staying safe

Calvin's final day of summer school was a sweltering one. When he got off of the bus, his mask was soaked with drool. Wiping his face as best I could with the corner of his bandana, I felt sorry for him; it must be near impossible to breathe through a saliva-soaked surgical mask, especially when it's ninety degrees.

As the world grapples with a runaway pandemic, our nation is approaching 640,000 deaths from Covid-19. To make matters worse, the more dangerous and contagious Delta variant is fueling a resurgence that is ravaging mostly unvaccinated communities, their healthcare facilities and workers. Regrettably, this predicament was unnecessary; some leaders haven't been aggressive enough implementing clear measures and messaging that could truly cut the virus off at the knees. Too many people still refuse to be vaccinated and/or wear masks, many of them led by mis- and disinformation they've gotten from certain politicians and rabbit-hole posts spread on social media. Tens—if not hundreds—of thousands of hospitalizations and deaths could have been prevented if certain so-called leaders hadn't downplayed and politicized the pandemic and things like wearing masks, and had we all been more deliberate and steadfast in protecting ourselves and our neighbors. It seems we're always playing catch-up with what is an ever-evolving and aggressive virus. Collectively, we haven't done what it takes to get ahead of it. We have been and continue to be reactive instead of proactive. This hot mess is of our own doing, though some folks get more credit than others for turning it into such a shitshow.

Despite these grave developments, there are those who remain staunchly skeptical about the need to get a Covid vaccine and/or wear a mask. Some are convinced that they are largely immune because of their youth, healthy diets and/or lifestyles, forgetting that in recent years they've been sick with the flu. Others aren't following the science about vaccines' overwhelming safety. Still others believe in wild and dangerous conspiracy theories, most of which can be easily debunked. Infectious disease experts explain that variants are more likely to emerge from the unvaccinated since the virus has more time to replicate and mutate in a body that doesn't have a vaccine in place to impede its progress. Also, unvaccinated people shed the virus longer than vaccinated ones whether symptomatic or not. Moreover, the Delta variant's viral load is 1000 times that of the Alpha strain. Unvaccinated people make it all the more possible for the emergence of an even more contagious, virulent and deadly variant which might prove resistant to vaccines. Then what?

My thoughts wander again to Calvin—my infant-toddler-teen whose seizures seem tugged into action by full moons, new moons, dips in barometric pressure, high humidity, and illness. Though all three of us are vaccinated, I worry about what might happen to us if we were to be infected by the Delta variant (the vaccines are highly effective in preventing severe illness, hospitalization and death, but we can still get infected.) I know what Covid can do to hearts, lungs, and brains, but the full, long-term implications of Covid are still unclear. I worry about Calvin; I have little doubt that some of his classmates this fall will attend school unvaccinated, not because they aren't old enough, but because of their parents' dubious stances on vaccines.

Please, for your neighbor's sake, mask up and get vaccinated.

gathering again

it was a tough call to make: whether to still celebrate if it rained. in the end, we went ahead. luckily, it only sprinkled. thanks to vaccines, a bunch of us gathered to commemorate some semblance of normalcy amid a rampant pandemic. nearly two years had passed since the last time we'd come together like this. our guests' presence, plus a shot of maker's on the rocks, popped me out of my day's doldrums—a despair brought on by calvin's premature seizure, a gorgeous day having been trapped indoors with a listless kid, the dread of more fits, and doubts about the evening's outdoor event.

thankfully, or so it seems, BYOEs (bring your own everything) work perfectly these days. it's easy for everyone. we just provide the venue. the bawdy jokes and natural banter between friends and neighbors flows like wine from a jug. handfuls of chips were chomped. drinks were drunk. a big fire was lit. mosquitoes bit arms and legs. the house being off limits, folks got just a tiny bit wet. some of us let ourselves get ever-so-slightly tipsy.

i talked and joked with old and new friends about my fantasy to be a backup dancer-singer for an eighties band, about swimming nine miles in a day versus running marathons, about documentaries and other film genres, about southern versus northern racism, about poverty, perennials, farming, sailing, pennellville road, and a bit about calvin. i gave hello and goodbye hugs to all of our guests. everyone seemed to have a nice time. all but one guest left by ten.

