holding onto hope

i'm holding onto hope ...

hope that calvin can continue his seizure-free days past thirty-six. hope that somehow we can get him—once and for all—off of the bloody keppra. hope that his body will one day settle into something approaching calm. hope that he isn't feeling pain, hope that he stays well. hope that eventually, within our lifetimes, someone will find a cure. hope that at some point i don't ever again have to watch him seize.

i'm holding onto hope ...

hope that i can continue to run on the trails and roads, to feel its freedom, the sun on my face, the wind through my hair and the sound of it through the treetops. hope that i stay healthy and fit for many more years. that i remain young at heart (though that isn't really a worry.) that i remain injury free. that i can keep taking care of calvin, at least for the time being.

i'm holding onto hope ...

hope that calvin's school goes forward to be a safe and welcoming place where his typical peers continue to gain insights from his presence and energy. hope that more people in this world and nation begin to value difference and diversity. hope that young people keep learning the truth about this nation's full and true history. hope that everyone can get a bit away from their gadgets and, instead, get back to communing with nature.

i'm holding onto hope ...

hope that women won't lose the legal right to be equal citizens in this nation. that people can agree that healthcare is a goddamn human right for everyone. hope that the separation of church and state holds (at least to the extent it does.) that more and more people vote, and are not burdened by difficulties or dangers accessing the polls. that the election is free and fair. that people honor the outcome. that people stop believing the lies they are being told about a so-called stolen election. that extremists and liars lose. that violence doesn't rise up, but if it does, that it is quickly quelled. that democracy holds.

i'm holding onto hope ...

that one day leaders, and others, of this beautiful world will put aside their egos, their fetishes, their power lust, their deceit, their bombs, their guns, their crowns and swords.

movements

The sun is on my face, the wind feels and smells as if I were at the beach. The pines are whispering. Through them, I hear the lonely drone of a small airplane. Despite the twinge in my back and hip, plus a tinge of melancholia, it feels good to be moving.

This morning, Calvin was not his best self. His recent conscious-onset morning seizures have put me on edge. They are typically rare, and lately have seemed to come out of nowhere. I'm afraid to send him to school lest one happens on the bus, in the hallways or classroom. Despite seeing hundreds of them over the years, they're hard to take, and I can only imagine how they make him feel.

As I stroll down a sloping road, moving from one side of the black tarmac to the other while noting the big sky above me and amber fields spanning out from my flanks, I sink into my sadness and angst. I ponder their roots, which have taken ahold and perhaps manifested in my stiff, achy parts. I assume it's simply the weight of the world: the damn protracted pandemic restricting our movements and gatherings; the war waged against Ukraine and elsewhere on this small, precious planet; the terrorism and suffering of so many innocent beings; too many deceitful, badgering, insincere, criminal leaders.

Then, I think about Calvin's burdens: his inability to effectively communicate; his incontinence; his poor vision and coordination; his seizures; the drug side effects he suffers. He's confined to his own little messed-up world in which his movements are greatly hindered.

And yet, my poor boy can't sit still. He's on and off our lap almost in the same moment. He often paces without purpose. He sits at the table for mere minutes, taking a few bites of food before being compelled by something to get up and move. I know what possesses and troubles him: impending seizures and, perhaps mostly, epilepsy drugs and the lingering effects of their withdrawal.

One of Calvin's worst afflictions is a drug-induced movement disorder called akathisia, which, like most drug side effects, I have researched and diagnosed myself:

akathisia: akəˈTHiZHə, -ˈTHizēə | noun | A state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant drugs.

and:

A movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.]

For the longest time, I was convinced Calvin's restlessness was just from years of taking benzodiazepines. More recently, however, I think it could also be from one of his current antiepileptic drugs, Keppra, aka leviteracetam, which he's been taking for over ten years. I fear the (brain) damage from both drugs might be permanent.

I read the literature. It's all there, documented on multiple reputable websites (my go-to is rxlist.com): Keppra can cause drug-induced movement disorders. Calvin's akathisia manifests mostly in his restlessness and repetitive, aimless pacing, but I wonder if it's also displayed by his jaw-jutting, teeth-grinding, hyperventilating, knee-knocking, frantic fingers (pill rolling), and what I call crab-clawing. I believe the akathisia is why he likes riding in the car and spinning in his jumper so much; they allow him to move without expending much energy. 

Drug-induced akathesia is a miserable affliction which causes some sufferers to feel so achingly restless, frantic and panicky that they take their own lives in desperation. I can't begin to understand what a child like Calvin—who doesn't grasp abstractions such as the notions of tomorrow, life and death—must be thinking or feeling when he is most afflicted, which is pretty much whenever he's awake. I've seen him in states of panic, pain, serious discomfort, distress, malaise and misery, which are often impossible for me to alleviate (thankfully, though, extra doses of my homemade THCA cannabis oil seems to help.)

