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.

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.

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

brokenness

so much brokenness.

my child's brain. myriad hopes and dreams. promises. hearts. this nation. too many american families, homes and livelihoods. the criminal justice system. the federal pandemic response. all of this comes to mind in the dim, quiet moments while holding my son as he seizes.

so much brokenness. 

Calvin's strident seizure-gasps, like that of a death rattle. white police officers suffocating another black man—hands cuffed, face pressed hard into asphalt pleading, "i can't breathe." what is wrong with people?

so much brokenness. 

black joggers being stalked and shot. white women calling the cops on black men and making up dangerous stories about threats and assault. black people getting arrested on their own front porch, harassed on their campuses, in their library or dorm, in the foyer of their own apartment, shot while watching television in their homes. white men then questioning whether these blatant acts are racist. white men and women condemning black folks who take a knee to peacefully protest their ongoing oppression and violence against them. what is wrong with people?

so much brokenness. 

folks contemptuous of the act of wearing masks meant to protect those most at risk of exposure to this dangerous virus, like calvin. scornful of masks which are worn because we are supposed to care about and for each other. menacing men armed with AR-15s protesting government protective measures. a president stoking that very dissent. states opening up regardless of the virus' trajectory. folks congregating without masks as if uninfected or immune.

so much brokenness.

greed. corruption. deceit. wickedness. inequity. bigotry. bullying. conceit. narcissism. self-dealing. defrauding. sloth. petulance. recklessness. all these from our so-called leader(s). what is wrong with this man, these people?

so much brokenness.

and yet, that which is broken can usually be fixed. with love. truth. charity. patience. righteousness. courage. unity. science. knowledge. wisdom. ingenuity. leadership. accountability. selflessness. humanity. hope. kindness. compassion. empathy. like holding a broken child, a glimmer of dawn seeping through the shades as he seizes.

Merrilyn Downs prays over a memorial for George Floyd
Photo, Zach Boyden-Holmes, The Des Moines Register - USA TODAY Network

collective breath

On the way to Woody's, walking hand in hand with Calvin and Smellie, a friend approached on the other side of the street riding his bicycle. We shouted above a passing car or two, then he peddled across and stopped a safe distance in front of us. After chatting a bit, I asked how he and his family were doing.

"Oh, we're struggling," he said in a resigned tone.

My heart sunk.

"Yes, everyone is struggling in their own way," I replied.

He smiled, put his head down to find his peddle and nodded. We said fond goodbyes as he rode off.

When Calvin, Smellie and I reached Woody's house, I called him on the phone. When he picked up, and from opposite sides of his window, we complained about the biting wind, and I told him about my conversation with the neighbor. Woody's silence made me think he agreed that life is strange and difficult right now.

I've been thinking about the tens of millions of unemployed Americans struggling to make ends meet. While I believe we need to continue to shelter in place to mitigate the stress on the healthcare system, I'm sympathetic to the need for hurting people to get back to work. So, too, I've been lamenting those who are sick and suffering and who have lost loved ones to this insane virus. I've been missing seeing friends, gathering around a table to share food and drink and to shoot the shit from across a table. I miss the college students terribly; their absence is palpable and I know it has been hard on them to be away this semester. I feel things have been particularly devastating to doctors, nurses and teachers, especially those with young families.

Strolling home from Woody's house, Calvin turned to me for a hug, and while I embraced him I took a deep, collective breath for everyone.

resentment

To be honest, and thought it's an ugly emotion, there are times when I feel resentful—resentful of my disabled child, his neediness, his fleeting intensity, the way he disrupts my sleep and chaps my nerves. Though I'm mostly grateful, I'm sometimes resentful of my husband's freedom and frequent travel to faraway and exotic places which I long to revisit and explore. I'm resentful of this nation's so-called leader, his reckless policies and spineless lackeys. On days like this I resent the snow and the fact that the district called off school. I resent Maine winters, icy sidewalks, bad drivers, priggish individuals, ignorant fools. My weariness gets the best of me on days like these. No doubt you can tell.

