ain't no saint

Occasionally, after hearing about the struggles, angst and pains of raising our disabled son, a stranger, friend or in-law will tell me I'm a saint. While I appreciate the sentiment, the only saint in our household is Calvin. Smellie comes in a close second, that is if dogs, especially those who pop chippies and squirrels, qualify for sainthood.

Last week, when walking back from Woody's house, Calvin was staggering and stumbling, limp as a ribbon. I had to make a concerted effort not to trip him or let him topple me. No method I attempted improved our trajectory. I held his hand, gripped his wrist and upper arm leading him forward. I slung my arm around his shoulder, his waist, clasped my hand at the back of his neck trying my best to propel him. I walked behind him prodding him along, every few steps my hands pushing and patting his shoulder blades. My efforts were nearly futile. Every time I stopped nudging or tugging him, he just stood there, even though our house was in view just a few yards away. Finally, I got so frustrated that I yanked him along by his wrist at a pace quick enough to straighten out his serpentines and prevent him from dropping down. All the while I cursed him and our regrettable situation. A devoutly Christian friend once told me that I'll be going to Hell. If I thought Hell exists, which I don't, I'd have little doubt I'd be going there, but not for the reason she asserted (which is that I don't believe Jesus is my lord and savior.)

Despite knowing all too well that Calvin can't help any of it—his poor balance, his awkward gait, his weakness and lethargy, his restlessness, his mania, his drooling, his sun-staring, his epileptic fits—sometimes he still drives me batty. The stress from chronic sleep deprivation, monotony, cabin fever, the weight of anxiety over seizures, my son's vexing behaviors—all exacerbated by the coronavirus—can lead me to some ungodly behavior.

But just when I'm about to commit the worst blasphemy because Calvin has bitten the radiator or the bookcase or the carpet or the faucet, or dribbled prune juice all over the floor, or is stubborn as hell refusing to go where I want or need him to go, my boy turns to me, pulls me in and wraps his arms around my neck. Sometimes he gives me a kiss on the nose. For a second, I glimpse the sweetest, most angelic smile on earth. As he graces me with his singular version of saintliness, all my anger and frustration dissolve into the secular heavens.

candlelight vigil

In my dreams as a kid I used to smell death. The scent was sickeningly sweet. Typically, no one in my dream had died. It was just a sense that came over me, a notion more so than an aroma, that death was somewhere nearby. In any case, it made me queasy.

Last night at six-thirty, Calvin had a grand mal. It was only day three since his last one, and an unusual time of night for him to seize. No interventions were necessary but to lay our hands on him and kiss his neck. In its wake, he was more fitful than usual, couldn't lay down or sit still. Eventually, though, he settled and we pulled the covers over him as he fell asleep.

Sudden Unexplained Death in Epilepsy (SUDEP) is thought to be more common in the twenty minutes, or so, after a grand mal. So, I remained with Calvin while Michael brought up our dinner which we were just about to eat when we heard Calvin seize. Michael pulled a chair into the room and set a lit candle on Calvin's dresser among his various medicines. I sat on Calvin's changing table with my plate in my lap. We ate our dinner bedside, a candlelight vigil, lamenting Calvin's struggles and stresses, wondering if he'd one day succumb to SUDEP, then deciding finally he's too much of a fighter to submit.

After sleeping peacefully for hours, this morning at four Calvin woke to a focal seizure. The fit was long. He wasn't breathing during part of it. I syringed his morning THCA cannabis oil into the pocket of his cheek and under his tongue. Finally, he came out of the seizure, then fell right back to sleep. As I had feared, an hour later he suffered a second grand mal.

As I laid in bed next to him my mind wandered. I wondered how many seizures a brain can handle. I listened to the songbirds outside his window feverishly making themselves heard. I remembered how the only word Calvin ever said—just once—was Mama. That was before the seizures and drugs started to do their hurtful work on his development. After half an hour I returned to my own bed. I tried to get comfortable, focusing on relaxing my jaw and face muscles. Eyes closed, a hint of that death dream-smell came over me. I held Michael's hand. I thought of my friend Woody, of the little girl Charlotte who had epilepsy and died from probable complications of coronavirus. I imagined the candlelight vigil of the night before. I never did make it back to sleep.

advice and intuition

She cried the cry I've cried so many times. Helpless, hopeless, sleep deprived. Racked by seeing her child repeatedly seize. Pummeled by too many drugs to manage and consider, enduring their countless impossible side effects. Exhausted by too many hospitals and doctors, days on end of spoon-feeding and changing wet and poopy diapers, all compounded by stresses of the coronavirus. I know the feeling, that sense of drowning. I picked up the phone and tried my best to throw her a life ring.

This mother had previously connected with me on a social media page about epilepsy. She was reaching out again for advice about Onfi, which was the second of two stubborn benzodiazepines (think Xanax, Valium) that Calvin was on for more than half his life. It took us four years to get him off it. Onfi had been prescribed to help Calvin wean from the first benzo, Klonopin, which he regrettably started taking when he was just three years old. His neurologist at the time, who I'll refer to as Dr. Rx, added Klonopin to Calvin's regimen as a bridge drug while we titrated another, Lamictal, to a therapeutic level. The move was totally unnecessary considering a second drug, Zonegran, had already been prescribed to serve that purpose. I felt it was a cover-your-ass maneuver. I questioned Dr. Rx's logic, asked why he prescribed Klonopin when benzodiazepines aren't meant for long-term use, but at the time I wasn't confident enough in my own research or assertive enough to press further. I was so green then. Everything was scary, new and confusing. And Calvin, even at three, was so tiny. But I should have known since I had questioned Dr. Rx's prescribing of the previous drug, Depakote, which risked causing liver damage especially in someone like Calvin; after six months, it appeared to be doing just that. When it came to the Klonopin, I was told Calvin would be on it for just a few weeks, but despite my repeated pressure to take him off of it, he remained on it for over a year, making it more difficult to take him off of it without experiencing a doubling of his seizures and the introduction of another benzodiazepine, aka Onfi.

