9.16.2020

"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

9.13.2020

where i roam (and don't)

As other kids head back to school, mine is staying home. During a pandemic, sending Calvin back into the classroom is too much of a risk for us. He can’t keep a mask on his face, can’t maintain a safe physical distance. Everything he touches—railings, tables, people’s hands and faces—become part of his microbiome. Because of his condition, if he gets the virus he likely won’t fare very well. If either Michael or I were to fall quite ill, it could prove disastrous for our family.

In mid March, we let the nurses go. Since then, we’ve been going it alone. Calvin has seen virtually no one but me and Michael the entire time. Regrettably, we no longer take him to the grocery store, one of a very few places he liked to go. I’ve been within mere feet of my son nearly twenty-four hours seven days a week since his last day of school six months ago. My only respite is my morning walk with Smellie. We traipse the fields and their surrounding wooded trails. It's the only place I roam alone.

Our days are mundane. Each begins with waking too early. Sleeping in is not a luxury we enjoy, even in a pandemic, because I have to give Calvin his time-sensitive, anti-seizure medicine. On most days, Michael helps me at least until mid morning and at night. The rest of the day I go it alone. I change Calvin's diaper, feed him, bathe him, clothe him, toilet him, wipe him, hug him, kiss him, fend him off, hold him close. We tread endless circles around the house and yard. I take him and Smellie for long car rides and sometimes, though not nearly enough, for strolls. In between, I listen to music or news. Lately, I hear stories of wildfires causing smoke and ocher skies, choking states in which were my beloved former homes. I read of Covid outbreaks, massive layoffs, healthcare nightmares, betrayals and lies leading to unnecessary deaths from the virus. Despair and fatigue set into my already weary eyes.

When six o'clock arrives and we put Calvin to bed, I can relax a little bit, have a glass of wine. Once a week, or so, we visit with another couple for a limited time at a safe distance outside; I get energized. At night, Michael and I hunker down with a good movie or to read, then hope to get a decent sleep. Too often, we're rattled by the sound of Calvin's seizure scream; he has them once or twice a week. Like the pandemic, they're unsettling. I dread them. I lose much-needed sleep.

Like last night, lying next to Calvin in the seizure's wake, in my mind I try to roam to faraway places. I go to where the haze in the air is mist. I visit familiar cities which are gleaming. I go to where vistas are myriad, waters are calm and azure, fields are vast and green. I go to where there's no pandemic and where Calvin doesn't seize. I dream of times when leaders are virtuous, and the future isn't bleak. 

9.08.2020

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.

9.01.2020

the bright side

Yesterday was the kind of day that reminds me of all I have to be grateful for:

After stopping Epidiolex several weeks ago, Calvin had "only" six grand mals in August instead of the ten he had in the span between late July and early August. Notably, his behavior is much improved overall. He's had far fewer manic episodes and is sleeping more soundly. Two-and-a-half years since his last dose of the benzodiazepine, Onfi, he is doing well in the wake of seizures; no longer does he experience what seemed like panic attacks which included a pounding, racing heart, clammy hands, hyperventilating, fidgeting and patting the bed for hours in the middle of the night.

The weather is gorgeous. Sunny. Breezy. Mild. Dry. Humidity having vanished, skies are as blue as they are on any given day in the West.

Calvin is doing well sitting on the potty. Not perfect, but I'll take any bit of progress he can give me, including far fewer dirty diapers. He's getting used to the routine of washing his hands, though I still have to help him quite a bit. He seems like he is understanding us better when we say things like, "don't bite that" or "let's go for a car ride."

Only rarely is he grinding his teeth or poking his eye. He still loves hugs and car rides. He doesn't wake me up as much at night.

Joe picked Kamala. She said yes. The democratic platform is righteous.

The first-year college students are in town, wearing their masks outside, walking six feet apart. When we stroll past each other, I smile and tell them how nice it is to have them here. They say thank you and tell me how good it is to be on campus. So far, only one of them has tested positive for coronavirus; He has to quarantine for two weeks, which makes me sad.