As I approach the final stretch of my walk, the sky is blue and painted with clouds. The sun is beating down. The wind is still sifting through my hair. The road is flat and smooth, and my bit of melancholia still lingers, though has lessened. I think about how amazing it would be if Calvin could walk these back roads with me without faltering or balking. Maybe the fresh air and quiet could somehow relieve some of his own troubles. Perhaps there's a chance one day my wish could come true. I'll keep embracing hope. Sometimes it's the only thing to hold onto.

Photo by Michael Kolster

anatomy of a pandemic

A year ago, I was home alone with Calvin for two-and-a-half weeks while my husband was in Paris taking photographs for a soon-to-be-published book of the city's parks. He was staying at his friends' apartment in the heart of the city while they were vacationing in Venice prior to joining him. Covid deaths in northern Italy were rising rapidly, though still in the hundreds if I remember correctly, and the fear of a global pandemic was becoming palpable. I imagined, with dread, Michael taking the Metro, crammed into cars with scores of other riders and lots of shared surfaces. I feared that his friends, Jonathan and Francoise, would return from Venice unwittingly carrying the virus with them, then pass it on to Michael who would bring it home to me and Calvin. I pleaded with him to get on a plane and come home early, but he was unable to find a flight. 

Michael's friends did not return to their Paris apartment until the day after Michael flew home. Though they never said as much, Michael guessed they purposefully avoided him so as not to risk putting our family, especially Calvin, in harm's way in case they were asymptomatic. Michael arrived home three days before the coronavirus was declared a pandemic. The last time we had any friends in our home was a Friday night exactly one year ago, March 13th. I stopped going grocery shopping and, as infection rates rose, I avoided the dentist and doctor. To put it simply, we have gone nowhere.

In recounting the events since then, it's hard for me to resist the urge to see it as a year of losses. Calvin has lost a year of attending school, seeing his teacher, aides and peers, and them seeing him. He's missed a year of going grocery shopping with me every day or two and lingering at his favorite spot: the meat case. He's lost a year of Saturdays and Sundays visiting our favorite bustling corner cafe. We lost a summer of lazy wanderings at agricultural fairs—one of the few enjoyable activities we can do with Calvin—taking in the sights, sounds and smells of farm animals, fresh hay, cotton candy and popcorn. Michael has lost nearly a year of communing in person with his college students. He has missed teaching them how to expose black and white film and how to make prints in a darkroom. He has missed the dynamism of in-person conversations with them about how to see and approach the world with greater clarity, curiosity, humility and gratitude. We missed our tradition of having both classes of students over for dinner at the end of the semester. He missed attending an artist residency in Wyoming. I've missed meeting and befriending his students, which I lament deeply. I've lost a year of relative freedom to roam where I want, belly up to the bar with friends, go on dates with my husband, see movies in theaters, walk on the beach, host dinner parties, or visit New York and the West Coast. I know I am not alone.

Despite these losses, I'm grateful for all we have, and I'm particularly cognizant of those fortunes at a time when so many Americans are needlessly suffering (it didn't have to get this bad.) My husband's job makes it possible for me to stay home with Calvin full-time. We eat well, enjoy our creature comforts, are surrounded and supported by an amazing network of friends, have health insurance, and are well. We don't have to worry about where our next mortgage payment is going to come from or if we'll be evicted. We don't fret about how we'll afford to heat the house, feed our family, pay our healthcare bills. We don't lie awake at night wondering if or when we might find work again. We don't angst about contracting the virus since Michael is able to work remotely and we have the space to stay safely distant from others.

And yet, I cannot shake the feeling that this pandemic year has been one of loss. I also wonder what Calvin makes of his year in isolation; he has seen virtually no one besides me, Michael and Smellie for months on end, and has spent the entire winter indoors. If the huge smile on his face which appeared when we finally ventured into a thawed-out garden is any indication, I wager he has felt loss and deprivation on some level, if only viscerally.

As much as the last year has felt like one of loss, however, it has also been one of gifts. Like no other time in my memory, this isolation has prompted the distillation of thoughts, scenes and people into their essences. In effect, the pandemic has moved me: to further regard and appreciate the quality of light in a certain room or month or scene or time of day; to contemplate light years and the sheer distance of a star; to marvel at a stink bug's travel in the days before her death; to consider and bask in the simple existence of four beings in one household; to notice the daily nuance in spectacular and mundane landscapes; to see better the smile in people's eyes; to study and note the incremental changes in a self, a husband, a child; to see the maskless faces of strangers become familiar, even beloved; to feel the subtle play between anguish and hope; to understand and witness the many worlds reflected in pools and eyes as mirrors and windows.

I've also come to understand what I am physically and emotionally capable of doing: being my developmentally disabled, nonverbal, legally blind, incontinent, autistic, seizure-racked son's sole daytime companion and keeper for an entire year during a pandemic. Though laden with more than its share of angst, sorrow and frustration, and as strange as it might sound even to myself, I consider this prolonged and uninterrupted time with him a gift.

