dreamscapes and seizures

deep into another autumn. again we're trapped at home. after a string of seizures, calvin isn't feeling well. i'm attempting to be grateful. trying to stay whole. feeling a mix of sorrow, anguish and resentment, frustration and impatience. reminding myself i'm only human. striving to grasp onto grace and hope.

last night, calvin had two more grand mals. how can he go nineteen days without one, then have four over three days in a row? that hasn't happened before. at least we're not in the hospital. in-between the ones last night, he was agitated and clammy. awake and restless for hours. patting the bed. banging the wall. extra cannabis didn't help. perhaps the new strain is the culprit. it's near impossible to know.

i barely slept a wink. when i did, my dreams were mixed and vivid. a long and winding one featured me and my boy. as usual, a lot went wrong. details of the dream are soon forgotten. what's left are impressions, like footprints on a sand bar. suffice to say, it wasn't pretty. those ones never are. in the second dream, someone i wanted was falling for me hard. the feelings were so real. i have frequent dreams of being in love with people who love me. in these, and dreams of flying over land or breathing underwater, i simply will things into being. just rise up on toes or dive below. float in and out of clouds and kelp and making love. i think these dreams are healthy. inevitably, calvin tears me from them. sometimes when he's seizing, or in moments just before.

that is how these recent days have dawned. from deep in dream to cold, hard consciousness, however groggy. ripped from splendid dreamscapes into reality's harshness. hard to start a day like that two mornings in a row. today makes three. it appears we may be headed toward a fourth.

wide awake, i cruise through recent photos. of trees and clouds, shrubs and seas. rocky shores. the landscapes, seascapes, skyscapes are magnificent. their beauty, raw. their awesome presence humbles my significance. autumn canopies wild with color as if combusting. sable waters laced with whitecaps, wild and churning. mackerel skies stretching like an ocean to forever. i trust infinity and nature. must let them lead me to surrender. like certain dreams, they set me free. make me whole. melt my sorrowful embers.

calvin just had another seizure, this a focal one. his dusky lips stitched up as if he'd eaten something rotten. i gave him a different strain of cannabis oil. one with more thc. we'll wait to see what happens. see if we can sleep tonight ... and dream.

every path i take

it had been just four days since calvin's last grand mal. still, i sensed it coming on. his agitation and mania. his restlessness and intensity. his peculiar noises and expressions. last night, while walking smellie along a familiar path at dusk, it arrived. it was the cusp of the new moon. i returned home to find my husband cradling a postictal calvin, who had bitten his check or tongue till it bled.

after the seizure, i spooned my sleeping child. wide awake, my hand on his chest, i reminisced on recent events: finally jogging the trails with my dog; nice, longish visits with a few, familiar, back-roads strangers i had finally and very happily met; a kind invitation from one of them to sit by the sea; chatting under stars and strings of lights on a girlfriend's back deck; sipping the delicious blackberry, mint, gin cocktail her daughter had concocted; meeting an unknown runner who stopped mid-workout just to visit with me and calvin on the sidewalk; four separate gatherings with new and old friends; my glorious bike ride to simpson's point and back again; along the way, hearing a hermit thrush's haunting song; eating lobster rolls and corn on the cob; a conversation about pity and compassion with my visiting sister-in-law.

finally, sleep arrived. like life sometimes, my dreams were vivid and difficult. at five o'clock, we awoke to a second grand mal and, when it was over, i crawled in next to calvin again. this time, shut-eye proved impossible. instead, i mused on recent expressions of compassion and love from friends and strangers:

i've had deep sympathy for you from day one; i think about you and calvin all the time; i couldn't handle your situation with the grace you show; i wish there were something i could do; i love you then now always; you break open the heart and the stories; thank you for the little window into your world; wish that the pain i genuinely feel for you could somehow make your days easier; all you want is to live in your full motherhood and not as a caregiver, too. not too much to ask, my friend. not at all. 

knowing i'd be mostly stuck indoors for the next day or two, i laid awake imagining travels, like my next back-roads adventure, a bike ride to the rise where i can see the salt marsh meeting the sea, hearing that hermit thrush croon, rolling up my jeans and wading into the bay at simpson's point, running the shaded trails on a gorgeous morning like today. most of all, receiving love and compassion from friends and strangers along every path i take.

all i want

all i want is to lie quietly for awhile on a blanket outside with my son. all i want is for us to make it all the way down the block. all i want is to hear him tell me what is wrong. all i want is for his seizures to stop. all i want is to never give him another drug.

all i want is for him to stop staring at the sun. all i want is for him to drink without spilling it down his chin. all i want is to be able to ease his pain. all i want is to better know what he wants. all i want is for him to eat with a spoon. all i want is for him is to chew well enough not to choke.

all i want is for him to tell us what happens at school. all i want is for him to dress and undress himself. all i want is for him to stop wetting the bed. all i want is for him to stop biting and drooling on every surface in the house. all i want is for him to stay calm enough for me to read him a book.

all i want is to sleep four or more hours without getting up. all i want is a day to myself. all i want is for him to run around and play by himself. all i want is for him to walk without my help. all i want is for his manic outbursts to stop. all i want is to know what is inside his head.

all i want is to feel more like i once did.

