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

indifference

stuck at home nursing a stiff, achy back and a sick, feverish kid. outside the earth is parched. too little spring rain for trees and shrubs to drink. watching bits of a minneapolis murder trial while calvin sleeps.

seeing video of a white cop in a blue uniform pressing his knee into the neck of a black american for nine minutes sickens me. the black man cries out. says he can't breathe. what i can only imagine to be his urine streams from under a police vehicle, like when people seize. maybe it's the car's condensation. still, the fact that i even wonder matters.

bystanders plead with the officers to show mercy, but none of them is moved to acquiesce or aid george floyd, the man in distress. he is succumbing to their pressure. they remain an unmovable, emotionless threat. the white cop leans hard into the black american as if he doesn't matter. the victim's bloody face is ground into the asphalt, arms wrested, the intolerable burden of three big men leaning on his back and legs, his chest compressed. the knee in his neck shimmied into prime position for eternal silencing. the white cop indifferent to the pleas of his victim. contemptuous of onlookers. hands casually in his pockets as if jangling spare change. passing the time. as if nothing he does matters. callous as hell.

as with all things just and unjust, i think of my little boy calvin; he has no voice, is misunderstood and sometimes swept to the margins. goes unseen by many who avert their gaze or pretend he doesn't exist—to them he doesn't matter. he's different. easy for others to neglect. not in a position to help or defend himself. could easily get knelt on in the wrong circumstance. this makes me think of the boys and young men somewhat similar to calvin who have died under the weight and watch of those in uniform. autistic. misjudged. misunderstood. misapprehended. falsely feared. wrongly accused. bullied into final submission. insignificant. in some realms—because of their difference—they are thought of as mattering less and are treated as such. 

this black american—and too many like him—was deprived of blood to his brain and oxygen to breathe, vitals denied by a public servant paid and sworn to protect. in broad daylight. witnessed by other beseeching human beings. captured on cell phone video. white mass shooters and dogs fair better.

words provoked by the bully in blue come to me: 

mister charlie. monster. bigot. predator. inept. unjust. lynching. white supremacy. relics. vigilantism. corporeal punishment. systemic racism. apathy. grievance. abuse. hatred. contempt. ignorance. othering. difference. indifference.

the last five words make me consider calvin again. mostly, though, i think of countless dear friends with black daughters and sons. they have to give their kids the talk no parent of white kids does. the talk about being innocent and unarmed. of being suspected, feared, stalked, pulled over, apprehended, gunned down—even in their own homes—too often just because of the color of their skin. they tell their kids: do as you're told; be respectful. keep your hands visible; make no false moves. in this so-called liberated america, following these instructions can mean the difference between tasting oxygen or earth. black people know this. too many die while living it. the difference and indifference is sickening, malevolent, criminal.

at one a.m. calvin's fever spikes. he's restless, inconsolable. little can be done to ease his misery. we tend to him as best we can. crawling back into bed i hear the rain begin to fall. it's coming down sustained and heavy. a deluge. I wonder what would have happened if it had rained that day in minneapolis. wonder what the bloodless cops kneeling into george floyd would have done if the sky had opened up.

riots, lies, nazis and baldwin

My son's seizures come in clusters and eventually peter out. The spasms, like cudgels, are battering to his mind and body. Recovery takes days before again ramping up. Their arrival is manifest. The attacks are unforgiving. Angst and dread take up residence. I feel the same about our Nation.

I'm awake at night still reeling from the January 6th attack on our Capitol. At least five people are dead. From coast to coast, bad actors are planning more attempts. Antisemitic, homophobic and racist images at the uprising shocked and upset. T-shirts with "Camp Auschwitz" and "Six Million Wasn't Enough" were worn by neo-Nazis known for chanting, "Jews will not replace us." Rioters called Capitol Police officers the worst racial slur. The Confederate flag, which has a habit of being brandished by White supremacist racists and traitors, was marched through the halls of Congress. A Christian cross was erected. Jesus was hailed and beseeched. American flags were used as cudgels to beat police. The betrayals were brazen. It seems "Blue Lives" don't matter when you have an agenda.