Bois de Boulogne, by Michael Kolster

necessary cleansing

the change of seasons makes me feel more deeply—sometimes hopeful, at others anxious, melancholy. damp winds chill me to the bone. sudden downpours thrill me. popping embers keep my feet from going numb. i muse on shadows from a setting sun. i look around—at the garden, at the sky between the clasp of trees—and wonder if this will be my final home.

amid the raging western wildfires, skies glow orange, red and ocher. miles away, eyes weep, bloodshot, weary and sore. here in maine, the drought withers leaves and limbs, imperils thriving. i scratch a branch's bark with my thumbnail. it's green underneath. there's hope for recovery.

lying next to calvin, i wonder why he seized so closely to the last one. i feel his heartbeat; it's twice as fast as mine. perhaps the low atmospheric pressure is what triggered it. maybe, like birds before an earthquake, he feels a world in upheaval—rampant pandemic, hundreds of thousands dead, millions without work, poverty, misery, dread, injustice, despair, unrest.

 

at dawn, after months with little rain, the skies open up five minutes after calvin seized. its sound is at first a mystery. a passing truck? gale force winds? a school of morning skateboarders sailing down the street? time reveals the deluge on a red metal roof, the patter of drops in a newly-formed pool. a necessary cleansing of filth from the air. our nation needs a quenching, too.

forget-me-nots and cardinals

Crouching, I toss mulch across the beds in swaths of brownish-red. I take care not to cover the baby growth, like seedlings, of what will next year be clouds of tiny blue and white and pink flowers. Twenty-plus years ago, Mom and I scattered my dad's ashes north of San Francisco, the city in which he was born, in a glen shaded by moss-covered trees and a creek running through the hollow, its banks massed with the same flowers. I asked my mom what kind of flowers they were. She told me they were forget-me-nots.

A few weeks ago, I spotted a couple of forget-me-nots sprouting in my neighbor Woody's yard aside his house in the soft earth near where a few years ago I had planted a couple of azaleas for him. He and my dad were similar in some ways—cleaning engines, mowing lawns, keeping things in order.

As I pulled my garden cart beside the burning bush, peering into its center I met the eye of a female cardinal, her orange beak glowing like an ember amongst a forest of green. There she sat as she did this morning and the evening before and the morning before that, her tail a stiff orange pencil poised on the edge of her nest. I saw myself in her, sitting and watching the world go by from her solitary perch. Going nowhere. Intent on her commitment. Captive. Waiting for something—anything—to disrupt or threaten the object of her vigil.

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.

wanderings

Nowhere to go. Nothing to do. No one to see. Awake at night fretting. Has the moon always shone through that singular window, or have the trees thinned as they've gotten older?

Days drag. Monotony seats itself and stays. In the meantime, patience wanes. Adult becomes child. Child becomes fiend. Words hurt, even as they come forth from the throat and pass the lips, and like the sharp slap of a hand, they sting. Infinity is marching in circles. While time expands, space compresses. Still, there's too little room for minds and feet to wander aimlessly or with purpose.

As if overnight, bodies weather. That shock of grey, that spray of flecks, that crepey skin. What matters? Things feel so unchanged, and yet alien. Is happiness so fleeting, despair something to cling to like wrapping arms around a tree when bodies are off limits? Which bark serves us—smooth, so that we don't feel too much, or rugged, to remind us we are not alone in bearing scars and hardships?

Mouths hunger even when the gut doesn't. Food—or its refusal—is a steadfast companion for stress and worry. At times there's no filling that inner pit. At others, emptiness and abstinence quench.

A face unseen for mere days looks akin to one that's been missing for ages. Under a cap, mask at her chin, is she familiar or somehow foreign? And who is inside this body? Someone new? Or the same ole tired one, perhaps emerging from a long facade of optimism. Are we coming undone, or being remade?

How many days has this shirt been worn, this exact path been trod, these same backroads been traveled along? Wear the garment inside out and it's altogether different—raw-edged as if neglected, or perhaps well loved. Meander the path and roads in the opposite direction and stumble upon an unseen landscape. So many missed vistas to discover.

Forgiveness. For ourselves. For others. It is possible, even easy, like bending a sapling nearly in half without a break or splinter. Inside, we're that tender. If anything, the sheath may give way, revealing a heart rarely seen, like a moon held between branches, or a wooded path roamed in the opposite direction.

Photo by Michael Kolster

looking glass

Emerging from the foreground is a blue-and-white-striped duvet folded neatly and laid upon an ivory coverlet. On the other side of the glass, to the left, sits my eighty-seven-year-old buddy, Woody. The reflection of the outside world is too vivid to see him reclined in the shadows, but he's there. Behind my figure is the house in which Mike lives, my ninety-seven-year-old widower-friend whom I haven't seen in several days and whose voicemail is full when I call.

