holding onto hope

i'm holding onto hope ...

hope that calvin can continue his seizure-free days past thirty-six. hope that somehow we can get him—once and for all—off of the bloody keppra. hope that his body will one day settle into something approaching calm. hope that he isn't feeling pain, hope that he stays well. hope that eventually, within our lifetimes, someone will find a cure. hope that at some point i don't ever again have to watch him seize.

i'm holding onto hope ...

hope that i can continue to run on the trails and roads, to feel its freedom, the sun on my face, the wind through my hair and the sound of it through the treetops. hope that i stay healthy and fit for many more years. that i remain young at heart (though that isn't really a worry.) that i remain injury free. that i can keep taking care of calvin, at least for the time being.

i'm holding onto hope ...

hope that calvin's school goes forward to be a safe and welcoming place where his typical peers continue to gain insights from his presence and energy. hope that more people in this world and nation begin to value difference and diversity. hope that young people keep learning the truth about this nation's full and true history. hope that everyone can get a bit away from their gadgets and, instead, get back to communing with nature.

i'm holding onto hope ...

hope that women won't lose the legal right to be equal citizens in this nation. that people can agree that healthcare is a goddamn human right for everyone. hope that the separation of church and state holds (at least to the extent it does.) that more and more people vote, and are not burdened by difficulties or dangers accessing the polls. that the election is free and fair. that people honor the outcome. that people stop believing the lies they are being told about a so-called stolen election. that extremists and liars lose. that violence doesn't rise up, but if it does, that it is quickly quelled. that democracy holds.

i'm holding onto hope ...

that one day leaders, and others, of this beautiful world will put aside their egos, their fetishes, their power lust, their deceit, their bombs, their guns, their crowns and swords.

road to recovery

On Wednesday morning, my son was wheeled into the operating room of our local hospital. Michael donned a bunny suit, cap and booties to accompany him until the anesthesiologist put Calvin under. Standing in the hospital room alone, looking out into the woods—a very similar view to the one we had when Calvin and I boarded in the labor and delivery ward for several weeks after Calvin was born—I felt a bit incredulous. Incredulous that my sweet little unassuming son was being drugged up, cut open, muscle splayed apart, femur drilled and fit with three stainless steel screws, all because of a regrettable accident at school the previous week. I was living one of my worst nightmares as the parent of a child who, despite his inner and outer loveliness, has already been the source of so much angst and grief.

The surgery lasted far longer than we expected, and therefore was a bit of a nail-biter. Michael and I sat in silence, my mind racing to all kinds of places that no parent wants their thoughts to go. But the good news is that the surgery seemed to go well, and it was lengthy because the surgeon had, in his own words, obsessed about the placement of screws in Calvin's wonky anatomy. He told us that Calvin could put weight on his leg whenever he's up to it! We were astonished, having been told earlier that Calvin would likely be confined to his bed and wheelchair for up to six weeks. More good news came later that day when we realized we didn't have to spend the night in the hospital, a place we don't relish for a number of reasons that could fill a blog post or more on their own.

To add insult to injury, that night Calvin had a seizure, which we had seen coming while in the hospital. Like all of his seizure of recent years, it stopped on its own, and we were able to thwart a second one by giving him extra THCA cannabis oil. We managed his hip pain with alternating doses of ibuprofen and acetaminophen and with half a tablet of oxycodone when it seemed, by Calvin's moaning, that the others weren't sufficiently doing the job. Obviously, none of us got much sleep, but we rested better than if we'd been in the hospital.

Through all of the trauma since Calvin's fall ten days ago (seems like eons), many dears have shown their love, concern and support. We had dog walkers for Smellie, and received all kinds of goodies—cards, bottles of wine, flowers, cake, dinner, homemade negronis, stuffed animals, homemade cookies, bread, and other treats. And we got hundreds of loving messages from friends, acquaintances and strangers, and offers to bring food to the hospital. The outpouring of support has been incredible.

This morning, Michael and I got Calvin out of bed. With great help from both of us—Michael supporting Calvin's body from behind, and me in front holding his hands—our boy took three very shaky and tentative steps. A little smile crept across his face as if doing something novel or accomplishing something great. We sat him down on the soft carpet in our bedroom where he crawled a few yards, his left knee turned slightly inward. Once more, we got him into a stand, but he held his leg off the ground as if lame, so we scooped him up and put him back into bed, lavishing him with praise for having done such a good job. Hours later, I hoisted Calvin out of bed to change his diaper, then stood him up for a moment, bracing him. He didn't want to put his foot down and appeared not to be able to bear any weight on it, so I lifted him back into bed again where he remains and is resting.

