt healing to offer them my gratitude in person. i wish i could have hugged them. they seemed quite affable and open.

finally, we said our so longs, and as i put the car in gear and headed to the point, i felt the sun's warmth and saw its rays start breaking through cracks in a vast bank of clouds reflected in a tranquil sea.

the remains of the day

My Wednesday morning mood felt vibrant as the blossoms in my garden. I had picked one of each color and set them on the weathered arms of our Adirondacks the night before. By sunup, they were still lively. Perhaps my cheerful state was a remnant of the previous day when I had laid face up in a field of grass and watched gulls gliding way up high. If only for a moment, I had melted into the earth of my childhood, as if back in my faded floral swimsuit, coconut oil slathered over my golden arms and legs. Watching bumble bees mine the clover. Studying ants and beetles climbing over my hands. Seeing small aircraft soar in the sky. Not a care in the world.

Later that morning, I made an impromptu visit to a dear friend. I sat in the car with the windows down, he in a white plastic chair. We chatted in the half-shade near his barn. In the back seat Calvin chewed contentedly on the ear of his crocheted rabbit. The remains of the day seemed full of promise: I had hoped to host another friend for coffee in the garden; Michael and I were going to put Calvin in the stroller and take an afternoon walk along the river; I was thinking of throwing down some mulch. None of that came to pass because Calvin had several meltdowns which led, as they often do, to my own.

By midafternoon, Calvin's little black cloud had descended upon me. I became vexed dealing with my bat-shit crazy child. No clue as to the source of his misery. It's times like these when grace sometimes goes out the window. I felt tight, impatient, haggard and hollowed out—a shell of myself. I caught a glimpse of my face in the bathroom mirror. What I saw staring back at me was fatigue, frustration, resentment and ugliness, the kind seated more deeply than wrinkled skin.

Finally, Michael came home to hang out with Calvin so I could take my late-afternoon walk with Smellie. On the narrow path that I usually choose was a couple headed our direction. Ever-so-slightly stooped and probably in their eighties, they each grasped a walking stick. So as not to risk Smellie toppling them, I veered left of the cyclone fence. Midway down the long divide we approached each other. I greeted the couple and asked how they were doing. From the opposite side of the rusty fence they introduced themselves as Alice and Kent, out-of-towners here for a stint. We stood and visited for twenty or thirty minutes, speaking of the pandemic, graduation parties, and vacation rentals. They mentioned their sons, both of whom graduated years ago from Bowdoin. When I revealed my age, Kent told me I was still very attractive. Blushing, I thanked him for the compliment. Little did he know how much it meant to me that day.

They went on to ask if I had children, so I told them all about Calvin. Sorrow crept across their faces when I described him—seventeen, nonverbal, legally blind, incontinent, cerebral palsy, intractable epilepsy. They wondered how I coped. I mentioned that writing and gardening are my therapies. Having expressed interest in reading my blog, they gave me their email addresses. I invited them to stop by and see my garden. "It's just up the street," I said, "so much is in bloom right now." They assured me at some point they would visit. I wanted to reach through the cyclone fence and hold them in my arms.

When I got home I wrote to Kent and Alice telling them that they had made my day. Kent wrote back within the hour saying:

I am not sure I could ever provide the love and care you have given your seventeen year old son, Calvin. You are a real inspiration and through it all, you have carried on with a positive attitude and good sense of humor! Nice going!!

I remembered that I had told Alice and Kent that I came by my (mostly) upbeat attitude by way of my mother and hers. And as the remains of the day dwindled, I looked out over my garden so full of pink and purple blossoms—my mother's favorite colors—my heart bursting with gratitude for simple encounters with loving friends and strangers just when I seem to need them most.

in my path

"Why did you help me?" she asked. 

"You were in my path," he replied.

Those were the words uttered by the main characters in a movie I recently watched called, Land. More than anything else in the film, that snippet of conversation struck me, triggered me into thinking about everyone who has helped me survive and thrive in this life, particularly since Calvin's arrival. 

Countless people whose paths I've crossed came to mind—everyone from my husband and extended family to my childhood and college friends, teammates, and the swimmers I coached way back when. I thought of former boyfriends, colleagues, roomies and besties from Seattle, San Francisco and Maine. I considered my husband's colleagues and former students, Calvin's doctors and nurses, our lovely neighbors, and the clerks at the grocery store. As I write this I think of the friendly strangers I've encountered by way of this ten-year-old blog, and while driving the back roads during the pandemic. Every single one has helped me get through this difficult life of raising a disabled child with an impossible, chronic condition.

Perhaps it was you who held my elbow or hand while I laughed, wept or wailed. You might have silently listened to me grieve. You may have offered to do my shopping, cooked us meals or left goodies on the doorstep. Perhaps you've brought me flowers, written me kind and loving sentiments in a hand- or type-written letter, email, message or text. You might have hugged the breath out of me just when I needed it most. You may have unwittingly buoyed me in the fleeting moment you ran, skated, strolled, drove or biked past.

