4.06.2020

not easy

Life's not easy, especially of recent. The coronavirus pandemic is wreaking havoc with our world. We're all facing hardship and uncertainty of one kind or another. Will we or our loved ones get sick? Will we have enough food? How will we pay our bills? When will physical distancing ease up? Will life go back to normal? When will we be able to have dinner parties?

Meanwhile, in India, millions of migrant workers are trekking outrageous distances—some 500 miles or more while wearing flip flops—to return to their villages after losing their jobs in the cities. Some have died along the way from starvation and exhaustion. In this nation as in others, refugees crammed in camps have no protection from the coronavirus. Some Americans are still not heeding physical distancing. Too many so-called leaders have been, and continue to be, slow to react to the crisis. Domestic violence is on the rise. Some nations are still in the thralls of civil war.

Because of these worries and stresses, at times I find myself more on edge taking care of Calvin while he is out of school and without his nurses here to help me. Thankfully, Michael is doing all of the grocery shopping and cooking, and taking care of Calvin so I can walk Smellie or do a little writing. Life for us, though historically protracted because our disabled child expands time in ways which are sometimes vexing and at others a blessing, has slowed even further now that we are on lockdown. Days feel longer and more monotonous, especially if we're trapped inside because of the weather. But I'm quickly getting back into the groove of taking care of him for hours and days on end, and I can see its benefits in the gift of having to practice mindfulness and the bringing into sharper focus what is both trivial and important. And, it helps that it has been nineteen days since Calvin's last grand mal, thanks, at least in part, to THCA.

This change in routine has prompted me to reflect on my own parents. I long for them—Dad who died twenty-four years ago, and Mom back in 2015. I wonder how my mother survived being at home alone all day when resources were thin, friends were scarce, and my father was away at work—one stint for months—leaving her with a six-year-old, a four-year-old, a three-year-old, a two-year-old and a newborn. How did she shop and clean and cook and wash and feed them and deal with poopy diapers all by herself? Then, four years later, I was born. Raising so many children must have been hell for her, and yet rarely did I ever see her lose her shit.

The gravity of this pandemic and the strict measures to contain it will no doubt heighten passions. Those emotions, like any, are real and valid, though perhaps now more fragile. I try hard to be patient and understanding with Calvin when he begins to chap my nerves. When he is screeching, my selfish instinct is to tell him to hush up, to say that he doesn't need to behave in the manic way he does. But what do I know about the way he feels? Not much. How could I? I can't get inside his head or his body to know how he is feeling physically or emotionally. What do I know? And so, now that I'm with him all day long, I've been trying to slow down, to meet his eruptions with love and affection, with as much understanding and sensitivity as I can muster. But when I fail, which I do often, I'll ask him for forgiveness and, in his own way, he'll give it to me willingly. He always does. We should do that for ourselves and for each other.

4.02.2020

lockdown

Our boy Matty just made a delivery to our kitchen window. Technically, I'm not sure he's supposed to since our governor, Janet Mills, just put us in lockdown today. However, I imagine beer delivery is an essential service, so I think we're good. Matty kept a safe distance as he put the brewskis through the window, and Michael grabbed them with kitchen towels before putting them in the refrigerator. When Matty said so long, he smiled at me from under his raincoat's hood, and I told him I love him and his family. Right then it became more real how hard it will be not to commune with our beloveds for who knows how long. My guess is September.

Everything coronavirus is intensely fascinating.

In the background we were listening to KEXP, which is broadcast from near my hometown in Seattle. They had just played a gorgeous cover of David Bowie's Young Americans by Durand Jones & The Indications, and were pausing for a top-of-the-hour break. Two DJs sitting in separate sound studios spoke of how they could perform dorky dances since no one was there to see them. They went on to notice how they were getting low on wipes to disinfect the equipment, adding that they'd play music until they ran out. That last comment made me begin to weep. Seeing me, Michael said something to the effect that music will save the world. He says that all the time.

As the one DJ was signing off, she said, "Be kind to each other." If I hadn't already been slayed by the previous comment, that one pretty much killed me. I thought of a recent conversation I had with a loved-one in which I might have been over-the-top and not as forgiving as I might have been in other times, even if a reaction was duly warranted.

As dusk is setting, a fire rolls in the wood stove. Michael is fixing salmon and sushi rice for dinner. Thankfully, a dear old friend who lives alone in a farmhouse on the edge of town, and whom I've been worried about, finally responded to me saying, among other things, that he is fine.

Love in the time of coronavirus is wild.