Photo by Michael Kolster

possibilities

just put calvin on the school van. got a strange mix of feelings. a tightness in my chest. a grumbling in my stomach. a quivering in my nerves. a lightness in my limbs. all at once i'm feeling sick, sad, proud, anxious, free, hopeful, grateful, elated.

calvin's new teacher, paul, whom i like very much, is riding with him to school today, making sure he keeps his mask and glasses on his face instead of chewing them. i sent in several bags including everything but the kitchen sink—two kinds of diapers, a packet of masks, a box of vinyl gloves, a package of wipes, two sets of clean clothes, a bottle of prune juice, a pair of backup eye glasses, a handful of kerchiefs, and a lunch made for the man-sized appetite of my eighty-five pound tyke.

calvin will return home from school just after noon. in the meantime, i plan to finish my coffee, walk smellie, pull some weeds, water a few new plantings, prune a bit, mow the lawn, relocate a rhododendron, take a shower, eat a bowl of oatmeal, write a little, and spend some time just wandering aimlessly around the yard i love so much while dreaming of the possibilities.

american dream (two paths)

I dream at night of San Francisco, but it's not the town that was my home. I dream at night of my husband, but he's not the man I know. I dream of movie stars and strangers falling in love with me. I dream of ex-sweethearts, but they're not like I remember. I dream of Calvin speaking, but also of him seizing. I dream of fleeing an America I don't recognize—a quarter million dead and thousands of others dying, Confederate flags, internet trolls, deceitful leaders, social unrest, jobless, hungry, homeless, sick Americans.

But my eyes are wide open; it's not a dream at all.

The other night, after Calvin's worst day in a long time, I laid awake thinking about a movie Michael and I had just seen called 20th Century Women. Near the end of the film was a clip from President Carter's 1979 Crisis of Confidence speech. So moved, the next day I went online to watch and then read the entire speech. As I did, I felt as if he were speaking about the coronavirus pandemic, its trivialization by some, and its reckless handling by the current administration. It felt as if he were addressing the current political climate—the pugilistic presidential election, the recent and regrettable Supreme Court fight, the deadlock in the Senate, the spread of election disinformation, the disenfranchisement of Americans, and the polarization and divisiveness in our nation. Here are some excerpts which struck me:

I want to talk to you right now about a fundamental threat to American democracy.

The threat is nearly invisible in ordinary ways.

It is a crisis that strikes at the very heart and soul and spirit of our national will. We can see this crisis in the growing doubt about the meaning of our own lives and in the loss of a unity of purpose for our nation.

Our people are losing that faith, not only in government itself but in the ability as citizens to serve as the ultimate rulers and shapers of our democracy.

President Carter went on to say:

The people are looking for honest answers, not easy answers; clear leadership, not false claims and evasiveness and politics as usual.

You see a Congress twisted and pulled in every direction by hundreds of well-financed and powerful special interests.

You see every extreme position defended to the last vote, almost to the last breath by one unyielding group or another. You often see a balanced and a fair approach that demands sacrifice—a little sacrifice from everyone—abandoned like an orphan without support and without friends.

We are at a turning point in our history. There are two paths to choose. One is a path I’ve warned about tonight, the path that leads to fragmentation and self-interest. Down that road lies a mistaken idea of freedom—the right to grasp for ourselves some advantage over others. That path would be one of constant conflict between narrow interests ending in chaos and immobility. It is a certain route to failure.

All the traditions of our past, all the lessons of our heritage, all the promises of our future point to another path—the path of common purpose and the restoration of American values. That path leads to true freedom for our nation and ourselves.

Carter's words resonated with me deeply, and rereading them I was nearly brought to tears. I imagined the two paths he mentioned—two Americas, really—one of them rising high toward healing, reform, unity, inclusiveness, diversity, compassion, decency, and justice, the other descending deeper into cynicism, intimidation, chaos, bigotry, selfishness, poverty, illness and lonely, unnecessary deaths from a runaway virus.

I hope in this election we, as a nation, abandon our worst impulses and fears and choose the high road—the path to an America worth dreaming of and fighting for—one glowing with hope and light and integrity, an America not just for some of us, but for us all.

Vote!

unforgiving

It had been only three days since my son's last grand mal seizure. As Calvin convulsed, at first tangled in his covers, Michael and I caressed his arms and legs, kissed his face and told him that we love him. It was the first time in awhile that I cried after one of his seizures. Perhaps my tears were triggered by a state of physical and emotional exhaustion from months of taking care of a child who can do absolutely nothing by himself save play with his baby toys in a bed with side panels and a netted canopy. This pandemic has made everything about life harder. On top of that, Calvin's epilepsy has been unforgiving as ever.

When the seizure was over, Michael went downstairs to finish preparing dinner. I sat on a step stool next to Calvin's bed and kept vigil, watching and feeling my boy's chest rise and fall. In the dim room, as I mourned my son's condition, I wondered again how I'd keep it up, this caring for him as he grows into a young man. I don't really know the answer. In the quiet, I recalled how, earlier that day, I had seen little kids riding bikes with their friends, siblings and parents. Last week I'd seen a child half Calvin's age swimming in the brackish water off of Simpson's Point with his mother, the two of them chasing schools of hungry fish churning the water. I'd seen a little girl skipping down the street with her dog. I'd seen a young family buzzing around in a small community garden, perhaps picking raspberries, beans or tomatoes. My child has nothing to do with any of it. His body grows but most everything else about him stays the same. Though sixteen, he's still an infant-toddler. He still wears diapers, which in the hot, humid weather make him sweat. His go-to toys are still rattles and chewies. He still seizes. About the only things that are different are the soft, thin mustache that has appeared and is gradually darkening, and the thought that he is becoming permanently psychotic due to years of seizures and antiepileptic drugs.

