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.

different vistas

Driving along winding roads, I reach behind the passenger seat. My son grabs my hand. His is soft and small. Mine, thin-skinned and wrinkled. When I tickle his fingers he smiles, head back, mouth open. Nearly seventeen years ago those fingers were translucent, adorned with tissue-thin nails smaller than seeds on a bagel. Between his teeth he works on the floppy ear of a crocheted rabbit. By now, it's sopping. He has taken off one shoe and one sock, chewed on them too.

We drive like this for the better part of an hour on the same familiar roads. From behind the wheel I feed him blueberries, halves of grapes, segments of clementines and chunks of cheese and chicken sausage. I watch him in the rear view mirror to ensure he chews each piece well. We stop every so often so I can photograph panoramas of the fields, the pines, the water beyond. I wish I could pull to the shoulder, abandon the car, escape my son and even the dog and get lost in the meadows by myself for hours. Maybe I'd lie in the snow and study the clouds. Perhaps I'd get to the the water's edge, perch myself on a rock and melt into the vista.

It has been nearly ten months of mostly back-to-back days with Calvin while Michael is working. Some days can be as long as nine hours. How many more months will this be our routine? When will we be able to get the vaccine? Despite certain hardships, frustrations and limitations, we are keeping our heads above water. Michael has a paying job so I don't have to work (outside of caring for our son.) Michael does all of the shopping and cooking and most of the laundry. Calvin both buouys and sinks me with his want, and so I bob. Last month, he went twenty-two days without any seizures. Then one came six days later and two six days after that—a different kind of vista. Still, we have so much to be grateful for—shelter, heat, clothes, food, so many creature comforts.

On the drive, I look out at the silvery sky and pines dusted with snow and think about my pen pal who is on death row. I doubt he's seen a tree in years. I wonder what his vista is. In letters, he tells me he prays for Calvin. He says he is busy despite spending twenty-three hours a day in a tiny cell. He speaks of waking up every morning in Hell. He mentions how cold it is until they stretch plastic over the windows. He says he's seen more people die in prison than in the Freeworld. He fights to stay strong. He writes me lines from a favorite song.

My heart been broke so many times, I don't know what to believe. Granny said it's my fault, it's my fault I wear my heart on my sleeve. So I think it's best I put my heart on ice, heart on ice because I can't breathe. I'm gone put my heart on ice, give you the best of me.

On the drive home, I think of my childhood friend and neighbor whose autistic son, the twin of a neuro-typical sister, died unexpectedly last summer. Like Calvin, he was nonverbal and loved everyone unconditionally. Then, I think about my friend's little girl, so much like Calvin, seizures and all, who died last March from complications of Covid. I think about my friend's daughter who overdosed on opioids. Why do I know so many parents of supple children—Lily, Rose, Rainier, Kari, Jennifer, Katie, Kellie, Mike, Ross, Mikki, Martin, Cyndimae, Charlotte, August, Arnd, Kevin, Ronan, Elisef, Andrew—who perished?

Coming up a rise to a bend in the road, a gorgeous and familiar view emerges: a rolling hillside above a salt marsh wading into the water. The sun, shrouded by clouds, makes the whole sky glow. As we round the bend, the vista disappears behind suburban homes. I wonder who lives there. Wonder if they have kids. I wonder how it feels to lose a child—to illness, to accident, to epilepsy, to drugs, to suicide, to prison. Though the vista, now behind us, is a clear shot from the car, I wonder if Calvin sees it, can make sense of it, recalls it as one we've passed by nearly every day in this pandemic. I wonder what kinds of vistas—if any—are ones he loves. I will never know.

a different vista

skin in the game

Recently, I saw a meme asserting that the reason some people don't believe Covid-19 and racism are real or serious is because neither has affected them. I concur. As the mother of a significantly disabled and chronically ill child, I experience a similar dynamic: other's underestimation, denial or lack of understanding and empathy regarding the challenges we face in navigating and enduring the complex and often sorry world of our child. 

While walking Smellie at the fields the other day I heard a twelve-minute segment on NPR about a disabled woman's struggle to survive in a hospital where the doctors and nurses repeatedly dismissed the notion of her quality of life because she couldn't walk or talk. In doing so, they withheld critical medical care which led to her death. She was only 36. Listening to the story, I was reminded of how Michael and I sometimes feel when we attempt to advocate for our nonverbal, legally blind, autistic, incontinent, seizure-prone, intellectually and physically disabled, utterly sweet and defenseless child who can do virtually nothing by himself. Despite Calvin's struggles, he has a certain indisputable quality of life, and he touches people in meaningful ways. In other words, his life matters. And as his best champions who know him far better than anyone, so does our advocacy for him.

Beginning when Calvin was two, we met with neurologists whose virtuous aim was to eliminate his seizures, albeit seemingly at any cost. To achieve their goal, they prescribed highly addictive benzodiazepines and increased those and other drugs to debilitatingly and sometimes dangerously high doses, usually downplaying or denying the side effects caused by the drugs. That these physicians did not have children of their own suffering from medically refractory epilepsy allowed them to be somewhat divorced from grasping the drugs' heinous side effects. This led to what often felt to us like the cavalier prescribing of the medications. These doctors couldn't know the anguish of seeing their own precious child go berserk, become a zombie, careen, shriek, cry, stumble, regress, wither away, explode, panic, perseverate. In other words, their guidance was worthy of question because they had no skin in the game, (which is not to say their advice should have been utterly disregarded.)

