halloween past and present

On the eve of this Halloween we woke to a nightmare; Calvin had one of his night terror-pain episodes—an hour or so of screaming and writhing in what seems is excruciating pain. Not knowing the source of his misery, I first gave him an acetaminophen suppository. When that didn't work, half an hour later I gave him ten milligrams of Palmetto Harmony CBD cannabis oil rectally. I crawled in bed with him expecting him to continue writhing, but he fell right to sleep, his arms wrapped tightly around my neck.

Twelve years ago, on Calvin's second Halloween ever, he underwent a circumcision, with the hope of stopping the urinary tract infections that had triggered his first two grand mal seizures. We called that one—not endearingly—Halloweenie.

We've spent a couple-few other Halloweens in the hospital enduring 72-hour EEGs, and on others we spent upstairs nursing Calvin after seizures.

It has only been in the past three years that we've taken Calvin door to door trick-or-treating, and even then we only go to five or six nearby houses. Calvin is totally unaware of the holiday, cannot hold a bag, can't unwrap the candies, doesn't anticipate or delight in dressing up. If he is doing well enough, we take him nonetheless, just to feel some semblance of normalcy. We selfishly do it for our own benefit and because we think the neighbors enjoy seeing him.

Tonight, in light rain, we hit three homes around five o'clock; our other neighbors were still at work. Calvin rocked his manwitch (wizard) costume, on which I didn't spend a dime. He fared better, probably, than any trick-or-treat outing yet, though became weary quickly, probably from the nightmare on the eve of Halloween.

click on any image to enlarge.

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

the rest of us

Outside raking, I try to make sense of this effed-up world we're living in. In the cool glow of an overcast afternoon, I work up a sweat turning needles into piles of copper, all the while conscious that wealthy White Christian conservative men (and a smattering of their female counterparts) are brazenly cheating and lying, trying to control, disenfranchise, oppress and legislate the lives of the rest of us.

Who are the rest of us? I'll tell you: women, Black people, Latinos, Native Americans, Muslims, atheists, Jewish people, old folks and the infirm, mentally or physically disabled folks, young folks, students, union members, artists, journalists, teachers, scientists, environmentalists, public employees, poor people, gay, lesbian, bisexual and transgender people, homeless people, former inmates who have done their time and paid their debt to society or should have never been incarcerated in the first place, immigrants, pregnant women, and people who have preexisting conditions like my little boy.

My son Calvin by the way, because of his disability, cannot—nor will he ever be able to—vote; the rest of us must do it for him and for each other, or risk continued disenfranchisement by the powerful few who have nothing to do with the rest of us except to exploit. They have shown us what matters to them, which they will protect at any cost to their constituents and to the earth itself: money, power, control. They have proved incapable of walking in our shoes. Vote them out. Vote now.

glimpses

Before he came into the world, I used to have glimpses of myself with him as a baby at the beach, the two of us plopped on a blue and yellow sunflower blanket, his blond curls caught by the wind. Imagining him older, I'd see us walking silently through a pine forest, looking up through the trees, watching for woodpeckers, hearing the creak and squawk of rubbing branches in the canopy. At some point I thought perhaps we'd fly with him to New York, to France, to Italy.

Now I walk alone with my dog Nellie across a vast field, tears trickling down my cheeks. I call her and she runs to me. Half-heartedly, I play hide-and-seek. She understands and can do so much more than her human brother. I get glimpses, but mostly I feel so little semblance of what I think parenthood must be. My fitful grief gets all balled-up with loss of hope, expectation, ambition, dreams.

It was hard enough knowing much of his brain's white matter was missing. Worry. Then my planned cesarean turned into an emergency. Fear. Then he needed help breathing and eating. Anxiety. Then he failed to thrive and barely develop. Guilt. Then we learned he could hardly see. Despair. It took him years to crawl and walk, and he has spoken just a single word—Mama—once. Misery.

Then he started to seize.

We keep him alive. Keep him fed, keep him warm, dry and clean. Try to control his seizures. Like any parent, we love him immeasurably, but beyond occasional smiles and giggles, there are very few glimpses of normalcy or happiness in our infant-toddler-teen.