It's nearly five o'clock. Michael just got home after a day of printing the photographs he took while in Paris, Hawaii and Lisbon Falls, Maine, which is just up the river a spell. It feels weird that travel isn't really possible or advisable now. Smellie is somewhere in Woody's yard, her leash trailing behind her as she trees squirrels.

The way we connect in this crazy coronavirus time is strange—by phone, by FaceTime, through bandana masks, from across the street, and from the opposite sides of storm windows.

Before I literally look in on Woody, I ask him, in the manner of my late father, if he is decent. He chuckles. I walk around the back of his house to his den. Though I can barely see him through the glare, we joke on the phone about how strange it might look to the neighbors to see a woman peering into his home through a side window. I told him that for me to do so seems completely normal. Through the glass, we tease and laugh. I wish I could hug him like I used to. Maybe in warmer weather we'll again be sitting on his front porch together sipping bourbon and ginger ale, watching passersby, discussing birds and neighbors and politics, even if from a safe distance. I hope so.

Later, Michael and I speak with our buddies on FaceTime, first Jim, then Matty. Jim makes me laugh until I nearly wet my pants. Clever little devil, and with a face as earnest as any young fellow. He told us so. I wish Jim and San Francisco weren't three-thousand miles away from us. And I miss Matty's frequent visits, along with dozens of others. Because of the coronavirus, everything is so beyond what we've come to understand as normal.

I've been making an effort to see one or two loved ones' faces and or hear their voices on the phone every day or so. For me, these quarantine times require it in order to get through without too much despair seeping into the long hours. The news cycle and state of things and The Unhinged One are crazy, fascinating and outlandish, like looking at an image and not really knowing or understanding what you're seeing and what might be hidden in the shadows. And yet, the rest of the world and its people are so beautiful.

musings

a stink bug perches on the bristles of my toothbrush. i know more about ventilators than i should. this morning's coffee tastes luxuriously of earth. as i run through the forest, pileated woodpeckers hammer and cackle from above. nearly every surface in this house is covered in dust. some things never give up. i've got an ache in the ball of my foot. on the underside of smellie's ear there's a mat that feels exactly like felt. it's astounding what some people call leadership. one tablespoon of butter has as much saturated fat as half a cup of vanilla ice cream or a large bag of potato chips. the campus is silent. students' bicycles rest on flat tires. matching cuts on my middle fingers throb, but only when i focus on them. the full moon works its gravity on seizures. charlotte, a little girl a lot like calvin whom i never met but loved just died from probable complications of the coronavirus. her mother was my mentor and is my hero. the morning sun shines in sideways, its light refracting through glass like opals or rain or the way trees blur through windows of a speeding car. my wedding ring clinks like a wind chime against my mug. steel cut oats get stuck in my teeth. the chair i write from groans and squeaks. pride gets in the way of apology. i imagine the hand that painted each brushstroke of face and landscape. reflections are everywhere and everything.

Photo by Michael Kolster

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

strange world

It's a strange world when ice rinks are made into ad hoc morgues, when conference centers become makeshift hospitals. Strange to see movies depicting throngs of bodies packed together. Already, that seems so ancient and alien. Strange to feel alone in a place where so many good friends live within minutes. Strange to lie in bed and wonder if the virus will spare my kid.

These past few days I wonder if Calvin may be feeling the strangeness, the heavy-chested, desperate anxiety of it all. He's not going to school. His nurses aren't coming to work. Life is off-kilter. Maybe his craziness is "just" that a seizure is coming. But Jeezus, he's been off his rocker the past few days. 

A friend from my years in San Francisco wrote to me:

I just wanted to touch base with you, as I am growing a bit concerned. It may be my imagination, but my sense from your posts is that you are feeling increasingly desperate, depressed and isolated.

I wish I could be there to give you a hug—and a much deserved break.

I’m here if you want to talk :)

I wrote back telling her that she'd been sweet and not wrong, that I'd had a bad day yesterday but that today is better what with the sidewalks clear and the snow mostly melted. I said that it does feel more isolating to have lost the ability to do the few precious things we were able to do with Calvin. I added that our lives have not changed much compared with most people's, and that maybe our experiences are more similar now.

It's a strange world to know all your favorite cities and people are on lockdown. Strange to speak on the phone with a loved one in hospice while looking at him through his kitchen window. To avoid people on the sidewalk. To no longer gather with friends over dinner. To not want others to pet Smellie, to put her on the leash when someone is coming. To wonder who in our circle of friends might succumb to the virus.

It's a strange world when one mother's child or sibling or parent is worth more than another. Strange that the wallets of oligarchs seem to take precedence over the ability for some to put food on the table. Strange and lamentable that, in a pandemic, so-called leaders don't hold themselves accountable for past mistakes, for present missteps and neglect. Strange when others don't see through the charade. Strange when wars are fought in the name of gods. Strange when pious people worship the shockingly ungodly.