Last night, Calvin went to sleep as soon as his head hit the pillow. Thankfully, Michael and I were able to finish our dinner while watching the first half of the film, Roma, basking in its gorgeousness. But just as we called it a night and crawled into bed, just as I was about to drift off, Calvin sat up and banged his head against the side of his bed and pounded his mattress repeatedly. In the space of half an hour, I laid him down for the one-billionth and one-billion-and-first, second and third time. I was so sleep deprived and vexed I could not contain the rounds of expletives rapid-firing from my mouth. These are the kinds of times when my resentments feel steroidal.

I have little doubt that the politics of the hour exacerbate my feelings of despair, frustration, and resentment. Certain circumstances bring irony into sharp relief, triggering some indignation, like when staunch opponents of Medicare For All must end up relying on fundraisers to cover their medical expenses, or when those with disabled children vote Red, going against their self-interests, or when people make the absurd and dangerous claim that Democrats want to destroy America, or when folks admonish decorated career diplomats who bravely and selflessly defend democracy.

Yes, when I'm exhausted I'm prone to feeling most resentful. I guess my guard is down. I resent the looks I get from strangers who don't understand the first thing about Calvin or what it's like taking care of his kind of child. I resent professionals of all ilks who think they know my son better than I do. I resent parents of typical children who show contempt for Special Education funding. I resent that there are really no local programs for kids like my boy. I resent the fact that some people malign me or play me for a fool. In the big picture, however, none of that really matters much to me. I know who I am, I know my tribulations, I'm okay with how I've learned to roll.

Today my eyes ache while feeling simultaneously swollen and hollow. My son is up to his manic screeching and antics. We're stuck indoors. The news out of Washington keeps getting worse. With little doubt things have not hit bottom considering the sycophantic actions of those emboldening the autocrat in the Oval Office.

Despite resentments, however, there is some welcoming news. Calvin is improving in myriad ways regarding his calmness, understanding, focus, expression, compliance, and overall sleep. He is having fewer seizures—virtually no focal ones—on far less medication. He has begun pooping on the potty after we give him a suppository, which translates into fewer dirty diapers. Though spring is still months away, we are headed in the right direction. Then, there's the excitement and hope of a sea change come November, after getting behind one of the wise, respectful, experienced, decent, Blue presidential candidates who have righteous policy agendas to help the middle class, students, the environment and the most vulnerable in out nation. The image of all these truths dissolves my bitter resentments in an instant, like the snow melting on a salted street in winter.

here and there and in-between

Tommy Orange. That's the name of the young Indigenous American who authored the novel I'm reading called There, There. I'm only a couple of chapters in, but already I'm engrossed with his artful storytelling of people and place. A native of Oakland, California, where his story unfolds, Orange references a quote by Gertrude Stein in which, on a return trip to her beloved Oakland forty-five years after first having left it, she describes with painful childhood nostalgia that "there is no there there."

Stein lamented that Oakland was no longer a place where a child “could have all anybody could want of joyous sweating, of rain and wind, of hunting, of cows and dogs and horses, of chopping wood, of making hay, of dreaming, of lying in a hollow all warm with the sun shining while the wind was howling.”

In Stein's mind and in reality, the place had changed, as all things inevitably do. But my sense is that modern Oakland's inhabitants, like the ones in Tommy Orange's novel, believe there remains much "there," there, though perhaps of a different kind.

I was reminded of Stein's quote when I read a meme a friend of a friend had posted on social media. The manifesto read:

Welcome

You came here from there because you didn’t like there, 

and now you want to change here to be like there. 

We are not racist, phobic or anti what-ever-you-are, 

we simply like here the way it is and most of us actually came 

here because it is not like there, wherever there was. 

You are welcome here, but please stop trying to make here like there. 

If you want here to be like there you should not have left there to come here, 

and you are invited to leave here and 

go back there at your earliest convenience.

