some kind of justice

As the mother and champion of an uncommon child—a boy who is nonverbal, legally blind, incontinent and suffers from a serious brain anomaly, cerebral palsy, developmental delay, autism and chronic epilepsy—I can describe instances of being neglected, unheard, misunderstood, dismissed, marginalized, patronized, and maligned by public servants, medical experts and society at large. I know the anguish of having a child who is sometimes treated as insignificant, undeserving, fringe, and in ways scorned and feared. I know what it feels like when others, whose care he is under—doctors, teachers, aides, nurses—don't hold themselves accountable when he gets hurt. I get angry, frustrated and indignant at what I see as injustice. Yet despite the struggles, heartaches and miseries of being Calvin's mother, I've never felt unsafe, vulnerable, discounted or mistrusted merely because of the color of my skin.

On Tuesday, I held my breath awaiting the verdict in the trial of George Floyd's modern-day lynching. Finally, I heard the words describing the homicidal defendant: Guilty. Guilty. Guilty. I exhaled and wept. I thought to myself, finally, some kind of justice, for another unconscionable offense amid generations of neglect, condemnation, oppression, abuse and murder of African Americans. 

Yet, Tuesday's guilty verdict doesn't mean the end of injustice, in the same way electing a Black president is not evidence that we are in a post-racial America.

Equity remains elusive for millions of Americans in this nation of so-called liberty and justice for all. Injustice and barbarism are the foundation of this nation's mostly-white wealth built from the ills of white supremacy, on stolen indigenous land, by generations of the enslavement, exploitation, abuse, terrorization, torture and murder of Black men, women and children. Today's mass incarceration of African Americans is a relic of slavery and Jim Crow, a way to continue profiting off of their bodies, to subjugate, disenfranchise, disempower. White supremacy and racism in this country are not superficial; like some tumors, they're pervasive and malignant, must be strangled or cut out.

Consider that many Black Americans are still fighting for: the right to vote; the right to live in decent neighborhoods and homes; lead-free water; proper healthcare; decent educations; affordable apartments; fair loans; decent jobs, raises, living wages; executive desks and seats in the boardroom; the right to move about freely; to safely drive, walk, jog, birdwatch, nap, barbecue and breathe; the right to take a knee in peaceful protest against their abuse and murder at the hands of vigilantes and the police. All because of the sound of their names and/or the color of their skin.

So, too, Black Americans are still fighting against being racially profiled and therefore unjustly suspected, stopped and frisked, pulled over and assailed, followed, stalked, interrogated, bullied, roughed up, falsely accused, arrested, jailed, unjustly sentenced, choked or shot before they even have a chance to state their case.

Today, we can breathe a sigh of relief for some kind of justice done in a Minneapolis courtroom last Tuesday, but the nation at large—with its toxic white supremacy infiltrating our military, police forces, conservative media, and halls of Congress, and its harmful racist policies and practices from healthcare and housing to law enforcement—is far from fulfilling its promise of liberty and justice for all.

Celebrating the guilty verdict in the trial of former Minneapolis police officer Derek Chauvin,in George Floyd Square on Tuesday.Credit...Victor J. Blue for The New York Times

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.

twenty-twenty-one

twenty-twenty-one falls easy on the ears. the softness, in part, might be in its numerical oddness; evens have always felt hard-edged and unforgiving to me. in black jack, twenty-one is a lucky number. maybe this year will be a winning one, a year to celebrate and remember. with luck—and numbers—some of the conceited losers bent on greed and grift, apathy, deceit and bigotry will fade in the rearview mirror and become nothing more than a bunch of pathetic has-beens. maybe 2021 will shape into one of hope and light, unity, decency, honesty, selflessness and, perhaps most of all, justice.

as in every year, i hope for my son to outgrow his seizures. maybe this year will be the one. he's doing pretty well—seizing less, walking, sleeping and acting better, practicing using the potty and getting in and out of his bed with less help. despite the pandemic and its limitations, life is easier than when calvin was little, back when there was so much dread and angst, sleepless nights and weeping. he'll be seventeen in february; my body, heart and mind have felt every last minute of it. in our case, time has not flown by. but that too has its advantages.