If today is any indication, Calvin's road to recovery looks like it might be a long one after all. I worry he won't get back to walking as well as he did before the accident, which, though his gait was awkward, he could get around to a great extent by himself without falling or tripping on his turned-in feet. I worry he might be in pain without being able to tell us. I worry he'll regress in other ways. I worry about future accidents. As for going back to school next week, it doesn't look possible without a wheelchair, which would mean the staff would have to do a lot of transfers from chair to changing table and back again. There's plenty of other things to consider—the state of his incision and protecting it, his strength, his stamina, his safety, his ability to heal and rest, his happiness, the risk to him.

This incident has been disconcerting and stressful, and has given us a lot to ponder. But, it has also been a cause to celebrate our good fortune—for our healthcare, our community, our home, our family, our friends and neighbors, for each other.

Yes, the road to recovery might be a long one, but one thing is clear: none of us will be walking it alone.

longer stretches

Hours before dawn, I curled up next to my son for the second morning in a row as he shivered and shook in my arms. After the last increase in Calvin's new medication, Xcopri, he went two weeks without any seizures at all, which is a decent stretch of recent. It seems, however, that he has a pattern of going for "longish" seizure-free stretches, followed by one seizure, then going for another longish stretch, only to have a cluster of two or more seizures. In effect, he doesn't really seem to get ahead in terms of fewer overall seizures, which, of course, is the goal.

Witnessing Calvin seize is always distressing. Each grand mal—the kind he most often has—starts with a blood-curdling shriek or howl, which sounds as if he has seen something absolutely terrifying or is being murdered. I can't describe it any other way, but it's a horrifying sound to come from anyone, especially one's own child. As it happens, Michael and I jump from our bed (the seizures almost always happen in the middle of the night) unhook and unlatch Calvin's safety net and bed panel, then kneel down next to him. Michael gently holds Calvin' hands and offers him reassuring words as he convulses like, good job Calvin! in an attempt to help slow it, while I make sure Calvin doesn't break his toes kicking the wooden lip of his bed. About ninety seconds later, when it is over, we watch the color come back into his dusky fingers, toes and lips. It takes Calvin several more minutes to totally catch his breath owing to fluids and/or soft tissues that seem to periodically obstruct his airway. Then, when that trouble has passed, I syringe a milliliter of my homemade THCA cannabis oil into the pocket of his cheek in tiny bits; this seems to prevent a second seizure from occurring after he falls back to sleep.

I'm sitting here now wondering if last night's storm and low barometric pressure had anything to do with triggering his fit; it does seem like they are sometimes weather-related. In any case, he's not really well or strong enough to get into the car for a ride. He's also restless, on and off the couch, and not eating much to speak of. But, he is doing better than after yesterday morning's seizure, which is encouraging, though I wouldn't say he's out of the woods yet.

We increased Calvin's new medication again last night, but it will take a week or two until it reaches what's called a steady state, that being a higher constant level in his blood. I hope he doesn't begin to suffer badly the side effects the drug is mostly known for, which is dizziness, major fatigue and lack of appetite. It is hard enough keeping weight on this kid.

So for now, we will hunker down at home listening to music and to the snow plows and blowers outside. I'll get outside with Smellie for another walk in the woods when Michael gets home from working in his studio. I'll sit on the couch in the sun writing, and I'll dream of springtime and flowers and of longer seizure-free stretches for my kid.

In the wake of a seizure, April 2020

the clamdigger

On last Friday's back roads drive with Calvin, I stopped at the cove that opens into Maquoit bay. The skies were dark, the winds were frigid and the mercury was beginning to plunge. Nonetheless, a lone clamdigger, a large, clean-shaven man perhaps not quite young enough to be my son, was putting in his airboat. I took a few photos before he launched his craft, then asked if he were going to go out the following day despite the forecast of single digits and windchills as low as minus nineteen degrees. He flashed me a handsome grin seeming to understand my worry, and assured me that he wouldn't.