As evening fell and the room around me darkened, my thoughts turned to the young man I just started writing to who is living the rest of his life on death row. Online, I've seen photos of the cramped, rusty, neglected cells in his so-called correctional facility. I wonder if he can ever see trees, stars, the moon, or hear wild things bark at night like I do. I wonder what he dreams about while I dream of things like my mom and dad, San Francisco, missing flights, breathing underwater, Calvin seizing. I wonder if this captive soul can remember what the world looks like outside the massive prison walls. Does he ever catch the scent of sweet clover? Hear the buzz of bees and the chirps of birds? Does he remember or see bodies of water slip under low bridges? Does he imagine gleeful children so unlike my son leap from their spans on these unforgiving days of summer?

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.

seizures and dreams

Last night in the wake of my son's seizure, while spooning him, I dream.

I'm in a small room in a strange, sparsely furnished house with a dozen others, none of whom I know. It's just after twilight, an indigo sky crowning a nearby mountaintop. Suddenly, the lights go out. Somewhere, whether in my head or from some eerie broadcast, a man's voice booms that everything is going to come down. It's clear the others hear the ominous message too; I see them scrambling about nervously. Then comes a low rumbling, one which I feel deep in my bones. Is it an avalanche? An earthquake? An explosion? Peering out a nearby window I notice that all of the homes nestled closely together into the mountainside are darkened too. I sit and fret, wondering if a tree will crash through the roof and crush me. I imagine the ceiling caving in, the earth swallowing us whole. I'm held captive awaiting my demise, only to wake to the sound of my son rustling under his covers. It's not yet dawn, and I hear the lonely rumble of passing snowplows, feel the house quake as the plows clear fresh snow from streets which are yet desolate.

With the exception of the unexpected seizure, all is well. Compared with years past, Calvin sleeps well after his grand mals and does not go on to have subsequent ones. No longer does he stay up for hours wired as if in a panic, his heart pounding, his fingers madly knitting. My guess is he is nearing full freedom from some of the effects of benzodiazepines and their withdrawal. Perhaps he is also benefiting from a much lower dose of Keppra than ever before. Maybe my latest batch of THCA cannabis oil is responsible for his recent, relatively low seizure count—only four grand mals this month and zero focal seizures so far—which is less than half his average monthly total.

As I drift back to sleep with surprisingly little worry about my boy, outside, tiny white flakes fall in windless conditions. Though the sun is far from rising, the sky is grey-white. The sleeping world is dark and still and quiet, save the rumbling of passing snowplows.

surrender to winter

Stepping ankle deep into freshly-fallen snow impedes my progress. But perhaps I need to slow down, take it all in, amid these thoughts of all-things-Calvin swirling around in my head like snowflakes in a squall. Dizzying, these ruminations on seizures, mania, drugs, and uncertain futures keep me up at night and nag me all day long.

Yesterday, however, was anything but a frenzy, trapped indoors with a mostly-happy and very huggy boy on this season's first snow day home from school. From just past dawn until nearly dinnertime, Calvin and I traipsed and flopped from sofa to table to bathroom shutters to bed and back again as the storm laid down its tiny white crystals, several inches in all. It was too wild, windy and frigid to brave the outdoors.

Today, though, everything is still. Clouds drift by nearly imperceptibly, beyond them peek patches of a soft blue backdrop. Bows laden with snow bob and sway with as little motion. As the sun works its way into the sky, blobs of snow drop from limbs and icicles drip diamonds which drill into the powder.

Winter is the time for dreams, when storms relegate us indoors, when the cold slows blood to molasses, when days are short and bedtimes early, when the low sun casts thin shadows over immaculate fields.

Where are we going? Who will we become? When will we be released? Will our days ahead by any easier? When and how might we succumb?

While at the fields, I ran into one of Michael's former photo students, Niles. He was taking pictures of snow and light, of colors faded in the mist of late morning. We embraced, talked of school and family, of his imminent travel to Paris and of speaking French. I urged him into the forest, where I'd seen sunlight eking through the tangle of branches. I had just emerged. He was headed there. Speaking to Niles about Calvin reminded me, thankfully, that these days are easier than olden ones.

It feels okay to surrender to winter. Here, there's really no escaping it. I remind myself to slow down. Step outside whenever possible. Muse on the falling flakes and the different paths they take. Contemplate the placement of shrubs, the whistle of a night train, the peachy feel of a loved one's cheek. Dream of last-minute trips to New York and of more seizure-free days. Embrace the chilly air, its crispness and ability to create starlit nights. Bask in the glow of a low sun casting shadows of living things otherwise gone unnoticed.

college nostalgia, sweet spots, pity eclipses, etc.

