4.14.2021

the still waters of yesterday

today, i twice drove out to simpson's point to unwind. the still waters of yesterday had been replaced by endless tiny whitecaps lapping the shore. i cut the engine. with the window down and my kid in the backseat chewing his shoe, i simply sat with the sun in my lap and listened to the world.

to be honest, this yearlong stint taking care of calvin all day every day is taking its toll on me. at times, he's the sweetest child that exists. at others, he totally grates on my nerves. it doesn't help that i don't always know what ails him. time spent with him is at once fulfilling and taxing. stressful and relaxing. unnerving and mundane in impossibly beautiful and tragic ways.

after seventeen years, still i sit with my grief. though mostly upbeat, i'm reminded of my loss on a daily basis. today, i saw a mother in a front yard making a chain of big, iridescent bubbles for her toddler to chase. i watched two boys on the sidewalk bouncing a basketball between them. i saw college students rolling by on boards and four-wheeled skates—all things calvin will never be able to undertake.

i'm mostly home still raising a seventeen-year-old baby—spoon-feeding, changing diapers, cradling. the grief, however, isn't nearly as debilitating as it used to be. i no longer double over on the street. i no longer buckle—sobbing—between friends holding me up as i drag my feet. i no longer weep while swimming, tasting tears, sweat, soda ash and chlorine. but the loss of not having had a healthy child stays with me. like rings inside a tree. or crystals inside a geode. it's enduring. it's in the silent hours of a child who can't speak. it's in the way he sometimes moans and growls, shrieks and seizes. it's in the endless days' emptiness. the broken promises of parenthood. the conspicuous lack of a child's questions—about math, life, the moon and stars, love and justice. the loss persists in the inability of knowing his hopes, dreads and dreams. it's in the absence of his friendships, sweethearts, heartbreaks, epiphanies, all of which would be full of meaning and feeling, and not just for him.

sometimes, i find myself pining for the still waters of yesterday. of the time when i was childfree. perhaps back when i was single. of the days when i was still climbing trees. but then, as i watch the waves' unceasing action against the rocky shore, i realize how life now—with my messed-up kid—is ridiculously rich with roller coaster loops and dives and turns, breathtaking and rare perspectives, and spectacular, transformative waves, the likes of which still waters might be envious. 

The still waters of yesterday

4.12.2021

giving it another go (cbd oil)

calvin went six days between grand mals. not nearly long enough. maybe it's the infection. maybe it's the antibiotic. maybe it's just the fucking epilepsy; (sorry for the expletive, ma, but seriously.) six to eight grand mals per month is too damn many. years ago he'd have just one a month. back when he was little. back when he was on high doses of three mind-altering antiepieptic drugs. back when we had to peel him off the ceiling. back when he couldn't sleep. nearly stopped eating. couldn't walk without falling. had to wear a safety harness. back when the drugs impaired his already lagging progress and caused eternal restlessness:

akathisia: [pronounced: [ak-ah-thÄ­´zhah] noun | 1. a state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant [and antiepileptic] drugs [and/or their withdrawal, especially benzodiazepines.] 2. a movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.] people with akathisia experience inner restlessness which causes them to fidget, rock, pace and panic [and sometimes end their life as a result.]

the seizures keep coming in clusters over two or more consecutive days. he almost never seems to suffer isolated ones. it's why his monthly numbers are so high. last night we went back to trying harmony cbd cannabis oil. on calvin's first go three years ago, he went forty days with no grand mals. sadly, he never regained the same control. so we suspended it. but since the pharmaceuticals have so many wicked side effects, we're giving cbd another go. he hasn't had a second seizure since yesterday morning; perhaps that's promising. too soon to know. crossing fingers. knocking on wood.

Back when, photo by Michael Kolster

4.07.2021

snapshots

After our son's first grand mal of the night, I laid in bed with him. In my head, I began to write my blog. Like our daily car rides, my thoughts looped around. Words took different turns. Images previously seen clicked into narrative landscapes—physical, emotional, virtual. Eventually, I nodded off to sleep.

Of late, Calvin has been too ill to take car rides daily. Some sort of infection—urinary tract, bladder or kidney—means we haven't been out much, or we've driven short loops close to home in case he has another daytime seizure. I lament the days in which I can't travel the backroads. I so miss seeing the gorgeous vistas, the wide open spaces, the big skies, my people: the Carhart man with his three willful dogs; the pair of women with similar haircuts and purple jackets; the tall man with his cute, wiry mutt; the black-clad couple who live at the mouth of the inlet; the bikers and joggers of every age and shape; the marathon runner; even the skinny old hippy chick with the puffy coat, nappy hat, mauve stockings, hiking shoes and poles who looks at me with a bit of suspicion as if she owns the road. They all unwittingly buoy me through this lonesome pandemic. Each sighting, smile, wave and nod somehow lifts me, makes me forget about stresses and worries, Calvin's seizures and our limitations. Without these people, I'd be feeling altogether differently; in other words, not as good. These have been some long-ass, monotonous days—over a year of them—caring for a boy who can do nothing by or for himself.