with some help from our favorite straggler, i cleaned up a bit then gave my husband and friend goodnight hugs and kisses. a weary smellie followed in my steps. entering calvin's darkened room, i checked on him. he was sleeping soundly in his bed. as i crawled into my own, i saw the silhouettes of my husband and our friend against yellow flames and red embers. the smell of smoke and sound of laughter drifted faintly through the open windows. i felt so relaxed and comforted. the worry and despair that had gripped me earlier had dissolved into the ether. i fell asleep recalling my lovely friends' faces, and of those whom i'd just met.

some kind of justice

As the mother and champion of an uncommon child—a boy who is nonverbal, legally blind, incontinent and suffers from a serious brain anomaly, cerebral palsy, developmental delay, autism and chronic epilepsy—I can describe instances of being neglected, unheard, misunderstood, dismissed, marginalized, patronized, and maligned by public servants, medical experts and society at large. I know the anguish of having a child who is sometimes treated as insignificant, undeserving, fringe, and in ways scorned and feared. I know what it feels like when others, whose care he is under—doctors, teachers, aides, nurses—don't hold themselves accountable when he gets hurt. I get angry, frustrated and indignant at what I see as injustice. Yet despite the struggles, heartaches and miseries of being Calvin's mother, I've never felt unsafe, vulnerable, discounted or mistrusted merely because of the color of my skin.

On Tuesday, I held my breath awaiting the verdict in the trial of George Floyd's modern-day lynching. Finally, I heard the words describing the homicidal defendant: Guilty. Guilty. Guilty. I exhaled and wept. I thought to myself, finally, some kind of justice, for another unconscionable offense amid generations of neglect, condemnation, oppression, abuse and murder of African Americans. 

Yet, Tuesday's guilty verdict doesn't mean the end of injustice, in the same way electing a Black president is not evidence that we are in a post-racial America.

Equity remains elusive for millions of Americans in this nation of so-called liberty and justice for all. Injustice and barbarism are the foundation of this nation's mostly-white wealth built from the ills of white supremacy, on stolen indigenous land, by generations of the enslavement, exploitation, abuse, terrorization, torture and murder of Black men, women and children. Today's mass incarceration of African Americans is a relic of slavery and Jim Crow, a way to continue profiting off of their bodies, to subjugate, disenfranchise, disempower. White supremacy and racism in this country are not superficial; like some tumors, they're pervasive and malignant, must be strangled or cut out.

Consider that many Black Americans are still fighting for: the right to vote; the right to live in decent neighborhoods and homes; lead-free water; proper healthcare; decent educations; affordable apartments; fair loans; decent jobs, raises, living wages; executive desks and seats in the boardroom; the right to move about freely; to safely drive, walk, jog, birdwatch, nap, barbecue and breathe; the right to take a knee in peaceful protest against their abuse and murder at the hands of vigilantes and the police. All because of the sound of their names and/or the color of their skin.

So, too, Black Americans are still fighting against being racially profiled and therefore unjustly suspected, stopped and frisked, pulled over and assailed, followed, stalked, interrogated, bullied, roughed up, falsely accused, arrested, jailed, unjustly sentenced, choked or shot before they even have a chance to state their case.

Today, we can breathe a sigh of relief for some kind of justice done in a Minneapolis courtroom last Tuesday, but the nation at large—with its toxic white supremacy infiltrating our military, police forces, conservative media, and halls of Congress, and its harmful racist policies and practices from healthcare and housing to law enforcement—is far from fulfilling its promise of liberty and justice for all.

Celebrating the guilty verdict in the trial of former Minneapolis police officer Derek Chauvin,in George Floyd Square on Tuesday.Credit...Victor J. Blue for The New York Times

surreal

Last Saturday morning, after having well hydrated myself, I received Pfizer vaccination number two. Other than developing a sore arm with a small bruise, I've felt fabulous. No other side effects whatsoever. As with so many things, I feel grateful and fortunate.

On my late-Sunday walk with Smellie, I went to visit my friend, Lauren, who lives on a busy corner just down the street. She and I stood in the filtered sunlight inspecting her emerging perennial garden. Although sturdy blades of green are pushing up, nothing is in bloom. Still, its potential to be gorgeous as ever is apparent. She then wanted to show me a tiny shade flower called pulmanaria. I followed Lauren through her small cottage with its screened-in porch, then down some steps into her sunken backyard. Walking through the cottage to the shady enclosure felt surreal; it was the first time in over a year I had stepped foot into someone else's private space. I was taken by surprise, my senses vibrating in a way that made me feel light and alive, and very aware of what I have been missing.