For a couple of hours last evening I was taken back to my college days, to a sweet, off-campus house shared by five students, complete with a shabby, yellow, vintage sofa and rooms decked out with second-hand tables and chairs. Our host let me peruse the second floor where, at the top of a steep, carpeted, slightly askew staircase, I peered into the dimness of a few rooms, their beds and floors endearingly strewn with piles of clothes like so many college students are wont to do.

Back in the kitchen, I cracked open a bottle of Côtes du Rhône and filled four stemless wine glasses, two of them plastic. We toasted our hosts, Ben and Meghan, wishing them well in the final few weeks of their senior year. We got their takes on life in Michael's photography classes, plus updates on their current projects. They told us of their post-graduation plans and dreams, including moving to Boston, of having turned down lucrative job offers that didn't speak to their hearts, and of their desire to live near new and old friends. They explained the dating app they've been designing, how it works, and shared with us its clever name, logo and marketing campaign.

It felt good to be sitting around a table with such bright, curious and engaged youth, felt good to be in an apartment that looked, smelled and vibrated so much like the ones I shared with my college roommates thirty-five years ago. And though I was delighted to be in the company of these generous souls who perfectly seared a huge filet mignon and tossed a tasty organic green bean and tomato salad, I was keenly aware of the pinch and sting I felt knowing I'd never be doing such things with my own child. Thankfully, however, the joy of communing with these happy, energetic, optimistic individuals eclipsed any pity I might've felt for myself. I left hoping they'd keep in touch and visit us from time to time like a few other beloved former students—Arnd, Ivano, Emma—did and have done over the years.

Back at home with our fifteen-year-old son who can't speak, wears diapers, still drinks from a sippy-cup, plays with chew toys, and is prone to seize, we are celebrating his own triumphs: Calvin has suffered only one seizure this month, and it was not a grand mal. He has had only three grand mals in the past thirty days, plus just three complex partial ones. And though I shouldn't get ahead of myself, if April keeps trending this well, it could be his best month seizure-wise in four or five years, despite taking only one pharmaceutical. I'm owing this success to having significantly reduced his Palmetto Harmony CBD oil from about five milligrams per kilogram of his weight down to about two mgs/kg, a strategy for success (finding its sweet spot) that its maker and many other parents attest to.

And so today, in the happy afterglow of last night's gathering, and during a day in which my own boy is doing quite well, I'm hoping good things for the Bowdoin College seniors who are about to inherit—and no doubt change for the better and for the common good—our crazy, effed-up world.

thank goodness

Thank goodness for waking up in the morning with the foggy memory of another dream set in San Francisco.

Thank goodness for sunshine on blistering, cold, windy days, for melting snow and ice, for the coming of spring. Thank goodness for rolling fires in the wood stove, and the sound of it creaking aside the unmistakable harmonies of Steely Dan.

Thank goodness for kick-ass nurses, for shaggy wackadoodles named Nellie, for my eighty-six-year-old neighbor Woody who pours me a shot of bourbon over rocks any time I show up at his door, then sits and listens to my meaningless prattle, and sometimes wipes my tears.

Thank goodness for wise parents of children stricken with seizures, and for an amazingly responsive, informative, kind, generous, smart mother who first made a cannabis oil for her child and now makes it for the rest of our kids.

Thank goodness for a scary-as-shit dystopian horror film that makes at least some of its audience think deeply about Us—about racism, privilege, poverty, oppression, slavery, walls and forgottenness in this crazy-ass, regrettable time in our nation.

Thank goodness for seizure-free days, and for my boy smiling at me when I walk in the door.

Thank goodness for good husbands, loving friends, in-laws who check in, brothers who call to talk. Thank goodness for the same salad I've made nearly every night for years (I kid you not) that always delivers (mixed greens hopefully including arugula, red onion, blue cheese, avocado, cherry tomatoes, croutons and Michael's special olive oil-garlic-mustard-red wine and balsamic vinegar-salt and pepper dressing.)

Thank goodness for the field of amazing, talented, thoughtful, progressive, intelligent individuals lining up with hopes to lead this nation to better things for all of us, not just for a select few.

Thank goodness for friends who love me from near and far, for ones who offer to stop by on nights when I'm flying solo, for ones who dream of me and Calvin and who take us to the farmer's market, for ones who come for coffee, who walk the dog, who join me at a bar or table, who see me grouse and yell but don't pass judgement, who make me laugh and cry. You know who you are.

My pal Woody

beyond reason and dreams

I dreamt of him the other night, the friend we lost last August. I could feel his strong body standing close to mine, could see the anguish in his brown eyes. In the dream, he hadn't died yet, but we all knew this was his plan; we all knew he had made up his mind and there was nothing anyone could do. In life, I wish I'd known how deep his anguish went.

With his dream-time coming to a close, I wanted every minute of him to be mine. But I knew there were others who felt the same, and I knew also that he needed space to himself, this friend-brother-son of ours. And so, after embracing, he kissed me and I released him to say goodbye to the others he loved. As I rode the streetcar to downtown San Francisco (I dream of that fair city almost nightly), I saw him riding inside a trolley headed in the opposite direction. Looking quite young again, his face thin and clean-shaven, his small ears and nose holding dark-framed spectacles, he was alone and weeping, his face buried in his palms. I understood then how hard his life had become.

Later in the dream we were together again for one final moment. I held him as if he were my child, then kissed his chest where in life a gorgeous tattoo had arced. The tattoo, a quote from Voltaire's Candide, had read, in French:

All is for the best in the best of all possible worlds.

