march by numbers

too many fitful nights and risings before 3:30 a.m. one tired mama. four grand mals. zero focal seizures. three ice cream cakes assembled for friends. two cool, glow-in-the-dark nike running shoes from joanie. a bunch of 5Ks and a few four-milers equals one tender iliac crest. several weeks overcompensating. one foolish kid-lift. one wrecked, spasmy back on the mend. twenty-eight days abstaining from running (insert several sad emojis.) one book on healing back pain due to tension caused by the stress of anxiety and resentment; an excerpt reads:

her life remains as hectic as ever, she is perpetually tired and harassed, and she never feels as though she has done as well as she should.

it is pointed out to her that she will never cease being a perfectionist, that she will always have too much to do, but that the secret of getting over TMS (tension myositis syndrome) is not changing oneself but simply recognizing that the combination of the realities of her life and personality cause her to generate an enormous amount of anxiety and anger.

yes, anger too. she has probably never acknowledged the fact that although she adores her three little girls, she is simultaneously angry at them for what they require of her. the idea that she could be subconsciously angry at her children is outside of her experience. when she grasps the idea that the cure is in the acknowledgment of such unacceptable subconscious feelings, the pain will cease.

. . . one deep grateful breath for the validation of what i already consciously acknowledge but hadn't applied to injury. two stinging, weeping eyes for the suggestion. three major turkeys: one five-foot-one, ninety-two-pound boy giving me a run for my money; one ridiculous dog; one hard-working (seven days a week) husband. countless hugs from my son. a bunch of tasty perishables hand-delivered from friends. several good movies. four ounces of crushed cannabis bud being made into thca oil for calvin. one faded bouquet of tiny white daffodils with peachy centers given to me in exchange for a slice of ice cream cake. a dozen edited manuscript chapters. too many frigid days for this fair-weather, west-coast "kid." countless magnificent skies, clear and cloudy. nine- and ten-day stints between most of calvin's seizures. four fingers crossed that his seizures lessen. scores of crocuses smiling up at me. zero nights out on the town. zero family visits. zero vacations to exotic and amazing places. three family excursions in the confines of our car. one good cry. two social security supplemental income applications to complete for calvin. one pile of smellie's vomit scraped and rubbed off the rug. one cracked iphone. several tears shed. four covid tests for two long-overdue dinner parties. infinite thanks for friends who love and hug and kiss this zany chick. three bird baths quenching thirsty cardinals, jays, robins, chickadees and squirrels. scads of delicious dinners cooked by one loving and talented husband. a few quarrels. several long car rides. fifty-five, or so, nice walks on the trails and back roads. handful of friendly and much-appreciated encounters with strangers and friends. infinite satisfying panoramas. abundant gratitude.

wishing on stars

The weight of the world weighs heavily, sometimes on me, often on others, terribly so on the people trapped by disability, illness, poverty, hunger, and by war and its unconscionable and needless suffering.

Calvin, war and suffering are just some of the reasons I don't believe in god. Not the Jewish one, not the Christian one, not the Muslim one. Not any god of organized religion over which so much of the world wages its wars. I don't believe in the notions of heaven or hell—except the ones here on earth—or Satan, or religion's anthropomorphic and patriarchal architectures, or the Bible's stance on slavery and subjugation. It doesn't make sense to me to worship a static, anachronstic god when the universe is expanding and evolving. What I do believe in is the breathtaking interconnectedness of everything in the universe—the planets and stars, the rocks, the forests and seas, the animals—and how we all are a part of it and will rejoin it in a more literal and elemental way when we die, when we again become stardust. The feelings I have for the sun and the moon and the far-off galaxies and the pull they have on me—this wishing on stars I sometimes do—is powerful spirituality. My energy will not be lost when I die. It will live on in the memories of those whom I have touched and in the soil and sea where my ashes might scatter. I will sink into and become earth and sky, wind and river. I am and will be universe.