The lie of a rigged election was one that the President and his enablers hammered home for years and provoked the riotous insurrection. Like other despots—Hitler for instance—the President laid the dangerous and deceitful groundwork by fearmongering and stoking his base's White resentments and fears of being eclipsed. He knew what he was doing. His words are careful, cunning and deliberate. Efforts to overturn the election outcome in Democratic strongholds—Milwaukee, Philadelphia, Atlanta, Detroit—were failed attempts to disenfranchise a mostly-Black electorate.

The president's supporters have since resorted to deflection—to racist tropes, whataboutisms and scapegoating—by shifting the conversation from the violent siege of our Nation's Capitol to the Black Lives Matter protests of last summer. The contrast is sickening.

To be precise, the Black Lives Matter protests are about the generations-long scourge of lethal police violence against Black Americans—George Floyd, Breonna Taylor, Daniel Prude, Philando Castille, twelve-year-old Tamir Rice, plus countless and mounting others. Its mission is righteous: to peacefully protest the unjust murders committed by the very public servants who vow to protect all of us. The protests are vastly peaceful, unarmed, diverse, grassroots demonstrations attempting to secure the yet elusive constitutionally-protected civil rights of Black Americans.

On the other hand, the riotous insurrection at the Capitol was a well-organized, armed and violent siege by far-right militias, neo-Nazis and gangs of White supremacists—by far the most dangerous terrorist threats to our Nation since 9/11. Weapons were wielded. Hangman's nooses and makeshift gallows were hung and erected. The lives of legislators were threatened with execution. It was a flagrant attempt to overthrow a free and fair, certified, democratic election. And again, it was based on a lie—the lie of White entitlement—that any election the President and his mostly-White base didn't win was somehow stolen from them by people they deem as dishonest and/or less deserving, that is Democrats, namely American Democrats of color. The conceit is egregious.

A White friend asserted that the riots at the Capitol were not race-based, but rather a response to greed and power. I objected by saying:

in the entirety of this nation's history—from columbus' stumbling onto the continent up until 2021—greed and power have been sought, stolen and preserved by white men in power by means of enslaving people of color, subjugating people of color, exploiting people of color, murdering people of color, crafting policy against people of color, policing people of color, incarcerating people of color, disenfranchising people of color, and manipulating other's views and treatment of people of color. you cannot separate last week's riotous insurrection —perpetrated in great part by brazen white supremacists—from an act driven by racial animus, white entitlement and resentment. 

Unlike the President's pandering to White supremacists and neo-Nazis, he did not tell BLM protesters that he loved them, nor did he tell them that they were "very fine" and "very special" people. He did not embrace or endorse the peaceful protests of Colin Kaepernick and other Black athletes; he condemned them. His administration squashed the protests of indigenous Americans trying to protect their sacred land and water. He cruelly separated brown immigrant children from their mothers and fathers. He reserves his coddling for White supremacists because he is one of them. He and his henchmen in congress employed their far-right base as cudgels to do their dirty work, to thuggishly overthrow an election after all legal avenues had been rejected. Pay close attention. Just like their bigoted and sinister imagery, toxic and threatening rhetoric, and violent, seditious siege of the Capitol, the smug, straight-Christian-male-White supremacist entitlement is blatant and dangerous, a malignant cancer in this Nation.

Today, I heard a piece written by James Baldwin, A Letter to my Nephew, which sums up the state of things in America nearly sixty years later. I encourage you to have a listen or to read it. It's all there—the ugly truths we must face before we can change them. Here is an excerpt:

In this case the danger in the minds and hearts of most white Americans is the loss of their identity. Try to imagine how you would feel if you woke up one morning to find the sun shivering and all the stars aflame. You would be frightened because it is out of the order of nature. Any upheaval in the universe is terrifying because it so profoundly attacks one's sense of one's own reality. Well, the black man has functioned in the white man's world as a fixed star, as an immovable pillar, and as he moves out of his place, heaven and earth are shaken to their foundations.

