keep on truckin' (toward justice)

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

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

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

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

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

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

aches and pains

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

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

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

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

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

unforgiving

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

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

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

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.

one of those days

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

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

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

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

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

mixed bag

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

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

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

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

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

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