I just got my first letter from the man on death row who has become my pen pal. I hope I can make a difference in his life. He has already made a difference in mine.


8.29.2020

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'.

8.22.2020

aches and pains

Of late, I wake with achy joints—middle fingers, ball of my foot, small of my back. In dreams and while padding around the house, I clench my teeth. Is this a sign of fifty-six, or of resentments settling in my bones? If the latter, can I let them go and, if so, how?

I must be able to free deep-seated bitterness from a long history of hurt rendered by some who've claimed to love me. Can I shed my displeasure of what seems like game-playing and deceit? Can I forgive the pain of betrayal, abandonment, the strangeness of envy, the lack of respect, the failure to utter the simple words, I'm sorry that what I said hurt you. And what hand do I have in it? Michael, my best champion, claim's I've little. I'm less sure of that.

How does one go about forgetting wrongdoings, hurt feelings, odd and uncomfortable efforts to cloud the truth, malign, manipulate and fix me? I don't know. How do I go forward when trust has been broken repeatedly?

And when it comes to my son, how do I reconcile moments of adoration with those of such contempt? I wonder if releasing my other grievances—the gnawing, vexing discontent—I'll have more room to love him, less time and energy to magnify his defects. And what of mine?

Perhaps I should scrawl my complaints on paper—the ridicule, manipulation, dismissal, bullying, belittlement, one-upmanship—then wad it up and put a match to it. Maybe if I make the feelings tangible—graphite on a sheet of wood pulp—I can set it aflame and watch my indignations burn then float away as embers. Maybe then I'll be able to forgive myself, my son, the others, and from that forgiveness, melt away my aches.

8.16.2020

unforgiving

It had been only three days since my son's last grand mal seizure. As Calvin convulsed, at first tangled in his covers, Michael and I caressed his arms and legs, kissed his face and told him that we love him. It was the first time in awhile that I cried after one of his seizures. Perhaps my tears were triggered by a state of physical and emotional exhaustion from months of taking care of a child who can do absolutely nothing by himself save play with his baby toys in a bed with side panels and a netted canopy. This pandemic has made everything about life harder. On top of that, Calvin's epilepsy has been unforgiving as ever.

When the seizure was over, Michael went downstairs to finish preparing dinner. I sat on a step stool next to Calvin's bed and kept vigil, watching and feeling my boy's chest rise and fall. In the dim room, as I mourned my son's condition, I wondered again how I'd keep it up, this caring for him as he grows into a young man. I don't really know the answer. In the quiet, I recalled how, earlier that day, I had seen little kids riding bikes with their friends, siblings and parents. Last week I'd seen a child half Calvin's age swimming in the brackish water off of Simpson's Point with his mother, the two of them chasing schools of hungry fish churning the water. I'd seen a little girl skipping down the street with her dog. I'd seen a young family buzzing around in a small community garden, perhaps picking raspberries, beans or tomatoes. My child has nothing to do with any of it. His body grows but most everything else about him stays the same. Though sixteen, he's still an infant-toddler. He still wears diapers, which in the hot, humid weather make him sweat. His go-to toys are still rattles and chewies. He still seizes. About the only things that are different are the soft, thin mustache that has appeared and is gradually darkening, and the thought that he is becoming permanently psychotic due to years of seizures and antiepileptic drugs.

As evening fell and the room around me darkened, my thoughts turned to the young man I just started writing to who is living the rest of his life on death row. Online, I've seen photos of the cramped, rusty, neglected cells in his so-called correctional facility. I wonder if he can ever see trees, stars, the moon, or hear wild things bark at night like I do. I wonder what he dreams about while I dream of things like my mom and dad, San Francisco, missing flights, breathing underwater, Calvin seizing. I wonder if this captive soul can remember what the world looks like outside the massive prison walls. Does he ever catch the scent of sweet clover? Hear the buzz of bees and the chirps of birds? Does he remember or see bodies of water slip under low bridges? Does he imagine gleeful children so unlike my son leap from their spans on these unforgiving days of summer?