But in my dream, his tattoo had vanished, revealing a smooth, blank expanse of skin, the one he had been born with. That was the last I saw of my friend-brother-son; he had said goodbye to me in dream-person.

I awoke melancholic, and yet yearning to go back to sleep and dream of him again. In dreams, we see people who aren't reachable, can hear and touch them. I understood how selfish I was to be glad to see him alive again, knowing that he suffered, and yet it pains me to think he's not out there living the life in which he seemed to revel.

While seated at a cafe later that morning, Michael and I saw Hector, one favorite of his former photo students who have kept in touch in recent years. As Hector approached me from behind, I watched Michael's happy surprise. I remained in my seat and leaned into Hector while he slung his arm around my shoulder. Resting my head against his side felt safe, familiar, like it did when I had embraced my friend-brother-son in the dream that morning, and in real life.

Later, I recounted my dream to Michael, told him how sad it made me and how much I missed our dear person. As I described my dream, Michael's eyes turned pink, and watered. Between us, Calvin was up to his usual antics—drooling, fidgeting, cackling. Watching Calvin, I pondered why a boy like him—intellectually and physically disabled, legally blind, incontinent, nonverbal, epileptic, autistic—goes on living with so little tangible purpose, goes on making me sometimes resent him, making me sometimes wish I were free of him, while another life, one with so much genius, vibrancy and potential ends so tragically early.

But then I remember the phenomenal essay, A Life Beyond Reason, written by my friend Chris Gabbard about his son, August, who was not too unlike Calvin. At the end of the piece, Gabbard, who has just written a memoir with the selfsame title, describes his son:

August ... is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.

August died a few years later when he was just fourteen.

Having reread the essay, pausing on that last paragraph, I reconsider the despair Calvin often brings, and the grief I feel from having lost my hurting friend-brother-son to suicide. And instead of feeling sorry for myself, I feel grateful for having been able to know and love them deeply, and to have had the chance to tell them as much, in person and in dreams, past and yet to come.

Photo by Michael Kolster

sleepless dreams, stardust and carbon

another sleepless night without real dreams. my son, every half hour sitting up in bed and banging. sometimes cackling. tonight doesn't look too good for us or him. hours later, about to drift to sleep. that's when the squirrels begin gnawing and scratching in the eaves. the sound is unsettling. michael pounds the walls hoping to disturb them. i pray calvin stays asleep. at three a.m., just after finally going under, i hear the scream. this time it's muffled and brief. still, i know its meaning: our son is seizing. we rush into his room. unhook his bed's netted canopy. let down the safety panel. protect his spasming head and wrists and feet. call his name trying to reach him in his seizure-dream. blood and saliva begin trickling from between his lips. when it's over, i gently nudge his mouth open to find the wound. a bitten tongue or cheek. a pool of blood lets loose a scarlet stream. i think of rivers rushing to the sea. i stroke his moonlike face with love and sorrow. then i slowly syringe cbd oil inside his opposite cheek.

before i crawl in with him, i drink a glass of water and pee. outside, it's crisp and black and in the teens. pinned in the sky behind the glass i see orion. i think of emily's little ronan, gone now for how long i don't remember. i used to see orion as his guard. perhaps he's out there in the stardust.

in bed with calvin. michael tucks in a pair of curled-up bodies. in my arms calvin goes to sleep. for me, shut-eye remains elusive. in darkness, i think of little charlotte who has influenza and is fighting off pneumonia—a grave danger for our fragile children. i send a little mojo off to colorado.

my thoughts tumble to our mate who died last august. in our care, he left behind stacks of plastic bins and cardboard boxes. clothes and tools, gloves and socks and shoes. in my sleepless dreams i'm back to sifting through them. a wide-brimmed hat with snaps attracts me. my head is swimming in its blackness. in search of him, i sink my nose into a dress shirt. it smells of soap and plastic. i find him nowhere in its cool soft fabric. it hurts to miss him. he was like a brother-son to me. he has returned to stardust. never again to feel pain or be sleepless. now he is beautiful carbon. he wore that color often. he chose it.

it's not long before my boy awakens. just as my sleepless mind is dreaming of our new year stroll beside the ocean. we were three, not counting calvin. in a perfect world he would have been there with us, skipping, running, tempting white waves crashing at his feet. sprinting up then boomeranging with some precious found thing. a rock. a shell. driftwood. a reed. i picture him making long shadows and sandcastles and scraping his name into the beach—as many grains of sand as stars and planets. but he cannot do those things. instead again he stayed at home, his brain planning its next assault on him. i can smell impending seizures on his breath and fingers, on his drool-soaked shirts and robe. still, we can't escape their orbit. my billion-year-old carbon child, though reeling through his life half-blind with seizures, is not yet stardust. he's there at home to greet us. i hold him closely. i dream of calvin even when i'm sleepless.

imagine

Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people living for today

Imagine there's no countries
It isn't hard to do
Nothing to kill or die for
And no religion too
Imagine all the people living life in peace

You may say I'm a dreamer
But I'm not the only one
I hope some day you'll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people sharing all the world

You may say I'm a dreamer
But I'm not the only one
I hope some day you'll join us
And the world will be as one

—John Lennon and Yoko Ono

graduation day

Today is graduation day, the day college students—so unlike my son will ever be—receive their diplomas after four years of ridiculously hard work at one of our nation's most prestigious institutions of higher learning. Bowdoin College, where my husband Michael most gratefully teaches photography, has turned out graduates like poet Henry Wadsworth Longfellow, writer Nathaniel Hawthorne, the founder of Netflix Reed Hastings, the late mayor of San Francisco Ed Lee, civil rights activist and Black Lives Matter supporter DeRay McKesson, and my dear friend and Olympic gold medalist, Joan Benoit Samuelson.