The hospital set up at a pavilion in Ifema, Spain convention and exhibition centre in Madrid. Photo: AFP

indifferent nature

I'm not one for praying, nor am I looking for answers as to why the world exists. I don't need evidence that there is life, intelligent or otherwise, on other planets. If I look to statistics and consider the magnitude of the universe, I already know the answer, which is yes. Though I lament life's miseries, I don't wonder why there is suffering in the world. Mankind can be cruel. Nature is indifferent. I only wonder, when reckless and despotic leaders war, oppress, starve and shell civilians, why others allow them to continue. But I guess I know the answer to that, too: power, money, conceit, control. I wonder why mutli-millionaires and billionaires aren't more charitable with the absurd profits they make on the backs of those who actually do the labor. Instead, they pocket those profits and too often pay starvation wages. These are the things I think about on days like this.

Last night at nine, Calvin had his third grand mal seizure in less than twenty-four hours. To stop the cluster I gave him Diastat—rectal Valium. It was the first time I had used it in months if not years. It has seemed to stop the seizures from advancing, but the real test will be whether he has more tonight. I don't know if Calvin is ill or if he is simply outgrowing his medication, or whether this worsening of clusters is an effect of eliminating his CBD oil recently. Like world torments, I don't question why my son suffers, at least not philosophically. As I said, nature is indifferent. But I would like to know the root of his weekly seizures, and I'll continue to search for ways to beat them into submission.

My thought this morning was to more seriously consider giving him the plant-based pharmaceutical CBD called Epidiolex. I've been following a Facebook page about the drug for months, noting its trends and side effects. It may be a last hope for Calvin considering he has failed ten anti-epileptic drugs. If we do decide to move forward with it, I'll likely put him on a fraction of the recommended starting dose. What I've noticed about CBD is that sometimes giving less is more effective and, like all drugs, too much can cause unwanted side effects including increased seizures.

Today my boy has been waking only for moments throughout the day, recovering from the assaults on his brain, and sleeping off the benzodiazepine. Though he is in a decent mood and seemingly content, I feel sorry for him. I've watched him seize thousands of times in his life. He sometimes turns gray-blue, bites his tongue and cheek till they bleed, may sometimes have vicious migraines and often appears woefully unsettled. Watching him suffer is punishing for me. Some folks believe that God punishes people who've sinned by doing things like "taking" their newborn babies, or rendering their children with afflictions, or causing natural disasters in liberal states, or allowing mass shootings in gay nightclubs. That is such bunk. The notion is so offensive, and I wonder how anyone could or would want to believe in a god that would behave that way.

Today, Calvin's buddy Mary came to watch him for a couple of hours in Michael's absence, so I was able to get outside with Smellie. The warmth of the sun offered respite amid a bitter thirty degrees. Some of the snow is melted and buds are beginning to swell on certain trees. I baked some chewy-crispy chocolate chip cookies for my friend who is now receiving Hospice care, though doing pretty well considering. In the garden, the greens of the Alberta spruce and the reds and purples of the small-leaf rhododendrons are gems right now. I wonder if we'll have an early spring. I'm hoping so. But you won't find me praying for it, because nature is indifferent. That's just the way She rolls.

double whammy

Blame last night's double whammy on the arc of the full moon. Blame it on a low-grade fever or virus. Blame it on sleep deprivation or anxiety, the barometric pressure or gravity. Blame it on a lack of fluids, a dip in blood sugar, pressure or O2. Blame it on the protracted effects of benzodiazepines which should have never been prescribed for my three-year-old. Blame it on the weight of the world, the scourge of hateful rhetoric, the insanity of deceit and greed, the power of willful ignorance, the threat of war. Blame it on injustice. Blame it on the patriarchy. Blame it on the pharmaceutical industry. Blame it on the superficial solace of the stock market. Blame it on yesterday's regrettable IEP. Blame it on the vacuum of Daddy's absence. Blame it on the warm front coming, and being trapped indoors. Blame it on his brain's messed-up pathways. Blame it on growth spurts and raging hormones. Blame it on the vile nature of epilepsy. Blame last night's two grand mals on anything and everything.

Calvin's grand mal seizure from eight years ago; some things regrettably never change.

             

weight of the world

Saturday night, I listened to my son wail until he was nearly hoarse. I watched him writhe in some unknown pain. The event, whether cramps, hallucinations, night terrors, or most likely migraine, went on for five hours. None of the measures I attempted—acetaminophen, ibuprofen, THCA oil, CBD—helped to quell his misery.