8.08.2020

my america

my america is gorgeous. it lives up to its original promises. it is inclusive and, like the universe, is ever-evolving. it refuses to fetishize the evils, abuses and inequities of white nostalgia. it's hopeful, open, well-educated and well-informed. it's full of folks who are wise, charitable, courageous, righteous, curious, ingenious and brotherly.

my america is welcoming, kind, and loving. Its people admire and embody honesty, humility and decency. as someone once said, it leads by the power of its example rather than the example of its power. in my america, leaders are driven by truth, compassion and a great desire to unite the rest of us for the common good.

in my america, everyone recognizes that success is not achieved in a vacuum, where bootstrap and rugged-individualist theories die on their mythological vines. it's where people appreciate that their triumphs are won only through the help of countless others—the banker, the paver, the farmer and harvester, the meat packer, truck driver, garbage handler, builder, baker, coffee roaster, bagel maker. in my america, the empathy gap and the chasm between the haves and have-nots narrows instead of widens, and workers are not exploited, rather, they share the fruits of their labor.

in my america, women and people of color occupy a majority of the seats in boardrooms, executive offices, faculties, courts and cabinets, embassies and halls of congress. in my america, racism, discrimination, xenophobia, misogyny, bullying, abuse, harassment, rape and femicide are things of the past. in my america, women, people of color, lgbtq people and their works are proportionately represented in monuments, art museums, literature, film, theater, music and television.

though i'm no christian, in my america, people who claim to love jesus actually embody his teachings by loving, accepting and serving their neighbor—whether gay, straight or transgender, muslim, jew, atheist, native or african american, latino, asian, citizen, immigrant or refugee—and by feeding the poor, housing the homeless, healing the sick, casting no stones.

in my america, syphoned funds from a bloated military are injected into education, healthcare for all, childcare, infrastructure and housing. in my america, no one is the victim of police violence or profiteering, there are no private prisons—perhaps no prisons at all—and capital punishment is forbidden.

in my america, our sordid history is taught in schools, not scoured and whitewashed like it has been for decades, if not centuries. it's a nation where symbols of the failed, treasonous confederacy are toppled once and for all. it's where monuments revere heroes of noble and just causes, and memorials honor victims of atrocities. in my america, we are moved to feel remorse for the crimes of our forefathers, and to atone.

in my america, those who are fleeing war-torn, starved and violent nations are welcomed here with open arms.

in my america, people see the value of—and work to protect—each other, particularly the vulnerable, including people like my son calvin, who in so many ways is one of the best americans i know.

8.07.2020

one of those days

Yesterday would have been one of those days when I'd cry on Woody's shoulder and he'd brush my tears away. It was also the first day in weeks that I walked down the street with Calvin to Woody's house. Knowing no one would be home, I let Calvin climb the steps to the side porch and, like so many times before, we tried to ring the doorbell. As I peered in through Woody's kitchen window, I felt sad knowing I'd never see him again, and I wondered what the new owners will think of a frustrated mother and her impossible son coming to bang and drool on the corner of their garage.

While I stood with Calvin as he mouthed the white vinyl siding, I noticed the small azalea I had planted for Woody a few years ago, the one which I insisted was pink and he swore was red. I saw that the hostas in the corner of his garden are beginning to bloom. I noticed how quiet it was standing in the driveway in the heat of midday, a stark difference from the morning I'd spent with a boy whose moaning, screeching and hollering has chapped my nerves to the point of fraying.

Back at home, as I sat on the green couch with Calvin batting away his flailing arms, cinching up my shoulders to keep from having my hair torn out, squinting my eyes and turning my head to avoid an errant fist, I began to weep. Every once in awhile I consent to feeling sorry for myself. Yesterday was one of those days.