Yesterday, graduating seniors and their families attended baccalaureate where their classmate, a student of Michael's named Diana Furukuma, was honored to speak of our need for cultural humility, of being open to engaging with others. She said, "At the core, cultural humility suggests that knowledge is about accepting how much we don't know. Locating the blind spots and implicit biases that we all have. It's about consistently asking, what am I not seeing?" Indeed, Michael sometimes gives his intro photos students an assignment where they take a photo, then turn around and take a photo of what is behind them to discover, perhaps with surprise, what they may not have been aware of in their deliberate search for something else.

Graduation day is bittersweet for me. I love seeing the students dressed in their caps and flowing gowns. I relish—though while sometimes weeping—watching them walk past our home with their friends and family members on their way to the gathering. I kind of enjoy the pomp and circumstance, and if it weren't raining I'd take Calvin along as I have in past years. But I'm just not up for it this time, probably because Calvin and I are still recovering from him having had three grand mals within sixteen hours earlier this week, and so I'm loathe to bundle up, pack his food and drink and diapers, wrestle with a squirrely stroller and a broken umbrella, navigate the crowd, get wet.

Last night, the three of us sat at the table as I fed Calvin some of his dinner. Michael remarked how strange and amazing it is that we have a fourteen-year-old child who doesn't speak, and that we can't really communicate with him—can never know his thoughts, desires and dreams. And while I wish for Calvin to have been born healthy, sometimes it seems as though he helps us find our blind spots, helps us see the world through different lenses. Perhaps he helps us delve more deeply into what other marginalized people experience—Black people, gay people, poor people, homeless people, immigrants, Muslims, Mexicans, etc—not that we didn't do so before, but perhaps our perspective and empathy are broader and deeper because of Calvin.

So congratulations, graduates! May you forever see the world with new and curious eyes and from someone else's perspective. May you be open, challenge authority, question assumptions, be both introspective and outward-looking. Move forward. Evolve. Grow.

Calvin's preschool graduation, June 2010?

i have a dream

On this, Martin Luther King, Jr. Day, I have a dream—a dream of leaders who espouse decency, humanity, reason, love, kindness, honesty, integrity, compassion, wisdom, inclusiveness, justice and equality. I know plenty of these good people exist, and so I will meditate on them. With folks like Martin Luther King Jr. in mind, I will continue to champion the causes of equality, fraternity and charity. I will go down on one knee for justice. I will support those who personify the very best in us.

I, too, have a dream, and with legions of others, I'll work to make it come true in two-thousand eighteen.

in my dreams

Sometimes, in my dreams I can breath underwater. Other times I fly. I just aim my face to the sky and slowly lift off the ground. Most often I dream of flying at night, looking down on darkened houses, purple beaches, and the tops of swaying evergreens, sometimes having to dodge and dart between power lines. Mostly, I am in control of where I soar, as if on thermals, and I alone posses this gift. Often, I am trying to help lost souls find their way, navigating and calling to them from above the earth. In other dreams I try to hide my gift of flying from villains who would attempt to shoot me down.

Other times I dream of Calvin having seizures, only to wake minutes before he launches into one.

Once in a blue moon I dream of Calvin talking to me.

Last night, though, I dreamt that I discovered ropy scars in each crease between Calvin's thighs and hips. These wounds were due to the rigid plastic tabs of his diapers being positioned too low and therefore cutting into his skin. I winced when I found them, then felt a sinking in my gut thinking my poor boy suffers so very much.

This morning, after the nightmare about his wounds, he had another grand mal on the heels of yesterday morning's one. December had begun fairly well, with just two grand mals by mid month and only one day with a spate of partials. But epilepsy has a way of catching up, of not allowing much down time, rest time, time to recover. If Calvin is not having a day with seizures, it seems he is ramping up to or recuperating from one.

As I lie next to Calvin in bed after he suffers these fits, and in my wicked state of chronic sleep deprivation, I sometimes lament my life situation—stuck in this flat New England town with little to do, stuck in my writing a bit, stuck indoors with a seizing child, stuck in this cold, somewhat isolated part of the world. I lament the state of things in this nation with its sick president and its hypocritical, greedy, disingenuous republican congress bent on twisting the truth just like their unhinged leader can't help but do. I lament the growing divide between the working masses and the wealthy few, the damage cabinet members are doing to the departments they've been hired to marshal, the turning of the clock backwards to a time when polluting earth, air and rivers was okay to do, when women's rights were kicked to the curb, when overt racism and mob justice ruled, when only white men reigned, when the disabled weren't given a place at the table, when the only people whose religion was protected were Christians, and when folks couldn't marry whom they wanted to.

I want to float on a thermal into the future where none of this is true.