michael has shoveled snow only once so far, and we've had two complete thaws. it's always good to see the green. hopefully it will be a mild winter. at the fields yesterday, i saw a blue heron flying low and graceful. i wonder why when i spot them they're always solo. when they take off, where do they go? a bunch of ducks paddle and squawk in a pond half iced-over. smellie would love to sink her teeth into those soft bodies. iridescent feathers everywhere. a chain-link fence keeps her from getting to them. they don't know how lucky they are.

it'll be forty years since i graduated high school. perhaps i can gather with some alumni to celebrate this summer. seattle is gorgeous june through september. i have so many loved ones living there—some from childhood, high school, college, plus a couple I met while living in san francisco.

the backyard garden is shaping up to be glorious. better than ever. the rhododendrons are encrusted with buds. the evergreen azaleas, whose buds appear later, show promise. as always, i have hope for an early spring. for this west-coast gal, spring—and 2021—can't come soon enough.

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

present trouble

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

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

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

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

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

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

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

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

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

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

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

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

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

keep on truckin' (toward justice)

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

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

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

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

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

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

secularly blessed

These past several weeks I've been feeling pretty fortunate, lighter and livelier simply knowing that my son Calvin has only had six seizures in a month's time. Granted, all of his seizures have been grand mals, but since 2007 they've been self-limiting, each convulsive fit lasting about about ninety seconds rather than the twenty or forty-five minutes of yore. Six is the rare figure equal to the least number of seizures in any given calendar month since September of 2016 when he had just five. That was when he was on a higher dose of Keppra by weight, and was still taking nearly four milligrams of the benzodiazepine, Onfi. In other words, this past month he's done as well as when he was on far more pharmaceutical medicine, albeit not as well as a nearly a decade ago when, on high doses of three anticonvusant drugs, his monthly seizures were in the low single digits. But back then we had what felt worse even than seizures: an impossibly manic, agitated and shrieking child who reduced me to tears nearly every day.

What also feels liberating to me lately is the absence of partial (focal) seizures these past several weeks. My gut tells me that their recent disappearance is due to the reduction in Keppra we did in mid May, though it could be due to the increase in my homemade THCA late that same month.

Noteworthy, too, is Calvin's recent growth and weight gain, which was enough to put him on the charts; for the second time in his life he has hit the first percentile for weight for his age. He's also in the thralls of puberty, sprouting hair in all the usual places and, on these hot, humid days, is just beginning to smell like teen spirit. Despite all of this, his seizures aren't going crazy. Knock on wood.

When I am feeling grateful about a relatively seizure-sparse month, it reminds me to be grateful for our other fortunes. I think about how lucky we are to be breathing clean air and drinking clean water, and for the privilege of living in a comfortable home in a safe part of a nation which is not war-torn. Also, we are secularly blessed this time of year to have air conditioning in Calvin's room, and to have a thriving yard chock full of beautiful flowering shrubs, a milky way dogwood in full bloom, a burgeoning perennial garden, and to be able to eat dinners in the screen porch that Michael built years ago. I feel most grateful for our friends, for our community and for Michael's job, and the fact that we have decent health insurance because, as unjust as it is, not everyone does ... yet. I thank my lucky stars for Calvin's various caregivers who help me out a handful or more hours each week. I think myself fortunate to live close to the college campus and its students, its athletic fields and their trails, and to our modest downtown. I owe a debt of gratitude to Calvin's medical marijuana dispensary where I get his THCA flower, and to the amazing folks at Palmetto Harmony for making Calvin's CBD oil. I'm grateful for wicked-smart people who have the wherewithal to advocate for women's rights, the rights of oppressed and marginalized Americans, and for the rights of refugees hoping for asylum who are currently being held in horrendous detention centers at our border, many of the children separated from their parents just as was done to enslaved Africans and Native Americans, and to Jews and others in Nazi Germany, causing great physical and psychological harm.

So this enormous gratitude and humility comes with more than a modicum of hope that Calvin's seizures continue to retreat and hope that our nation will choose to move forward—to progress—rather than to carry on its more recent backwards spiral into dirty air and water, fear, ignorance, hurt, hate and misfortune.

weight of the world

October has been, in great part, kind of miserable for me and my son—grand mals mark up my calendar dates in orange highlighter; too many blue squares represent partial ones. My son has seized on nearly half of this October's days. He hasn't had a month this bad since January.

Again, I ask myself all of the pertinent whys. Again, I spend long, monotonous days nursing a sick kid. Again, I grieve the loss of a healthy, typical child. Still, I am grateful for our privilege and fortune, for our nation, our home, Michael's job, our food, our drink, our relative health.