The little blank box below the meme compelled me to comment. I first noted how ugly, poorly written, racist and xenophobic the manifesto is. I should've added that is it hypocritical. I protested the meme's perceived targeting of Black and Brown immigrants and refugees (Midcoast Maine is home to a growing number of African immigrants, particularly from Somalia). I went on to state that people come here fleeing war, famine, poverty, oppression, violence and genocide, not to seize this nation like its first colonizers did—settlers who sparked a bloody pogrom of its Indigenous. And I condemned the use of the term "what-ever-you-are" (tellingly, not "whoever-you-are") as a bigoted one.

The only constant is change, I said, the places in which we live in perpetual flux. I asserted that immigrants help us see the world through new eyes, challenging our assertions and our view of the status quo and, perhaps, encouraging us to see how we might become better people through love, compassion and charity for others who are different from ourselves. Diversity is strength, I added, variety the spice of life.

Regrettably, rather than engage in discourse, embellish, defend or concede their stance, the person who shared the meme blocked me. Initially I regretted that perhaps I'd been too harsh. 

After posting my comment to the meme, I learned it had been defended as simply a remark to people moving here from nearby states. The argument seemed flimsy at best, duplicitous at worst, so I did an image search of the meme to see what more I could glean. I found American flags posted in the footers of the memes along with warnings such as, No amnesty! Go back to the shithole! Go back to Suckistan! These sentiments confirmed for me the meme's intended target: those who are far from your average Vermonter.

Pondering it further, and looking to Calvin and his disability to inform, I'm reminded of the ways in which some strangers gawk at him. I remember the way I felt—and sometimes still do even after living in Maine eighteen years—like such a foreigner here. It's in the way some folks are watchful and guarded, the way we—as adopted San Franciscans—don't always fit into the literal and figurative landscape which, in certain time and space, can be sober and conservative. I realize that, even if the meme-manifesto were speaking only to people from other states, it's still an unwelcoming, protectionist, hidebound dispatch. It still says, "Stay away!" and "You're not like us!" and "You're not welcome!" and "Go back to where you came from!"—each caution a far cry from the road sign staked in the shoulder of the turnpike upon entering Maine which says to residents and visitors, "Welcome Home."

And as I read and transcribed those postings, I recalled the same hateful rhetoric which spews and echoes from the White House. Those sentiments do not embody the America I love, nor the one I'm proud of. And I realize folks who isolate themselves, who are averse to change and who have qualms with others are fearful of the unfamiliar and unknown. But I'm grateful for this ever-changing nation, and of new neighbors from faraway places. I'm grateful for the here and the there and the in-between.

unease

Again, I lie awake hours before daybreak. The dark of night seems to magnify my angst. When for various reason I can't sleep, I worry about whether Calvin will seize. Under the covers, I flinch when Nellie yelps in her sleep. I fret about the list of things I need to get done that I don't seem to have the time to do, the things that have piled up during the five-and-a-half weeks that Calvin didn't go to school—sweeping, mopping, dusting (what's that?), writing, reading, researching, filing, calling. I lie in bed, my mind racing, pondering the troubles of the world: war, famine, genocide, waste, poverty, pollution, misogyny, racism, corruption. I think of the human impact on climate and the havoc it is wreaking on our gorgeous Earth. I consider refugees desperate to find better lives for themselves, whom the people of our town and nearby ones have graciously—and some begrudgingly—received.

The other night, after I heard the rain begin to fall, I laid there on the brink of exhaustion and yet buzzing, lamenting the plastic microbeads, bags and bottles choking the ocean, the single-use plastic caps and containers washing up on beaches, the straws and swizzlers and six-pack holders, the syringes, balloons and latex gloves—you name it—that sacred sea life is ingesting and strangling on as we dream. I pondered the tons of toxic materials being released into our rivers, air and seas, and the sleazy politicians who are making that more possible. I grieve the burning of the Amazonian rain forest, the flushing out of its creatures and native peoples. I consider the rabid appetite of greed.

