1.22.2021

herculean

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

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

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

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

1.20.2021

hope for tomorrow

Today was a rough one with Calvin. My patience tested, I feel emotionally battered. And yet, today feels markedly lighter. Tonight I wager I'll sleep better. Days are getting longer. The future looks at once brighter. Words like unity, light, renewal, democracy, decency, optimistism, give me hope for a better America. Rhetoric matters.

Tomorrow, I will worry a tiny bit less about the pandemic. I'll fret less about loved ones' safety, well-being and healthcare. I'll have more faith that social justice is coming. I already feel great relief seeing the mouthpiece of greed, deceit, selfishness, contempt, conceit, hatred and division fade in the distance. I'm eager and excited for a return to decency, experienced governance, sound thinking.

Last night I watched the documentary Crip Camp, about a summer camp for disabled children and adults in the 1970s. Through much of the film I wiped away tears. Scenes of institutionalized disabled children—hungry, half-naked, neglected—are raw and deeply disturbing. Other scenes of people pulling together and helping each other are uplifting. Unforgettable, too, are the scenes which show paraplegic kids and adults abandoning their wheelchairs and literally dragging themselves up the steps of the Capitol to protest inequality—the same steps on which, two weeks ago, smug Americans, most of them White men with a false sense of entitlement, staged an attack on democracy.

At today's inaguration, I saw a man with a stutter assume the presidency. I saw a uniformed, Black female fire captain recite the pledge of allegiance in English and sign language. I saw the youngest poet laureate recite her gorgeous words from the inaugural dais. I saw the Nation's first Latina supreme court justice swear in the Nation's first female, Black, South Asian vice president. 

Even as my son still seizes, and at least two Americans die from Covid-19 every minute, and the chill of winter is still gripping, the Canada geese are heading north. Spring is coming. I feel great hope for tomorrow.

1.16.2021

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.

1.09.2021

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.

1.05.2021

different vistas

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

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

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

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

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

On the drive home, I think of my childhood friend and neighbor whose autistic son, the twin of a neuro-typical sister, died unexpectedly last summer. Like Calvin, he was nonverbal and loved everyone unconditionally. Then, I think about my friend's little girl, so much like Calvin, seizures and all, who died last March from complications of Covid. I think about my friend's daughter who overdosed on opioids. Why do I know so many parents of supple children—Lily, Rose, Rainier, Kari, Jennifer, Katie, Kellie, Mike, Ross, Mikki, Martin, Cyndimae, Charlotte, August, Arnd, Kevin, Ronan, Elisef, Andrew—who didn't make it very far?

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

a different vista