Like all seizures, these attacks on our democracy are unforgiving. Angst and dread take up residence. Their arrival is manifest. All we can do right now is to try and arrest them.

between seizures

five days straight of one kind of seizure or another. hostile attacks on my boy's precious brain. a coup by his body's own constituents. the treacherous spasms batter and beat him, take his breath hostage, render him listless and feeble. his body, strong and resilient, does not surrender.

between seizures, i cradle my teenage baby. his former nurse texts me about an insurrection. i tune in and watch throngs lay siege to our hallowed capitol. seething crowds of insurgents pack its stage as if metalheads at a rock concert. one is crushed in the mayhem. a sea of white men and a smattering of others wrap themselves in stars and stripes, carry tactical equipment, wear camouflage and garb adorned with antisemitic and racist emblems. they raise flags emblazoned with the name of the liar who incited them into rebellion. some of them are armed. at least one cop gets beaten. they rant and curse and clench their fists. some are tattooed with slogans and motifs notably white-supremacist.

i wonder, again, if my son's convulsions are reverberations of sickening events in this nation. does he feel them drumming through me?

the insurgents scale our capitol's walls and scaffolding. an angry, chaotic mob punches out windows. some urinate and shit in the halls and offices of congress. i see a few clutching bundles of zip-tie flex cuffs. I see a noose hanging from gallows. i spot the disgraceful confederate flag flown by enslavers, racists, lynch mobs, traitors, losers. it is worthy of burning. the rioters roam and loot and smugly record their desecration on their cell phones. some literally cash in on filming their actions. they nauseatingly parade their white entitlement. they wreak havoc, plant pipe bombs and threaten with virtual indemnity.

not unlike witnessing my son seize, the world watches in horror and astonishment. the scene is grotesque and disturbing, deserving of americans' indignation.

my son has epilepsy. this is america. both have painful histories of brutality and wretchedness worthy of our scrutiny. seizures repeat until they can be arrested. unsteady despots tell lies about stolen elections. others parrot them. the indoctrinated believe the deceit. stoked-up chauvinists escalate, then seize. the body politic convulses. america is under siege.

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

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.

in no uncertain terms

My parents told me and my siblings never to say the word "retard." Still, we called each other "spazzes" with reckless abandon. I grew up in a time when, and place where, it wasn't uncommon for racist jokes to be told with little reflection on the harm they caused. Some were told by my father, whom I didn't consider racist because of his friendship with, kindness to, and deferential treatment of people of different races and nations, including my friends.  

Later in life, it felt troubling when people close to me mocked my gay friends, used the "N" word, called Middle Easterners "towel heads," and referred to homeless people as "winos" and "bums." A friend's husband once used a racial slur to suggest that Black people are lazy. With a pounding heart and a face flush with indignation, I've challenged antisemitic, homophobic, sexist and racist tropes. Years ago, I ignorantly used the slur "White trash." I'll be forever grateful to the White woman I was speaking with who schooled me about the ways in which the term is offensive, wrong and hurtful. I've never said it since. 

Long before Calvin was born, I became sensitive to the bigotry and oppression that non-White, non-male, non-straight, non-Christian, poor, and homeless people face. I owe that to the many African American and gay men and women I've loved, lived with and befriended, and to my Chinese, Japanese, Filipino, Muslim, Latino and Jewish coworkers, friends and neighbors in Seattle, San Francisco and Maine. For years, I've done in-depth study of this nation's systemic racism; research shows racial discrimination occurs at all levels of government and society including housing, healthcare, education, employment, lending, criminal justice and voting. My son Calvin has given me firsthand experience of what it means to live with disability—its limitations, its stigma, its burdens and hardships. It wasn't until after his birth that I learned that children and adults like him were the first of millions to be executed during Hitler's Holocaust. This knowledge has stayed with me, and has further informed my opinions about bigotry and the dangers of otherism.