Yes, I lay awake in a warm bed in an ample house having filled my belly with delicious food my husband cooked, thinking about Yemenee people starving to death, and Rohinga refugees being forced back to their tormentors, and hurricane victims having just lost loved ones, homes and belongings. I consider how effing lucky I am, and wish I had the means, like a handful do, to fund everything. I lament that, in this nation of abundance, our fellow humans still live under cardboard boxes or on cold sidewalks while billionaires and certain politicians continue to enrich themselves at the expense and exploitation of everyone else.

While scrolling through my photographs yesterday, feeling weary of the world and of all-things-Calvin, I came across some I'd taken at last year's Bowdoin student art show. The small, framed piece that hung on the far wall of a room where my husband taught a class called Art and Time, was titled, Receipt for a Sunday and the Things Carried There, by a talented and ambitious student, Blanche Froelich, class of 2019. Rereading it reminded me to be grateful, humble, thoughtful, and generous to others; none of us live life without our own struggles, big and small. And the night is not the only time we feel unease.

Detail, Receipt for a Sunday and the Things Carried There, by Blanche Froelich

landon's gift

Again, our day began at three a.m. with the arrival of another focal seizure, the first of two, this one several minutes long. With the help of some extra homemade THCA cannabis oil, however, Calvin had improved by eleven, and so we set out for the Windsor Fair, a town or two away from the fair we went to a week ago.

Calvin did far better this time, even holding our hands and walking, though wonkily, willingly at times. Throughout the day we zigzagged our way between sheds of lounging cows and goats, cages of enormous sows with their week-old suckling piglets, and a raucous avian barn. All the while Calvin seemed to take it in, gnawing happily on his rubber chew toy and nibbling on snacks I'd cut up for him.

Several times I watched children and adults gawk at Calvin as if he were some freak in a carnival sideshow. When this occurs, as it does anytime we're in public, I feel a mix of sadness and anger. Sometimes I'm moved to act spitefully. I'd like to think they don't mean any harm; maybe it's human nature to rubberneck at a spectacle. Still, I often feel like an alien with my sweet little peculiar Martian, orbiting on the margins of things rather than feeling an integral part of the larger world. 

When we had seen enough of the sights, we stood in line to get an ice cream cone. A handsome, dark-haired boy approached us and asked if Calvin might like to have the stuffed animal he'd won in a midway game. I fumbled to answer, fairly certain that Calvin wouldn't respond to such a toy, his go-to playthings being hard plastic and rubber ones. But I was compelled to accept the boy's kind gesture because I remember well what it was like to be his age.

The boy introduced himself as Landon. I suggested we try handing the stuffed animal to Calvin to see how he'd respond. Landon crouched down closer to Calvin offering him the toy, speaking to him directly and asking if he would like to have it. Immediately, Calvin hugged the larger-than-life emoji and began mouthing it with fervor. We were all amazed and happy when Calvin received the gift so emphatically. 

Landon, who is as sweet a boy as you'll ever meet, and worldly beyond his years, told us he'll soon be thirteen. We greeted his dad and grandfather who were at his side, and as I spoke with Landon, his father told Michael that he had no idea Landon had planned on giving away his prize.

I took a quick picture of our newfound friends before shaking their hands and saying goodbye. After they turned to leave us, I looked up at Michael and noticed that he'd gotten quite choked up. Seeing his emotion, I began to weep openly at Landon's selfless gesture.

Random acts of kindness like these make our world go round. No doubt I'll rest my head on my pillow tonight thinking of Landon and how, if things had turned out differently, maybe Calvin would have become as extraordinarily thoughtful, fearless and empathetic as he.

If you are reading this, Landon, I hope you know how deeply you touched us and how much you made us feel welcome, important, and included, while so many others look at us as if we don't belong. You yourself are the gift you gave to us, one far larger than the sideshow prize that left your arms. How very lucky we are.