Outside these four walls the world seizes. A journalist is brutally murdered in his nation's embassy abroad. Innocents are starving to death in Yemen from a famine aggravated by Saudi attacks using weapons we supply. Central American refugees are fleeing poverty, rape and homicide in search of a better life. Homemade bombs are sent to prominent democrats—People of Color, vilified women, and former presidents. Two African Americans were shot while trying to shop at a grocery store. Jewish friends are once again made into scapegoats. Tree of Life synagogue was shot up by an anti-Semite. Eleven people dead. The list of innocent men, women and children maligned and murdered for the color of their skin or their religion continues to rise. Some conservative White Christians sit back and bristle at the thought of their political leaders and pundits being confronted and harassed at restaurants, while never seeming to flinch at the oppression, abuse and murder of marginalized Americans by domestic right-wing terrorists and White supremacists.

The anti-Semitic shooter gunned down two intellectually disabled brothers—the innocent of innocents, the purest of the pure—reminding me of the first victims of the Holocaust who were people like my son Calvin: the intellectually disabled, the infirm. I hear too many Americans grouse about athletes kneeling during the so-called national anthem. I see too many efforts to suppress the votes of minorities. I watch videos of White women calling the police on Black Americans who are minding their own business mowing lawns, swimming, barbecuing, shopping, entering their own goddamn homes. It angers me, this continued harassment, abuse and disenfranchisement of my fellow Americans who work their asses off, pay their taxes, live good lives. They're far better men and women than many of these politicians are.

Sometimes I wonder if Calvin's seizures are—like the gravity of a full moon—triggered by the weight of the world. I wonder if they'll ever stop, or if they'll keep marching right through. With his and others' suffering in mind, I scour the internet for images of Yemen. I find the photo below. I think to myself what we all should be thinking—this could be my child.

Photo by Abduljabbar Zeyad/Reuters

others' shoes

Hard as I try, I can never get inside my disabled, non-verbal son's head. I long to know what Calvin is thinking. I often wonder how he feels. Does he dream, does he remember, does he dread? Though I can never know the answers to these questions, in my quest to understand and to empathize with him—and to suppress my inclination toward anger and frustration at his protests—the best thing I can do is to put myself in Calvin's shoes.

Long before Calvin, I thirsted to know the experiences of others unlike myself—People of Color, the homeless, people from foreign lands. So, after graduating college I set off to explore the world—Great Britain, Europe, Turkey, former Yugoslavia, Kenya, Tanzania, Egypt—in search of other, and to find my best self. I saw firsthand how others lived—in urban apartments, in mud and grass huts, in slate-roofed brick inns, in bungalows. Everywhere I went people were the same—kind, generous, loving, trusting—and yet different in the ways they cooked, the foods they ate, how they worshiped, the way they labored. When I returned home I began to explore what life was like for my fellow Americans.

Yesterday—Columbus Day to some—was what many of us have reframed as Native or Indigenous People's Day. It's a day to honor the millions of Native Americans and their descendants whom Columbus and those like him did their best to exterminate and homogenize, the same people who continue to be marginalized today. Last Saturday night, Michael and I discussed the holiday with a group of friends. We spoke of the horrors that Native people faced when White imperialists invaded the Americas—genocide, disease, pillaging, slavery, kidnapping, rape. We spoke of the terror indigenous parents faced when their children were snatched from them and given to White Christian couples to raise. We cringed hearing that Natives who dared to speak their own languages risked having their tongues snipped by Whites. For hundreds of years, a similar horror befell African men, women and children who were forcibly brought here during the Atlantic slave trade and—if they survived the brutal months-long journey—were denied their religion, their language, their customs, their dress, their freedom, their families, their lives. As we spoke of these atrocities, I imagined walking in their shoes.

The subjugation of Brown and Black people continues today with policies that restrict their mobility and limit their access to housing, proper education, healthcare, employment, clean water, safe streets, the right to vote, and exposes them to criminal justice biases and laws that put them behind bars at alarming rates compared with Whites. What's more is that many if not most Whites deny this racist paradigm, willfully submitting themselves to—and emboldened by—the false propaganda of racist fearmongers like the current part-time, temporary resident of 1600 Pennsylvania Avenue and of his attorney general.