Some of the best treatment we've received—and to be fair, we have gotten plenty from humble specialists who are the most sympathetic listeners—was from two emergency room physicians whose eight-year-old daughter had epilepsy. Calvin was eleven that time he was admitted to the ER after a cluster of seizures which weren't responding to emergency medication. Immediately upon discussing a plan to alleviate the spate of fits, the physicians, who worked consecutive shifts, let us take the helm. They allowed us to administer Calvin's cannabis oil to him, something that most hospitals prohibit. Their empathy was palpable. Their ceding to our strategies was clear and deliberate. Because of their daughter, they had skin in the game and could empathize with our situation and responded accordingly.

When Calvin was an infant-toddler, I was upset by a magazine article about a mother of healthy sextuplets. When I expressed my resentment, one of Calvin's in-home nurses responded, "You're not over that yet?" Apparently, my lingering grief, sense of loss and despair over having a disabled, feeble, seizure-racked child was unreasonable. Also early on, during some of Calvin's demanding in-home therapy sessions, various professionals told me that Calvin, my tiny, limp premie with his incomplete brain, would cry in order to manipulate me into picking him up. Upon hearing this, my heart began to pound. The truth was, my fragile child was in distress and simply couldn't cope with the colossal tasks being asked of him. It hurt me that they couldn't understand.

Some years ago, I read that the cells of a fetus remain inside their mother's body—her tissues and bloodstream—for decades. I reason this might account for what is commonly referred to as the maternal bond, and might explain why the gut instincts of mothers seem so often right.

I recall too many times I wish I'd followed my gut rather than various specialists' recommendations. As one with the most skin in the game (besides Calvin), I should have patently refused to put him on that first benzodiazepine when he was three. I should have taken him off of the rigorous ketogenic diet when it clearly wasn't working. I should have questioned allowing a painful and bloody intubation when it didn't seem necessary; I should have been more assertive when asking for the best expert to insert Calvin's IV before he lapsed into a forty-five minute seizure, one that I had sensed was looming despite the doctors' and nurses' skepticism. I should have refused the piling-on of medications and the ratcheting-up of doses to harmful levels.

But, as with racism and at some level, Covid-19, there's an element of society that tells us things are not as bad as they seem. We're told everything will be okay. We're led to believe we are imagining or exaggerating things. We're taught to doubt ourselves, and to unquestionably trust and comply with authority. We're sold a bill of goods that experts undoubtably know our children better than we do. We are judged—for how we deal or don't deal with adversity, for our assertiveness, our demands, our expectations, our protests, our impatience, our tack—by people who have no skin in the game and by those incapable of fully understanding—despite thinking they do—what it's like to live with, love, raise, advocate and fear for a disabled, chronically ill child ... or a nonverbal loved one in the hospital with suspected Covid ... or a mother of a child with black skin.

February, 2015, Photo by Michael Kolster

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.

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.

the gravity of it all

The gravity of the sun and moon makes tides ebb and rise, makes spells befall my son. At least it seems so. Twice he seized this weekend, on the brink of a new moon. The arrival of both fits was stealthy, no major ramp ups, no mania, no marked malaise, just his usual restlessness on what has become—because of coronavirus—an ever-shorter tether.

In the wake of last night's grand mal, Michael and I sat in the dark with Calvin, I on a step stool next to his bed, Michael in a chair he brought in from another room. Plates in our laps, we ate dinner in silence as our boy drifted back to sleep. Occasionally, I put my face next to Calvin's, or licked a finger and held it under his nose to make sure he was still breathing; it's the twenty minutes, or so, after a grand mal when the risk is highest of succumbing to SUDEP (sudden unexpected death in epilepsy) particularly for someone like our son.

Just before midnight, I woke myself crying out in a dream about my late father, though not the one in which he is whisked helplessly into space by a roped bundle of helium balloons caught around his ankle. As I came to, gale force winds were hammering the house and rocking the pines in their foundations. Rain and debris from nearby trees pelted the windows. Along with the new moon, I wondered if the approaching torrent had weakened Calvin's fragile seizure threshold. I padded into his room and slipped him a little extra THCA cannabis oil hoping to prevent another seizure from gathering momentum.

For over three hours I laid awake listening to the storm. I tossed and turned: worrying about my loved ones who got Covid and wondering if they'll fully recover; exhausted from nine months of caring for Calvin six to eight hours most days by myself; grumbling about another of Calvin's IEP meetings in which his one-on-one therapies continue to be whittled away despite the absence of any in-person or remote schooling since March. Just after I heard the clock chime three, I finally fell asleep.

Today, Calvin has been cat-napping on the green couch. He sleeps for minutes at a time, wakes, gets off the couch—or me—then on again and rests some more. We will likely spend the entire day this way as he recovers from the grand mals.

As I sit here considering options for a title of this post—gravity, new moon, life storms—I search my blog to ensure I haven't used any before. I type in the word gravity and find this one. I read and mull over each word, nodding my head slightly as I go. Then I watch the attached video, which gives me the chills. At the end my eyes and nose are stinging, my face crumpling up as I begin to weep. It's so hard, this life with Calvin, made worse because of coronavirus and the absence of school or nurses to help ease the load. If not for my husband, the weight of it would be colossal—the seizures, the sleep deprivation, the angst, grief, loss, frustration, anger, inertia—the immense gravity of it all.

covid-19

Today, I learned that two people whom I love dearly have been infected with Covid-19. It's possible, if not likely, that they've infected others.