In winter, a few nights each week, Michael and I watch the PBS news hour where we see stories of the world we wouldn't see on network news. I watch accounts of war, famine and genocide. I watch stories of the injustices of racial and religious discrimination. I see evidence of poverty and corruption, disease, neglect and mass starvation. I choose to bear witness to these avoidable atrocities—pain, anguish and suffering which our current administration's rhetoric and policies exacerbate. I am angry. I am tired. I am ashamed of the contemptible president and GOP congresspeople who claim to be leaders of this beautiful nation and all of its people, not just the few. They are not champions of truth, justice or morality.

Thinking back to my dream about Calvin's scars, I wonder what it means other than it is something of concern when he is in the care of others; I've seen the diaper tabs cause red marks and welts that must hurt. Then, I think about flying and of the free feeling of breathing underwater, and I wonder when we'll surface from this nightmare of relentless seizures, this nightmare of a depraved and hurtful regime.

Photo by Michael Kolster

fist of lightning

Lying on an Asian beach, a battery of black clouds crouching overhead, I glimpse a fist of lightning punching the horizon. It’s coming, the deluge, wind and sea spray brushing my cheeks. We know we can’t escape, he and I, the older brother of the youth I love. In his embrace, his moonface aglow, he leans in and kisses me. And I let him. And it feels right, feels good to be loved, yet it leaves me yearning for the younger in the pair of these doting ebony-haired boys, the one who stayed at home.

When the torrent comes, my companion and I duck into a nearby row of covered shops, their plywood walls tacked with trinkets, keepsakes, tinctures. In an instant, rain thunders down on corrugated metal roofs strung with plastic lights and paper lanterns sent dancing in the gale. My head throbs, so I scan the shops looking for something to dull the pain which skulks behind the sockets of my eyes. As the storm takes hold, midnight beachcombers scramble to find refuge, elbowing their way between us, wet trenches rubbing our faces, dank bodies breaking our fragile chain. And then I lose him, his hand snatched from mine in the crowd, his jet hair melting into a rolling black sea of crowns.

In the midst of my dream I'm slapped awake by Calvin’s jarring seizure scream, which sounds as if the fit is strangling the life out of him. I bolt to his room, peel back his bed’s safety netting, unlatch and drop its heavy panel. It’s only day two since the last big fist of lightning struck his brain—a smattering of smaller ones in-between—so I crack open a vial of rectal Valium and inject the mind-numbing gel to calm the storm, to break the chain.

As the spasms wane, I kiss my boy's neck and face. The dull ache in my head, like the thunderbolt is real, not dream. I throw back a couple of aspirin and climb in with my son. I rest my hand on his chest to feel its shallow rise and fall and, sometimes, feel its pause. When the clock strikes five, still dark outside, I think about the row of curio shops lit up in the night, and I wonder about the handsome Asian boys I dreamt about, and I wish I could unearth some magical potion that could help me harness the fists of lightning that plague our nights and raid my dreams.

Photographer unknown

going nowhere

When I graduated from college my parents gave me a set of luggage because they knew I had a desire to travel, both for leisure and, hopefully, once I landed my dream job. I moved home, worked an odd job saving everything I earned, then backpacked through Europe for seven months by myself, visiting nearly every Western European country, stopping and working in Paris for a month, and dipping into Turkey for five weeks. Two years later I returned to revisit Greece, explore what was then Yugoslavia, spent a weekend in Budapest then joined my brother, Matt, for a four-week adventure in Tanzania, Kenya and Egypt. My entire trip lasted two months. Ten years later, I revisited some of the same people and places that I had fallen in love with on my first visit to Africa.

In my early thirties, I finally landed my dream job designing apparel, which took me often to New York City, a time or two to London, and to Seoul and Hong Kong. Then, the year before Calvin was born, Michael and I explored Brazil for three weeks, the country in which he once lived, long before we met.

My desire to travel runs deep, perhaps, in part, because I’ve always been attracted to “other.” I have a passion for ethnic and exotic foods, for the hustle and bustle of crowded plazas, for the melody of foreign languages, for the customs, sights, sounds, music and aromas which are unique to different people in different parts of the world, for the beauty, love and wisdom in unfamiliar faces, for the kindness of strangers, some of who took me into their homes.

But since Calvin’s birth, and more so since we began treating his epilepsy with cannabis oil, I’ve been unable to travel much. In the past five years, I’ve been once to my high school reunion in Seattle, once to New York City for less than twenty-four hours, and to LA/San Diego for four brief visits with my mother who was in the thralls of Alzheimer’s until her death last October. It has been over a decade since I’ve visited what was once my beloved home for as many years: San Francisco.

In these past five years I’ve ventured virtually nowhere fun with Calvin and Michael; we can’t take Calvin out of the state because of the absurd and hypocritical federal prohibition of cannabis, even for medicinal purposes. Besides that, Calvin would be nearly impossible to find safe sleeping accommodations; he’s too big for a crib and he’d fall out of a bed and/or get out, fall and hurt himself. The kid is a veritable accident waiting to happen. I’m kind of amazed he’s made it this far.