As Calvin chewed his sock in the back seat, I watched from the car as the clamdigger boarded his boat, revved it up, then glided across the icy inlet as if riding a giant hockey puck. I wondered how he would keep his hands warm while sinking them into the freezing-cold muck. I couldn't imagine he'd feel his fingers for very long, even with gloves. I wondered how long he'd been a clamdigger and if it were his only livelihood. Life is hard, I thought, while considering the clamdigger's back-breaking work in all kinds of harsh conditions, and then of Calvin's daily and lifelong struggles and miseries. I silently wished the clamdigger a big haul in return for his tremendous effort.

Later on and well past my bedtime—which is often as early as seven-thirty or eight due to frequent sleep interruptions from Calvin—I watched from the bathroom window as some friends delivered a big piece of the ice cream cake that I had gifted to another friend for her husband's birthday party. Having been guests at the small celebration, they were given the foil-wrapped hunk of cake by the host to leave on our porch so I could taste some of it later. A few minutes before they arrived, the wind and Calvin's whimpers had woken me, and so I had gotten up and covered him (he can't do that by himself), then went to pee and get a drink of water. With a clear view to our driveway from the upstairs bathroom, I had seen them pull up. Watching my friend Stephanie brave the bitter, gale-force winds while trying to avoid patches of ice on our driveway made me appreciate her and her husband's effort, especially considering it was late enough they probably would have preferred to zoom straight home from the dinner party and crawl into bed themselves.

I tiptoed again through Calvin's room into ours and slipped back into bed with Michael (the ice cream cake would no doubt stay frozen outside.) Wide awake, my mind drifted from one angst-laden hope to another: that Calvin's seizures would someday soon abate; that his new medicine would begin working better than it is—if it is; that none of us comes down with Covid; that on Tuesday, Calvin's school will really reopen after eleven long days of having him home with me, both of us going in circles; that I can start running again in earnest; that more folks will get their vaccines and boosters; that this virus doesn't mutate into worse versions; that hospitals and their staff can soon catch a break; that people can get back to work; that more Americans decide to start protecting each other instead of being so small-minded and selfish; that voting rights legislation will pass despite despicable, unthinkable, partisan obstruction.

Lying in the darkness, I wondered again when so many Americans became so indifferent to the health and well-being of others—those in their community, their friends, their neighbors, their own kin. I wondered why some people insist on thwarting proven public health measures such as wearing masks in public during a goddamn pandemic. I mean, seriously, what is there to prove? Some twisted notion of freedom to do as one pleases despite posing grave risks to others? Some hackneyed belief in the myth of rugged individualism? Dude! Exactly no one accomplishes anything on their own, which made me think of my many friends who support my emotional well-being with their small kindnesses—flowers, cards, books, homemade goodies, entire dinners, phone calls, champagne, oysters, homegrown veggies, smiles, waves, hugs, love, and all kinds of cake. I thought, too, about the mailman and the grocery store clerks and the bookstore owners and Calvin's primary care provider and neurology team and teacher and aides and bus driver and therapists. We all rely on each other for sustenance. We're in this together. We need to look out for each other.

Then, I thought again about the clamdigger, who works in brutal conditions so he can pay his bills by peddling his harvest to restaurants for their patrons. In a previous life, despite being a stranger, zany me might have asked if I could join him. I'd have learned something new, might have lightened his load a bit and perhaps even made a new friend. Who knows?

Two hours later, as I finally began to unwind, I went to sleep hoping: that the cold snap would break soon; that my gifted ice cream cake (cherry chocolate fudge brownie with a coconut twist) was a big hit; that we can soon begin to see friends indoors again; that spring will arrive early; that the clamdigger made it home safely, and that his hard work, plus the care and help of others, keep him warm and dry, fed, healthy and loved.

Maquoit Bay

impressions

i wake to the sound of rain. it came down last night for a good long time. drenched everything. the windows were open, but the wetness stayed out—pitter-pattering on leaves, soothing some of my sorrows, quenching the earth. somehow offering hope. a clean path forward.

it's half past nine. the house is still and quiet. the sky is white. calvin's bus pulled to the curb a couple of hours ago. thankfully, he got on it. yesterday, my in-laws headed south. it was a good visit. two years passed since we'd seen them. damn pandemic.

i slip into my rubber boots and clip smellie on the leash. once at the fields, i let her run free.

watching her go, i think about greens—these grassy expanses, my eyes, the pretty garden, the boots on my feet, my inexperience way back when with a newly-diagnosed epileptic kid. my initial naivete about doctors, hospitals and drugs. his first benzodiazepine when he was just three years old. enough to make me sick.