The news made me recall a recent comment on social media: "You don't die from Covid, you die with Covid." I couldn't believe my eyes, couldn't believe the (willful?) ignorance behind such a reckless statement.

People, please. For the sake of the nation and the welfare of its people, especially vulnerable folks—the elderly, the infirm, Black, Indigenous, People of Color, children and adults like my son Calvin, and those with other preexisting conditions like cancer, diabetes, COPD—please stop spreading misinformation about Covid-19. Just stop. And take precautions not just for yourself, but for others: wear a mask indoors and in public spaces when near others; understand that the only reliably safe Covid pod or bubble is your own household.

Here are some facts:

Fact: Covid-19 is not "just like the flu;" First, Covid-19 can cause serious complications including long-term damage to the lungs, heart, kidneys, brain and other organs. Second, it is thought to be substantially more deadly (possibly ten times or more) than most strains of influenza. 

Fact: Increased testing does not fully account for the rapid increase in reported cases; that is a false and reckless narrative. While more testing helps to reveal existing cases, the fact is the virus is spreading exponentially. For evidence, just look to the recent spike in hospitalizations and deaths nationwide, even in just the past two weeks. On Thursday, states reported 163,000 new cases of covid-19 and over 1,500 deaths—the highest number since May. Sixty-six thousand people are currently hospitalized. Texas has had to set up mobile morgues.

Fact: People don't just die with Covid, they die from Covid. Evidence: according to data from the CDC, the US has had nearly 280,000 extra deaths this year as of the end of September. That roughly correlates to the Covid-19 deaths thus far this year, which is rapidly nearing 250,000 (and thought by experts to be undercounted.)

Fact: Many people with Covid-19 are presymptomatic or asymptomatic, which means they could be unwittingly spreading the virus to others.

Fact: Doctors and public health officials are saying that small gatherings—dinner parties, carpools, playdates—create perfect conditions for the virus to spread among people who are crowded into poorly ventilated spaces. Experts remind us that we should avoid spending more than 15 minutes (in any 24-hour period) within six feet of people who don't live in our household, and they are begging folks to stay home for the holidays this year—i.e. just because he's your grandpa or grandson doesn't mean he doesn't have Covid.

Fact: Scientific research shows that wearing a mask helps to prevent the spread of the virus to others and could help to prevent getting it. Keeping public safety in mind, wearing a mask is no more of an infringement on our freedoms than wearing a seat belt or driving on the right side of the road; we follow these precautions to keep ourselves and others safe from harm. We could consider wearing a mask as a tiny, patriotic sacrifice for our fellow Americans.

We can stop this virus' wicked trajectory if we are committed. For me, all it took was imagining my husband and/or my son in the hospital.

Wear a mask to protect others and to protect yourself. It's not that hard. What's hard is losing a parent or child to coronavirus. What's hard is being on a ventilator for weeks. What's hard is dying in a hospital without loved ones nearby. What's hard is working sixteen-hour shifts to help keep Covid patients alive. 

What's hard is knowing it didn't have to be this way.

Calvin in the hospital, 2006

so little time

so little time these days to write my blog. my memoir has been neglected. leaves pile up on the ground outside. dust bunnies collect in the corners of the house. days are getting shorter fast. the sun is low, even at high noon. i see it slung in the sky above a tidal inlet where workers break their backs harvesting clams from the mud. 

calvin went sixteen days between seizures. in a month's time, he's only had four grand mals. his focal seizures are at a record low this year. he's taking way less medication—only one antiepileptic pharmaceutical. it seems my homemade thca cannabis oil is what's helping most, and that we are treating his anemia.

he's growing like a weed, though still tiny for someone who will be seventeen come february. almost five feet now. eighty-three pounds. we're still lifting him. keeps us strong, though not exactly young. 

dawn isn't coming until six-thirty. sun is setting at four-twenty today. tomorrow will be two minutes and twenty-four seconds shorter. so little time to do much of anything these days. the pandemic sadly rules.

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.

chaos and order

Maybe the low barometric pressure caused the fit to appear. Perhaps its arrival was due to the rapid growth my son has experienced the past few months. Could it be that his new medicine is at too high or too low of a dose? Is he feeling the effects of this crazy world where chaos enables the coronavirus to rule? Are we ever going to curb these weekly seizures—these synapses firing in sick unison—which rack his body and brain? Do Americans have the wisdom, humility, selflessness, compassion and dedication it will take to defeat Covid-19?

Outside, my garden is in good order. Mulch is in its place, its weight suppressing undesired weeds, its color reflective of of the wet trunks of trees. Any errant growth is neatly trimmed, withered blossoms picked and tossed into the compost. Despite my best efforts, I can't adequately control my son's condition, but the shrubs and trees which hug our home I can, to some extent, restrain. They seem responsive to the attention I give them, do well being trained.