An hour later, I was back home preparing Calvin's evening seizure medications while watching him rest on the rug in the next room. Michael was busy making some delicious chicken soup. As usual, we were listening to music at a decent volume. When I closed the refrigerator door I saw a tall, handsome, neatly-bearded man standing in our mudroom. It was our dear buddy, Jens, wielding a gift bottle of champagne—something that is becoming a habit for him. At that very moment, we were meant to be gathering with him, Barbara and their two kids at a safe distance in our driveway. We were supposed to be celebrating our recent vaccinations, but Calvin's morning seizure and sluggish recovery had caused us to postpone. Jens hand-delivered the champagne anyway.

From the kitchen threshold, Jens stood and chatted with us for a bit—maskless; it had been a few weeks since he had received his J & J vaccine. I told him that I'd hug him after I reached maximum immunity on May first, warning him that he might want to wear body armor for the event. It felt surreal to have a friend in our house for the first time in over a year. It was a welcome sign of things to come.

Just as Jens left, the afterglow of the day's two surreal moments—spending time maskless and close to friends instead of at a distance—left me feeling giddy and full of hope, even though I didn't get to embrace them.

Today, some of the small-leaf rhododendrons are beginning to show their pinkish-purple blossoms. Blush magnolia buds are opening and showering their sweet aroma on passersby like me. Daffodils are dotting gardens, roadsides and woodlands. After a long Maine winter that led into a spring which still looks too much like November, and after a fifteen-month pandemic isolation, the opening world is feeling surreal. I'll take it.

Should be looking like this soon.

blasts from the past in the not-too-distant future (fully vaxed!)

real celebrations. byobs. potlucks. barbecues. standing elbow to elbow. face to face. cheek to cheek. long and frequent embraces. diminishing situational diameters. gatherings longer than an hour and with more than four people. seeing maskless faces. indoor time with my peeps. eating in the screen porch. visiting with neighbors on the same side of the street. making new friends. getting help to take care of calvin. visions of sending him back to school. working in the garden without having to mind calvin. a house full of people. a house to myself. visiting friends' homes. sharing the sidewalk. sitting in close circles around the fire pit, dining table or wood stove. roaming the fields. biking or running the roads. maybe one day going to movies and restaurants. maybe bellying up to the bar with my chickies. sound sleep. deep dreams. carefree thoughts. easy breathing.

From eleven years ago, but you get the idea. photo by Timothy Diehl

covid vaccinations!

With help from Calvin's pediatrician and the nurses at our local vaccination clinic, Calvin, Michael and I were given three leftover doses of the Pfizer Covid-19 vaccine last Friday evening. As usual when receiving vaccines, Calvin was a star, and even (mostly) kept his surgical masks on. As rain fell on our faces when leaving the clinic, I felt a wave of relief come over me.

I posted the good news on Facebook and received an outpouring of support from over 350 friends and strangers—many who follow my blog—plus over 100 loving comments. There was only one unknown person who voiced his opinion, using expletives to dis so-called Pharma poisons, told me not to be a lab rat and then wished me good luck. He went on to say something to the effect that only sheeple choose to be vaccinated. I told him not to be a troll and added:

sheeple also drive on the right side of the street for a reason.

If not for the efforts of several compassionate health professionals, Calvin would not have gotten his vaccine until sometime in late April. Now, all three of us will achieve maximum immunity by the first of May and, as a result, will be able to get back to at least a few of life's pleasures like hugs, face-to-face encounters, and having small dinner parties with other vaccinated people. For this I am most grateful.

heartening

We had seen Calvin's seizure coming for several days. At five o'clock yesterday morning it finally arrived with a godawful, blood-curdling shriek. I half expected it to last a long time considering it had been seventeen days since his last grand mal, but it was the usual ninety seconds. Afterwards, so as to monitor his breathing, I got in bed with him. Though still little for his age, he's big enough to spoon. For an hour, I held my boy as he shivered and twitched in the wake of the fit. 