But I do find respite. Ben came up from Boston Sunday. With Calvin secure inside the house where we could check on him frequently, the three of us sat safely distant in the sunny driveway. Ben's eyes shined bluer and brighter than I remember, at times exuding understanding and compassion. A former student of Michael's, we talked about photography and discussed the art of mindfulness—of finding deeper meaning and beauty in the mundane; with that I have a lot of practice. He asked what kind of relationship Calvin has with language. I was touched by his curiosity and depth of thought.

Ben told us he brings along Polaroid snapshots of his friends when he travels for business. Lays them out in lonely hotel rooms where he can see them. It's as if his people are there in person. It helps him pass the weeks and months away from those he loves. I imagine he might feel as if they're seeing him too, which must be validating in a pandemic for those seen by few.

On Monday, after starting an antibiotic, Calvin seemed to be feeling better. So we took a longer drive down a favorite road to a boat launch eight miles south or so. On the drive out and back we passed the runner. His pace is swift and fluid, as if he never touches down. I'm reminded of the winged feet of Mercury, god of travel. Like when I swim or tread water, it seems he can run forever. Though I reckon he goes quite far, his face remains placid. His endeavor appears effortless. So as not to startle him, in passing I put my hand out the open window hoping he might see me waving as we passed by.

Though we'd already traveled a distance, Calvin remained happy in the backseat playing with his toes. The songs on the radio—some familiar, others newer—soothed me. I chose to take two more favorite loops. Nearing a quiet corner where a sloping neighborhood street meets another road, again I spotted the runner. Well before the stop I paused to give him space—for mind and body. Flying past, he waved a hand in my direction. A sense of joy and ease washed over me. As if evidence of my own pandemic existence, I had been seen and, for a moment, it felt as if he carried me along.

In taking a left turn homeward, I was made to pass the runner one last time. I hesitated to catch his gaze for fear of interfering. As his form receded in the frame of rearview mirror, I was reminded of Ben's snapshots, and of mindfulness and gratitude. I mused: mental pictures of these backroads travelers, a couple of whom have become in ways beloved, are like snapshots in my pocket. I keep them in my thoughts, forever curious of their struggles, passions, hopes and burdens. Not unlike my dearest friends, I carry memories of their forms and faces throughout my days and in-between seeing them in person, like Ben's Polaroids displayed on hotel tables. 

At 3:00 a.m., in the wake of Calvin's second grand mal, he suffered some miserable agitation. After having done all we could to aid and comfort him, I heard the train roll through. Hearing its whistle and rumble calmed me. I imagined taking it to its final destination, wherever that might be. I thought again about my backroads folks. I wondered—not so humbly—if they ever imagine, however fleetingly, my travels through landscapes, time, emotions. I wonder if I've become in some strange ways meaningful to them like they've become to me. Like a stack of snapshots, do impressions of this smiling stranger behind the wheel endure—not as a burden, but as a buoy? Or are my musings more a measure of some real pandemic loneliness and fatigue?

Photo by Ben Painter

4.05.2021

readers write

The sentiments I've received from readers—some from years ago, others more recent—never cease to amaze and nourish me. I send my deepest gratitude to you, dear readers. You are in great part what keeps me afloat. Whether stranger, acquaintance or loved one, you have no idea how much I'd like to hear from you. You quench my thirst for connection in this long and lonely pandemic lockdown.

None of my marathon efforts will ever match yours. Unfathomable efforts by you for so long and with such love, strength and dedication. — Joanie

Wishing you all the best and for Calvin to be well. He is so sweet and he deserves a good and painless life. That is one of my wishes for him and of course you. — Caron

I’m writing an ineloquent email to say that your words touched me deeply and I am thinking of you and Michael and Calvin, and about how time passes and things change and don’t. — Pamela

Thanks for the courage to bare your soul. Such unvarnished truths. And through it all you find the specks of gold. Thank you for you. — David

The difference between the first journey before sunrise and the one you are on now, is that it was a shared experience to which we could all relate ... now we can only see through your eyes and feel from the depths of your heart and try to love you through it from a distance! Know that many of us are swimming along beside you each day, hoping to keep you afloat! XO — Betsy