Downstairs, our dinner guests kept me sane with their loving support through a difficult situation. Hell, we even had some laughs in-between sips of wine, bites of Michael's melt-in-your-mouth porchetta, mashers, green beans, and hearing Calvin shriek. It didn't help for me to remain upstairs with my boy; he's getting big, so someone's liable get hurt if I were to crawl into bed with him, though I did make one failed attempt. Luckily, he's safe in his padded, paneled, netted-canopy bed, able to flop around into positions most comfortable for him. At one point, during my frequent checks on him, he had drifted off briefly while sitting up.

Calvin finally fell asleep close to eleven. Regrettably, three hours later he had a grand mal followed by another one at six a.m. I can't remember the last time he had three serious events in less than twelve hours. He had been doing pretty well lately.

As I laid next to Calvin in the wake of his first seizure, I wondered if perhaps he feels viscerally the weight of the world, causing him anguish or triggering seizures. I thought of the damage our reckless president is doing to the already volatile Middle East. I feared for the animals and people in peril from Australia's rampant wildfires. I worried over a friend who is suffering from late-stage cancer and the side effect from its heinous treatments. I fretted over recent hard conversations with a dear friend regarding prejudice, judgment, the virtues of political correctness, and the hurt felt by both of us. I wondered if Calvin could feel me.

Then, after spending too much time brooding in bed next to my son, I remembered a girl I had met at the grocer earlier in the day. A thin, blond, sweet seventh grader, she had smiled shyly and waved, saying, "Hi Calvin," as we passed her in front of the cold cut case. Holding onto Calvin's hand, I stopped to return her greeting, introducing myself to her father. She explained having met Calvin last year while visiting his junior high school's Life Skills class where she made friends with another student very much like our boy. It dawned on me who she was and that, a few weeks earlier, I had met her mother and another woman who had come to our door sharing info about Jehovah's Witnesses. At first, I'd been a bit sharp with them; because of Calvin, I'm prone to growl whenever anyone tells me that "everything happens for a reason."

"I am not worthy of my son's suffering," I declared to the proselytizers, my heart pounding with contempt for any suggestion that Calvin's misery is some divine plan, a notion which to me seems no less than sadistic. I went on to explain my disdain for organized religion, my disbelief of a merciful or judgmental, anthropomorphized god, stressing my conviction that the Bible is metaphor written by men to explain the unexplainable and to further their power and control over others.

The Jehovah's Witnesses had been kind and forgiving, respectful of my beliefs. I went on to let them in and led them upstairs to meet Calvin, who was in bed resting. There, we exchanged ideas about god, the afterlife, and hell on Earth. Some of our beliefs seemed to overlap. They were loving to Calvin and most sympathetic to our burden. It was a short visit, and as they were leaving I gave them both hugs, plus my card, which has a photo of me and Calvin printed on one side and my blog and email addresses on the other. Two days later, one of them wrote to me, explaining the discovery that her daughter knew Calvin.

Back at the grocer, I said farewell to the girl. I thanked her for being so kind to Calvin and for making and keeping friends with his former classmate, who is non-verbal, developmentally delayed and seizure-prone, just like Calvin.

"You're going to save the world," I told the girl, firmly believing in my assertion that this gentle creature standing before me in boots and a little overcoat, this old soul with wavy blond locks swept back into a bundle, doesn't have a mean bone in her body and loves everyone, just like Calvin.

Lying next to Calvin that night after his miserable pain episode and first of two seizures, and holding the images in my mind of the girl's rosy face and that of her mother's, I drifted off to sleep with the weight of the world—Calvin—in my embrace.

Years ago, photo by Michael Kolster

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

the terror of decent people

The wind through the trees speaks to me, each leaf part of a collective voice, each a palm, each a map of sorts to a larger world. These living beings know what to do, know what freedom means. Seeds travel on breezes and in the mouths and bellies of birds. Trees put roots down in fertile soil. Geese and butterflies migrate legions of miles. Seas intermingle. Grasses cross natural, manufactured and imagined divides. Rivers breach levies. Clouds rain down quenching all creatures. Nature knows no boundaries. Why should we?

After Calvin's unexpected grand mal at dinner time Saturday night, after we wiped a stream of blood running down out of his mouth, I sat on a stool next to his bed and watched him breathe. I pondering the state of the nation we're in, where blood is shed in massacres which are happening with increasing frequency. Studying my boy's maturing face, I recalled what Frank Borman, Apollo 8 astronaut, said when feasting his eyes on blue Mother Earth from space:

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

And then, while bitterly lamenting racist despots and White supremacists and the atrocities they commit, I reflected on what the seventeenth-century Dutch physicist, mathematician and astronomer said:

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

And yet, on this small spot of glorious planet we share with nature and the rest of humanity, we have an epidemic of Right Wing, White Supremacist terrorism. It's motivated by the erroneous, bigoted and dangerous notion that ours is a White, Christian nation, and inspired by a reckless president bent on maligning People of Color meant  to rile up his base, pitching one struggling human against another while he tweets indignities from his gilded toilet seat.