On backroads and along the coast, life is wilder. Thunder rolls from across the bay. Lightening strikes like white neurons through skies the shade of gunmetal gray. Rain pelts the windshield in half-dollar drops (what happened to the swarms of bugs that used to splatter the glass?) A lone Confederate flag hypes our nation's racist foundation and its bloody-awful legacy. Black Lives Matter signs, which righteously populate lawns and drives, are looted by trespassers—traitors, fools, thieves.

Back at the house my son recovers from the seizure. Overnight, the rain cleansed streets, quenched flowers, grass and leaves. Day lilies are exploding like little suns in apricots, yellows and reds. My boy is not yet back to baseline. He presses and pokes his roving eyes and frantically knits his fingers, then covers his ears as if to shield them from some unheard racket. But there's no thunder. Just the distant threat of chaos and the so-called tyranny of order.

advice and intuition

She cried the cry I've cried so many times. Helpless, hopeless, sleep deprived. Racked by seeing her child repeatedly seize. Pummeled by too many drugs to manage and consider, enduring their countless impossible side effects. Exhausted by too many hospitals and doctors, days on end of spoon-feeding and changing wet and poopy diapers, all compounded by stresses of the coronavirus. I know the feeling, that sense of drowning. I picked up the phone and tried my best to throw her a life ring.

This mother had previously connected with me on a social media page about epilepsy. She was reaching out again for advice about Onfi, which was the second of two stubborn benzodiazepines (think Xanax, Valium) that Calvin was on for more than half his life. It took us four years to get him off it. Onfi had been prescribed to help Calvin wean from the first benzo, Klonopin, which he regrettably started taking when he was just three years old. His neurologist at the time, who I'll refer to as Dr. Rx, added Klonopin to Calvin's regimen as a bridge drug while we titrated another, Lamictal, to a therapeutic level. The move was totally unnecessary considering a second drug, Zonegran, had already been prescribed to serve that purpose. I felt it was a cover-your-ass maneuver. I questioned Dr. Rx's logic, asked why he prescribed Klonopin when benzodiazepines aren't meant for long-term use, but at the time I wasn't confident enough in my own research or assertive enough to press further. I was so green then. Everything was scary, new and confusing. And Calvin, even at three, was so tiny. But I should have known since I had questioned Dr. Rx's prescribing of the previous drug, Depakote, which risked causing liver damage especially in someone like Calvin; after six months, it appeared to be doing just that. When it came to the Klonopin, I was told Calvin would be on it for just a few weeks, but despite my repeated pressure to take him off of it, he remained on it for over a year, making it more difficult to take him off of it without experiencing a doubling of his seizures and the introduction of another benzodiazepine, aka Onfi.

During the course of my conversation with this mother, I tried to lessen some of her worry over having re-dosed the Onfi after her child had vomited. I hope I disabused her of any guilt or fear. I described how, years ago, neurologists never really knew how to council me in identical situations. Each neuro had a different suggestion for me, which were clearly best guesses, and in the end I always relied on my intuition. This mother and I talked through her situation. I told her what I knew about Onfi's long half-life. I asked her some questions about her son's behavior and seizure activity during the wean. Together, we strategized, deciding it might be best to skip his bedtime dose, then to give her child his morning dose a little early.

"Above all," I told her, "trust your gut," suggesting that if in the middle of the night things didn't seem right with her child, she shouldn't worry about giving him his next dose; she could get back on his regular schedule gradually. (In the end, our plan worked.)

I went to sleep remembering those awful moments of doubt, guilt, self-pity and angst, all exacerbated by days, months, years of too little sleep. I tried to recall what Calvin was like before his epilepsy diagnosis and before starting a battery of antiepileptic drugs—sometimes four at once. I imagined what he might be like if he'd never taken so many mind-altering medicines, especially at a crucial time of brain development. I drifted off wishing this mother strength, wishing her baby peace and healing, wishing epilepsy didn't exist.

A photo of Calvin just before his 2nd birthday, before he was taking any anti epileptic drugs.

seeing and breathing

the tick tock of clocks belies the passage of time. slow-motion video feels more real. i reconsider breathing—quick and shallow, deep and labored. I regard his hollow eyes and shiny lids and wonder if i am seeing things. he takes my hand. his is blue-veined, skin like tissue. i stroke his arm. rest my palm on his bald forehead. tell him that i love him. get him to crack a smile. if only i could hold him close one last time.

on long car rides i can sometimes flee grief and monotony. like a roller-coaster, even familiar hills and bends and vistas make me feel more alive, as if i'm actually going places instead of in circles. still, i'm grateful for the car and roads and time and space that take me away, even with the kid in tow. the point changes day to day. gray clouds stitched to hard waves become blue skies kissing land and sea. the view is one none of us will ever see again.

there's a scent in the air that i can't finger. witch hazel blossoms are long past. lilacs have gone to seed. fragrant azaleas have spent their lazy blooms. might it be honeysuckle? roses? peonies? not the sickly sweet that used to seep out of calvin's pores the day after getting rescue benzodiazepine. still, i've smelled something akin to that lately. again, i consider breathing. i consider N95 and covid-19.

the kid has been all right. happy, calm and smiling. four days seizure-free. he's eating well and growing like a weed. no bad side effects—yet—from the pharmaceutical cbd. if only he could make it past day thirteen. if only he could run and play and speak.