During the course of my conversation with this mother, I tried to lessen some of her worry over having re-dosed the Onfi after her child had vomited. I hope I disabused her of any guilt or fear. I described how, years ago, neurologists never really knew how to council me in identical situations. Each neuro had a different suggestion for me, which were clearly best guesses, and in the end I always relied on my intuition. This mother and I talked through her situation. I told her what I knew about Onfi's long half-life. I asked her some questions about her son's behavior and seizure activity during the wean. Together, we strategized, deciding it might be best to skip his bedtime dose, then to give her child his morning dose a little early.

"Above all," I told her, "trust your gut," suggesting that if in the middle of the night things didn't seem right with her child, she shouldn't worry about giving him his next dose; she could get back on his regular schedule gradually. (In the end, our plan worked.)

I went to sleep remembering those awful moments of doubt, guilt, self-pity and angst, all exacerbated by days, months, years of too little sleep. I tried to recall what Calvin was like before his epilepsy diagnosis and before starting a battery of antiepileptic drugs—sometimes four at once. I imagined what he might be like if he'd never taken so many mind-altering medicines, especially at a crucial time of brain development. I drifted off wishing this mother strength, wishing her baby peace and healing, wishing epilepsy didn't exist.

A photo of Calvin just before his 2nd birthday, before he was taking any anti epileptic drugs.

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.

a day in the life of calvin

Pretty much.

             

seeing and breathing

the tick tock of clocks belies the passage of time. slow-motion video feels more real. i reconsider breathing—quick and shallow, deep and labored. I regard his hollow eyes and shiny lids and wonder if i am seeing things. he takes my hand. his is blue-veined, skin like tissue. i stroke his arm. rest my palm on his bald forehead. tell him that i love him. get him to crack a smile. if only i could hold him close one last time.

on long car rides i can sometimes flee grief and monotony. like a roller-coaster, even familiar hills and bends and vistas make me feel more alive, as if i'm actually going places instead of in circles. still, i'm grateful for the car and roads and time and space that take me away, even with the kid in tow. the point changes day to day. gray clouds stitched to hard waves become blue skies kissing land and sea. the view is one none of us will ever see again.

there's a scent in the air that i can't finger. witch hazel blossoms are long past. lilacs have gone to seed. fragrant azaleas have spent their lazy blooms. might it be honeysuckle? roses? peonies? not the sickly sweet that used to seep out of calvin's pores the day after getting rescue benzodiazepine. still, i've smelled something akin to that lately. again, i consider breathing. i consider N95 and covid-19.

the kid has been all right. happy, calm and smiling. four days seizure-free. he's eating well and growing like a weed. no bad side effects—yet—from the pharmaceutical cbd. if only he could make it past day thirteen. if only he could run and play and speak.

the cardinals lost their nest to predators it seems. could it have been the gray fox? i read they can climb trees. they're out there, predators. sometimes with feathers, fur, claws and fangs. at others, flabby-faced in suits and ties, uniforms, camouflage or riot gear. often they're incognito. they hurl their barbs and slurs, spray their gas and ammo, their conspiracy theories. hidden in their shade they undo modern policy, press their knees in the necks of the powerless struggling to breathe.

safe in the backseat my kid takes grapes and blueberries from me. he pulls off his shoe and chews it. yanks off his glasses and gnaws their temples and lenses. pulls off his sock and sucks it till it's sopping unless i can stop him. when setting out he almost always smiles. grimaces in the wind when the windows are down. cranes his neck to stare at the sun every time we turn south. i wonder what he knows of this world. if only i knew what he feels and sees.

i make another bedside visit. this time his house is quiet. no humming of the oxygen machine. i close my eyes with him. listen to him breathe. i tell him it is sunny and mild. a great day for gardening and porch-sitting while sipping bourbon and watching folks and cars sail off down the street. i tell him again that i love him. i tell him not to hold onto this world for me.

Simpson's Point, Maine

revolutions

Awake since one-fifteen, again reflecting on the state of things. Worrying about my restless son. Thinking about the racial strife, the righteous protests, the police.

An hour later the seizure came, my son shackled in its steely grip, at first unable to breathe. His heart beats wildly. I think about that handcuffed Black man dying, his neck under that White cop's knee.

It's day thirteen—a decent span without any fits since having increased my son's new medication: pharmaceutical CBD.

Things around here are getting green. Rhododendrons are blooming while wildlife encroaches—turkeys, foxes, raccoons, squirrels, chimpmonks—in the relative absence of humans on campus and cars zooming down the streets.

The status quo is unsustainable—in terms of seizures, racism, this unhinged administration, and policing. People previously silent are speaking. America is beginning to listen. Seizures seem to be abating. Revolutions of all kinds are within our reach.

Photo by Michael Kolster