i think about time and numbers—three a.m. wake-ups. a week and a half since my son's last grand mal. four days of unbearable mania. one exasperated mama. several meltdowns (mine and my child's.) three long car rides to relieve our misery. one school day left until july twelfth. seventeen years of living with this tragedy, loss, fear, dread, pain, frustration, resentment. relatively few happy, calm, relaxing moments with my child. his limitations and halting progress. his impossible behaviors. the intractability of his seizures.

the elixir is always forgiveness.

i think about spacetime, motion and experience—the smallness of a room, house, or car, even when it's moving. the medical and drug information packed inside this weary head. a sorry situation with little room to adventure, roam or travel. countless promises of parenthood unfulfilled or broken. infinite nagging questions, most of which don't require answering. space only to dream and remember back when life was so very different, back when i was wild and untethered. i remember a conversation and subsequent blog post i wrote about freedom. i wonder now if impressions are any different.

i think about bittersweet images—seniors in caps and gowns holding their diplomas, proud parents beaming. little swimmers wading in the bay. campers and travelers taking weekend trips. sunbathers at the beach whiling away the hours. hikers ankle-deep in fields of buttercups or at the edge of a precipice. teenagers bicycling or taking driving lessons. empty-nesters sitting in the shade reading books.

as i cross the grassy field, i turn to see a single trail of darkened footprints. they weave and loop where i've swerved and circled. i look down and snap a photo. except for smellie, i'm alone. i'm grounded, yet can move willingly and with purpose. i consider the serpentine path in my wake. it's fixed. cannot be erased. and then i eye the clear expanse before me. it's green, untouched and wide open, awaiting my singular impression. my arrival, no matter which turns i take.

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.

heartening

We had seen Calvin's seizure coming for several days. At five o'clock yesterday morning it finally arrived with a godawful, blood-curdling shriek. I half expected it to last a long time considering it had been seventeen days since his last grand mal, but it was the usual ninety seconds. Afterwards, so as to monitor his breathing, I got in bed with him. Though still little for his age, he's big enough to spoon. For an hour, I held my boy as he shivered and twitched in the wake of the fit. 

Thankfully, by late morning he seemed well enough to go for a car ride. I chose to drive the close-to-home loops in case his condition went south. At Simpson's Point, the bay was socked in by fog. Within minutes of our arrival, though, it began to lift. I took it as a good omen that things might be looking up.

Despite my son's chronic condition amid pandemic miseries, I've been heartened by other events of late: the ongoing efforts of some amazing people to get Calvin vaccinated sooner than later; vaccine appointments for me and Michael this coming Saturday; the promise of longer, warmer days for gardening and barbecuing; an offer by Calvin's already-vaccinated former aide to help take care of him in the coming weeks; a seeming decrease in Calvin's overall seizures; cardinals announcing themselves on the tops of trees; an unforeseen and out-of-context greeting with the Carhart three-dog walker smiling and bicycling past me and Smellie as we strolled down our street; a serendipitous and safely-distant yet close encounter with the runner as he rounded a sleepy backroad corner. With my window down and the heat on (an alternative version of underwater respite), he paused his workout and kindly asked how Calvin was doing (he has been reading the blog.) Calvin was in the backseat trying to eat his sock.

After my late-afternoon walk with Smellie, I sat on the front stoop for a spell to watch the world go by. I could hear Calvin stomping around inside the house with Michael; I was thankful to be off-duty for awhile. As cars and folks passed by, I found myself missing my old friend Woody. His porch—high, broad and covered—was so much better for people-watching than mine, plus it came with Woody. We'd sit there for the good part of an hour. Sometimes we'd say nothing at all. Mostly, we'd tease each other or talk about the mundane. Other times he'd listen to me grieve about my little Calvin, at times wiping my tears away. Once in a while, we'd grasp each other's hand from opposite sides of the Adirondack-style bench his son had built for him. He'd tell me that I was the best thing to happen to our street. I'd say the same thing about him. Sometimes his eyes got misty. He would have turned eighty-nine this July. It's heartening to think of him.

Sitting alone on my porch, I studied a slightly irksome, partially obstructed view of the street which I found strangely unfamiliar, considering it's my home. Feeling dissatisfied, I was about to retire indoors when I gazed upwards. There, in the clear blue, I saw the half moon, white as can be like an inverted cup in the sky. It was framed by thousands of little red buds fattening up on the branches of our maple tree. Yet again I felt heartened, this time by the unmistakable arrival of spring.