After five months of consecutive daytimes taking care of Calvin by myself, I'm tired. I'm bored walking in circles behind my kid. I'm frustrated with his miserable antics. I miss seeing Woody. I'm mad at the world. At times, I resent my situation. I'm ready for life to get back to normal, whatever that means. I'm sick of the tiny little petty man in the Oval Office, despise his harmful and reckless policies, his deceit, his profiteering, his swamp full of bootlickers and cronies, his dog-whistle politics and the way he divides America. I'm demoralized by my son's relentless seizures, terrible behavior and my powerlessness to do anything to improve them.

Later in the day, while Michael was upstairs with Calvin, I watched as long shadows stretched across the backyard, heard crickets and birds chirping, noticed the sweetness of the tall phlox coming into bloom. A warm breeze swept across my face and carried a greying fringe of hair. I thought about the late afternoons when I'd go visit Woody, just as the sun bent around his front porch before falling off into the trees. We'd be sipping our toddies and watching the world go by, and maybe he'd be wiping away my tears.

8.03.2020

mixed bag

The last month or so has been a mixed bag, much of it a bit of a disaster. At one point, midway through July, Calvin had had ten grand mal seizures in a rolling 31-day window. That's probably his worst stint (grand mal-wise) since being diagnosed with epilepsy when he was two years old. He ended the calendar month with seven grand mals, three focal seizures and one pain episode—night terrors? migraines? benzo withdrawal?—which we treated with ibuprofen, rectal THCA oil and, finally, nasal midazolam.

After the first bad stint of seizures, we decided to try reducing Calvin's Epidiolex, the plant-based pharmaceutical version of cannabidiol (CBD), which, over weeks, we had eventually increased to a dose of 90 mgs per day. Despite the fact that that dose is only half of the recommended starting dose for Calvin's weight, it seemed reasonable to reduce it for a few reasons: one, because high doses of artisanal CBD oils seemed to exacerbate his focal seizures; two, because his seizures had increased since starting it; and three, because his behavior has been so bad—lots of grousing and mania.

So, in the third week of July, we nearly halved his Epidiolex to 40 mgs per day, then a little over a week later reduced it again to just 20 mgs per day. Since then he's gone seven days without any seizures, which is no milestone, but it's better than having grand mals on three consecutive days.

In other news, Calvin is growing like a weed. The crown of his head reaches my nose, and my best guess is that he has easily topped eighty pounds. So, though he is still a shrimp for his age (though sixteen, he's the size of your average tween) he is getting bigger. And while growth is evidence of him thriving, he's getting harder to lift and handle.

Two days ago we started giving Calvin Milk of Magnesia to treat what we think is acid reflux which might be causing some of his manic outbursts. Thankfully, magnesium is known to be calming and it also treats constipation, so we were able to discontinue his Miralax, at least for now. Years ago, I remember reading that magnesium was being researched for its effect on seizures, so I am interested to see if it seems to help, though it might be hard to distinguish if any reduction in seizures is due to the recent decrease in Epidiolex or the initiation of Milk of Magnesia.

Thankfully, the past two days have been good ones. He's slept fairly well and been much calmer and happier despite the full moon. I'll leave you with photos taken yesterday, just up the river in Richmond, one of our favorite spots in Maine.

7.26.2020

emotional landscape

There are days that are so dark that I wish my son would disappear into the ether, dissolve like a lozenge on my tongue, seep into the earth like so many drops of rain. And yet, I am without a doubt a better person having carried and cared for him all these years, and for that I owe him a debt of gratitude. But sometimes I wonder how long I can keep up with the intensity of care he requires, and I can't imagine others loving him, cuddling him, and responding to him—especially as he grows—in the way he needs to be happy, healthy and to thrive.

Thursday was one of those days—hard on my body, my psyche, my spirit. I got frustrated. I lost my patience. I screamed, once, long and hard and primal. I grieved. I felt a valley of contempt for Calvin as he screeched and writhed and moaned and flailed all day long and into the night in what we finally concluded was probably a ghost of benzodiazepine withdrawal. It's days like these that sink me, if only momentarily, into oceans of blues.