And then, of course, there is Calvin, my peculiar little boy who has helped me—bettered me (mostly)—in myriad and indescribable ways.

In return, I certainly hope I've helped you, friends, loved ones and readers, in some small ways, if only by a few written words or by something as simple as a photo of a field full of dandelions dipping into the bay.

snapshots

After our son's first grand mal of the night, I laid in bed with him. In my head, I began to write my blog. Like our daily car rides, my thoughts looped around. Words took different turns. Images previously seen clicked into narrative landscapes—physical, emotional, virtual. Eventually, I nodded off to sleep.

Of late, Calvin has been too ill to take car rides daily. Some sort of infection—urinary tract, bladder or kidney—means we haven't been out much, or we've driven short loops close to home in case he has another daytime seizure. I lament the days in which I can't travel the backroads. I so miss seeing the gorgeous vistas, the wide open spaces, the big skies, my people: the Carhart man with his three willful dogs; the pair of women with similar haircuts and purple jackets; the tall man with his cute, wiry mutt; the black-clad couple who live at the mouth of the inlet; the bikers and joggers of every age and shape; the marathon runner; even the skinny old hippy chick with the puffy coat, nappy hat, mauve stockings, hiking shoes and poles who looks at me with a bit of suspicion as if she owns the road. They all unwittingly buoy me through this lonesome pandemic. Each sighting, smile, wave and nod somehow lifts me, makes me forget about stresses and worries, Calvin's seizures and our limitations. Without these people, I'd be feeling altogether differently; in other words, not as good. These have been some long-ass, monotonous days—over a year of them—caring for a boy who can do nothing by or for himself.

But I do find respite. Ben came up from Boston Sunday. With Calvin secure inside the house where we could check on him frequently, the three of us sat safely distant in the sunny driveway. Ben's eyes shined bluer and brighter than I remember, at times exuding understanding and compassion. A former student of Michael's, we talked about photography and discussed the art of mindfulness—of finding deeper meaning and beauty in the mundane; with that I have a lot of practice. He asked what kind of relationship Calvin has with language. I was touched by his curiosity and depth of thought.

Ben told us he brings along Polaroid snapshots of his friends when he travels for business. Lays them out in lonely hotel rooms where he can see them. It's as if his people are there in person. It helps him pass the weeks and months away from those he loves. I imagine he might feel as if they're seeing him too, which must be validating in a pandemic for those seen by few.

On Monday, after starting an antibiotic, Calvin seemed to be feeling better. So we took a longer drive down a favorite road to a boat launch eight miles south or so. On the drive out and back we passed the runner. His pace is swift and fluid, as if he never touches down. I'm reminded of the winged feet of Mercury, god of travel. Like when I swim or tread water, it seems he can run forever. Though I reckon he goes quite far, his face remains placid. His endeavor appears effortless. So as not to startle him, in passing I put my hand out the open window hoping he might see me waving as we passed by.

Though we'd already traveled a distance, Calvin remained happy in the backseat playing with his toes. The songs on the radio—some familiar, others newer—soothed me. I chose to take two more favorite loops. Nearing a quiet corner where a sloping neighborhood street meets another road, again I spotted the runner. Well before the stop I paused to give him space—for mind and body. Flying past, he waved a hand in my direction. A sense of joy and ease washed over me. As if evidence of my own pandemic existence, I had been seen and, for a moment, it felt as if he carried me along.

In taking a left turn homeward, I was made to pass the runner one last time. I hesitated to catch his gaze for fear of interfering. As his form receded in the frame of rearview mirror, I was reminded of Ben's snapshots, and of mindfulness and gratitude. I mused: mental pictures of these backroads travelers, a couple of whom have become in ways beloved, are like snapshots in my pocket. I keep them in my thoughts, forever curious of their struggles, passions, hopes and burdens. Not unlike my dearest friends, I carry memories of their forms and faces throughout my days and in-between seeing them in person, like Ben's Polaroids displayed on hotel tables. 

At 3:00 a.m., in the wake of Calvin's second grand mal, he suffered some miserable agitation. After having done all we could to aid and comfort him, I heard the train roll through. Hearing its whistle and rumble calmed me. I imagined taking it to its final destination, wherever that might be. I thought again about my backroads folks. I wondered—not so humbly—if they ever imagine, however fleetingly, my travels through landscapes, time, emotions. I wonder if I've become in some strange ways meaningful to them like they've become to me. Like a stack of snapshots, do impressions of this smiling stranger behind the wheel endure—not as a burden, but as a buoy? Or are my musings more a measure of some real pandemic loneliness and fatigue?

Photo by Ben Painter