gut punches (and others)

Reading the news Friday night felt like a gut punch.

"Oh, no!" I cried out, upon learning of Supreme Court Justice Ruth Bader Ginsburg's death, my verbal reaction reminiscent of Michael's response when he heard that a dear friend had taken his own life.

On the heels of my grief and disappointment over the news of RBG's passing came the regrettable recognition that the current administration would move quickly to replace her, no doubt with a nominee apt to, at the very least, kill the Affordable Care Act and its mandate covering preexisting conditions, broaden avenues for continued voter suppression, and subvert (further) the body autonomy of American women.

My mind went into a frenzy recalling myths about abortion and the ways in which conservative men, for the most part, have for decades worked hard to politicize and legislate (away) women's reproductive health and freedom by limiting access to birth control, and by further diminishing the reasonably small window in which most abortions are allowed to be performed. Republican-led, mostly-male legislatures continue their aim to tighten regulations and mount burdensome hurdles so as to strictly limit the number of the nation's abortion clinics making it difficult for women, especially those who are poor, to access safe and legal procedures. Consider, too, the disingenuous pro-life claims, borne out in attempts to stifle proven, best methods of preventing unplanned pregnancies and abortion, such as free and accessible contraception, family planning and comprehensive sex education. Despite the fact that neither the Old Testament nor the New mentions abortion—not one word—many people cite their religious beliefs as the basis to condemn it. Noteworthy, too, is that Christian women make up nearly two-thirds of those who choose to have an abortion.

I became further vexed pondering the fact that many who profess their belief in the sanctity of life also support capital punishment—state-sanctioned murder—while still others suggest allowing abortion in the case of rape or incest, thereby belying their pro-life claims. And what of the growing number of Americans like me who aren't religious, who don't buy into the notion that a zygote or fetus has more rights than its pregnant mother, who don't condone the legislative and punitive coercion of women to carry unintended pregnancies to term? Should the religious freedom of some Americans supersede the basic human rights of others? I don't think so. Moreover, consider the fate of malformed fetuses which will endure brief though agonizing lives if their mothers and fathers are not allowed the option of sparing them certain pain and suffering after birth.

All the while—incomprehensibly, if not for the current patriarchal paradigm—the subject of making accountable the male impregnators never seems to enter the political discourse or legislative debate regarding abortion. How convenient. This continued strangling of women's reproductive rights and personal empowerment and freedom is insufferable—a literal and figurative gut punch. And the stomach-churning truth is that now, with RBG's death, the specter of yet another diehard conservative on the Supreme Court makes women's hard-fought sovereignty as precarious as ever.

Obviously, I'm pro-choice, which is not the same as pro-abortion. However, were I aware early in my pregnancy the extent to which Calvin's brain anomaly would lead to his miseries, I wonder what I would have done. I think I know, but I can't be certain. Regardless, I don't believe I have the right to decide the outcome of other women's planned or unplanned pregnancies, which impact their mental and physical well-being, the stability of their families, the trajectory of their careers, and the health risks to themselves and/or their unborn.

At a time when over three-quarters of all Americans support a woman's right to choose, and when one in four American women access abortion, the passing of Justice Ruth Bader Ginsburg leaves American women vulnerable to a handful of privileged, conservative, male, Supreme Court justices, all with Catholic roots. As deft as these conservative justices are on the Bench, I have my doubts that they are capable of fully considering, from a woman's unique perspective, the sweeping risks and considerations, the threat to very private, personal and constitutional freedoms and equal access to life, liberty and the pursuit of happiness that unintended, unhealthy or hopeless pregnancies—or a government mandate to take those pregnancies to term—may represent.

As I mused on the terrible dilemma of losing one of America's best champions of gender, religious and racial equality, I recalled The Notorious RBG's use of a statement by the abolitionist, Sarah Grimké:

I ask no favor for my sex; all I ask of our brethren is that they take their feet from off our necks.

This November, get out there and vote. Know how to vote in your state. Vote early. Vote by mail. Complete your ballot carefully and put it in your city's drop box. Be prepared for long lines if you vote in person. Vote as if your healthcare is in peril. Vote as if your or your partner's reproductive rights are at risk. Vote as if corporations have more rights than you do. Vote as if your right to vote is in jeopardy. It's all hanging in the balance.

Now is not the time to pull any punches.

"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

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. 

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.

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.

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'.

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.