mundane

These four walls are closing in. We move from couch to bathroom to bedroom to kitchen and back again. The repetitiveness of shadowing my kid—it feels the same with my writing. Returning to the same old themes and places. The word that comes to mind is mundane.

Because of the pandemic, the beloved fields near our home are, from sunrise to sunset, temporarily closed to the public. The trails around them are not off limits, but remain treacherous. Daily temperatures are still too low to melt rock-hard ice, especially in shady places. Instead, I wander along sanded asphalt, skate across frozen lakes formed in the low spots of salt-blanched sidewalks. After dawn and at dusk, when streets are empty, I stroll down their centers, which feels slightly freeing. Still, the dog and I are longing to roam wild in wide-open and unfrozen spaces.

Regrettably, the vaccine rollout in Maine is now mostly age-based, so my son won't get vaccinated until summer. The governor's decision to bypass people with high-risk medical conditions is troubling. It means we'll be keeping Calvin home from school longer than we ever thought possible. Nearly a year has passed of having him home alone with me. It's been a burden on my mind, body and spirit; the only person with whom I spend endless daytimes can't speak, and his needs are unceasing. I'm aching to connect, commune, relate with other people. It's in the very nature of my being. I know I'm not alone in that feeling.

Thankfully, I receive a rare visitor. One of Michael's former students drove up from Portland just to see me. We sit outside, twelve feet apart on the glacier that is our back yard. I place my plastic chair where I can see Calvin in the house, spinning in his jumper. Hector's thick, bleached, sun-gold hair is a welcome shock of color against Maine's white winter. To gaze upon a familiar, maskless face for more than a moment feels magnificent. In the cold, we speak of adventure and of heartache, of our vintage Mustangs and of new beginnings. We see each other smile. We laugh together. Upon his leaving, we give each other virtual hugs and I tell him that I love him. He'll be moving away in a few months. I'll miss his visits.

Back inside I get my son out of his jumper. He leads me to the green couch, his favorite spot to spend less than one minute in my lap before getting off and motoring in circles. That word comes to mind again—mundane. But then I look up it up in the thesaurus for more context and see its second definition—earthly, worldly, terrestrial, temporal, sensual—and I feel grounded, renewed, somehow unfettered.

One such day two years ago.

in the dead of winter

Just another Groundhog day in a runaway pandemic—cooped up with a nonverbal kid who suffers a severe and chronic condition. Waiting with bated breath for a covid vaccination. Unsure why our son's not yet able to get it. Feeling the need for a shot in the arm myself, both literally and figuratively. This pandemic has laid hardship on top of hardship. Everyone has their struggles, is treading water in some way. I ache to see familiar faces, to hear from people, to touch and hug loved ones. 

Driving around to pass the time, which has expanded like elastic in this pandemic. Creeping along at twenty to thirty miles an hour drinking in the scenery. Studying the colors of a cloudy day in the dead of winter: white, jade, chestnut, charcoal, stone, pine, pewter, juniper, straw, bronze, rouge. Subdued yet beautiful. I must remind myself to be mindful. Appreciate the mundane details. Especially in February in Maine.

Turning up the volume on songs I grew up with and ones much newer. The musicians croon about love, heartache, dreams, loss. Sometimes I sing along until my throat feels swollen. The tunes send my mood up and down like the lonely roads we travel along. There are moments when I feel like weeping. Sometimes I do. Life is a roller coaster. So many hills and hollows provoking excitement and unsettling feelings, yet seemingly leading nowhere. I even keep writing about the same humdrum stuff hoping to glean or give something new. Not sure if I do. Still, life can be fascinating in its surprises and challenges. And at least I can still dream and feel deeply.

I reach back to give my son a grape and he grabs my hand just to hold it. A smile spreads across his face. Even with his fuzzy little mustache, he's cute. He's in a good mood despite the grand mal he had two mornings ago. For the former, I am grateful. The latter can go to hell.