In my lowest moments I think of good, productive and exciting lives wasted on years of soiled bibs, dirty diapers, sopping garments, sleepless nights, hopeless futures, monotony. Had our son been born healthy, I consider the freedom we'd be moving into with a child old enough to be alone. I juxtapose that glimpse of liberty with a heavy one of wondering how long my body and spirit can withstand the burden—my child's weight, his restlessness, his seizures, his behaviors, his need. I glimpse that burden in the mirror. I feel his trouble settling inside of me.

of monsters and medicine

Writing would be so much easier if not for my son—my non-verbal, incontinent, legally blind, autistic, disabled, seizure-prone, drugged-up child who, as I've written before, sometimes reminds me of a mini Frankenstein's monster. Come to think of it, everything would be easier—sleeping, waking, eating, traveling. I'm up at least a handful of times every night to check on and reposition my boy. I often wake to the nightmare of his grand mal and partial complex seizures. I can never sleep in past 6:30 since he must get his antiepileptic drugs first thing in the morning, and he's really a two-person child. Since Calvin goes to bed early and often eats different food than we do, we never eat together as a family except on Thanksgiving. And because Calvin is prone to get or fall out of bed and hurt himself, and therefore sleeps in a safety bed, we haven't figured out how to travel with him, plus we can't legally take him on a plane because of the cannabis oil used to treat his epilepsy.

Going back to writing, today I got my third rejection from The Sun magazine for a piece I submitted years ago titled Of Monsters and Medicine, about me and grief, Dad and his cancer, Mom and her Alzheimer's, Calvin and his epilepsy, and cannabis as medicine for all. Four years ago I was ecstatic when the magazine published my first piece in print, Faith of My Father, which appeared in the August 14th issue next to an excerpt from a book written by Gary Snyder.

Earlier this month, The Sun's managing editor assured me she'd soon have an answer as to whether they'd accept my Monster piece for publication, which I had written in response to their request for writing on caregiving, medicine and alternative therapies. I thought my prose would be a good fit. I guess I was wrong.

The rejection hit me harder than expected, probably because I am so goddamn sleep deprived and since Calvin has had such a sucky month seizure-wise. He's had five grand mals (his fifth one this morning) and at least nine partial complex seizures so far, for a total of fourteen in just seventeen days—nearly twice the number he had in all but one month since June—and we still have two weeks to go till the end of the month.

As I write this, my brain is in analyze mode, trying to figure out what the hell to do with Calvin's Palmetto Harmony CBD cannabis oil dose. I think my mind and my gut are telling me to increase the dose (since decreasing it seemed to yield more seizures, and since I decreased his THCA several weeks ago, and since he has gained a little bit of weight, enough to outgrow his Keppra dose which I don't want to increase, and since it seems with the administration of more CBD his seizure clusters usually stop.

What's so difficult is that the range of CBD dosing is so vast—anywhere from a dozen or so up to several-hundred milligrams per day of whole-plant oils, to as many as six- to thirteen-hundred milligrams for kids taking Epidiolex, the non-synthetic pharmaceutical version. But I must remember that Calvin has always seemed to need higher doses than most kids his age and size for any drug to be somewhat effective.

And as I sit here looking out over my garden I'm reminded that, if not for my little monster Calvin—even though he makes everything under the sun uber difficult—I may not have begun writing at all.

on forgiving

I was awakened six times by my restless child until the grand mal finally took hold. From three-thirty on I got no sleep at all, next to me my boy waking every several minutes pressing his eyes, his heart pounding. It seems the Palmetto Harmony CBD oil I gave him after the fit may have thwarted subsequent ones. If nothing else, at least the cannabis appears forgiving, its side effects mild if not often positive compared with other antiepileptic drugs known for their mind-numbing, body-clobbering impact.

Resting next to him, I mused on the word, forgive, and its derivatives. To ask for forgiveness requires courage and humility in admitting our transgressions. To be forgiving is to offer understanding, while allowing space for mistakes made, and perhaps recognizing and admitting our own. Forgiveness might just save us from ourselves and others, assuming it is asked sincerely and given with grace and mercy, rather than with spite and reproach.

Calvin is no doubt the most forgiving soul I know. I take lessons from him, try to emulate the stamina of his kindness, his eternal forgiveness in the face of my anger and frustration. Unconditionally, he forgives my every flaw with or without my asking. He is inspirational. My muse. My hero. He allows me to forgive even myself.

Photo by Michael Kolster

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