But when a friend tells me they pray for me, I understand, even appreciate it. And when someone whom I've never met offers me this kind of solace on a difficult day in a way which resonates in my bones, I melt into her words and heal just a little bit. In reading this, perhaps you can see why:

each day when I light my candles I say the names of your family aloud, with the others I choose to remember in this daily way, and I pray for peace and healing and love for you all and I carry a ruby for grief and an obsidian for comfort and a tiny icon of mother and child and a small wooden angel and some other things which i carry in my pockets and find in my hands several times a day and though it is the way of a child to hold to such talismans i allow myself this touching home, these miracles of the universe, and i reach for my mother and father, and my grandparents, and dear friends i have lost and for my own lost self and for all those who struggle and all those in pain and like a child i wish on stars and hold my stones which once were stars and i feel the love of the universe and send some to you and to your small miracle and trust it reaches your family in some way, like sunlight on a cheek, like sea mist, like hope, like yes, like moonlight, like a small bird shaking her feathers, like a shadow of a tree bending just slightly in morning air, like bending on one knee, on both knees, like bending the head with hands forward pointing from my heart to yours

—Elizabeth C.

I, too, send my deepest gratitude and love to you, Elizabeth, and to all of you, dear readers—brilliant stars—who lift me up, fill my heart, dry my tears, inspire me, send your love in prayers and words and wishes and gifts. You make my world—my universe—a better place to be, a place where, despite my burdens and my son's suffering, I can believe in the power of wishing on stars, and in wishing for peace and love and wholeness for the rest of the world.

breathless again

As my mother once told me she used to do, this morning I tried to drown my sorrows in the shower. Though my eyes stung and my throat began to feel swollen, only a few tears fell. I so wanted and needed to do some serious weeping—about my son's afflictions, the suffering of Ukrainian civilians being bombed by Russian troops, the miseries of this damn pandemic—but instead, all my body had to offer was a halting breathlessness under the stream of hot water.

A couple of hours earlier, not long after waking for the day, Calvin had a rare, conscious-onset grand mal seizure in his jonnny-jump-up. Michael had just stepped out for his early-morning run, so when Calvin began to seize, I ran to the door and yelled Michael's name into the sleepy street, hoping he was still within earshot. Moments later—knowing well what my calling-out meant—he rushed back in through the door.

Unable to pry Calvin's convulsing, vice-like body from the jumper, we managed to get him onto his side—which limits the risk of aspiration—by supporting Calvin's upper body on Michael's chest and his hips and legs on my lap as I sat in a chair pulled under his jumper. Once the seizure was over, we were able to slip Calvin out of the jumper and onto the floor where I placed a folded blanket underneath his head. After a few minutes of our son's own halting breathlessness, together Michael and I hoisted Calvin onto the green couch where he laid in a daze.

Regrettably, it has been only two days since our son's last grand mal. I had just been thinking about how extra homemade THCA cannabis oil often seems to prevent Calvin's seizures from clustering if given in the hours and days after each initial seizure. I wish I had given him extra cannabis oil yesterday afternoon and last night with the hope of preventing this morning's fit, especially considering the advancing full moon which also seems to tug his seizures into existence.

Thankfully, Calvin's conscious-onset grand mals have become a rare occurrence since I began giving him my homemade cannabis oil eight years ago. He used to have them regularly, and frequently in the bathtub. They virtually disappeared with the advent of the cannabis oil, which relegated his grand mals to the middle of the night when he's asleep and secure in his safety bed. Unfortunately, his daytime grand mals began to reappear in the last several years, albeit with little frequency; they still account for just a small handful of the sixty to seventy grand mals Calvin suffers in any given year.

So today, once again, I'm stuck indoors with an unwell kid who is going between resting on the green couch to fidgeting and walking in aimless circles; I doubt he's out of the woods yet. Thankfully, I was able to get outside for a short stroll with Smellie as the sun was rising over the pines that skirt the fields. Thankfully, I got to take a shower before Michael left. Thankfully, I was able to breathe peacefully as the morning sunshine lightly gilt the room (instead of hiding in a bunker without food or water, breathless, while being shelled by the enemy.)