Thinking about yesteryear, I get a text from a dear friend whose wedding I was in twenty-three years ago. Another lifetime. Back when days seemed more fluid, pliable, full of hope and opportunity. Back when the California sun made getting out and around so much easier than here. Maybe I'm fooling myself, but I don't think so.

In the dead of winter with another storm looming, the optimist in me sets my sights on warmer weather. We're headed in the right direction. At a crest in a snaking lane I look to the horizon over a body of water and see a section of sky where the sun glows through. The water is nearly the shade of a tropic lagoon. Blue and green, colors of spring. The time when bodies thaw and can move more easily. My brother tells me we may be seventy percent through the pandemic. Like me, he sees the glass half-full. Maybe it won't be long until Calvin goes back to school. Maybe soon I'll be able to escape these four walls for some sort of adventure or comfort. Maybe soon I can work in the garden. I'm aching to dig in the earth, to mow the lawn and prune. Maybe it won't be long until I'll see old friends and make new ones. Maybe one day soon I can stand face to face and embrace you.

the runner

Since last March, when the pandemic closed the public schools, I have been taking long drives around town with my disabled son Calvin and my dog Smellie. Almost daily, and usually before noon, we loop around on the same back roads taking in the scenery—rolling fields, salt marshes, tidal inlets, exquisite banks of oak, pine and birch which beckon and embrace me along Simpson’s Point, Pennellville, Maquoit, Mere Point, Bunganuc, Pleasant Hill and Rossmore Roads. It's very calming, and helps me pass the time during these long, monotonous days alone with my boy who can sometimes, if not often, feel impossible.

On one such drive a while back I caught sight of a runner a bit younger than I—tall, lean, focused, nimble—his face familiar from having seen him years ago while walking the dog at the college athletic fields. In some ways he reminds me of my former self—athletic, independent, driven, able to wander unencumbered.

Every so often I drive past the runner, my son in the backseat contorting himself as best he can to stare at the sun despite my efforts to cover the windows with towels and cloth shopping bags jammed into the tops of the back seat doors. Like my husband, the runner’s pace is brisk and efficient. Judging by the various points where I’ve seen him, it appears he runs quite far. I decide he must be a marathoner.

As a former hardcore swimmer who has swum thousands of grueling miles in pools, I find I prefer the ease and freedom of running. Regrettably, it has been years since I've made a habit of it, what with time constraints, a dog who seems too old to jog beside me, a teenager who can’t be left by himself, harsh Maine winters and, now, the pandemic. Alas, I find myself again living vicariously through others. As the runner races by me, his chiseled face curiously calm, I begin to wonder. Has he explored the same panoramas where I yearn to roam and linger? Has he viewed vistas that I have missed in my limited circles? Does he ever stop to test the water, marvel at the mackerel sky, or notice the grace and beauty of a dormant forest? I wonder if he, too, is attempting to escape a hardship. What losses has he suffered? Is there anything that grieves him? How painful or rewarding is his endeavor?

In these sad pandemic times, when my natural penchant to mix with others has been so stifled, and when naked (maskless) faces are a rare sighting, I look forward to my daily drives. They allow me to escape my own petty or grievous worries by taking in gorgeous panoramas and, instead, contemplate the lives of others: the Carhartt man tethered to three brawny dogs who each yank him in a different direction; the salty old guy in neon regalia pushing his pedals against all kinds of weather; the crooked old lady clad neck to heel in black lycra doing her best version of jogging. And when the runner's eyes meet mine and he raises a hand as I pass, I feel—if only for an instant—somehow lighter. 

One day, hopefully, the pandemic will be over. And when it is, my daily outings in the car will likely come to an end, and with them a most reliable method of escaping moments that can feel so lonely, confined and tiresome. Thank you, dear runner, and others, for the fleeting diversion you unwittingly give me.