the cardinals lost their nest to predators it seems. could it have been the gray fox? i read they can climb trees. they're out there, predators. sometimes with feathers, fur, claws and fangs. at others, flabby-faced in suits and ties, uniforms, camouflage or riot gear. often they're incognito. they hurl their barbs and slurs, spray their gas and ammo, their conspiracy theories. hidden in their shade they undo modern policy, press their knees in the necks of the powerless struggling to breathe.

safe in the backseat my kid takes grapes and blueberries from me. he pulls off his shoe and chews it. yanks off his glasses and gnaws their temples and lenses. pulls off his sock and sucks it till it's sopping unless i can stop him. when setting out he almost always smiles. grimaces in the wind when the windows are down. cranes his neck to stare at the sun every time we turn south. i wonder what he knows of this world. if only i knew what he feels and sees.

i make another bedside visit. this time his house is quiet. no humming of the oxygen machine. i close my eyes with him. listen to him breathe. i tell him it is sunny and mild. a great day for gardening and porch-sitting while sipping bourbon and watching folks and cars sail off down the street. i tell him again that i love him. i tell him not to hold onto this world for me.

Simpson's Point, Maine

cries of anguish

If I told you that taking care of my disabled infant-toddler-teen sometimes feels impossible— emotionally, physically, psychologically—you'd probably take my word for it.

If I told you I know more about living with epilepsy than my son's neurologists—the drugs' heinous side effects, the manic ramp-ups to the seizures, the awful fits themselves, the fallout from them, the cumulative stress—you might concede.

If I told you there are moments when I want to punch a wall, nights when I scream my head off in sleep-deprived frustration, mornings when I want to run away from it all—the dirty diapers, the managing of medicines, my relative confinement, the traipsing around behind my wobbly son in mindless circles all day long, the blocking of his efforts to stare at the sun and smack me in the face and bite everything in sight and drool on every surface in the house—you wouldn't doubt me.

If I told you I have little to no time or space or freedom to do the things I want to do and that sometimes I resent my son, my husband, my life circumstance, you'd take me seriously.

If I told you that I live with the fear that my son will die in his sleep after an epileptic attack, you wouldn't deny me that anxiety.

If I told you that my son's future seems bleak, and that I worry if he outlives us that others might mistreat him and that no one else will love him when he's no longer cute and cuddly, you'd feel me.

If I told you we've been gawked at, scorned, cheated, avoided, ridiculed and neglected, though that might come as a surprise, you'd believe me.

If I told you all of these things on a regular basis and for years, even if I've never met you, I've no doubt you'd likely show me love and compassion and maybe even ask if there were something you could do to make things better.

And hopefully, few if any of you would respond to my cries of anguish by telling me I'm imagining things or blowing them out of proportion, that I'm too serious, too sensitive, playing the victim, that I need to get over it, or that our situation doesn't matter nor does it warrant telling.

With this in mind, it never ceases to amaze me that when African Americans decry racism, police brutality, oppression and injustice, there are still those who respond with deflection, distraction, condemnation, disparagement and denial. Even in the face of mounting cell phone videos showing innocent Black men, women and children getting harassed, brutalized and killed by White cops and civilians, there are those who will claim that the victims are playing the "race card," must somehow be deserving of their mistreatment or demise, or that the offenses are anomalies.

Despite frequent anguished pleas, those steeped in racial bias or animus—whether consciously or not—condemn the ways in which Black people peacefully protest their oppression and the violence waged against them whether it be by taking a knee, taking the stage, taking the mic or taking to the streets. Others cling to ignorant and dismissive platitudes like, "All lives matter," a tone-deaf and hurtful retort to the more urgent maxim, "Black lives matter," even going so far as to create, share and repeat tasteless memes while innocent Black men, women and children are murdered with appalling frequency.

Despite cries for equality and reams of evidence supporting its disparity, there are still those who perpetuate rugged-individualist and bootstrap theories. They doubt, deny and turn a blind eye to the grim and profound effects of systemic racism, discrimination, and the maligning and marginalization of Black people. As a result of such offenses, African Americans are at higher risk of living in substandard housing, in food deserts, in cities with underfunded and crumbling schools and drinking water tainted with lead. And due to the fact that institutional racism exists at every level of government policy—education, housing, lending, healthcare, employment, criminal justice—African Americans are at disproportionately higher risk than White people of suffering from coronavirus and other diseases, infant and maternal mortality, police violence, arrest and incarceration.

The hardships raising my severely disabled son have never been questioned, even though most who claim to understand them cannot truly empathize. But somehow, the decades- and centuries-long protests by African Americans against injustices, fear and risk of bodily harm have historically—at least until more recently—gone unheard. Too many people remain entrenched in their denial of benefits they enjoy because of having white skin—a reality that in no way whatsoever discounts hard work and ingenuity and is nothing to be ashamed of. Perhaps fear or pride gets in the way of conceding that success isn't ever achieved in a vacuum. Maybe, like me, whiteness might have helped you get that decent education, that interview, that job, that apartment, that loan, that benefit of the doubt, that second chance. Maybe, like me, whiteness helped you skirt defeat, suspicion, catastrophe. And maybe—probably—whiteness helped you avoid the risk of getting stopped, questioned, arrested, your neck crushed under some cop's knee.