Thankfully, by late morning he seemed well enough to go for a car ride. I chose to drive the close-to-home loops in case his condition went south. At Simpson's Point, the bay was socked in by fog. Within minutes of our arrival, though, it began to lift. I took it as a good omen that things might be looking up.

Despite my son's chronic condition amid pandemic miseries, I've been heartened by other events of late: the ongoing efforts of some amazing people to get Calvin vaccinated sooner than later; vaccine appointments for me and Michael this coming Saturday; the promise of longer, warmer days for gardening and barbecuing; an offer by Calvin's already-vaccinated former aide to help take care of him in the coming weeks; a seeming decrease in Calvin's overall seizures; cardinals announcing themselves on the tops of trees; an unforeseen and out-of-context greeting with the Carhart three-dog walker smiling and bicycling past me and Smellie as we strolled down our street; a serendipitous and safely-distant yet close encounter with the runner as he rounded a sleepy backroad corner. With my window down and the heat on (an alternative version of underwater respite), he paused his workout and kindly asked how Calvin was doing (he has been reading the blog.) Calvin was in the backseat trying to eat his sock.

After my late-afternoon walk with Smellie, I sat on the front stoop for a spell to watch the world go by. I could hear Calvin stomping around inside the house with Michael; I was thankful to be off-duty for awhile. As cars and folks passed by, I found myself missing my old friend Woody. His porch—high, broad and covered—was so much better for people-watching than mine, plus it came with Woody. We'd sit there for the good part of an hour. Sometimes we'd say nothing at all. Mostly, we'd tease each other or talk about the mundane. Other times he'd listen to me grieve about my little Calvin, at times wiping my tears away. Once in a while, we'd grasp each other's hand from opposite sides of the Adirondack-style bench his son had built for him. He'd tell me that I was the best thing to happen to our street. I'd say the same thing about him. Sometimes his eyes got misty. He would have turned eighty-nine this July. It's heartening to think of him.

Sitting alone on my porch, I studied a slightly irksome, partially obstructed view of the street which I found strangely unfamiliar, considering it's my home. Feeling dissatisfied, I was about to retire indoors when I gazed upwards. There, in the clear blue, I saw the half moon, white as can be like an inverted cup in the sky. It was framed by thousands of little red buds fattening up on the branches of our maple tree. Yet again I felt heartened, this time by the unmistakable arrival of spring.

Simpson's Point

renewal

spring dang sprung. got a vaccine coming on. happening in a week. calvin is on the docket, probably sometime in april. so ready for a shot in the arm. 

fifty-eight outside. left my jacket in the house. hard to believe thursday morning felt like six degrees. i swear the grass is turning green. crocuses are pushing up. one bunch is already open. no boots on my feet. just sneakers. feeling almost giddy. 

ready for tiny bonfires. for outdoor gatherings, celebrations and visits. byobs. though it still looks like november, i can see the buds on trees and shrubs plumping. hear the songbirds going crazy. want to pack the backyard with all of my peeps.

tonight—just now—i took a short walk by myself (no dog, no kid) to deliver a hunk of cake to some friends who live around the corner. it was the first time I'd been alone since i can't remember when. i felt like my old self. i'm reminded that spring is time for renewal.

back in the world again

seven a.m. clear skies. twenty-one degrees. seventeen-mile-an-hour north winds. feels like six degrees. i take smellie for her morning walk. got my fists balled up in my pockets, a long puffy coat over quilted pants over sweat pants tucked into my boots. got my scarf wrapped around my head and tied under my chin. double masks help fight the wind. between masks and hat, a mere slit exists for my eyes to peek out. so ready to get rid of winter. today, even smellie seems done.

lonely roads on our car ride this morning. just too damn cold. i see one runner—a tiny thing—her pony tail bobbing, her own fists clad in thick mittens. then, on one stretch of road i see the carhart three-dog walker brave the frigid winds on his bicycle pulling a cart miles into town. i worry about his freezing hands. winter in maine can be unforgiving.

back at home, i resume my campaign for answers to ambiguous vaccine policy. in maine, kids like Calvin are falling through the cracks; they're not adults but are old enough to get the pfizer vaccine. i've bitched about it to the governor, the head of the cdc, health and human services, my state senator. people want to help but i keep getting the same non-answer. it's frustrating. still, i try to drive home the message.