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.

imagine

Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people living for today

Imagine there's no countries
It isn't hard to do
Nothing to kill or die for
And no religion too
Imagine all the people living life in peace

You may say I'm a dreamer
But I'm not the only one
I hope some day you'll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people sharing all the world

You may say I'm a dreamer
But I'm not the only one
I hope some day you'll join us
And the world will be as one

—John Lennon and Yoko Ono

other's struggles

Back at the grocer. We go nearly every day. Curious kids with their indifferent mothers idly ogle my son. Heedless of my seeing. Clueless of his blindness. Ignorant of his seizing. Unwittingly oblivious to the missing white matter in his brain. Elderly, disabled and homeless folks display their keen insight and compassion. My son hugs them. They make my day a better one.

Between cellophane-bagged grapes and neatly stacked waxed apples, we meet a woman. She says her name is Jane. She's drawn to my son. Calvin knits his fingers madly. Gawks at suspended fluorescents. She's unfazed. He can hear their buzzing. Still, her greeting seems to fall on deaf ears. I tell her he cannot speak. I tell her he seems due for a seizure. Her apple blossom smile withers.

She and I stand and chat. I keep my son in hand so he won't wander. She tells me of her love of kids and of two ectopic pregnancies. No babies of her own to cuddle, no sons or daughters to raise. Instead, she spent time in children's hospitals giving love and gifts to sick ones. Knowing the struggles kids like mine and their families face, people's petty complaints bother her. I feel her pain.

Aside the grocer's bakery, I envision raging fires scorching acres of my beloved golden state. See burned-out cars abandoned roadside, bleeding aluminum. Regal oaks still stand, though now as blackened skeletons. Charred bodies wrapped in cobalt tarps. Entire neighborhoods, homes, lives, reduced to charcoal, cinder and smoke. I consider immigrants working in the fields not far away. Tireless. Sweating. Picking lettuce, apples, grapes. Backs breaking for little pay so the rest of us can buy fruit and vegetables cheaply. I tell Jane there's no comparing when it comes to others' strife and struggle. Everyone has their burdens others can't always see. People with hidden scars and weights sometimes complain. It's okay.

I muse on humans. We are the same the world over. Love our children. Do what it takes. Hope for better futures. Flee dangers. Seek out food, shelter, water, safety, equality. Desperate and fearful, we migrate for our loved ones' sake. Americans would be no different if faced with famine, war, despots, gangs, murder, rape. Like from burning buildings, we'd escape. Complacency and dispassion lead some to pass judgement. Others follow fearmongers blindly and willingly into thoughts and acts of hate.

I think of prayerful people, certain that their god will save them. So sure of answers to their pleas. Staid in their faithfulness. Good and loving folks whom nature haphazardly and grievously incinerates. Fires can scale the walls that even prayful people make. In god's name, pious war over territory on our precious Earth that has birthed us all. Whose land is whose anyway? If there is a god—I think to myself between plastic-wrapped fish and meat—there is one for all of us.

My child and I stand in line and wait to pay. He licks the glass beverage case. I wipe and kiss his drooly chin. Pat his head. Run my fingers through his hair. The woman in the other lane glares then averts her gaze. The man behind me smiles and winks, says goodbye and waves. My kid is seemingly oblivious. I'm sure he hears everything. Perhaps he can sense the burning embers others feel, their need to douse or hide their pain.

Camp fire, John Locher, AP

humanity of kinds

Humanity is black and brown and white and infinite, glorious other tones. It is preemie and teen, middle-aged and elderly. Humanity is supple, spare, furrowed, hideous, wiry, gorgeous and fat. It is long-legged and stout, walks hunched over and crawls on its knees. It limps with crippled arms drawn to its chest, and glides along exquisitely. It is sweet and reeking, chiseled and smooth, ratty and chic, and thankfully never perfect. Humanity bleeds.

Humanity is iron-clad abs and double chins, muffin tops, beer bellies, rotten teeth, gorgeous curves, saggy boobs, hard arms, unruly curls, waxed bald heads, botox lips and tattoos. It is blind and deaf, blond and brunette, ebony and ashen, gay and straight, female and male and everything in-between.