4.01.2020

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

3.28.2020

truth be told

don't diss me. don't dismiss me. don't chide me. don't deride me. don't belittle me. don't try to fix me. don't attempt to remake me. i'm not my parts. their sum is my whole. forgive me. listen. reflect. examine. review. express regret. don't doubt me. don't discount me. no, i'm not too sensitive or solemn. too stupid or foolish. too naive or unversed. this is who i am. i am good. don't get defensive. don't second guess me. imagine what's inside me. walk in my shoes. live a day with my load. don't assume. accept my indignation. if only you understood. don't misconstrue me. don't disabuse me. don't try to unpeel me. instead try to feel me. please don't curate me. i'm not a project. i have faith in my own works. take care not to bruise me. if i tell you it hurts, know that it's true. don't presume. don't try to justify. consider your part. practice saying i'm sorry. those foreign words. it's not hard. intentions are not everything. sometimes they're confused. if you love me, accept my perspective. it's simply my truth.

Photo by Michael Kolster

3.26.2020

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

3.24.2020

snow day blues

When I take showers I turn on the baby monitor so I can hear Calvin in his room down the hall. He plays in his safety bed with a bunch of his favorite toys—Sesame Street cell phone, crocheted rabbit rattle, Oball football and other light-up, musical toys. Today, he is doing all sorts of vocalizing—screeching, grousing, cooing. When he coos he sounds like a big baby, which in ways, though he is sixteen, is just what he still is. When I hear his happy sounds, I imagine how awful it would be if he got sick. I feel my eyes sting and well up with tears wondering if we'll be able to fend off this flu.

Last night we got about a half foot of heavy snow. I wish Calvin and I could go outside and build snowmen and women and make snow angels. I wish we could go cross-country skiing at the fields and through the woods. I wish I could feel safe taking him to the grocery store, which is one of the two places he likes to go. The other is Cafe Creme, which is closed to indoor seating but, like many local establishments, is offering food and drinks to go.

Hopefully the town, which has been practically shuttered, will clear the sidewalks soon. Hopefully the snow will melt quickly; Calvin cannot walk well in deep snow or slush.

This coronavirus shit is getting real. The projected numbers are sobering at best. There is a massive shortage of ventilators and masks for sick people and health care workers. GOP senators are trying to funnel money to their rich constituents and corporate backers, twisting the truth to fit the absurd narrative their so-called leader tweeted so recklessly, "Democrats want the virus to win," when what Democrats are trying to do is to get a win for the average American worker. The Occupant is still lying to the American people, trying to save face, shifting blame, playing down the pandemic to secure his reelection and the solvency of his private businesses. Too many Americans put their faith in the Charlatan instead of in the scientists and experts who know and tell the truth.

I towel off and get dressed. Calvin is "singing" from his bed. Though he sounds happy for now, I feel sorry for him and for us, what with little to nothing to do. I imagine he is bored, but I guess that should be the least of my worries. We've got to take it one day at a time, even when it snows.

On my way to the fields

3.21.2020

sheltering in place

Sheltering in place. Stuck at home. Missing school. In our current circumstance, we can't go to the movies. Can't browse our favorite stores. Concerts and birthday parties and day camp and sleepovers aren't options. Can't go out for family dinners at our favorite restaurants. Can't do play dates. Can't go to the playground to swing or climb on the equipment. Can't go on vacations or spend the night away while someone else babysits. Not yet, anyway.

Stuck at home for what is and will be hours and days and weeks and months on end—for the foreseeable future considering the state of things. We can listen to music, turn on the news, call friends, read a few chapters, write a little. We can do house chores, take naps and long showers, enjoy films, go to bed early. We can watch our offspring play alone. We can cook and eat and drink. Weather permitting, we can take walks in the neighborhood. We can go on long car rides. We can stroll through the woods. Mostly, though, we're stuck at home.

Visiting friends for family dinners isn't an option. Going to the grocer is a challenge. They're frequently out of what we need, often when we need it most. When we do go, other shoppers regard us with suspicion. We have to steer clear of touching certain surfaces, especially since some of us so often touch our face and mouths.

Times are strange. Life is hard. Welcome to our world.

As the parents of a non-verbal, incontinent, impatient, unsteady, severely developmentally-delayed teenager with autism and frequent seizures who is often loud, can't sit still or play with others, touches and mouths everything including his fingers, and who sleeps in a special safety bed, we've lived the way I've just described—stuck at home, mostly, with little else to do—for sixteen years. Thankfully, in great part because of the love and support of others, I've survived and remain mostly sane.

That's why I'm convinced, in this strange and scary time of coronavirus, you can too.

Call me if you need a pep talk. I'll most likely be at home.

Photo  (screenshot) by Michael Kolster