Among others, Calvin is at the root of my dark feelings. Pain and anger. Loss and grief. Frustration, hurt, impatience. Resentment and contempt. Since his birth, I experience these more deeply than ever before. But I embrace and honor them—these most human emotions we are sometimes taught to betray, suppress, abandon—while trying not to wallow. Perhaps they've gained gravity from the chronic grief of losing a child who is still alive: the loss of a boy who, if things hadn't gone wrong, right now would be riding bikes and running around town with friends; the loss of a boy who right now might be writing down his thoughts, might be studying the stars, protesting injustice; the loss of a boy who, in a couple of years, would perhaps be going off to college or exploring parts of the world like his parents had done.

But I am grateful for how this grief over my child informs my world, my thoughts, feelings and notions. Maybe, like befriending and falling in love with people here and abroad— folks of different backgrounds, religions, races, abilities and nations than my own—being Calvin's mother has helped me to better imagine, understand and consider what life might be like for others who struggle with hardship.

Maybe, by being Calvin's mother—getting injured by him, seeing him repeatedly seize, hearing him screech and holler, feeling so helplessly unaware of the source of his misery, watching him barely develop, worrying about his and our future, losing sleep, even having contempt for him—has taught me how to better forgive people who hurt, offend, betray, bully, wrong and deceive. I wager everyone has shit going on in their lives that hinders their ability to cope and to at times really see themselves, their words and actions, and to appreciate that of those around them, even ones they love.

Of course, there are the sunny emotions like joy and love, which live in concert with the virtues of selflessness, empathy, compassion, patience, humility, grace, charity, gratitude, apology and forgiveness. Calvin's purity and innocence inspire me to practice these, at least when I'm not in the thralls of a pity party or having my hair torn out. If only I were as gifted as he at delivering them so unconditionally. Regrettably, I fail, perhaps particularly in the patience department, though I wager my husband would disagree.

And so, upon reflection, it seems the richest, most interesting emotional landscape may not be the most clear, placid and brilliant, but one that has depth and shadows. Maybe it's one of despair juxtaposed with hope, of contentment alongside struggle, of joy straddling sorrow, each one complimenting the other, each one begging to be explored. Maybe the most meaningful days are when a troubled, agitated, impossible boy can melt into my arms, grinning and giggling at my kisses, and wherein we both discover sublime calm, if only for a moment.

7.19.2020

my friend woody

In the ten years since his wife's death, I've been looking in on my neighbor and friend Woody an average of a couple-few times on most days. Today would have been his 88th birthday.

Woody did all the things a dear friend does. He listened to me rage about Calvin and rant about politics. He endured my endless questions about everything under the sun, including his experiences in the Korean war. He made me laugh, wiped tears from my face on several occasions, and hugged me when it counted most, which was at first seldom, then often, before it became daily. He told me about his late wife, Syd, who regrettably I knew only a little, though I remember leaving her funeral—during which friends described what a remarkable, loving, kind and generous person she was—determined to be a better person.

Once we got to know each other better, Woody and I cried together when he told me about his son, Scott, a talented artist who died in his thirties. We cried together again, at times, when I shared my struggles with Calvin—the loss, the frustration, the worry, the chronic grief of raising a child who barely develops. I never had to hide my feelings from Woody and he always validated them.

Weather and Calvin permitting, I would walk my boy down the sidewalk to visit Woody. We went so often that Calvin knew early on which driveway to turn into. He'd go up the steps of the side porch and I'd help him to ring the doorbell. Sometimes, just to razz Woody, we'd ring it several times, even when we saw him coming, rolling his eyes at my foolery. Woody always let us in, regardless of how drooly or handsy or crazy Calvin was being. I'd sit my son down in Woody's kitchen rocker, snatch a Hershey's mini out of the candy jar and feed it to Calvin. Often, I'd help myself to the various snacks— pistachios, cashews, home-roasted walnuts and hazelnuts, sesame sticks or Chex mix—that Woody kept on the shelf as if for me. We'd stay until Calvin became too antsy, which was usually only a handful of minutes.