Humanity is artist, driver, janitor, billionaire, chef. It is designer, clerk, nanny, vagrant, vet. Humanity is bumbling fool and genius. Humanity is a spray-tanned, petulant, petty, small-minded, selfish, immoral wreck. It is an enigmatic child, speechless and seizing, careening through each fragile day.

Humanity is mother, father, brother, sister, child, criminal, saint. Humanity loves who it loves, shares its woes and hides inside. Humanity seizes and shits, suffers angst and despair. Humanity is ignorant and bigoted, embracing, progressive and wise. Humanity sticks a needle in its arm and a finger down the back of its throat. Its flesh and bones are riddled with disease. It is gluttonous and ravenous, skin sometimes stretched over starving bones. It wars, invades, rapes, beats, murders, imprisons and steals. It stumbles, bruises, breaks, grieves. It too often turns on itself.

Humanity—of another kind—is compassion. It is charity, love, empathy, openness, benevolence and gratitude. It is selfless, magnanimous, forgiving and generous. It shares freely of itself, expecting nothing in return. Humanity is not excess nor greed, nor is it oppressive. Humanity helps its brother and sister. It is not afraid of other. Its kindness and understanding have no borders. It reaches deep, crosses divides, walks in the shoes of others, empathizes with the little guy.

leaving home

Every day I hear or see something that reminds me how much we, as Americans, take for granted in this place we call home. 

Yesterday, the reminder was a social media comment about refugee and immigrant children being torn from their parents—even an infant suckling at her mother's breast—and being thrown in cages and behind detention fences. An acquaintance posted her opinion on the matter saying, "A loving mother would not put her child in the situation that would cause them to be parted. A selfish mother would play that game."

Her comment reminded me of those contemptuous folks who love to throw around the flabby platitude, race card.

I told her that if she spoke to some of the mothers fleeing other nations she would learn how wrong she is.

Later, while I was watering a parched garden, it occurred to me how spoiled some of us living in this nation are. We enjoy so many luxuries people in other countries only dream of—indoor plumbing, heated homes, fifty-seven million kinds of breakfast cereals, chips, wine, beer, coffee, tea, candy, cheese to choose from. Many of us have pets, cars, bicycles, warm clothes, cozy beds, doctors, medicines, computers, smart phones, jewelry, handbags, toys, sports equipment, table linens, gas stoves, porcelain sinks and bathtubs, pillows, wool blankets, shoes for every occasion, safe streets, good hospitals, nice restaurants, decent schools. Even so, we hunger for the newest apps, trendiest fads and latest gadgets.

What seems clear to me is the abysmal lack of imagination and compassion in the minds and hearts of those who condone the hasty and horrific separation of children from their parents—families who have left their homes and communities risking their lives to make it to a nation where life might be safer and better for their families. 

As with most trying situations, I think of Calvin. I imagine living in a country where Calvin has no access to medical care or treatment for his seizures. I imagine his epilepsy burning out of control and bringing him to the brink of death. I imagine a neighboring and prosperous nation offering great promise in treating his condition. What would I do? Might I risk fleeing to that land for the sake of my child's life? Perhaps I would. 

I then imagine living in a war-torn country where good people are extorted, children are regularly kidnapped and forced into sex work, gangs and militias, where mothers and daughters are raped, where food and water are scarce, where neighborhoods are gassed and shelled, where men are murdered, where homes and towns are burned to cinders. Might I leave home with my children to a neighboring and prosperous nation, leaving everything behind and risking it all for a chance at living free from fear and near-certain peril? Yes, I think I would.

When having a similar exchange on social media last year, a friend told me that he would not be a refugee because, "it is not in his upbringing or heritage" to do so. He went on to explain that he would not flee his homeland, but instead would remain to "make it better." Perhaps it is easier for folks to imagine this strategy having had no children. Or perhaps some suffer from an inability or unwillingness to imagine the grim reality of living in a war zone. Or maybe there are other factors which, though I've racked my brain to unearth, convince some that protectionism in the form of cruel and unusual treatment of children is how we as Americans should roll.