Despite what I see as dubious foreign policy, blatant and astonishing self-dealing, shady and felonious henchmen, petty and vindictive tweets, and reckless handling of the coronavirus pandemic, it's my love and support for vulnerable, oppressed and marginalized Americans, immigrants and refugees that is at the heart of my criticism of Trump and his administration's harmful policies. I mean, who cruelly separates infants, toddlers and teens from their parents for any reason? Trump does. For someone who claims to be Christian, that policy is the antithesis of godly; in other words, it's evil, and tantamount to terrorism.

As if the past four years of Trump's racist, xenophobic, antisemitic, homophobic and transphobic rhetoric and policies weren't enough, yesterday, I saw a video in which Trump, at a mid-September rally this fall in Minnesota, said to the crowd:

"You have good genes, you know that, right? You have good genes. A lot of it’s about the genes isn’t it, don’t you believe? The racehorse theory—you think we're so different? You have good genes in Minnesota.” 

For those of you who don't know what the racehorse theory is, it's the premise that selective breeding— eugenics—can improve a nation’s performance. German Nazis used this theory as the basis for exterminating those they deemed as undesirable, to advance their attempt at racial purity and strength.

Until now, in this blog, I haven't promoted the full argument that Trump is a racist, despite having been utterly convinced of it for years. However, after watching the video, I can no longer refrain. This time, his comments are so clear they cannot be explained away as being "not racist" or "sarcasm" or "in jest" or "taken out of context." This time, there's no denying the meaning or significance of his words; his message is odious and deliberate, its threatening implications, unmistakable. His words should serve as a caution to anyone thinking of voting for him who does not support White supremacy or Nazism. 

In no uncertain terms, Trump touted the same theory which Hitler employed to murder eleven million innocent people—disabled children and adults, the infirm, the elderly, the mentally ill, gay men and women, Jews, Romanis, Jehovah's Witnesses, Roman Catholics—to a crowd of mostly-White Americans of mostly-German heritage in a state with a growing number of Somali and Hmong immigrants.

After seeing Trump spew his vile words, to then knowingly back him is to choose to secure a White supremacist racist in the most powerful position in the world. His rhetoric goes hand in hand with his long record of using racist dog-whistles—"law and order," "save the suburbs," "go back to where you came from," "America first," "bad hombres"—and is particularly disturbing considering his tacit and overt support of White supremacists and far-right terrorist militias. As cynical as it might sound, it's not a stretch to imagine that his racehorse theory serves as grounds for his administration's promotion of herd immunity, in light of the well-documented evidence that Blacks, Indigenous people and Latinos are two to six times as likely to die from Covid-19 as Whites, depending upon age.

Chilling.

I can anticipate a response to my assertion from some Trump supporters. They'll say they're voting for him because they are pro-life and they are under the impression that he is too. But a pro-life claim rings hollow if one supports a man who espouses such a nakedly racist and dangerous theory used to justify the genocide of countrymen, women and children. Furthermore, any pro-life claim is meaningless if one does not also support social programs that sustain life beyond birth for those in need, such as healthcare, housing aide, food aide, family leave, childcare, pre-K, a decent education, and an interest in protecting the lives and livelihoods of immigrants, refugees and their children.

So, before going to the polls, if you have not voted already, ask yourself what kind of America you want to wake up to every morning.

Edward Muybridge, Horse Galloping, 1878

"i am" poems

On Saturday, I received a second letter from my new pen pal who has been on death row in an Alabama "correction facility" for ten years. He's there along with about 165 other men who have also received death sentences, each languishing in their own little cell. Studies show that as many as four percent of death row inmates are likely innocent of the crimes they've been convicted of committing. That's equal to nearly seven innocents in that one Alabama prison alone, in a nation where some people cling to the platitude, All lives matter.