Simpson's Point

in the dead of winter

Just another Groundhog day in a runaway pandemic—cooped up with a nonverbal kid who suffers a severe and chronic condition. Waiting with bated breath for a covid vaccination. Unsure why our son's not yet able to get it. Feeling the need for a shot in the arm myself, both literally and figuratively. This pandemic has laid hardship on top of hardship. Everyone has their struggles, is treading water in some way. I ache to see familiar faces, to hear from people, to touch and hug loved ones. 

Driving around to pass the time, which has expanded like elastic in this pandemic. Creeping along at twenty to thirty miles an hour drinking in the scenery. Studying the colors of a cloudy day in the dead of winter: white, jade, chestnut, charcoal, stone, pine, pewter, juniper, straw, bronze, rouge. Subdued yet beautiful. I must remind myself to be mindful. Appreciate the mundane details. Especially in February in Maine.

Turning up the volume on songs I grew up with and ones much newer. The musicians croon about love, heartache, dreams, loss. Sometimes I sing along until my throat feels swollen. The tunes send my mood up and down like the lonely roads we travel along. There are moments when I feel like weeping. Sometimes I do. Life is a roller coaster. So many hills and hollows provoking excitement and unsettling feelings, yet seemingly leading nowhere. I even keep writing about the same humdrum stuff hoping to glean or give something new. Not sure if I do. Still, life can be fascinating in its surprises and challenges. And at least I can still dream and feel deeply.

I reach back to give my son a grape and he grabs my hand just to hold it. A smile spreads across his face. Even with his fuzzy little mustache, he's cute. He's in a good mood despite the grand mal he had two mornings ago. For the former, I am grateful. The latter can go to hell.

Thinking about yesteryear, I get a text from a dear friend whose wedding I was in twenty-three years ago. Another lifetime. Back when days seemed more fluid, pliable, full of hope and opportunity. Back when the California sun made getting out and around so much easier than here. Maybe I'm fooling myself, but I don't think so.

In the dead of winter with another storm looming, the optimist in me sets my sights on warmer weather. We're headed in the right direction. At a crest in a snaking lane I look to the horizon over a body of water and see a section of sky where the sun glows through. The water is nearly the shade of a tropic lagoon. Blue and green, colors of spring. The time when bodies thaw and can move more easily. My brother tells me we may be seventy percent through the pandemic. Like me, he sees the glass half-full. Maybe it won't be long until Calvin goes back to school. Maybe soon I'll be able to escape these four walls for some sort of adventure or comfort. Maybe soon I can work in the garden. I'm aching to dig in the earth, to mow the lawn and prune. Maybe it won't be long until I'll see old friends and make new ones. Maybe one day soon I can stand face to face and embrace you.

hope for tomorrow

Today was a rough one with Calvin. My patience tested, I feel emotionally battered. And yet, today feels markedly lighter. Tonight I wager I'll sleep better. Days are getting longer. The future looks at once brighter. Words like unity, light, renewal, democracy, decency, optimistism, give me hope for a better America. Rhetoric matters.

Tomorrow, I will worry a tiny bit less about the pandemic. I'll fret less about loved ones' safety, well-being and healthcare. I'll have more faith that social justice is coming. I already feel great relief seeing the mouthpiece of greed, deceit, selfishness, contempt, conceit, hatred and division fade in the distance. I'm eager and excited for a return to decency, experienced governance, sound thinking.

Last night I watched the documentary Crip Camp, about a summer camp for disabled children and adults in the 1970s. Through much of the film I wiped away tears. Scenes of institutionalized disabled children—hungry, half-naked, neglected—are raw and deeply disturbing. Other scenes of people pulling together and helping each other are uplifting. Unforgettable, too, are the scenes which show paraplegic kids and adults abandoning their wheelchairs and literally dragging themselves up the steps of the Capitol to protest inequality—the same steps on which, two weeks ago, smug Americans, most of them White men with a false sense of entitlement, staged an attack on democracy.

At today's inaguration, I saw a man with a stutter assume the presidency. I saw a uniformed, Black female fire captain recite the pledge of allegiance in English and sign language. I saw the youngest poet laureate recite her gorgeous words from the inaugural dais. I saw the Nation's first Latina supreme court justice swear in the Nation's first female, Black, South Asian vice president. 