Protesting the killing of George Floyd, outside Brooklyn’s Barclay Center. Photo, Yunghi Kim/Contact Press Images

unrest

My teenage boy is speechless. He whines and howls and cries. Is he in pain? Is he soiled? Is he hungry? Bored, anxious, sad, confused, lonely, frustrated? Does he feel as if he's been treated unjustly? He must want so terribly to be heard, to be understood, perhaps even to be freed from his reality. He goes most crazy—fever pitch—just before a seizure hits, his brain attacked, his body racked with spasms. His protests are righteous, his message, deafening, just trying to get our help and attention.

Other voices are far more articulate in expressing their dissent of unarmed, shot or suffocated bodies left to languish alone in the streets, in cars, parks, subways and apartments. Their only offense: having black skin. 

Rodney King. Trayvon Martin. Sandra Bland. Tamir Rice. Freddie Gray. Aiyana Jones. Laquan McDonald. Alton Sterling. Michael Brown. Oscar Grant. Philando Castile. Eric Garner. Walter Scott. Renisha McBride. Ahmaud Arbery. Breonna Taylor. George Floyd.

Countless other priceless souls are stolen by White cops and vigilantes with tasers, guns and chokeholds. Knees pressed on necks. Bullets in backs of heads and chests, close range or while retreating. Only cell phones in their grip. Asleep in their beds. Driving to work. Playing in parks. Out for a jog. Asking for help. Watching television on the couch. 

The anger over their hurt and murder is mounting. Peaceful protestors choke the streets. Some take a knee. Others sit cross-legged, arms raised. Braids of Black and Brown and White bodies hold signs and cry out the names of those whose lives were stolen, echoing the phrases:

Hands up, don't shoot! Enough is enough! No justice, no peace! I can't breathe!

Decades have passed. Nothing changes. Another gruesome video inevitably emerges. Tensions and anger heighten. Black and Brown bodies are disproportionately lost in other ways because of systemic racism—cornonavirus, weathering, hypertension, diabetes, mass incarceration. When will justice be served?

MLK said a riot is the language of the unheard. Yet these are not riots. Rather, rebellions, uprisings, unrest. Demonstrators are not the enemy. Looting is not worse than being an innocent victim of a shooting. Cities strangled by unrest can recover; bodies strangled by cops cannot. These homicides are not anomalies. A barrel of bad apples can taint legions. Too many are rotten. Those seeds meant for breeding have cyanide, you know. Enough to go on killing innocents. Enough poison to spoil generations of Black families. Enough to deep-six the dreams of tomorrow's fathers, mothers, wives, sons, daughters.

White privilege exists. Well-off or poor, it has helped most get where they've gotten without getting racially profiled, unjustly stopped and frisked, pulled-over, harassed, stalked, suspected, questioned, arrested, trodden. I promise. I should know.

To protest systemic oppression is righteous. In plain sight, our Black brethren are being neglected, abused, maimed, scapegoated, murdered. And though our collective cries of injustice have been deafening, it's as if they're still unheard.

Stephanie Keith for The New York Times

brokenness

so much brokenness.

my child's brain. myriad hopes and dreams. promises. hearts. this nation. too many american families, homes and livelihoods. the criminal justice system. the federal pandemic response. all of this comes to mind in the dim, quiet moments while holding my son as he seizes.

so much brokenness. 

Calvin's strident seizure-gasps, like that of a death rattle. white police officers suffocating another black man—hands cuffed, face pressed hard into asphalt pleading, "i can't breathe." what is wrong with people?

so much brokenness. 

black joggers being stalked and shot. white women calling the cops on black men and making up dangerous stories about threats and assault. black people getting arrested on their own front porch, harassed on their campuses, in their library or dorm, in the foyer of their own apartment, shot while watching television in their homes. white men then questioning whether these blatant acts are racist. white men and women condemning black folks who take a knee to peacefully protest their ongoing oppression and violence against them. what is wrong with people?

so much brokenness. 

folks contemptuous of the act of wearing masks meant to protect those most at risk of exposure to this dangerous virus, like calvin. scornful of masks which are worn because we are supposed to care about and for each other. menacing men armed with AR-15s protesting government protective measures. a president stoking that very dissent. states opening up regardless of the virus' trajectory. folks congregating without masks as if uninfected or immune.

so much brokenness.

greed. corruption. deceit. wickedness. inequity. bigotry. bullying. conceit. narcissism. self-dealing. defrauding. sloth. petulance. recklessness. all these from our so-called leader(s). what is wrong with this man, these people?

so much brokenness.

and yet, that which is broken can usually be fixed. with love. truth. charity. patience. righteousness. courage. unity. science. knowledge. wisdom. ingenuity. leadership. accountability. selflessness. humanity. hope. kindness. compassion. empathy. like holding a broken child, a glimmer of dawn seeping through the shades as he seizes.

Merrilyn Downs prays over a memorial for George Floyd
Photo, Zach Boyden-Holmes, The Des Moines Register - USA TODAY Network

just two

Suppressing my instinct to embrace her felt strange. It had been easily two months since we'd last met over coffee to discuss politics, writing, dreams, food. At a safe distance—more like ten feet than six—we took Smellie to the fields and made our way along the path through the woods, veering into the brush whenever we encountered others. It was only the second time since all this coronavirus craziness began that I met with a friend. As we strolled, we caught up on each other's goings-on, and that of our sons and husbands. We toyed with the idea of the four of us gathering for cocktails around a backyard fire, but neither could say when we'd feel comfortable enough. It seems there's still so much we don't know about this virus, and we worry about letting our guard down.