And, like a gift, just as I was wrapping this up while Calvin rested next to me, I got an email from a friend and former Bowdoin College student, Marina Henke, who did graduate work in radio and podcast documentary studies at the Salt Institute last fall. She attached a link to the profile piece she did on me, which I'm now able to share widely. I invite you to have a listen; it's beautiful and telling, and only seven minutes. Hearing it again unleashed all sorts of feelings in me, as well as some much-needed, hard and cathartic weeping.

Calvin recovering on the couch after this morning's grand mal.

matter of reflection

There's so much to be grateful for every day—running water, food, heat, electricity, the freedom to move, democracy. We've got infrastructure that pretty much works, and grocery stores regularly stocked with essentials for our homes. We've got restaurants in which to dine, and hospitals where we can (hopefully) heal if we're ill or hurt. We've got Amazon and Apple, Zappos and Google, Netflix and Zoom. We've got public servants: librarians, teachers, fire fighters, legislators, road workers, bus drivers, garbage collectors and cops. We've got farmers, truckers, builders, manufacturers, artists, musicians, chefs, servers, grocery store and retail clerks. We rely on all of them to supply what we need and want, and to get shit done. They're there for us despite some people's petty tendency to complain and protest. 

There's so much to grieve—war, illness, debt, death. So many things to love, to loathe, to lament. These are strange and harrowing times. The world is turning upside down and inside out. Millions are hurting while billionaires continue to enrich themselves by exploiting the labor of others; they pocket record profits by gouging the rest of us (blame them for stagnating wages and inflation) and by not paying their share of taxes. And there's another power grab: the unjustified, unprovoked war that Pootie is waging against Ukraine. It's all so sick and twisted.

I consider the Ukrainians, and others in war-torn nations, whose homes, livelihoods and families are being blown to smithereens. Because of Pootie's war, they have little to no access to their homes, their schools, their hospitals, their critical medications to treat chronic conditions. I imagine legions of them seizing, not just from epilepsy, but from traumatic brain injury, diabetes, dehydration. And what of expectant mothers, new mothers, infants and preemies? Pootie's troops are bombing children's hospitals and maternity wards. His lies and crimes against humanity are unfathomable. Someone has got to bring him to heel.

Here, I reflect on my fortune. I recline on a comfortable couch with a full belly, a small glass of red wine and a large one filled with clean water from a tap that never runs dry. My only palpable worry at the moment is whether my epileptic child might seize tonight. Even then, he's likely to make it through, unlike so many of war's refugees trying to flee besieged cities.

Wartime calls to mind a favorite rumination from, The Celestial Worlds Discover'd, Or, New Conjectures Concerning the Planetary Inhabitants and Productions. It goes:

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, 1698

It is clearer now than ever how much Pootie and his stooges' evolution as human beings has been stunted. I wonder what tainted ingredients make such depraved megalomaniacs.

My thoughts return to little Calvin sleeping safely and soundly upstairs. I wonder what he dreams about. I wonder if one day he'll be orphaned. I wonder if one day soon war will return to these shores. Then, I recall images of the innocent Ukrainian people caught up in the Russian invasion: a mother and her children shelled while trying to escape bombardments; a man pushing his bicycle through ravaged streets strewn with debris; a father clutching his dead child riddled with shrapnel; bodies wrapped in black plastic being thrust into mass graves; mothers grieving over their dead boy soldiers; a pregnant woman dying on a stretcher. And I wonder again, like I do about Calvin's suffering, how much these good people can endure, and what more I can do to ease it.