Even as my son still seizes, and at least two Americans die from Covid-19 every minute, and the chill of winter is still gripping, the Canada geese are heading north. Spring is coming. I feel great hope for tomorrow.

twenty-twenty-one

twenty-twenty-one falls easy on the ears. the softness, in part, might be in its numerical oddness; evens have always felt hard-edged and unforgiving to me. in black jack, twenty-one is a lucky number. maybe this year will be a winning one, a year to celebrate and remember. with luck—and numbers—some of the conceited losers bent on greed and grift, apathy, deceit and bigotry will fade in the rearview mirror and become nothing more than a bunch of pathetic has-beens. maybe 2021 will shape into one of hope and light, unity, decency, honesty, selflessness and, perhaps most of all, justice.

as in every year, i hope for my son to outgrow his seizures. maybe this year will be the one. he's doing pretty well—seizing less, walking, sleeping and acting better, practicing using the potty and getting in and out of his bed with less help. despite the pandemic and its limitations, life is easier than when calvin was little, back when there was so much dread and angst, sleepless nights and weeping. he'll be seventeen in february; my body, heart and mind have felt every last minute of it. in our case, time has not flown by. but that too has its advantages.

michael has shoveled snow only once so far, and we've had two complete thaws. it's always good to see the green. hopefully it will be a mild winter. at the fields yesterday, i saw a blue heron flying low and graceful. i wonder why when i spot them they're always solo. when they take off, where do they go? a bunch of ducks paddle and squawk in a pond half iced-over. smellie would love to sink her teeth into those soft bodies. iridescent feathers everywhere. a chain-link fence keeps her from getting to them. they don't know how lucky they are.

it'll be forty years since i graduated high school. perhaps i can gather with some alumni to celebrate this summer. seattle is gorgeous june through september. i have so many loved ones living there—some from childhood, high school, college, plus a couple I met while living in san francisco.

the backyard garden is shaping up to be glorious. better than ever. the rhododendrons are encrusted with buds. the evergreen azaleas, whose buds appear later, show promise. as always, i have hope for an early spring. for this west-coast gal, spring—and 2021—can't come soon enough.

hope for my america

my america is gorgeous. it lives up to its original promises. it is inclusive and, like the universe, is ever-evolving. it refuses to fetishize the evils, abuses and inequities of white nostalgia. it's hopeful, open, well-educated and well-informed. it's full of folks who are wise, charitable, courageous, righteous, curious, ingenious and brotherly.

my america is welcoming, kind, and loving. Its people admire and embody honesty, humility and decency. as someone once said, it leads by the power of its example rather than the example of its power. in my america, leaders are driven by truth, compassion and a great desire to unite the rest of us for the common good.

in my america, everyone recognizes that success is not achieved in a vacuum, where bootstrap and rugged-individualist theories die on their mythological vines. it's where people appreciate that their triumphs are won only through the help of countless others—the banker, the paver, the farmer and harvester, the meat packer, truck driver, garbage handler, builder, baker, coffee roaster, bagel maker. in my america, the empathy gap and the chasm between the haves and have-nots narrows instead of widens, and workers are not exploited, rather, they share the fruits of their labor.

in my america, women and people of color occupy a majority of the seats in boardrooms, executive offices, faculties, courts and cabinets, embassies and halls of congress. in my america women occupy the oval office. in my america, racism, discrimination, xenophobia, misogyny, bullying, abuse, harassment, rape and femicide are things of the past. in my america, women, people of color, lgbtq people and their works are proportionately represented in monuments, art museums, literature, film, theater, music and television.

though i'm no christian, in my america, people who claim to love jesus actually embody his teachings by loving, accepting and serving their neighbor—whether gay, straight or transgender, muslim, jew, atheist, native or african american, latino, asian, citizen, immigrant or refugee—and by feeding the poor, housing the homeless, healing the sick, casting no stones.

in my america, women have control of their own bodies.

in my america, syphoned funds from a bloated military are injected into education, healthcare for all, childcare, infrastructure and housing. in my america, no one is the victim of police violence or profiteering, there are no private prisons, people imprisoned for possessing small amounts of drugs are released—their records expunged—and capital punishment is forbidden.

in my america, our sordid history is taught in schools, not scoured and whitewashed like it has been for decades, if not centuries. it's a nation where symbols of the failed, treasonous confederacy are toppled once and for all. it's where monuments revere heroes of noble and just causes, and memorials honor victims of atrocities. in my america, we are moved to feel remorse for the crimes of our forefathers, and to atone.

in my america, those who are fleeing war-torn, starved and violent nations are welcomed here with open arms; we have room for them.

in my america, people see the value of—and work to protect—each other, particularly the vulnerable, including people like my son calvin, who in so many ways is one of the best americans i know.

today, my america feels within reach.