on a second car ride in late afternoon i think about the past pandemic year. of keeping my head down. staying focused. treading water while spending eight to ten hours a day alone with a kid who can do nothing by himself. i think about going nowhere save a couple of friends' driveways and a weekend stay at a rangely cabin last october where and when calvin seized. still, i feel privileged: for one thing, i'm not sick.

at a curve in the road near a pond a news break comes on between songs. there's been a change in maine's vaccine rollout. next week people over fifty can get vaccinated. better yet, starting mid april, people sixteen and up can get a vaccine! i finish listening then switch stations to hear more music. there's a moody acoustic song playing. the lyrics i hear get me: 

every day when i open my eyes now

it feels like a saturday

taking down from the shelf

all the parts of myself

that i packed away

all i know is

i'm back in the world again

like the lift of a curse

got a whole different person

inside my head

no more trudging around

stony eyed through the town

like the living dead no

i'm back in the world again

it's the only way to be

i cry like a baby. tears flow down my cheeks. i leave them there to breathe while the rest of me exhales a year of held breaths. it's been such a long time of just trying to keep it together. of not being with people. of being stuck inside these four walls. of doing everything for calvin. i think about all the hugs i'll be able to give. the faces i'll be able to pinch. just then, the runner drives by and waves at me, snapping me out of my trance. i suddenly feel lighter. it's gonna be okay, maybe even better. i turn around and head back home. the wind has waned. it's nearly forty degrees. it feels like spring.

light and lithe

i want to feel light and lithe. want to shed the layers required to fend against the bitter elements. want winter's frigid winds to end. want to loosen up the cinching in my shoulders. want to unclench my jaw and fists. want to feel warm breezes caress my neck and head. want to walk in the grass with no shoes. want to wear just jeans and tees.

i want to spring up and run for miles, if my heart and lungs and bones will still take me. i want to walk alone—no kid, no dog. give me wooded paths and fields and streets on which to thump and slap my feet. nothing is certain, but i want to try and see.

i want to feel light and lithe, want to float in the sun and read for hours, maybe fall asleep. want to be my only company. want to sip a glass of wine outside, watch the sun slip behind the trees as shadows stretch across a garden of green.

i want to get a damn vaccine. want to shed this inner angst and unease. want to drop pandemic rules which i've whole-heartedly embraced. i want to look into your eyes, see you face to face. want to gather—close—outside, not from six or eight or thirteen feet. want to hug until i'm breathless, dance until i drop, laugh until i weep (or pee.) want to see those maskless, beaming smiles dancing right in front of me. i want to party!

i want to feel light and lithe. want peace and quiet. want to release the weight of raising my disabled child, the kid who sends me up and around and upside down. and yet he helps me feel a sea of deep emotions—joy, sorrow, contempt, love, bitterness, despair, grief, pity—which make me feel so human and alive, though far from free.

Photo by Michael Kolster

other sustenance

morning walks watching the sun rise in the sky. canada geese arriving. warm southerly winds. melting sheets of ice. chirping robins. lawns and fields emerging from blankets of white. freshly-baked artisanal bread nested in a brown paper bag hung on our doorknob. distilling the essence from everything. phone calls from my family and friends. my husband. napping in the sun with my child. driving the back roads. days mild enough to roll down my window. seeing and connecting with people, if only from a distance. dreaming of running. remembering my father and mother and knowing the good i inherited from them. getting a big smile from calvin. gorgeous scenes of rolling oceans, giant kelp forests and one astonishing octopus. sitting with a friend in her front garden. feeling the ache of want and nostalgia. FIP french radio. birds building nests. buds plumping. frost on golden fields. a decent night's sleep. knowing vaccinations are coming. college students dotting the sidewalks. watching one of them try roller blading for the first time. the promise of longer, warmer, greener days.

long road ahead

Monday:

To look at my son is to think he is on death's door. Listless. Wan. Dark circles under his eyes. Sleeping with lids half open. Seizures three nights in a row. Two of them grand mals. A focal seizure an hour past midnight. His lips and fingers turn blue. It scares me. Because of the double grand mals and the earliness of this one, I make a rare move to give him Diastat—rectal Valium. It works to stop the cluster.