In response to my pen pal's letter, I told him I had recently finished the book, Reading with Patrick. It's author, Michelle Kuo, writes deftly and movingly about her time as a high school teacher in a small Mississippi Delta town. I went on to tell my pen pal that the author asked her students to write "I am" poems. I wrote a quick one in my letter to him:

I am strong
I wonder how life would have been if my son were "normal"

I hear my son complain, and I don't know why

I see the wind blowing through the trees

I want to make the world a better place

I feel sad some of the time

I cry when I am overtired and lamenting the loss of my child who is still alive

I understand how important it is to listen to others

I dream of a just and loving america and world

I try my best, but I still fail

I hope life gets easier, though I am still grateful for may things

I asked my pen pal if he might want to write an "I am" poem and send it back to me. I am hoping so.

At the end of my letter to him I drew a picture of our dog, Smellie, then signed off by saying, Know that I am thinking of you. I folded the pages around a self-addressed stamped envelope plus a family photo taken seven years ago which I discovered, slightly crumpled, in the back of my desk drawer.

I can't help but wonder what my son Calvin, who is nonverbal, cognitively and physically disabled, might write in his own "I am" poem if he were able. But since he isn't, I wrote a version for him, imagining him capable of certain complex thoughts:

I am a fighter
I wonder why I'm not going to school anymore
I hear my mom drop the F-bomb a lot
I see my mom get annoyed with me sometimes
I want to be able to do things by myself
I feel frustrated when I'm not understood
I cry when my head and tummy hurt
I understand that I am loved
I dream of being able to speak
I try to do my best at everything
I hope one day my seizures stop

Rereading my poems, I'm reminded of how vital it is to see life from another person's perspective, which is the main reason I was interested in raising a child. I want to understand why and how other people grieve. I want to bear witness to other's struggles and to feel empathy. It seems that the America we live in—one which too often embraces the myth of rugged individualism and mantras like, Don't tread on me—suffers from a lack of understanding and empathy for those who face certain stresses and obstacles in their daily lives which hinder their ability to live life fully, enjoy liberty and pursue happiness. I'm thinking of Americans who are homeless, hungry, hurting, cold. I'm thinking of Americans who are disabled, hated, disenfranchised, imprisoned. I'm thinking of Americans who don't have jobs, health insurance, savings, and those who can't vote.

I slide my folded letter and family photo into an envelope, address it, seal it, stamp it and pop it into the mailbox for its trip to Alabama. Doing so, I imagine my pen pal passing long hours in his cell. I consider the fact that he never got the chance to vote and will likely never be able to vote for the leaders who will write laws and policy which directly affect him. I think of the number of innocent people who are imprisoned and on death row who are disproportionately people of color. I wonder what kinds of "I am" poems they'd be writing if they could.

Photo by Michael Kolster

present trouble

On too many days during the past three-and-three-quarters years, I'm reminded that if my son Calvin had lived in Hitler's Germany, he'd have been among the first to be swept up by Nazi thugs, then executed in the regime's first systematic "cleansing" of "undesirables." In the name of extreme nationalism, millions were rounded up like animals and slaughtered: the mentally ill and physically disabled, the elderly and infirm, homosexuals, Romanis, Jews and others.

Last week, I heard and read about the murder of yet another unarmed Black man at the hands of police, this time in Rochester, New York earlier this year. His name was Daniel Prude. He had left his brother's house in an erratic, psychotic, state. His brother called the police for help. Instead, Daniel became another victim in this nation's historic and present trouble of violence against Black people.

It was nighttime in March. By the time the cops arrived, Mr. Prude had taken off his shirt and long johns and was running around naked in the cold. The officers handcuffed him and put a spit mask over his head. Even as Daniel pled with officers to remove the mask, they held him down, his face pressed into the pavement, until he passed out and his pulse stopped. Though he was revived in the ambulance, he never regained consciousness. He died seven days later.