When we arrived back at the house, I considered offering her something to drink so we could sit and enjoy the dwindling afternoon sun in the garden. But I'd have to touch her glass, I thought to myself while trying to work out how I could logistically handle it safely. She told me she had to be on her way, anyway. So I walked her to her car and, from yards away, we gave each other air hugs, and I blew her a kiss goodbye as she drove off.

Later, I told Michael that though I loved seeing her face and visiting with her in person, it felt dispiriting to have to keep so far away from someone I like so much. There's something melancholy and alien—especially since I, like Calvin, am a very tactile person—about seeing beloveds but not being able to hug them. It's a feeling I don't get when I FaceTime with others, though there's a tinge of emptiness in doing that, too.

But until we feel in our bones and guts that it's safe to gather, drinks will be made for one couple. These chairs will be lounged in only by us. The garden will be visited by no other humans, except maybe in passing. The backyard fires will be warming just two.

still sheltering

After a couple of months sheltering in place, and despite a rising coronavirus death toll, states are beginning to open again. Folks are lining up to get into their local barber, salon and drive-in. I heard that the ice cream stand up the road a spell was packed last weekend. I'm beginning to see groups of kids riding bikes together. Glorious weather is drawing neighbors outdoors. And while I miss our friends terribly, and long to gather with them, I'm still skittish.

Some folks are comfortable hanging outside in small clusters, their chairs spaced at what is thought a safe distance. Others are bringing childcare workers back into the fold. Many have continued to visit their extended family members—parents, grandparents, sons, daughters, in-laws. Some families have been "quarantining together" with other families all along—albeit not under one roof—citing their trust in one another despite evidence that wider circles exponentially increase the risk of getting the virus and spreading it to others.

Sunday, when I visited my friend outside for the first time since autumn, I kept my distance. He sat on one end of his ample porch, I on the other. When he sneezed, I pulled the collar of my jacket over my nose, envisioning the droplets hitching a ride on the wind. For months he's been receiving visitors on a daily basis, some of them frontline healthcare workers, others employed in various essential businesses potentially exposing them, and him, to the virus. So visiting him makes me a tad nervous.

As I watch the news unfold, I wonder how many of the brazen gun-toters protesting government shutdowns know that perhaps as many as half of infected people experience no symptoms while actively shedding the virus. Have they heard that small droplets can hang out in the air eight minutes, perhaps longer? Do they understand that wearing a mask is meant to protect others? When I explain to people why I am keeping such a distance, I wonder if they think I'm too zealous. Do they get how vulnerable Calvin is, or what a clusterfuck we'd be in if Michael or I were to get seriously ill? I mean, who would take care of Calvin if we were laid up, or worse? These questions lead my thoughts to little Charlotte Figi, a girl a lot like Calvin who died last month from complications of what was undoubtably Covid-19.

I feel there is so much we still don't know about this thing. We don't have a vaccine. We don't have a decent treatment. Immunity may be elusive; five sailors who fully recovered from it have recently become reinfected. And so, even though I'm eager to visit friends and host gatherings of our lovelies, for now I'll keep sheltering in. I'll continue to spend my days taking lots of short walks around the neighborhood and long car rides near the water with Calvin. I'll keep spending my mornings savoring time to myself in the woods walking Smellie and in the garden soaking up the beauty of flowers, hummingbirds and bumblebees, and dreaming. I'll keep looking forward to evenings with my husband who, thankfully and for a multitude of reasons, is the best person with whom I could ever find myself in quarantine.

Simpson's Point

listening

Above the tick-tock of two old clocks, the rattle of storm windows, and the knock of radiators, I swear I can hear gas hissing through copper lines to the furnace downstairs. Outside, crows caw and cars rumble past, the traffic having picked up some since cities and towns are slowly opening, even as bodies pile up. In less than three months, there's been a staggering eighty-seven thousand coronavirus deaths—and counting—in this nation. The collective mourning must be deafening. Is anybody listening?

Through the southern windows, sun fades the back of the green couch where Calvin sleeps in our laps on the days after grand mals. He pulls my head into his, wants them nested together. I gladly accept. It gives me time to rest. Smellie pads over and plops her head on my leg where there's a free hand that can pet her. This will be how we will spend much of our day together.

If I were to sit up from here, I could nearly spy the gray fox if it were crossing our backyard. She's a wild-looking thing, low to the ground, grizzled and lean, a straight line going from snout to tail when she's hunkered down on the hunt. Once, I heard her screech like a woman or child being tortured. It gave me shivers. Though small—about the weight of a cat—if backed into a corner she might give our dog a run for her money. Luckily, Smellie's got seventy-five pounds going for her—the same as Calvin. Nature is crazy.

Peeking out the side window, I watch our neighbor's fifteen-month-old daughter who's already doing cartwheels around Calvin—walking down the sidewalk without holding her mother's hand, picking dandelions, tossing balls, waving at strangers. Recently, I wrote to someone about Calvin, telling them he's as much like a baby or toddler as a teen. Some things never change.