Today I read my friend's blog, a moon worn as if it were a shell. In it she posted a poem she'd read on another blog. She asked her readers to pass it on:

Home

no one leaves home unless
home is the mouth of a shark.

you only run for the border
when you see the whole city
running as well.

your neighbours running faster
than you, the boy you went to school with
who kissed you dizzy behind
the old tin factory is
holding a gun bigger than his body,
you only leave home
when home won't let you stay.

no one would leave home unless home
chased you, fire under feet,
hot blood in your belly.

it's not something you ever thought about
doing, and so when you did -
you carried the anthem under your breath,
waiting until the airport toilet
to tear up the passport and swallow,
each mouthful of paper making it clear that
you would not be going back.

you have to understand,
no one puts their children in a boat
unless the water is safer than the land.

who would choose to spend days
and nights in the stomach of a truck
unless the miles travelled
meant something more than journey.

no one would choose to crawl under fences,
be beaten until your shadow leaves you,
raped, then drowned, forced to the bottom of
the boat because you are darker, be sold,
starved, shot at the border like a sick animal,
be pitied, lose your name, lose your family,
make a refugee camp a home for a year or two or ten,
stripped and searched, find prison everywhere
and if you survive and you are greeted on the other side
with go home blacks, refugees
dirty immigrants, asylum seekers
sucking our country dry of milk,
dark, with their hands out
smell strange, savage -
look what they've done to their own countries,
what will they do to ours?

the dirty looks in the street
softer than a limb torn off,
the indignity of everyday life
more tender than fourteen men who
look like your father, between
your legs, insults easier to swallow
than rubble, than your child's body
in pieces - for now, forget about pride
your survival is more important.

i want to go home, but home is the mouth of a shark
home is the barrel of the gun
and no one would leave home
unless home chased you to the shore
unless home tells you to
leave what you could not behind,
even if it was human.

no one leaves home until home
is a damp voice in your ear saying
leave, run now, i don't know what
i've become.

~ Warsan Shire

I don't know what the answer is to our immigration dilemma. I do know it is wrong, harmful and dangerous to separate these children from their parents. And though I am not Christian or religious, I dig what Jesus preached and do agree with every word that Father James Martin has to say. We need to show humility, love and compassion for those fleeing the scourge of gangs, extortion, murder, rape and starvation in neighboring and faraway nations. They are our fellow human beings. At the very least they deserve loving kindness and dignity.

difference in an insular world

A sharp girl in the front row asked me how long Calvin's longest seizure was. She and some of her classmates gasped when I told them it lasted for forty-five minutes. I went on to describe how, because the emergency medications meant to stop the seizure hadn't appeared to be working, my husband and I had thought our son might die. Calvin was two years old. As I panned the classroom, what I saw looking back at me were fresh, young faces wrought with deep concern and empathy.

The sixth graders' other questions were varied, thoughtful and many, curious minds a sign of intelligence:

What was Calvin's first word?

Does anyone else in your family have epilepsy?

Will Calvin ever be able to have a job?

Does Calvin have any siblings?

Who helps you take care of Calvin and do you have a job?

How many kinds of seizures are there?

How do you make a seizure stop?

Will Calvin ever grow out of his epilepsy?

How does Calvin communicate?

I had come to talk to the students about disability and difference, and to answer their questions about Calvin and his epilepsy since he can't do so for himself. When I spoke about cannabis, telling the students how the oil I make from the herb has virtually eliminated Calvin's daytime grand mals while also helping him better endure and complete a four-year-long benzodiazepine withdrawal, one student asked me why marijuana is federally illegal.