Rangely, Maine

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!

gift givers in a pandemic

In the months since the pandemic began, we've received all sorts of gifts from friends, neighbors, Michael's former students, childhood buddies and perhaps even strangers: a framed painting of Smellie, a pot of paperwhites, bags of homegrown tomatoes, green beans and white cucumbers, tiny raspberries and strawberries, garden bouquets, a photographer's self-published book, fancy beers, black trumpet mushrooms, kerchiefs and clothes for Calvin, dozens of oysters, fragrant eucalyptus fronds which remind me of San Francisco, jars of peanut butter and honey, bottles of rye, bourbon, wine and bubbly, homemade liver pate, artisanal loaves of bread and cheese, orchard apples, apple pies, dog treats, carrot cake, caramel chocolates, coffee, homemade granola, soup and spice cake. Have I forgotten anything?

No doubt these lovely gifts and their givers have lifted my spirits in the midst of hard times taking care of a teen who can do absolutely nothing by, or for, himself. Sometimes, I get a glimpse of the gift givers, but can't always catch them before they disappear. Other times, I visit with them for awhile from the porch as they stand at least eight feet away, often wearing a mask. No doubt for years, the love, affection and caring from friends and neighbors has sustained us. We are part of an amazing community. I've heard it said that it takes a village to raise a child. The fact that we are still here and in relatively good condition, despite the clusterfuck (sorry Gma) that is epilepsy, is a testament to that adage.

In the midst of this rampant pandemic, I feel doubly grateful to live in a state that is doing a good job of controlling Covid-19 levels. In my town and in nearby ones, I see most folks wearing masks in public. The first-year college students at Bowdoin are probably setting the best example, wearing their masks outdoors in groups or putting one on when they pass me on the sidewalk, fields or trails in the woods.

Nearly ten months into this pandemic, cases of coronavirus are rising in almost every state of the nation. Yet weekly, I still hear interviews with people who balk at the notion of wearing masks in public, despite the overwhelming epidemiological evidence that masks are one of the best methods to stop the spread of the virus. Don't they understand that by not wearing a mask—whether they feel healthy or safe or somehow immune—they may be endangering the well-being and lives of others?

Like gift givers, we wear our masks for others more so than for our own protection. That's how it works. Regrettably, mask skeptics cling to the selfish narrative that we all have to take personal responsibility for staying safe from the virus. But, as Americans, isn't our responsibility to be accountable for each other? Isn't that what community means—having each other's backs, watching out and taking care of one another? That was what New Yorkers did when the Twin Towers were attacked on 9/11. It's what people did in the wake of hurricane Katrina. It's what demonstrators of every color, class and creed are doing to protest police violence against Black people. It's what folks are doing during the Western wildfires. We are at our best when we help each other. Why should a threatening, runaway and lethal pandemic that has killed over 220,000 Americans be any different?

Some in this nation still stubbornly subscribe to the myth of rugged individualism and its regrettable mantras such as Every man for himself and Don't tread on me. They insist that the simple act of wearing a mask infringes on their personal freedoms or think that it's somehow a sign of weakness. Whatever happened to the notion of personal sacrifice for the sake of others? How did it come to pass that some well-off Americans value their 401Ks more than their fellow Americans' hunger, homelessness, poverty, illness, injustice, everyday struggle? How did a chunk of our nation's people become so hardened, thoughtless and reckless at the expense of their neighbors?

I like to imagine an America in which we are all gift givers: where we unconditionally help the vulnerable and those less fortunate than ourselves; where we help those who find themselves in a bind, unemployed, on the streets, needing a second chance; where we wear masks so that we don't unwittingly infect other people. Just imagine an America where compassion, support and understanding for others reigns over selfishness and petty indignation. We should help each other get through these hard times.

double whammy

Wednesday night Calvin suffered another double whammy: a grand mal at 7:30, then another one at 1:45 a.m. I had meant to get up at midnight to give him an extra dose of THCA oil hoping to avoid the second seizure, but since Calvin slept soundly in the wake of the first one, forever sleep deprived I snoozed right through.