Photograph: Evgeniy Maloletka/AP

besieged

Last night just before eight, my son began to seize. While his body convulsed, his lungs were cut off from oxygen for a minute or more. His lips, fingers and toes turned blue. Watching him, I thought of the dusky, lifeless face and hands of the schoolboy who was shelled by Pootie's Russian troops over the weekend. He died in the street beside his mother and sister while they were trying to escape. Others died too. Here at home, after his spell, my boy simply drifted off to sleep, safe and sound.

Of late, my thoughts are almost exclusively with Ukrainians. When I walk alone on the back roads, the skies are free of enemy aircraft. I'm keenly aware of not being shot at or shelled. I wonder if this Maine landscape looks at all like Kyiv or Mariupol. Wonder if those places, too, are beginning to thaw. Halfway through my misty morning walk, at about the two-mile mark, I feel a dryness in my mouth. I think about living in a city under siege, surrounded by an enemy intent on strangling any and all sustenance. When I catch droplets of mist on my tongue, I know my thirst can't be quenched, and I wonder for how long a body can go without water. Not long.

My thoughts turn to my boy who is only five-feet one and ninety-two pounds; still, he's a giant compared with the puny little unloved men who manage to stay in power only by strong-arming, issuing threats, telling lies and spreading propaganda. You know who they are. They use the term "fake news" with reckless abandon. They brazenly lie to their constituents. Enrich themselves. Rewrite and whitewash history. Engage in ethnic cleansing. Squash the tenets of truth and justice. Commit genocide. I don't believe in the place, but if it exists, I hope they go to hell, and soon.

My nonverbal, incontinent, uncoordinated, epileptic, autistic son is so much better than them. He not only loves unconditionally, he very literally envelopes people with his affection and is afraid of no one. Most of all, he doesn't discriminate. And though his antics and afflictions often mess with my well-being, he's not like the effing fascist autocrats bent on ruining the world with their vile, narcissistic doings.

Meanwhile, I weep while reading the good news. News about American veterans heading to Ukraine to help in the fight against Pootie's fascist tyranny. News about Ukrainian troops getting married under gray skies like these, surrounded by friends and rocket-propelled grenades and antitank missiles at the ready. News about the secretive vigilante cyber group known as Anonymous which is hacking into Russian streaming services and State television to broadcast footage of the bloody and destructive war their president is waging. About the flood of Airbnb bookings in Ukraine by people abroad not intending to check in but hoping to help ease the suffering of the besieged.

After calvin's seizure, as usual, I woke up several times. It was quiet. I pulled his cover up over his shoulders, gave him extra cannabis oil to thwart any further spells, gave him a few sips from his bottle, then went to get a drink of water. Outside the bathroom window I saw Orion in the southwestern sky with his belt and club, shield and sword. As always, I imagined him not as hunter but as protector of underdogs. And I thought again of Ukrainians—each one of them underdogs besieged in their own way, cut off from family, democracy, freedoms, food and water, husbands, sons, fathers, brothers ... breathing—hoping they can withstand the constant pummeling somehow, just like my own little Calvin.

a hard rain's a-gonna fall

Because Ukraine, because tyranny, because artists like Bob Dylan and Patti Smith, because the power and beauty of music that calls us to think and weep, resist, ponder and dream.

Oh, where have you been, my blue-eyed son?
Oh, where have you been, my darling young one?
I’ve stumbled on the side of twelve misty mountains
I’ve walked and I’ve crawled on six crooked highways
I’ve stepped in the middle of seven sad forests
I’ve been out in front of a dozen dead oceans
I’ve been ten thousand miles in the mouth of a graveyard
And it’s a hard, and it’s a hard, it’s a hard, and it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, what did you see, my blue-eyed son?
Oh, what did you see, my darling young one?
I saw a newborn baby with wild wolves all around it
I saw a highway of diamonds with nobody on it
I saw a black branch with blood that kept drippin’
I saw a room full of men with their hammers a-bleedin’
I saw a white ladder all covered with water
I saw ten thousand talkers whose tongues were all broken
I saw guns and sharp swords in the hands of young children
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