In bed next to him, his breathing nearly imperceptible because of the benzodiazepine, I worry: What if he were to get Covid-19? I think about the vaccine. I resent the fact that our governor switched to an aged-based rollout. The rationale is that age is among the strongest predictors of hospitalization and death from Covid. But under a certain age, that argument doesn't pass muster.

In some states, landscapers and massage therapists became eligible for vaccines before people who, for instance, are immunocompromised. People with chronic conditions like Calvin are three times more likely to get severe illness or die from Covid than others. And yet they are neglected, as if they are somehow undeserving, unworthy. I think about the anti-maskers who cling to their myth of rugged individualism and bootstrap theory, insisting we should all be personally responsible for avoiding illness (as if we aren't already doing everything possible with that singular goal in mind.) Meanwhile, they parade their maskless faces in stores and restaurants, recklessly endangering workers and patrons because of some twisted notion of freedom. No man is an island, especially during a viral pandemic. Everyone needs to do their part to suppress its spread. Don't we drive on the right side of the road to keep ourselves and each other safe from harm? Does wearing seatbelts mean we're "sheeple"? Why are some Americans so unwilling to embrace even the smallest gesture to help keep their neighbor and community safe from harm? The conceit and sense of entitlement is stunning.

I understand that an age-based rollout is more efficient and will get everyone vaccinated in a shorter period of time, but that doesn't negate the sense that some lives are seen as more expendable than others. You can't debate your way around it; an age-based rollout means healthy thirty-, forty- or fifty-year-olds will get vaccinated well before younger people with type-1 diabetes, cystic fibrosis, cancer or neurological disorders. At the current vaccination rate in Maine, Calvin won't get his until July. In the meantime, he'll likely remain at home with me, unable to attend school or come with me to the grocery store without risking exposure. In other words, for families like ours, there's still a very long road ahead.

an open letter to governor janet mills re: covid vaccines

Dear Governor Mills,

I've heard it said that a society—government, nation—can be judged by how it treats its most vulnerable.

My seventeen-year-old son, Calvin, suffers from multiple physical and developmental disabilities including cerebral palsy and intractable epilepsy. He is nonverbal, legally blind, incontinent and can do little to nothing by himself. His chronic epilepsy means his risk of serious illness or death from Covid-19 is three times greater than the general population. Despite his limitations, his life is precious.

Currently, it is unclear if children like Calvin are eligible to receive a Covid-19 vaccination as part of Maine's 1b vaccination phase. Nowhere on Maine's vaccine rollout plan are children with high-risk medical conditions mentioned. Though Calvin is old enough to receive the Pfizer vaccine, only adults with high-risk conditions are listed in phase 1b. Children age 16 and up are listed as the last to receive the vaccine as part of phase 2, which isn't expected to begin until June. 

Calvin cannot grasp abstractions, does not understand the existence or dangers of a pandemic and will not keep a mask on his face. He constantly touches and mouths surfaces and puts his fingers in his mouth with frequency. For these reasons we have kept him home from school since last March. Due to his intellectual deficits and the side effects of epilepsy medication which cause him to be restless, he is not capable of attending to a screen and therefore is unable to participate in remote schooling. I have no doubt that there are likely scores of children in Maine who fit this profile. Fortunately, I am able to take care of our son all day every day while my husband is at work, though it has been physically and emotionally challenging. 

Considering the fact that vaccines are not 100% effective and experts have not determined if the virus can be shed by vaccinated people, it is critical that vulnerable kids like Calvin and their family members get vaccinated as soon as possible. Needless to say, if Calvin were to get sick it would be devastating for our family. Moreover, if my husband and/or I were to get seriously ill or die, it could prove catastrophic in terms of providing for Calvin's care since he requires twenty-four hours a day of hands-on supervision and assistance with all activities of daily living. In other words, caring for Calvin while maintaining a household requires both of us.

If Maine is to pass the moral test of caring for its most vulnerable, it is imperative that children age 16 and up with high-risk medical conditions be added to the phase 1b Covid-19 vaccine rollout without delay.

To learn more about Calvin, I invite you to read my blog, which Dora Anne Mills, Senator Angus King and State Senator Mattie Daughtry follow.

Thank you in advance for your consideration,

Christy Shake

An abridged version of this letter was sent directly to Governor Mills.

Calvin with one of his favorite toys.