Simpson's Point

herculean

i'm about at the end of my tether. tapped out. at my wit's end. i'm burnt to a crisp. this pandemic thing—which didn't have to be as bad as it is, with over 400,000 americans dead—is doing me in. and i know i am not the only one. having said that—and before i continue—i must express my gratitude and acknowledge my privilege that my husband still has a paying job, we're comfortable and well fed, and none of our friends or family members, even the ones who got covid, are dead.

still, time spent with my son while he's been home from school since last march has been a struggle, especially of late, probably because of winter and because the stress is cumulative; nearly seventeen years of spoon-feeding and changing diapers and pulling up his covers in the middle of the night can get to a person, not to mention his seizures and behaviors associated with the antiepileptic drugs he takes. days are mind-numbingly monotonous. the weather doesn't always cooperate for our walks outside in the garden and back meadow. he's so demanding, intense and gropey, if that is even a word. sometimes he shrieks and grouses and cackles so much i want to scream. all too often i give in to the emotion.

i continue to wonder how the hell i am going to do this for the rest of my life, while at the same time cringing at the notion of strangers taking care of him, what with the high turnover in most group homes. neither seems like a good solution. both give me pause, thinking of a way out of this conundrum.

i sometimes find myself dreaming of being childless and single, able to do whatever i please and go wherever i want to go whenever i want to. i know i am not alone. i think of my mother and wonder how she cooked and cleaned and shopped and laundered for six kids and my father. herculean, really. but we're all doing it in some form or other during this pandemic.

gonna be a long winter

While walking Smellie this morning it was twelve degrees with a windchill factor of minus two. I braved the cold with layer upon layer of winter gear. Smellie, who seems to thrive in cooler temps, remained untroubled. By day's end, there could be as much as a foot of snow to shovel. Roads aren't yet plowed well, so a long car ride is not on the schedule.

Technically, it's not even winter yet. Nonetheless, here we are stuck indoors without much to do. Michael reminded me that, because of the pandemic, Calvin likely won't be back in school for another few months at best, not until he can get the Covid vaccine.

So, it's gonna be a long winter. We can't send Calvin to school for several reasons: he won't keep a mask or shield on his face; he touches and sometimes bites and mouths surfaces—windows and their sills, tables, banisters, the backs of chairs, radiators; he puts his fingers into his mouth frequently; caregivers won't be able to maintain a three- to six-foot distance since they have to walk within arm's reach to keep him safe, and they have to feed him, toilet him and change his diapers. Calvin's underlying health conditions—most significantly, perhaps, his epilepsy—put him at great risk of complications or death if he were to get Covid. People with developmental disabilities are three times more likely to die from Covid than the general population. Moreover, Calvin's school is not routinely testing students, faculty or staff. To make matters worse, infection rates in Maine have spiked recently. The stealthy virus is everywhere in the community. Finally, if Michael and/or I were to get very sick, without family nearby or nurses to help take care of Calvin, we'd be in some serious trouble.

So, it's gonna be a long winter. But because of Calvin we've had years of practice at sheltering in place with little to do and virtually nowhere to go.

P.S. It has been sixteen days since Calvin's last seizure. I attribute a handful of long(er) stints these past two months to an increased dose if homemade THCA cannabis oil. Thought you'd like to know.

lucky couples

Need I tell you, this runaway pandemic is taking its toll. Days are long(er) and monotonous. Calvin hasn't been in school since March; he won't keep a mask on his face and we can't risk him getting Covid and bringing it home. He can't even remotely access a remote non-academic education, mostly because he is incapable of attending to a screen, but also because it is yet unclear what simple abstractions—like interpreting a talking head on a small monitor—he can comprehend (not to mention he bites and chews and bangs the crap out of everything.) While other parents might wish their kids would get out from under their electronic devices, Michael and I pine for a day when ours could sit quietly just to watch a movie or video so we could get something done. Instead, and likely due to drug side effects both current and residual, Calvin is pretty much in constant motion. He just can't sit still.

So, my days are spent with my son in tow, traipsing around the house and yard and sidewalk as long as there is not too much ice or snow. I give him a bath, feed him, go for long car rides looping along back roads with a few essential glimpses of the water to keep me (mostly) lucid. Every morning before Michael heads to his studio, and on most evenings if he gets home early enough, I walk Smellie to the fields, ducking into the wooded trails along the perimeter.