You mention your body: I think of your spirit. Your soul. Your intrepid resilience and gutsy presence. You are love, and to sit with its awesome glow (undeclared by sincerely-modest you, yet clear to the reader) is a privilege and gift. — Peter

I feel a deep, almost painful love for you and for Calvin. My insides wring out every time I read your writing and experience your conviction and strength. I feel it. We all feel it. And with the strength of that compassion and the collective outcry of empathy, which pours out of your words, I truly believe you can move mountains. — Kaila-Ruth

Yesterday at the end of the movie when your phone rang and you sprang from a boulder like a Momma lion (to quote Joni Mitchell) I realized again how close disaster lives to you, that any phone call, or some little bit of unusual behavior from Calvin and the dangerous dark specter of epilepsy is right there looming over you. But you are fearless and I am full of hope that the right tincture is going to become available soon and it's going to help. xoxo — Lauren 

I don't have a special needs child, so I mean this in the very best way possible, but reading about your troubles makes me grateful for mine. Granted, I don't like my own troubles either, but yours put mine into perspective. Some days, I don't feel like it, but because of you, I take another deep breath, and continue to put one foot in front of the other. — Anonymous

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks. — Jim

Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF. — John

Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening. — Danielle

Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day. 
— Karen

I'm listening from far away and feeling. ciao — Federica

From Beyond Beautiful: One Thousand Love Letters, brainchild, curation and drawings by Peter Bruun, text by Christy Shake, photos by Michael Kolster.

4.01.2021

indifference

stuck at home nursing a stiff, achy back and a sick, feverish kid. outside the earth is parched. too little spring rain for trees and shrubs to drink. watching bits of a minneapolis murder trial while calvin sleeps.

seeing video of a white cop in a blue uniform pressing his knee into the neck of a black american for nine minutes sickens me. the black man cries out. says he can't breathe. what i can only imagine to be his urine streams from under a police vehicle, like when people seize. maybe it's the car's condensation. still, the fact that i even wonder matters.

bystanders plead with the officers to show mercy, but none of them is moved to acquiesce or aid george floyd, the man in distress. he is succumbing to their pressure. they remain an unmovable, emotionless threat. the white cop leans hard into the black american as if he doesn't matter. the victim's bloody face is ground into the asphalt, arms wrested, the intolerable burden of three big men leaning on his back and legs, his chest compressed. the knee in his neck shimmied into prime position for eternal silencing. the white cop indifferent to the pleas of his victim. contemptuous of onlookers. hands casually in his pockets as if jangling spare change. passing the time. as if nothing he does matters. callous as hell.

as with all things just and unjust, i think of my little boy calvin; he has no voice, is misunderstood and sometimes swept to the margins. goes unseen by many who avert their gaze or pretend he doesn't exist—to them he doesn't matter. he's different. easy for others to neglect. not in a position to help or defend himself. could easily get knelt on in the wrong circumstance. this makes me think of the boys and young men somewhat similar to calvin who have died under the weight and watch of those in uniform. autistic. misjudged. misunderstood. misapprehended. falsely feared. wrongly accused. bullied into final submission. insignificant. in some realms—because of their difference—they are thought of as mattering less and are treated as such. 

this black american—and too many like him—was deprived of blood to his brain and oxygen to breathe, vitals denied by a public servant paid and sworn to protect. in broad daylight. witnessed by other beseeching human beings. captured on cell phone video. white mass shooters and dogs fair better.

words provoked by the bully in blue come to me: 

mister charlie. monster. bigot. predator. inept. unjust. lynching. white supremacy. relics. vigilantism. corporeal punishment. systemic racism. apathy. grievance. abuse. hatred. contempt. ignorance. othering. difference. indifference.

the last five words make me consider calvin again. mostly, though, i think of countless dear friends with black daughters and sons. they have to give their kids the talk no parent of white kids does. the talk about being innocent and unarmed. of being suspected, feared, stalked, pulled over, apprehended, gunned down—even in their own homes—too often just because of the color of their skin. they tell their kids: do as you're told; be respectful. keep your hands visible; make no false moves. in this so-called liberated america, following these instructions can mean the difference between tasting oxygen or earth. black people know this. too many die while living it. the difference and indifference is sickening, malevolent, criminal.

at one a.m. calvin's fever spikes. he's restless, inconsolable. little can be done to ease his misery. we tend to him as best we can. crawling back into bed i hear the rain begin to fall. it's coming down sustained and heavy. a deluge. I wonder what would have happened if it had rained that day in minneapolis. wonder what the bloodless cops kneeling into george floyd would have done if the sky had opened up.