We know of dozens upon dozens of stories like this—unarmed Black men, women and children being murdered by police and vigilantes. Each account is sickeningly reminiscent of past ones—Jacob Blake, George Floyd, Breonna Taylor, Eric Garner, Tamir Rice, Philando Castile, Trayvon Martin. Unless we as a nation do something different—unless we reform the police and evolve as a society—these atrocities will continue.

Despite gains made during the Civil Rights Movement, Black people in America are still treated by many in law enforcement and others as subhuman. As if animals, they are falsely feared and made into monsters. They are regularly maligned as criminals. The Black Lives Matter movement is vilified as sinister, though their platform is righteous and inclusive, its simple goals dignity, opportunity and equality for Americans who, since slavery, continue to be exploited, terrorized, lynched, targeted, marginalized and abused. Some people's refusal to say, Black lives matter, serves as ample evidence of the need to underscore that very truth.

I worry about the well-documented infiltration of racism, White supremacy and far-right militancy into our nation's law enforcement, and its subsequent effect on communities. I understand what a privilege it is to have white skin and to jog, drive, jaywalk, shop, hike, play, loiter and prank with impunity. I know what it is to be the mother of a child who is misunderstood and undervalued by many. I read too many accounts of boys with autism and other mental health problems being killed by ill-trained police. I hear other's messages which are conveyed to me in real words and expressions of contempt and indifference:

Look at that kid. What's wrong with him? Shut that child up. Why can't she control him? He doesn't belong here. He's disgusting. I don't want to have to look at him. Pretend he doesn't exist.

I see a similar contempt for and misunderstanding of Black people and their movement. I hear people scapegoat and victim-blame African Americans, hear people regularly assign criminality to Blackness. I hear their message in words and expressions of contempt and suspicion of Black victims:

He must be guilty of something. If only he had complied. He had it coming. He was a monster. The officer feared for his life. He had drugs in his system. It looked like he had a weapon. Why did he run? He shouldn't have been there doing that in the first place.

Yesterday morning I heard an excerpt from a James Baldwin essay entitled, The White Problem. Though written in 1964, it still resonates today:

The people who settled the country had a fatal flaw. They could recognize a man when they saw one. They knew he wasn’t anything else but a man, but since they were Christian and since they had already decided that they came here to establish a free country, the only way to justify the role this chattel was playing in one’s life was to say that he was not a man. [Because] if he wasn’t, then no crime had been committed. That lie is the basis of our present trouble.

I consider, again, the state-sanctioned murder of innocents and "undesirables" in Nazi Germany and in this nation. I lament the dog-whistle politics of the current administration. I say a secular prayer for the men and women who are fighting for equal justice in a nation that still hasn't atoned for its sins or lived up to its original promises. I think about my new pen pal who is on death row, whose first letter to me was humorous, heart-rending and tragic. He doesn't deserve to be there; no one does.

As always, I muse on my son Calvin who, though nonverbal, autistic, physically and intellectually stunted and disabled, is as worthy and lovable as any of us. Then, I imagine those like Daniel Prude, whose lives were snuffed out in the street as if they didn't matter. No doubt they were worthy and madly lovable too.

keep on truckin' (toward justice)

Sweat trickles down my ribs. It's warmer outside than I guessed, but cool enough for a walk. I lead my son out the door, down the deck steps, then out to the field in back. Strolls with him have been more rare this summer than I'd like; it has just been too damn hot. As soon as we hit the path he balks. Yet again, I have to yank him along to keep him from trying to drop. With his left finger in his mouth, he looks slightly peaked and flushed, but nearing our goal, I refuse to give up. I keep on truckin'.

There used to be a time when Calvin could hold my hand and walk with little trouble. His gait was better, his balance more sure, his forward momentum, dependable. Now, if I don't tug him along, he stops in his tracks and stares at the sun. Sometimes he teeters backwards and I must catch his fall. The entire way I have to right him when he careens and stumbles. I worry that his brain's epileptic assaults are impeding his progression.