On these outings, I see lots of bicyclists, walkers and runners. I watch duos strolling along winding roads. I see couples walking frisky new puppies and lumbering mutts with grizzled muzzles. I see twosomes in their bright running and biking regalia pumping up gradual rises and flying down hills. My first reaction when I see these folks is one of solidarity; I'm glad people are getting out and about in all kinds of weather. Strangers or not, it's good to see them. Then, as they disappear over my shoulder or in my rear view window, I realize—during the pandemic—how impossible it has been for Michael and me to catch a break together as a couple. I realize that our friends virtually never see us alone together. Sigh.

Because Calvin can't stay home by himself like other teens, there's no chance for Michael and me to head to the forest or beach for a morning stroll together, no chance to grab takeaway burritos and sit on a park bench, or plan a seaside picnic. And the difficulty in doing so is not just during the pandemic. Our kid will never grow up. He'll never spend a day with a friend. He'll never go on a sleepover. He'll never take a job. He'll never go off to college or travel abroad. He may never even move out of the house.

If this sounds like a pity party, it is. I allow myself to indulge once in a while, though I'm not looking for sympathy; everyone has their struggles. And to be fair, dear friends of ours have offered to take care of Calvin while Michael and I go off on our own but, pandemic or not, that is easier said than done by either party.

So for now, at least, the four of us (we take Smellie everywhere) will climb into the car for our weekend drives. We'll put Smellie on the leash and Calvin in the stroller whenever we can get some fair weather. We'll hang out in our robes until late into the morning, sometimes listening to music, drinking extra stovetop espresso, eating eggs and toast or bran or oatmeal, watching pre-recorded late night comedy. We'll continue putting Calvin to bed before six, hoping he goes to sleep without too much trouble so we can enjoy a quiet evening together. And I'll keep taking my daily drive, feeding Calvin finger food from the driver's seat while spying other lucky couples making their way home or down the road a spell for a glimpse of the water.

Simpson's Point, almost noon.

one day at a time

Dreary, gray November day. It's pouring outside. Streets are flooded. A city worker claws heaps of needles and leaves from a storm drain. The effort looks futile. Calvin is in the back seat going batshit crazy. It has been eight days since his last grand mal. He has been ramping up by degrees. I wonder if this storm—the lightening and thunder, the low barometric pressure—will bring it on. If he could just eke out another day.

As we head straight into winter, I can only think of spring. Twenty-twenty has been a rough one—so many (more) unarmed Black people getting killed by police, peaceful protestors being gassed and shot with rubber bullets, raging wildfires, a runaway pandemic, a neglectful president, shuttered stores, boarded-up windows, millions unemployed, legions sick, a quarter million dead, the election, the bullshit claims of widespread voter fraud, the lack of concession. Even my large-leaf rhododendrons failed to bloom this summer. As if so many friends, I felt the blossoms' absence in June. I once heard that plants produce when they are stressed. This year the same shrubs are covered in buds, promising a psychedelic explosion come spring of 2021.

Sadly, that's a long way off. As for pandemics, who knows when we'll see a vaccine. For now, we just have to put our heads down, like this morning on my walk with Smellie. Brandishing my umbrella against torrential winds, somehow I managed not to let it turn inside out. The world feels like that right now—inside out, upside down, pressing in.

To keep us and our community and nation safe, the three of us will be spending Thanksgiving—for the first time in nearly two decades—alone. It'll be just fine, even nice for a change. We'll be gladly captive with each other and the aroma and flavors of roasted turkey, garlic mashers, honied carrots, cheese bread, green beans and pumpkin pie a la mode. We'll be sipping bourbon and wine in front of a rolling fire. Though we won't be gathering with family or friends, we have a multitude to give thanks for.

As I drive down lonely roads, I consider the sacrifices and hardships caused by this virus—the monotony of staying in, the sorry lack of gathering with friends inside our home, Calvin's inability to attend school remotely or in person, the loss of other kinds of ventures. I think about my own long-term limits on freedom due to Calvin's chronic illness, his dire physical and mental condition. Then I think about my pen pal who has been on death row since he was a teen barely older than my own. His mother's name is the same as mine. He's been in prison for a decade. He writes to me from a cell that is freezing this time of year. He describes what it's like: Don't let the time do you, you do the time; I fight off demons every single day trying to keep it together; It ain't easy just got to take it one day at a time.