On afternoons when Calvin was being cared for by Michael or a nurse, I'd visit Woody by myself with Smellie in tow. In the winter, we'd sit in a room just off of the kitchen, a rolling fire warming our bones. His timid cats, Trixie and Norton, both got used to us, even letting Smellie lick their ears. In the other months, Woody and I sat on his front porch watching the world go by while sipping our toddies. He preferred Canadian blended whiskey with diet ginger ale. My go-to was bourbon on the rocks. Though Woody didn't drink bourbon, he kept a bottle for me in the cupboard with a backup bottle stashed behind it. I called it his magical cabinet. Though I offered, he never let me buy my own drink.

"You're the best thing to happen to Longfellow Avenue," he'd say to me, and I'd return the compliment. Sometimes, we'd hold hands.

Like good friends do, Woody let me be myself. He accepted me, flaws and all. He got used to my frequent cussing, even swearing himself a few times, which made us both chuckle. I got used to his sometimes curmudgeonliness. Endearingly, he called me a twerp. I made fun of his Maine accent by always asking him what a "twupp" was. We laughed about forgetting things like the names of actors or crooners we heard on the radio. Despite fleeting forgetfulness, Woody was damn sharp, even as his body slowly gave up.

Regrettably, after what had been a somewhat hard winter for him, because of Covid-19 we were not able to embrace for months, our visits reduced to talking to each other on the phone from opposite sides of his first-floor windows. Interestingly, he seemed more talkative on the phone than in person, even when glass was the only thing dividing us.

In true form, and not unlike my own father, my dear friend Woody was active until his last days; despite having pancreatic cancer, he mowed the lawn and weed-whacked the week before he died. Last month, he died peacefully in his sleep in the comfort of his home having been surrounded by family in the days before. I was able to visit him, holding his hand while sitting on the edge of his bed in my N95 mask. I was able to tell him how the weather was on his front porch, what kinds of birds I had seen, how the squirrels were taking over the neighborhood and what shrubs were blooming in my garden. I was able to see him smile at me with those watery blues, saw him lovingly watch me leave the room.

"Ciao," I said to Woody one last time, his eyes closed. "I love you very much. You're the best thing to happen to Longfellow."

Alden A. Woodbury, July 19, 1932 - June 16, 2020

7.15.2020

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.

7.10.2020

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.

7.03.2020

ain't no saint

Occasionally, after hearing about the struggles, angst and pains of raising our disabled son, a stranger, friend or in-law will tell me I'm a saint. While I appreciate the sentiment, the only saint in our household is Calvin. Smellie comes in a close second, that is if dogs, especially those who pop chippies and squirrels, qualify for sainthood.

Last week, when walking back from Woody's house, Calvin was staggering and stumbling, limp as a ribbon. I had to make a concerted effort not to trip him or let him topple me. No method I attempted improved our trajectory. I held his hand, gripped his wrist and upper arm leading him forward. I slung my arm around his shoulder, his waist, clasped my hand at the back of his neck trying my best to propel him. I walked behind him prodding him along, every few steps my hands pushing and patting his shoulder blades. My efforts were nearly futile. Every time I stopped nudging or tugging him, he just stood there, even though our house was in view just a few yards away. Finally, I got so frustrated that I yanked him along by his wrist at a pace quick enough to straighten out his serpentines and prevent him from dropping down. All the while I cursed him and our regrettable situation. A devoutly Christian friend once told me that I'll be going to Hell. If I thought Hell exists, which I don't, I'd have little doubt I'd be going there, but not for the reason she asserted (which is that I don't believe Jesus is my lord and savior.)

Despite knowing all too well that Calvin can't help any of it—his poor balance, his awkward gait, his weakness and lethargy, his restlessness, his mania, his drooling, his sun-staring, his epileptic fits—sometimes he still drives me batty. The stress from chronic sleep deprivation, monotony, cabin fever, the weight of anxiety over seizures, my son's vexing behaviors—all exacerbated by the coronavirus—can lead me to some ungodly behavior.