We just barely manage to make it around two corners and past Woody's empty house, but by the end of it I'm cursing and beginning to sob. I want to scream and punch a wall. So many hours, so many years, so many obstacles, yet so little progress. What a difficult, stressful situation, I think to myself, his and mine. It takes Calvin part of forever to scale the four back steps. I'm despondent. Spent. Empty. I'm weary of other, stupid, niggling troubles. Our nation is a hot mess—a reckless president whose mixed messages, indifference and neglect has led to a largely uncontrolled pandemic with 180,000 dead, a faltering economy, mass unemployment leading to millions without healthcare, civil unrest—and yet some folks want four more years of him. Black men, women and children keep getting shot by cops and vigilantes, their necks crushed by knees and chokeholds until they pass. Away. Beyond. Gone. Though these heinous incidents are legion, too many people still insist they're anomalies. But where are the scores of videos of unarmed White folks getting killed by cops? White-supremacist mass shooters and vigilante killers are handled with kid gloves, even as they tote the guns used to shoot people. They're described by some as "patriots" and "mother's sons," the latest's right-wing backers praising him for being executioner. Black victims, on the other hand, are routinely maligned as thugs. Their histories are picked apart and tarnished, their whereabouts, motives and movements questioned even after their lives have been tragically and unjustly snuffed out. Enough is enough.

As I reread the start of my last paragraph, I'm reminded of the civil rights fight in this nation. It is eternal. Burdensome. Exhausting. In too many ways, regrettably fruitless. Attaining racial justice in this country is a slog. A part of forever has passed, yet too many people still insist on being arbiters of the oppressed—deciding their truths, how they speak, where and how they should live, where and how they move, behave, dress, celebrate, grieve, protest, vote, perish. I understand Black anger and anguish to be immeasurable, something most of the rest of us can't fully grasp, save the indigenous who continue to fight similar injustices.

Calvin and my imperfect, burdensome life-walk is lamentable. But there are those who face worse dangers, stresses and impediments because of implicit bias, societal and systemic racism—we're talking cumulative trauma over 400 years. I think of the righteous who have the decency—not to be confused with courage—to proclaim that Black lives matter, and to protest the gross inequity we see played out daily in housing, healthcare, education, employment, voting, policing, courts and prisons. Though painfully slow and halting, there is a forward momentum toward racial justice which must advance for our nation to live up to its original promises. To attain it, we have to be fearless. We have to be relentless in our efforts. We can't give up.

As Reverend Dr. Martin Luther King, Jr. said, The long arc of the moral universe bends toward justice. Perhaps it's just around the corner, so keep on truckin'.

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.

dear confederate

Dear Confederate, Neighbor,

You might wonder why I'm writing, Bear with me. I'll try my best to explain.

In the span of ten days my son Calvin has had nine seizures. He has endured thousands of these attacks since before the age of two. He's now sixteen. Constant assault comes not only from the seizures but from the drugs meant to suppress them. The root of his epilepsy, a brain anomaly, also renders him speechless. He still wears diapers, and can't walk without some assistance, especially near traffic or on rough terrain. He is legally blind, negotiating the world much like someone who can't see a few feet in front of their face. He can't really use a spoon and must have his food doled out in small pieces or he's liable to choke. He can't bathe or dress himself, or adequately express himself. He enjoys no independence. Days are endless, both of us largely confined by his condition.

I often wonder how long a brain and body can withstand such pummeling. Do the seizures torture his organs, his muscles, his joints, his bones? No doubt they make him struggle to breathe; I see it every time he seizes. How must he feel when his heart pounds so feverishly? Is he fearful when the seizures take aim? I gravely dread a future captive in this agony.

