chaos and order

Maybe the low barometric pressure caused the fit to appear. Perhaps its arrival was due to the rapid growth my son has experienced the past few months. Could it be that his new medicine is at too high or too low of a dose? Is he feeling the effects of this crazy world where chaos enables the coronavirus to rule? Are we ever going to curb these weekly seizures—these synapses firing in sick unison—which rack his body and brain? Do Americans have the wisdom, humility, selflessness, compassion and dedication it will take to defeat Covid-19?

Outside, my garden is in good order. Mulch is in its place, its weight suppressing undesired weeds, its color reflective of of the wet trunks of trees. Any errant growth is neatly trimmed, withered blossoms picked and tossed into the compost. Despite my best efforts, I can't adequately control my son's condition, but the shrubs and trees which hug our home I can, to some extent, restrain. They seem responsive to the attention I give them, do well being trained.

On backroads and along the coast, life is wilder. Thunder rolls from across the bay. Lightening strikes like white neurons through skies the shade of gunmetal gray. Rain pelts the windshield in half-dollar drops (what happened to the swarms of bugs that used to splatter the glass?) A lone Confederate flag hypes our nation's racist foundation and its bloody-awful legacy. Black Lives Matter signs, which righteously populate lawns and drives, are looted by trespassers—traitors, fools, thieves.

Back at the house my son recovers from the seizure. Overnight, the rain cleansed streets, quenched flowers, grass and leaves. Day lilies are exploding like little suns in apricots, yellows and reds. My boy is not yet back to baseline. He presses and pokes his roving eyes and frantically knits his fingers, then covers his ears as if to shield them from some unheard racket. But there's no thunder. Just the distant threat of chaos and the so-called tyranny of order.


dear confederate

Dear Confederate, Neighbor,

You might wonder why I'm writing, Bear with me. I'll try my best to explain.

In the span of ten days my son Calvin has had nine seizures. He has endured thousands of these attacks since before the age of two. He's now sixteen. Constant assault comes not only from the seizures but from the drugs meant to suppress them. The root of his epilepsy, a brain anomaly, also renders him speechless. He still wears diapers, and can't walk without some assistance, especially near traffic or on rough terrain. He is legally blind, negotiating the world much like someone who can't see a few feet in front of their face. He can't really use a spoon and must have his food doled out in small pieces or he's liable to choke. He can't bathe or dress himself, or adequately express himself. He enjoys no independence. Days are endless, both of us largely confined by his condition.

I often wonder how long a brain and body can withstand such pummeling. Do the seizures torture his organs, his muscles, his joints, his bones? No doubt they make him struggle to breathe; I see it every time he seizes. How must he feel when his heart pounds so feverishly? Is he fearful when the seizures take aim? I gravely dread a future captive in this agony.

Dear Confederate,

On a recent escape, I took Calvin on our usual car ride—Pleasant Hill Road, Flying Point, Bunganuc, Woodside, Maquoit—except this time we drove the opposite way. At one point, on a hillside clearing next to a modest house, I spotted a strange and unsettling sight: a confederate flag. It was hoisted on a pole so tall as to belie any humble claim of it's intent. I wonder if you put it there to provoke.

As if doubting my eyes, I turned around in a gravel lot near the bay where at low tide folks break their backs digging for clams in the muck. Driving by for a second look, I craned my neck catching sight of your flag in my blind spot. In the absence of a mailbox, I tried to guess your address. I meant to send you a postcard or letter relating my dismay of the emblem which reveres traitors who defended a sinful and hideous institution. I want to describe its hurtful symbolism honoring those who fought to preserve the purchase, sale, exploitation and enslavement of human beings for profit.

Dear Confederate,

Do you know the enslavers' victims—innocent African men, women, and children—were kidnapped, stripped, shackled, and crammed into the bowels of ships like animals, with no room to move, little foul air, water or food to intake, steeping in each other's urine, vomit and feces for weeks? Do you understand entire families were torn apart? Infants and toddlers, tweens and teens were ripped from their mothers' embrace. Husbands and fathers, mothers, sisters and brothers were sold downriver. Children and adults were forced into grueling labor sunrise to sunset. The enslaved were terrorized, tortured, beaten, whipped, raped and lynched for the smallest infraction, if any. Do you know that these innocents endured this hell at the hands of White people for 400 years only to be set free without a penny for their labor? And it didn't end there; slavery's legacy morphed into other forms of atrocities and oppression such as massacres, lynchings, Jim Crow laws, segregation, bombings, disenfranchisement, redlining, the war on drugs, police violence, and today's mass incarceration. Did you consider that these injustices indelibly scarred, marginalized and financially crippled generations of virtuous, hard-working Americans? Are you unaware? Led astray? In denial? Fine with it?

Dear Confederate,

Again, I think about my son, Calvin, one of the sweetest beings you'd ever meet. I want to tell you, Confederate, how difficult life is for him. I want to chronicle for you the eternal beating on Calvin's brain and body, his suffering, his aches and pains, his constraints. I want to describe the relentlessness of it all, my son's regrettable inability to understand why this should be happening to him, why he is seizing and hurting and can't speak—this dutiful boy of mine, this pure and innocent soul who is deserving of none of this torture. I want you, Confederate, to understand how woeful it is to know that my son can't escape his tormenter, and that no matter what I do, I can't liberate him from his misery. I want you to imagine, know and feel my son's pain. I want you to witness our wretched situation. 

More so, Confederate, I want you to imagine yourself and your family shackled and enslaved—for that particular fate was infinitely worse than any suffering my son or I will ever have to face. I want you to understand what the rebel flag might mean to Americans who are descendants of the enslaved who live in its miserable wake, and for we who bear witness to the injustices they still face. 

Dear Confederate, let fall your flag and surrender 
for the sake of all America.

Calvin resting and eye-pressing after a spate of seizures.


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.