I think of how these hateful people speak of and treat others who are their mirror image, save what's in their hearts and the pigment in their skin. I hear and read deplorable rhetoric about refugees spewing from fanatical mouths, words like "alien," "animal," "thug," "infestation"—no way to describe decent, loving, striving human beings. Where has our collective humanity gone? It is being poisoned by a fearmonging "leader," a tyrant, liar and thief who preys upon the ignorance and anxiety of people who feel they need someone else to blame.

How foolish to believe that anyone on this hunk of land, one which was stolen from its natives in a heinous genocide, can somehow feel entitled to decide who has the right to call it home.

Yesterday, I watched a video of a Black American with long dreadlocks being harassed by a White police officer in the front yard of his own home. It was a case of mistaken identity. Watching and listening, I heard the anger in the man's voice and the fear in his wife's. History has proven that any false move by the Black man could've resulted in the cop gunning him down. I've seen so many of these kinds of videos I've lost count—White cops shooting decent Black people. White cops and civilians harassing Black men in cars. Black men on sidewalks. Black men picking up garbage outside of their apartment building. Black boys playing in parks. Black men, women and children going to church, having a bbq, entering their own homes, walking across their college campus, sleeping in their dorm’s common room, waiting for a subway, mowing their lawn, entering their apartment building, going home from a pool party, driving to work, crossing a street, waiting for a friend in a Starbuck’s, shopping at Walmart, walking home.

And if you haven't read or seen James Baldwin's, If Beale Street Could Talk, you should; in its words and scenes, you will feel the terror of decent Back people.

These White Nationalist racists have launched an assault on the rest of America, on decent people's freedom to move and to safely exist in our personal and public spaces. They are driven by the fear of being replaced by people who've born the brunt of centuries of White state-sanctioned slavery, family separation, rape, forced labor, harassment, racial profiling, police violence, arrest, incarceration, exploitation, discrimination, marginalization, segregation, disenfranchisement, and demonization.

But as sure as the trees speak to me through the whisper of wind, as sure as the tides flow and recede, the world is evolving, its natural and imagined borders forever changing. Its people put down roots where the ground is most forgiving. We cross divides in search of liberty. We intermingle like the seas. We suffer and triumph and love and bleed the same. Each of us is a leaf on the same tree. We have room enough to shelter one another, and to let each other breathe.

Carolyn Cole / Los Angeles Times

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

tempests

Like the tempestuous sky, with its swathes and pockets of cinder white and its rolling thunderheads, my son's good and bad behaviors waxed and waned. I've often wondered if the atmospheric pressure affects his fragile brain and ventricles, bringing on epilepsy's electric storms; I'd seen one coming for days—his shrieking and spaciness, and the violent swings in-between.

As Michael and I relaxed in our screen porch after having dined there, and while listening intently to an unusually raucous choir of birds, I heard our son's own shrill cry. I raced across the yard and bounded upstairs to find the sickeningly familiar sight of him seizing. His fits are unearthly, muscles twitching at lightening-quick speeds, eyes wide open though unable to see, mouth agape in a dreadful, torturous expression.

When it was over, and like too many times before, Michael tipped Calvin's chin up to wipe drool from his cheek, and a ribbon of scarlet blood streamed out. My poor sweet boy whimpered, as I imagined the world in his mind was spinning. I got in bed with him and held him, twilight still lingering at nine o'clock. As I laid there feeling his breathing, which sometimes wavered, I thought about our friend-brother-son who took his life last August; he comes to mind often—his pillow case, his tea pot, his voice, his being. I wondered if the physical world itself—nature—as much as the personal, political and social ones, sometimes crushed him, its sharp-contrast, sunlit days blindingly harsh, its tempests and leaden skies pressing down.

I laid there next to my own son wondering when nature might take him. In a cloud? In the wind? In a storm?

on sovereignty

the breakthrough from gray skies to blue doesn't always bring me pleasure. sometimes the shadows cast by an unfettered sun are far too hard-edged for me. i must squint and scowl, avert my gaze. glowing colors which are saturated on dewy mornings appear washed-out and tired at midday, as if an antique snapshot made them that way.

on days like this the events of the world, the nation, feel crushing: weak and deceitful leaders, starving, neglected children, abused and oppressed women, desperate, fearful migrants, mass shootings, suicides, overdoses, executions. i overheard the grocer's cashier say, "she had on a dress she had no business wearing." her words stung as if they were meant for me. i wanted to say something like, people can wear whatever the fuck they want, or, as my dad used to say jokingly, what's it to ya, cabbagehead?