3.29.2021

covid vaccinations!

With help from Calvin's pediatrician and the nurses at our local vaccination clinic, Calvin, Michael and I were given three leftover doses of the Pfizer Covid-19 vaccine last Friday evening. As usual when receiving vaccines, Calvin was a star, and even (mostly) kept his surgical masks on. As rain fell on our faces when leaving the clinic, I felt a wave of relief come over me.

I posted the good news on Facebook and received an outpouring of support from over 350 friends and strangers—many who follow my blog—plus over 100 loving comments. There was only one unknown person who voiced his opinion, using expletives to dis so-called Pharma poisons, told me not to be a lab rat and then wished me good luck. He went on to say something to the effect that only sheeple choose to be vaccinated. I told him not to be a troll and added:

sheeple also drive on the right side of the street for a reason.

If not for the efforts of several compassionate health professionals, Calvin would not have gotten his vaccine until sometime in late April. Now, all three of us will achieve maximum immunity by the first of May and, as a result, will be able to get back to at least a few of life's pleasures like hugs, face-to-face encounters, and having small dinner parties with other vaccinated people. For this I am most grateful.

3.26.2021

rescue mode

At noon yesterday I was on the phone with my sister-mama after having finally gotten Calvin downstairs. He was recovering from the morning's back-to-back seizures—two of three grand mals in the space of just two days. She had read about our troubles—Calvin's seizures and my tweaked back—in my morning blog post and had called to check in on me. As we chatted, Calvin seemed at peace in his jumper, a place of comfort for a boy who suffers from an antiepileptic-induced movement disorder; the kid can't sit still even if he wanted to. My best guess is that he wants to.

While refilling Calvin's sippy-cup, I looked over my shoulder to see him slumped in his jumper, his dangling hands and face red as beets. Rushing to him, I called out his name, asking in vain if he was okay.

"He's having a seizure!" I yelled into the kitchen where I'd dropped the phone on the butcher block. "Grand mal!" I added, before I heard my friend quickly and compassionately end the call.

The first part of a grand mal, aka tonic-clonic, is the phase where the body contracts and stiffens as if in active rigor mortis. There was no way I was going to be able to pry my boy out of his rig, his body like a clam closing its shell. Instead, I pulled a wooden chair up and under him and set him in my lap. Just then he went into the seizure's tonic phase; this is when the body convulses. To reduce the tension from the jumper in case its straps might hurt him, and to get him on his side to prevent him from aspirating on sputum, blood or vomit, I reclined some, lifting up my legs and planting my feet on the nearby partition. There, in my lap still strapped into his jumper, my five-foot tall, eighty-five pound son convulsed for more than a minute. 

When the fit was over, I slid his flaccid body out of its trappings, taking care not to knock his floppy head on the floor, then I untangled his feet from the crotch of the jumper. In the filtered light I could see his face and hands had become ashen. To stop the cluster of seizures from advancing—Calvin's history of bad clusters has led to hospitalization for stubborn seizures as long as 45 minutes—I grabbed a vial of Diastat (rectal Valium) that we keep inside a little bench Michael built. I popped off the plastic top, opened a packet of lube, squirted some on its tip, pulled down his pants, undid his diaper, inserted the tip of the vial, depressed its plunger which squeezed the gel right into him. Then, I changed his wet diaper, spread his fleece baby blanket under his body and folded a flannel one under his head as he drifted into benzodiazepine oblivion.

I called Michael to tell him what had happened. He was concerned, particularly considering that since we started Calvin on a homemade THCA cannabis oil seven years ago, Calvin virtually never has grand mals in the daytime anymore, especially if he is awake. What's worse is that I don't remember Calvin ever having three grand mals in less than twelve hours.

It's impossible to know the culprit that caused four grand mals in the space of two-and-a-half days. Neither of us is exposed to others who might pass on illness. Calvin has not had a vaccine yet. Could it be too much antiepileptic medication? Not enough? A growth spurt? Hormones? The "natural" progression of epilepsy? After seventeen days without a grand mal and fifteen days without any seizures, was he just pent up? Seizures beget seizures; as with all paths, well-worn ones in the brain are easier for seizures to take.

When Calvin awoke, I eventually managed to get him to the green couch with a little bit of feeble help from him. He spent the rest of the day and night recovering, and still is. I'm grateful if not amazed that my body was able to do what it did, considering I was practically paralyzed with back pain the night before and yesterday morning. I guess it goes to show what we can do when we're in rescue mode for our kids.