There was not sufficient time left in the social studies class to go into much detail, so I summarized by saying that marijuana was outlawed a long time ago (in the 1930s) because of greed and racism. Had I time to explore the nuance I'd have mentioned the corrupt government officials who leveraged fear and racism to justify making marijuana illegal. I would have said that cannabis remains illegal because these same forces are still in play.

I wish I'd had time to delve deeper into marijuana's history and tell them the truth about the deceitful, racist head of the Bureau of Narcotics, Harry Anslinger. I wish I'd been able to tell them about the pressure and collusion from DuPont and Hearst who feared hemp as a rival to their plastics and paper. I wish I'd been able to explain how wrong the War on Drugs is, how hard and unjust it has always been for People of Color and their communities, how criminal it is for our government to falsely insist that cannabis is as dangerous as heroin, claiming it possesses no medicinal properties, while simultaneously holding a patent on cannabis for its neuroprotective and anti-inflammatory properties. I wish I could have told them that the worst people in government and the private prison industry are hell bent on locking up folks—particularly minorities—for low-level drug offenses like simple marijuana possession, and keeping the millions wrongfully languishing behind bars from getting out.

Though I was unable to school the students on the history of cannabis, I hope I may have planted a seed in their brains about an amazing medicinal herb that has gotten a bad rap. I hope, too, that I got them thinking about disability and difference. Perhaps I inspired them to go a step beyond tolerance—because tolerance is not good enough—by befriending and embracing those like Calvin and others who may look, act, sound, dress, speak, live, love and worship differently from themselves. I hope I sparked inside them the desire to stick up for the bullied and disenfranchised and to openly and unabashedly condemn the cruel, unjust and hateful whether they be adults or children.

The night before my presentations, Michael and I watched the film Son of Saul. From its first scene I was gripped and unsettled, witnessing a grim cinematic account of the inner workings of Holocaust concentration camps. I'd seen horrific photographs and films taken of the camps when I visited the Holocaust Museum in New York last May. In my twenties, while backpacking solo through Europe for seven months, I'd visited Dachau. And yet, scenes of Jewish men scrubbing the human mess that awashed the gas chamber floor nauseated me. Still, I clenched my teeth and fixed my eyes on the screen, feeling I should bear witness to their suffering, my own discomfort but a whiff of what Holocaust victims and their families endured. Had the sixth graders already studied the Holocaust I would have told them that children like Calvin were some of the first scapegoats to be rounded up and killed by the Nazis because they were deemed a stain on the Aryan race.

Frighteningly, this world is still rife with this kind of hate and savagery, our own nation led by an insecure man who incites fear, denigrates and scapegoats immigrants, dehumanizing them by calling them animals, a man who maligns People of Color, shows contempt for the poor, mocks the disabled, and enacts policies harmful to every kind of human save the straight, White, wealthy few.

For an hour I spoke to each class of sixth graders fielding their thoughtful questions, their faces gazing at photographs of my son on a dry-eraser board. At the end of the second session, a girl with dark braids and features which I took to be a beautiful blend of races, hopped off of her chair and embraced me. She hadn't asked me any questions, but it seemed she grasped my message, which was one of trust, love, worth and understanding of difference in an insular world.

Photo by Michael Kolster

one world

Calvin's epilepsy—the suffering it causes, the challenges it creates, the sorrow it provokes—often gives me pause to consider bigger things, incites me to contemplate life and all of its complexities from different perspectives. Sometimes I peer from the inside looking out, at others I gaze from the outside in.

Today, when lamenting the killing of so many Palestinians who were protesting the opening of the US embassy in Jerusalem—their sacred city for thousands of years along with Christians and Jews—and what that signals, I recall and embrace these wise quotes regarding war and peace on this shared home we call Earth.

Alex Churney, A Milky Way Shadow at Loch Ard Gorge 

How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

Associated Press

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

The world looks marvelous from up here, so peaceful, so wonderful and so fragile. Everybody, all of us down there, not only in Israel, have to keep it clean and good.

—Israeli Air Force Col. Ilan Ramon, 29 January 2003