During this crazy coronavirus time, it seems that's good advice for us all.

ice cream sundays

Inevitably, on Saturday and Sunday morning walks with Smellie, one neighbor or another will ask if I have any big plans for the weekend. My answer is always the same: nope.

 

With a kid like Calvin, most kinds of outings are difficult and others, especially during a rampant pandemic, are impossible. We are faced with major stubbornness if we try to take Calvin for walks on the beach or in the woods, so we pretty much never do that anymore. We no longer take him to the grocery store because he won't keep a mask on his face and he drools on and touches everything with fingers that go directly into his mouth. We almost never go on overnights because we can't be sure of securing a safe place for him to sleep, and though it has been years since he has been hospitalized for prolonged seizures, that fear is always in the back of our minds.

So, a typical weekend day for us starts at the same time as every other day, between 5:30 and 6:15, which is when we have to give Calvin his time-sensitive anti-seizure medicines. Michael makes coffee for us and breakfast for Calvin, reads a bit of news then goes for his 5K. When he gets back, I often make eggs and toast for everyone, then I take Smellie for a walk. After showers, we go for a car ride. On Saturdays, we venture to the next town over to pick up a freshly-baked baguette, then stop for a spell at the boat launch where we watch the Kennebeck river in its various stages of calm and choppy. Once in a while, we get the spot all to ourselves. Mostly, I stay in the car feeding Calvin and, if there are no boats, Smellie ventures into the water. On mild days we all get out for a bit to let the sun warm our weary bones.

 

Once home, Michael heads off to his studio for a few hours to develop film, make pictures, prepare for the week's classes or work on his next book. On days after a seizure, like today, Calvin spends most of the day napping in my lap on the green couch. Michael usually comes home early to hang out with us before making dinner.

Sundays are nearly carbon copies of Saturdays with the exception that we get ice cream from the drive-thru just after it opens. On the drive home, I feed everyone a few bites of one of our favorite flavors—gingersnap, coffee oreo, mint oreo, blackraspberry, chocolate peanut butter cup—then put the lid back on and save the rest for later. 

Pandemic or not, these are our weekends—mundane, highly limited, predictable and yet satisfying—and will be for the foreseeable future.

Michael walking Calvin down the dock a few weekends ago.

decade

Like the pandemic, my son Calvin causes time to expand. Perhaps it's his protracted development—exponentially slower than watching paint dry or grass grow—which makes time-space stretch so impossibly. Unlike other parents, Michael and I don't experience fleeting years between diapers and high school graduation, because as the years pass, our boy never really grows up; he's much the same now as when he was little, though thankfully a bit less manic than when he was taking very high doses of three powerful antiepileptic drugs (see below).

Life with Calvin is a paradox in that, though time nearly stands still, it's astonishing to think that he was only six when I wrote my first blog post a decade ago. Maybe it's the writing that moves things along and makes one monotonous day different from the last. Maybe my prose and occasional poetry—or more so, perhaps, the musing that leads to them—are what inject meaning and richness into a life which otherwise might be mind-numbingly tedious, dull and unfulfilling. And how curious to think that, had Calvin not come along, I might not be writing at all. I might be stuck in a stressful, thankless job designing clothes for a hierarchical, outdoor catalog company. I might not be thinking and working so seriously to reveal purpose, to explore myself and others, to underscore and try to right injustices. I might not be considering life from the perspective of disability and other forms of marginalization, and their particular aspects of everyday living which are still unseen by—though not necessarily hidden from—too many Americans.

 

So, ten years, 2,024 entries and 1.3+ million hits since my first blog post, back when I didn't even know what a blog was, I am indebted to Calvin, and Michael (whose idea it was to write a blog) for helping me celebrate what has become a labor of love.

   

Calvin back in August of 2010, not long before I embarked on this blog.