In that time span, Michael has traveled and photographed in Virginia, Georgia and Pennsylvania for weeks at a time. He was gone for nearly a month when he drove all of his equipment cross-country to Los Angeles and back to photograph its famous river, stopping briefly in Albuquerque to visit friends. Last fall he spent ten days away on a faculty research grant shooting photos of Hawaii's parks and plastic beaches. He’s scouted, photographed and fished in Idaho and Wyoming and spent three weeks at an artists’ residency in Virginia. This fall he will fly to Verona, Italy to oversee the printing of his forthcoming photo book on rivers, and next spring he’ll be in Paris for a three-week residency and a solo show of his work. I don't resent him. Quite the contrary. I am thrilled he can make these things happen and that I can help. I just wish I could go with him.

As for me? I’m going nowhere. Calvin is too complex and difficult for others to care for long-term, and we can’t take him with us, in great part because of cannabis laws. He's even difficult to take on local day excursions because he isn't able to walk around by himself and often balks at doing so with our help.

My high school reunion is in September, but without a nurse to help Michael, I’ll have to miss it for the first time in thirty-five years. And though I dream of heading somewhere—anywhere—with Michael, and even with Calvin, I don't think it will be possible for me to travel in the foreseeable future.

But as I write this I realize I sound like a whiner. I say that because I sit here at my desk looking out on a gorgeous garden of my making, dotted with fragrant blossoms, bees and birds. I realize how ridiculously fortunate I am to live as comfortably as I do, and to have once had the privilege of traveling far more than a lot of people do. I realize, that from my own little hunk of this world, I can imagine, dream and create. I can pour my passions onto "paper" and into the earth. I can remember all of the exciting places I’ve visited, and recall the interesting people I’ve met, from Alaska to Amsterdam, Rio to Rome, Lisbon to Louisiana, Madrid to Mt. Kilimanjaro, and Belgrade to little, old Brunswick, Maine.

wild blue open

The May Maine morning was hotter than expected, near eighty by ten o’clock. Nevertheless, I took my son by the hand to go watch some of the commencement ceremony, in which Michael was reading the names of some of the graduating seniors. When Calvin walked from home all the way to the college quad, albeit begrudgingly at times, I thought it might be too good to be true; he’s only accomplished that a handful of times. Once there, we perched on a grassy knoll in the shade of an old brick dorm, and gazed out over a crowd of students and parents melting in the heat. As I fed Calvin grapes, a woman approached with her young son. She took off her sunglasses and reintroduced herself to me, reminding me that we’d met at the grocery store some months back. She expressed her interest in my blog, then said a soft hello to Calvin, whom she’d never met.

“I’m stalking you,” she joked, half-seriously, referring to her devotion for Calvin’s story, then added, while clutching her hands close to her chest, “You have my heart.”

We chatted a bit about our boys, about school, about the college—her Alma Mater—and about living in Maine. I told her that the move from the West coast, specifically San Francisco, had not been a seamless one for me, noting that something about the Northeast feels slightly oppressive compared with the wide blue open of the West, but then adding that Calvin might be a main ingredient.

In time, Calvin became restless, so I took his hand to venture home when I saw a familiar face, our dear friend Macauley. He came over, gave me a hug and offered to walk us home. I showed him a secret way to our house, past the college’s organic garden and through a narrow field. Stepping between trees into our back yard was like stumbling into an oasis, splashes of pink, scarlet, lavender, milky yellows, and white petals floating in a fragrant sea of lush greens. At that moment, I realized that having this garden—creating it the past twelve years—has aided in my transition.

Calvin’s afternoon, while not his worst, was peppered with manic outbursts, stubbornness, tantrums and a refusal to drink or eat. I’d noted in his journal his restlessness, agitation, crying for no known reason, and his rashy skin, adding, seizure coming.

Though asleep, all night our boy was unsettled and seemed in some discomfort. The room was hot, so we opened a window to let the breeze brush past his skin. Sometime after two a.m. I dreamt of Calvin seizing while I was cradling him. I couldn’t lift him off of me to get his rescue medicine, so I cried out in vain to the others who were sleeping in the room, “Calvin is having a seizure!” Michael woke me from my nightmare, but sleep soon returned me, and I went on to dream of a bruised big toe which he'd broken during the fit.

Twenty minutes later, at three o’clock, I was awoken again, this time by Calvin’s wretched seizure scream. I followed my recent protocol: put frankincense under his nose and on the bottom of his big toes and applied pressure to the balls of both feet. When the seizure stopped I gave him his morning benzodiazepine three hours early and chased it with drops of water. Then we changed his diaper and watched him fall back to sleep. Even so, my efforts failed to prevent a subsequent grand mal some hours later, for which I administered rectal Valium. It took a while for the drug to work, during which time my boy convulsed quite violently in his bed.

Afterward, I wondered if I’d pushed Calvin too hard in the heat that day. I wondered if I should’ve given him extra cannabis at midnight. I wondered if there was a low-pressure system moving in, wondered if we’d be headed to the hospital again. And then I fell back to sleep thinking of those graduates, some of whom remind me of how Calvin might've been. I drifted off thinking of our wonderful network of friends and supporters, thinking of the closeness of the heat and the budding of the trees and shrubs in my oasis, and thinking of the pride I feel or an odd little boy who will never go to college, but who walked with me beyond his comfort zone, out in the wild blue open, which is more than a lot of people can say.

Photo by Michele Stapleton and Angie Devenney