weariness and worry weave themselves into my body and brain. i know it's the consequence of stress and sleep deprivation. almost nightly, i catch myself clenching my jaw or grinding my teeth. perhaps it's loneliness i feel in my bones, strolling around in the garden somewhat aimlessly. what am i searching for? i bend, crouch and stretch, snapping errant twigs, clipping others, forcing growth into otherwise gangly, rambling, branches. i thirst for this control of nature; i have none when it comes to my boy and the seizures he suffers so endlessly. i wish so much for freedom from this malady.

recent talk of a merciful god bugs me. i recall a friend thanking god for protecting her non-verbal, disabled child from nearly choking on a chunk of celery that had been lodged in the back of her mouth for hours. why hadn't god simply protected the girl from gagging on the celery in the first place? why hadn't god saved the child from suffering scores of seizures that rack her brain? no doubt countless pleas have been made to god—concerning war, famine, disease, blight, disaster, injustice. they go unanswered regularly. though the existence of a certain kind of sovereign universal force (Nature?) seems reasonable, it's the belief in a merciful god—and one who condemns and punishes—in this messed-up world that is so astonishing to me.

in gazing through the shrubs and trees, I consider calvin, my little guinea pig, who is surviving on one pharmaceutical drug and two cannabis oils for his epilepsy. one oil i make, the other i send for in the mail. every good month is flanked by awful ones. his seizures are reliable and often come in clusters, of late, at the very least weekly. i hear of others afflicted with this disease, some too poor to afford their therapies.

folks go on about their freedoms while being hamstrung by healthcare premiums, copays, costs and deductibles so excessive they risk bankruptcy. some must choose between food and insulin. greedy corporate bastards and their political pawns feed on people's fear and ignorance, twisting the notion of what it means to be free, keeping people sick and shackled, widening the divide between those who have (money, power, control) and those who don't and never will. no one should profit off of ailing bodies. that's not freedom. that's tyranny.

near the end of my musings, i glance outside again and then at a spoon that hours before had peanut butter on it. it sits on a mysteriously-gotten susan sontag book, patiently awaiting to be picked up. it could sit there forever, until it becomes part of the room's wallpaper—an antique snapshot. i sit here wondering, though not concerned, what life is all about, my motions and emotions so crisscrossed in my body's sovereign continent. yes, sovereign.

a birdsong sailing through the screen door breaks my melancholy. i hear the bus pull up with calvin. bathed in late-afternoon dappled shadows, the garden has softened. the breeze is cool and exhilarating. the sun on my back feels good.

college nostalgia, sweet spots, pity eclipses, etc.

For a couple of hours last evening I was taken back to my college days, to a sweet, off-campus house shared by five students, complete with a shabby, yellow, vintage sofa and rooms decked out with second-hand tables and chairs. Our host let me peruse the second floor where, at the top of a steep, carpeted, slightly askew staircase, I peered into the dimness of a few rooms, their beds and floors endearingly strewn with piles of clothes like so many college students are wont to do.

Back in the kitchen, I cracked open a bottle of Côtes du Rhône and filled four stemless wine glasses, two of them plastic. We toasted our hosts, Ben and Meghan, wishing them well in the final few weeks of their senior year. We got their takes on life in Michael's photography classes, plus updates on their current projects. They told us of their post-graduation plans and dreams, including moving to Boston, of having turned down lucrative job offers that didn't speak to their hearts, and of their desire to live near new and old friends. They explained the dating app they've been designing, how it works, and shared with us its clever name, logo and marketing campaign.

It felt good to be sitting around a table with such bright, curious and engaged youth, felt good to be in an apartment that looked, smelled and vibrated so much like the ones I shared with my college roommates thirty-five years ago. And though I was delighted to be in the company of these generous souls who perfectly seared a huge filet mignon and tossed a tasty organic green bean and tomato salad, I was keenly aware of the pinch and sting I felt knowing I'd never be doing such things with my own child. Thankfully, however, the joy of communing with these happy, energetic, optimistic individuals eclipsed any pity I might've felt for myself. I left hoping they'd keep in touch and visit us from time to time like a few other beloved former students—Arnd, Ivano, Emma—did and have done over the years.

Back at home with our fifteen-year-old son who can't speak, wears diapers, still drinks from a sippy-cup, plays with chew toys, and is prone to seize, we are celebrating his own triumphs: Calvin has suffered only one seizure this month, and it was not a grand mal. He has had only three grand mals in the past thirty days, plus just three complex partial ones. And though I shouldn't get ahead of myself, if April keeps trending this well, it could be his best month seizure-wise in four or five years, despite taking only one pharmaceutical. I'm owing this success to having significantly reduced his Palmetto Harmony CBD oil from about five milligrams per kilogram of his weight down to about two mgs/kg, a strategy for success (finding its sweet spot) that its maker and many other parents attest to.

And so today, in the happy afterglow of last night's gathering, and during a day in which my own boy is doing quite well, I'm hoping good things for the Bowdoin College seniors who are about to inherit—and no doubt change for the better and for the common good—our crazy, effed-up world.