And what did you hear, my blue-eyed son?
And what did you hear, my darling young one?
I heard the sound of a thunder, it roared out a warnin’
Heard the roar of a wave that could drown the whole world
Heard one hundred drummers whose hands were a-blazin’
Heard ten thousand whisperin’ and nobody listenin’
Heard one person starve, I heard many people laughin’
Heard the song of a poet who died in the gutter
Heard the sound of a clown who cried in the alley
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, who did you meet, my blue-eyed son?
Who did you meet, my darling young one?
I met a young child beside a dead pony
I met a white man who walked a black dog
I met a young woman whose body was burning
I met a young girl, she gave me a rainbow
I met one man who was wounded in love
I met another man who was wounded with hatred
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall

Oh, what’ll you do now, my blue-eyed son?
Oh, what’ll you do now, my darling young one?
I’m a-goin’ back out ’fore the rain starts a-fallin’
I’ll walk to the depths of the deepest black forest
Where the people are many and their hands are all empty
Where the pellets of poison are flooding their waters
Where the home in the valley meets the damp dirty prison
Where the executioner’s face is always well hidden
Where hunger is ugly, where souls are forgotten
Where black is the color, where none is the number
And I’ll tell it and think it and speak it and breathe it
And reflect it from the mountain so all souls can see it
Then I’ll stand on the ocean until I start sinkin’
But I’ll know my song well before I start singin’
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall 


Written by Bob Dylan and performed by Patti Smith 

other people's troubles

Despite my dreams—of falling in love and of others falling in love with me, of soaring high above the trees and of breathing underwater—I clench my teeth in sleep. I know why. Years of anxiety over my son and his condition have gotten the best of me. The angst is worse when I lie awake at night and even manifests when I snooze.

My son had three days of fever triggering two grand mals followed by a rash on his face, neck and torso that got worrisomely worse before getting better. Today, he seems remarkably okay, though who really knows. In any case, he seemed good enough to send him to school, which meant I was finally able to walk the back roads, write, relax and make an ice cream cake for a friend.

These days, my worries and burdens feel petty compared with other people's troubles. I can't imagine what folks in war-torn nations must go through. In Ukraine, for instance, what might it be like to see satellite images of a forty-mile-long military convoy on its way to destroy you? To hear that Pootie plans on starving your people into submission and maybe even into oblivion? To scour empty grocery store shelves looking for morsels of sustenance for your children? To use your unarmed body to block Russian tanks and trucks from overrunning your home? For mothers, wives and children to have to leave their sons, brothers, husbands and fathers behind fighting a merciless aggressor? To go without shelter, food, water and medicine amid the bitterness of winter warfare? To wonder if your god will forsake you like in so many wars before?

That kind of hardship, angst, worry, fear and heartache is impossible for me to fully imagine. But I can try to get there in an effort to bear witness to their struggle; it's the very least I can do.

Yes, I worry about Calvin's wellness daily, if not more. But he has amazing doctors he can fairly easily access, and we get his medicine with little trouble. I don't get enough shut-eye, am up several times most nights, and can pretty much never sleep in past five or six, all because of Calvin. Yet, nightly, I sink into a cushy mattress, rest my head on soft pillows and pull warm covers up over my shoulders. Though Calvin misses too much school, mostly because of his seizures, at least he has a school to attend. We have heat for our home, electricity, too. We can purchase virtually anything our tastebuds and tummies might desire from the grocery store just down the road. We get all sorts of essentials delivered to our door.

I think about the Ukrainian refugees—all of them. I especially consider the families with diabetic, epileptic, cancer-stricken kids and those with other serious afflictions. How will they fare? How do they get medical care and life-sustaining medications? What happens to people who are bed-ridden or too feeble to flee? It's hard for me to comprehend that kind of anguish and suffering.

And so, when I'm apt to feel like crumbling under my burdens, I remind myself that I have so very much to be grateful for. Compared with other people's troubles, I really haven't much to complain about at all.