The other day I heard my state's US Senator Susan Collins—in a forty-five minute speech defending her support of a Justice Kavanaugh—say that she imagined walking in his shoes. While some of my best friends are White men, the shoes Senator Collins and other legislators should be imagining themselves walking in are the shoes of sexual assault victims and the shoes of the vulnerable and disenfranchised, whose numbers dwarf those of self-proclaimed wrongfully-accused White men. With few exceptions, White men are not the fragile of us in this nation; they are fortified, buttressed by centuries of laws upholding their rights before all others to own property, go to college, get credit, run for office and vote. They are not the oppressed; in government—on the Right—they are the oppressors. They are not the abused or terrorized; statistically, they are the abusers, the terrorists. And while I agree that many White men work their asses off to get ahead, because of the White male paradigm in this nation they have had a major advantage and—due to neglect or intent—have impeded others' progress far too long. The rest of us continue to struggle—to be paid an equal wage for the same work, to be free from racial profiling, to feel free to peacefully protest our oppression, to be sentenced fairly when we do wrong, to feel safe having a drink at a bar or party, to feel safe to camp and hike and walk alone at night, to feel safe calling the cops, to feel secure in our own cars, neighborhoods and homes, to feel safe to identify our assaulters. These are all freedoms virtually guaranteed to White men while being denied, through policy and/or practice, to the rest of us.

Furthermore, we who value freedom, justice and truth should rebuke so-called leaders who blame sexual assault victims calling them hoaxes, who champion legislation that limits freedoms of marginalized people, who disparage and malign women and People of Color, who characterize White supremacists and Neo-NAZIs as "good people," who align themselves with vicious dictators, who call African nations "shitholes," who pitch us against each other for selfish gains, who lie often and with impunity, who incessantly praise themselves, casting aspersions on others while never holding themselves accountable for a goddamn thing—and who openly and unabashedly mock people like my sweet boy Calvin.

We should recognize, own and credit—not feel guilty for or ashamed of—our privileges as White folks in this amazing land stolen from its natives and built on the backs of slaves. We should believe our fellow Americans when they say they are being oppressed. We should champion causes for the marginalized and most vulnerable of us. We cannot hope to better ourselves and our nation until we understand and empathize with the plight of others. The first step is to decide to walk in their shoes.

oh, and for paradigm shift, please go to vote.org

Photo by Floriana-Barbu

fifty-five

Today I'm celebrating my fifty-fifth spin around the sun. Tomorrow I celebrate eight years of writing a blog that I never imagined could garner over a million hits while helping parents of kids with epilepsy wean from their benzodiazepines, navigate the world of medicinal cannabis oils, and understand that they are not alone.

In honor of the milestone, for which I'm most grateful—grateful to my parents for having "mistakenly" made me, grateful for being alive, grateful for being healthy beyond a few achy joints, grateful for, and humbled by, the many privileges I enjoy due to the accident of birth—I squeezed into a favorite t-shirt I haven't worn in years, one that has the number 55 emblazoned on its front.

My mother used to tell me that we never really reach maturity, rather we continue to mature as long as we are alive. As a youngster, I thought that sounded pretty wise and thoughtful, and I fully embraced the notion. Since then I've continued to enjoy getting older. I figure with age comes experience and with experience comes wisdom. At least I hope I'm getting wiser; Oscar Wilde said age can sometimes come alone—yesterday's regrettable senate vote on supreme court nominee Bart (or is it Boof?) O'Kavanaugh was a validation of said premise.

Over time, I've come to consider birthdays as opportunities to explore how I can improve myself and find new ways to contribute to the betterment of the world. This year, I'd like to get back into jogging with the hope of lowering my stress level and strengthening my body, and perhaps fit into my jeans and tops with a little more wiggle room. I also want to use my agency to change the stale political paradigm, want to smash the conservative white-male patriarchy into bits, want to support new faces and voices, and promote progressive ways of managing an ever-changing world. Conservatism and originalism be damned. Nothing is fixed. The only constant is change.

So, as I celebrate another passing year, I hope to remain open and brave, not fearful and closed. I hope to see each day with new eyes ready to explore the beautiful and awful unknown. I hope to embrace humility while remaining fierce in my fight against bigotry, and sturdy in my struggle for justice. Most of all, I hope to keep growing older for a long while, and I aim with my everything to evolve.