I'm almost drifting off when Calvin comes to. Such is the story of my life in this house. Rarely do I get more than a few minutes or hours of uninterrupted sleep or solitude, especially now. Never enough time to dream satisfyingly except when I'm walking in the woods with Smellie, hearing the woodpeckers drum, the songbirds warble, and the wind rush through the trees like a collective voice telling my mind to hush and not to worry—it's listening.

The end of the day finally arrives. In a cool shadow, I hear a bumble bee bounce off a window. They're huge this year for whatever reason. Earlier, I was able to dig three holes in the back corner of our yard and plant some arborvitaes. They look happy, as if the've been there forever, like trees yearn to be. As the sun sinks, there's almost no traffic. I notice again the clocks ticking and that same buzz or ring or hiss, though the furnace isn't running. I think it must be so quiet that what I'm hearing is just myself listening.

Photo by Michael Kolster

struggles

The snow hadn't yet begun to fall when I heard my son cry out at nine last night. I only half expected the seizure's arrival, this one in the wake of the full moon and a decent eleven days since his last grand mal. As usual, I crawled in bed next to him to make sure he kept breathing—the twenty minutes or so after a grand mal being the most risky to succumb to SUDEP (Sudden Unexpected Death in Epilepsy.) Just as I was falling asleep, Calvin clocked me in the face with his fist while he was shifting. I decided it was a good time to go sleep in the bed with Michael. Sadly, the extra THCA oil I'd given Calvin after the first seizure did not thwart the arrival of a second grand mal at 4:45 a.m. Perhaps it would have worked if I'd waited until midnight to administer it, but I was so goddamn tired I just couldn't.

By six the snow was coming down in gnat-like flakes, some of them floating upwards and crosswise as they neared the window. Like most everything in these coronavirus days, snow in May, even in Maine, is strange. Watching it come down, head on my pillow, I imagined it as some magical dust, some cooling off of the white-hot suffering, despair, frustration and anger many people are feeling during these essential shutdowns.

Slowly, I rose to see the garden, worrying that the young peony shoots might have been burned by the night's frost. Since yesterday, many blossoms have opened on the pink and purple small-leafed rhododendrons, a white one having already beat them to it. The garden is gradually coming into it's glory, even as deciduous trees are still mostly naked, save some tiny leaf buds emerging.

As if winter, today has been spent indoors trying my best to help my suffering kid feel better. He's not back to baseline, is more restless than usual, has clammy hands, stinky breath, foamy drool and no appetite to speak of. I'm tired and achy, and the sore throat I developed the other day is only slightly better. Still, looking out over the garden, the snow having finally given up without sticking, I'm feeling grateful. I have a house chock-full of windows, a gorgeous garden to devour and in which to wander, a sweet and loving husband who does all of the cooking, friends who leave delicious care packages on our porch, good books and films to lose myself in, and the privilege of not being a frontline healthcare or other essential worker during this pandemic.

But despite all there is to be grateful for, I'm still nervous about what is going on in this country, and ashamed of some Americans' behavior. It vexes me to hear that grocery store employees are being harassed by customers who do not want to follow state guidelines for wearing masks in public. I'm incensed at the ongoing lies, backpedaling, blame-shifting, cronyism and hypocrisy coming from the White House. I'm sickened by the news of hate crimes—so many still going unpunished—of innocent Black and Brown people who, amid their ongoing oppression, are disproportionately affected by this pandemic.

Outside, it's still below forty, though with winds at eighteen miles per hour it feels like the Arctic. But I'm sitting here at my desk with a view of the garden. Michael is home taking care of Calvin, who is doing slightly better and will be heading upstairs to bed fairly soon. I've just lit a fire in the wood stove and poured Michael and I a couple of early cocktails. Later, we'll warm up some ridiculously delicious chicken enchiladas with spicy salsa verde, and discuss the messed-up state of the nation. Then, we'll muse on gratitude, and I'll go to bed early and tired, though hopefully not pitying the situation with our own messed-up kid, but rather sympathetic for those out there in the world who are truly struggling.

collective breath

On the way to Woody's, walking hand in hand with Calvin and Smellie, a friend approached on the other side of the street riding his bicycle. We shouted above a passing car or two, then he peddled across and stopped a safe distance in front of us. After chatting a bit, I asked how he and his family were doing.

"Oh, we're struggling," he said in a resigned tone.

My heart sunk.

"Yes, everyone is struggling in their own way," I replied.

He smiled, put his head down to find his peddle and nodded. We said fond goodbyes as he rode off.

When Calvin, Smellie and I reached Woody's house, I called him on the phone. When he picked up, and from opposite sides of his window, we complained about the biting wind, and I told him about my conversation with the neighbor. Woody's silence made me think he agreed that life is strange and difficult right now.

I've been thinking about the tens of millions of unemployed Americans struggling to make ends meet. While I believe we need to continue to shelter in place to mitigate the stress on the healthcare system, I'm sympathetic to the need for hurting people to get back to work. So, too, I've been lamenting those who are sick and suffering and who have lost loved ones to this insane virus. I've been missing seeing friends, gathering around a table to share food and drink and to shoot the shit from across a table. I miss the college students terribly; their absence is palpable and I know it has been hard on them to be away this semester. I feel things have been particularly devastating to doctors, nurses and teachers, especially those with young families.

Strolling home from Woody's house, Calvin turned to me for a hug, and while I embraced him I took a deep, collective breath for everyone.