But just when I'm about to commit the worst blasphemy because Calvin has bitten the radiator or the bookcase or the carpet or the faucet, or dribbled prune juice all over the floor, or is stubborn as hell refusing to go where I want or need him to go, my boy turns to me, pulls me in and wraps his arms around my neck. Sometimes he gives me a kiss on the nose. For a second, I glimpse the sweetest, most angelic smile on earth. As he graces me with his singular version of saintliness, all my anger and frustration dissolve into the secular heavens.

6.30.2020

candlelight vigil

In my dreams as a kid I used to smell death. The scent was sickeningly sweet. Typically, no one in my dream had died. It was just a sense that came over me, a notion more so than an aroma, that death was somewhere nearby. In any case, it made me queasy.

Last night at six-thirty, Calvin had a grand mal. It was only day three since his last one, and an unusual time of night for him to seize. No interventions were necessary but to lay our hands on him and kiss his neck. In its wake, he was more fitful than usual, couldn't lay down or sit still. Eventually, though, he settled and we pulled the covers over him as he fell asleep.

Sudden Unexplained Death in Epilepsy (SUDEP) is thought to be more common in the twenty minutes, or so, after a grand mal. So, I remained with Calvin while Michael brought up our dinner which we were just about to eat when we heard Calvin seize. Michael pulled a chair into the room and set a lit candle on Calvin's dresser among his various medicines. I sat on Calvin's changing table with my plate in my lap. We ate our dinner bedside, a candlelight vigil, lamenting Calvin's struggles and stresses, wondering if he'd one day succumb to SUDEP, then deciding finally he's too much of a fighter to submit.

After sleeping peacefully for hours, this morning at four Calvin woke to a focal seizure. The fit was long. He wasn't breathing during part of it. I syringed his morning THCA cannabis oil into the pocket of his cheek and under his tongue. Finally, he came out of the seizure, then fell right back to sleep. As I had feared, an hour later he suffered a second grand mal.

As I laid in bed next to him my mind wandered. I wondered how many seizures a brain can handle. I listened to the songbirds outside his window feverishly making themselves heard. I remembered how the only word Calvin ever said—just once—was Mama. That was before the seizures and drugs started to do their hurtful work on his development. After half an hour I returned to my own bed. I tried to get comfortable, focusing on relaxing my jaw and face muscles. Eyes closed, a hint of that death dream-smell came over me. I held Michael's hand. I thought of my friend Woody, of the little girl Charlotte who had epilepsy and died from probable complications of coronavirus. I imagined the candlelight vigil of the night before. I never did make it back to sleep.

6.27.2020

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.

6.23.2020

forget-me-nots and cardinals

Crouching, I toss mulch across the beds in swaths of brownish-red. I take care not to cover the baby growth, like seedlings, of what will next year be clouds of tiny blue and white and pink flowers. Twenty-plus years ago, Mom and I scattered my dad's ashes north of San Francisco, the city in which he was born, in a glen shaded by moss-covered trees and a creek running through the hollow, its banks massed with the same flowers. I asked my mom what kind of flowers they were. She told me they were forget-me-nots.

A few weeks ago, I spotted a couple of forget-me-nots sprouting in my neighbor Woody's yard aside his house in the soft earth near where a few years ago I had planted a couple of azaleas for him. He and my dad were similar in some ways—cleaning engines, mowing lawns, keeping things in order.

As I pulled my garden cart beside the burning bush, peering into its center I met the eye of a female cardinal, her orange beak glowing like an ember amongst a forest of green. There she sat as she did this morning and the evening before and the morning before that, her tail a stiff orange pencil poised on the edge of her nest. I saw myself in her, sitting and watching the world go by from her solitary perch. Going nowhere. Intent on her commitment. Captive. Waiting for something—anything—to disrupt or threaten the object of her vigil.

6.16.2020

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

6.11.2020

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

6.08.2020

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

6.03.2020

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