Dear Confederate,

On a recent escape, I took Calvin on our usual car ride—Pleasant Hill Road, Flying Point, Bunganuc, Woodside, Maquoit—except this time we drove the opposite way. At one point, on a hillside clearing next to a modest house, I spotted a strange and unsettling sight: a confederate flag. It was hoisted on a pole so tall as to belie any humble claim of it's intent. I wonder if you put it there to provoke.

As if doubting my eyes, I turned around in a gravel lot near the bay where at low tide folks break their backs digging for clams in the muck. Driving by for a second look, I craned my neck catching sight of your flag in my blind spot. In the absence of a mailbox, I tried to guess your address. I meant to send you a postcard or letter relating my dismay of the emblem which reveres traitors who defended a sinful and hideous institution. I want to describe its hurtful symbolism honoring those who fought to preserve the purchase, sale, exploitation and enslavement of human beings for profit.

Dear Confederate,

Do you know the enslavers' victims—innocent African men, women, and children—were kidnapped, stripped, shackled, and crammed into the bowels of ships like animals, with no room to move, little foul air, water or food to intake, steeping in each other's urine, vomit and feces for weeks? Do you understand entire families were torn apart? Infants and toddlers, tweens and teens were ripped from their mothers' embrace. Husbands and fathers, mothers, sisters and brothers were sold downriver. Children and adults were forced into grueling labor sunrise to sunset. The enslaved were terrorized, tortured, beaten, whipped, raped and lynched for the smallest infraction, if any. Do you know that these innocents endured this hell at the hands of White people for 400 years only to be set free without a penny for their labor? And it didn't end there; slavery's legacy morphed into other forms of atrocities and oppression such as massacres, lynchings, Jim Crow laws, segregation, bombings, disenfranchisement, redlining, the war on drugs, police violence, and today's mass incarceration. Did you consider that these injustices indelibly scarred, marginalized and financially crippled generations of virtuous, hard-working Americans? Are you unaware? Led astray? In denial? Fine with it?

Dear Confederate,

Again, I think about my son, Calvin, one of the sweetest beings you'd ever meet. I want to tell you, Confederate, how difficult life is for him. I want to chronicle for you the eternal beating on Calvin's brain and body, his suffering, his aches and pains, his constraints. I want to describe the relentlessness of it all, my son's regrettable inability to understand why this should be happening to him, why he is seizing and hurting and can't speak—this dutiful boy of mine, this pure and innocent soul who is deserving of none of this torture. I want you, Confederate, to understand how woeful it is to know that my son can't escape his tormenter, and that no matter what I do, I can't liberate him from his misery. I want you to imagine, know and feel my son's pain. I want you to witness our wretched situation. 

More so, Confederate, I want you to imagine yourself and your family shackled and enslaved—for that particular fate was infinitely worse than any suffering my son or I will ever have to face. I want you to understand what the rebel flag might mean to Americans who are descendants of the enslaved who live in its miserable wake, and for we who bear witness to the injustices they still face. 

Dear Confederate, let fall your flag and surrender for the sake of all America.

Calvin resting and eye-pressing after a spate of seizures.

revolutions

Awake since one-fifteen, again reflecting on the state of things. Worrying about my restless son. Thinking about the racial strife, the righteous protests, the police.

An hour later the seizure came, my son shackled in its steely grip, at first unable to breathe. His heart beats wildly. I think about that handcuffed Black man dying, his neck under that White cop's knee.

It's day thirteen—a decent span without any fits since having increased my son's new medication: pharmaceutical CBD.

Things around here are getting green. Rhododendrons are blooming while wildlife encroaches—turkeys, foxes, raccoons, squirrels, chimpmonks—in the relative absence of humans on campus and cars zooming down the streets.

The status quo is unsustainable—in terms of seizures, racism, this unhinged administration, and policing. People previously silent are speaking. America is beginning to listen. Seizures seem to be abating. Revolutions of all kinds are within our reach.

Photo by Michael Kolster

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

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.