In eight days Calvin suffered eight seizures (four grand mal and four focal ones.) It's not a good spate, and he remains lethargic with little appetite. I can see he's losing weight. As I laid next to him yesterday morning for hours, my mind raced over so many vexing thoughts and unanswered questions:

is this the anemia? is he oxygen deprived at night? is the calcium in the yogurt i give him at bedtime blocking the absorption of his antiepileptic medications? is the iron supplement triggering his seizures or causing some other stressor? should we try the palmetto harmony cbd oil again? it worked so well for a time. should we consider another antiepileptic pharmaceutical? would the drug treatment be worse than the seizures, like it has been in the past? would he succumb to their dangerous and troublesome side effects, some of them lethal? will we ever get our relatively lively boy back again? is he somehow slowly dying?

I imagine that last question might come as a shock to some of you. But this is how we—the mothers and fathers of children with epilepsy and other chronic and acute conditions—think. I remember a time when Calvin, because of a high dose of a powerful antiepileptic, didn't smile for a year. I feared I would never see his cute, dimpled grin again. I remember a time when I cried every day with a child who had become a raging little monster. I remember a time when Calvin was two when Michael and I sat next to his hospital bed preparing for his death during a forty-five minute seizure that wasn't responding to emergency medication.

Today, again, I lay with Calvin on the green couch as he catnaps. We have walked outside only about once in over a week. Thankfully, from our cozy spot in the corner of the house we can see the garden and all the lovely trees in their yellow, chartreuse and orange glory. An unknown donor dropped off some soup and cake yesterday. It's raining and the rhododendrons are super happy. The house is quiet. I'm optimistic about a sea change come the election. I have hope for the future, despite these double whammies.

a familiar hangout

necessary cleansing

the change of seasons makes me feel more deeply—sometimes hopeful, at others anxious, melancholy. damp winds chill me to the bone. sudden downpours thrill me. popping embers keep my feet from going numb. i muse on shadows from a setting sun. i look around—at the garden, at the sky between the clasp of trees—and wonder if this will be my final home.

amid the raging western wildfires, skies glow orange, red and ocher. miles away, eyes weep, bloodshot, weary and sore. here in maine, the drought withers leaves and limbs, imperils thriving. i scratch a branch's bark with my thumbnail. it's green underneath. there's hope for recovery.

lying next to calvin, i wonder why he seized so closely to the last one. i feel his heartbeat; it's twice as fast as mine. perhaps the low atmospheric pressure is what triggered it. maybe, like birds before an earthquake, he feels a world in upheaval—rampant pandemic, hundreds of thousands dead, millions without work, poverty, misery, dread, injustice, despair, unrest.

 

at dawn, after months with little rain, the skies open up five minutes after calvin seized. its sound is at first a mystery. a passing truck? gale force winds? a school of morning skateboarders sailing down the street? time reveals the deluge on a red metal roof, the patter of drops in a newly-formed pool. a necessary cleansing of filth from the air. our nation needs a quenching, too.

hopes and regrets

regrets:

having said the wrong thing. having said the right thing at the wrong time. a handful of half-read books on my nightstand. thin patience. having missed seeing david byrne on broadway. too much complaining. letting time slip through my hands. knee-jerk reactions. time on social media. missed and mixed priorities. complacency. too much focus on politics and the news. pettiness. friends' unanswered emails in my inbox that are over a year old.

hopes:

carve time out to read books during the day. get more sleep. work on my neglected memoir. take up running for the umpteenth time. get out with my girlfriends more often. more simple pleasures like bringing cut flowers into the home. be a better correspondent. get out of town. praise more, complain less. help elect a decent, experienced, respected, measured president. seizure freedom for calvin.

overnight in september

Overnight, autumn arrived. The wind chilled, leaves turned rose and yellow, pine needles and temperatures fell. Overnight, Calvin suffered his sixth grand mal of September. In addition to those, he had two focal seizures, totaling eight for the calendar month. And though one seizure is one too many, I'll take eight over August's fifteen.

As I look out over the garden, now dark and damp after last night's rain, I remind myself that Calvin, though he continues to have reliable seizures, rebounds from them so much better. Gone, it seems, are the hours he used to spend perseverating, hyperventilating, fingering, heart racing in the wake of a grand mal. He—we—would often be up for hours unable to settle, and deprived of most precious sleep.

Seated in my creaky wooden chair, I regard the gangly lilac trembling in the wind outside my window and I think of Calvin who has grown so much since June, his limbs long and lean, his gait often unsteady as if he could be toppled by a breeze. Amid these weekly and biweekly seizures, I console myself knowing he is on far less pharmaceutical medication than in recent years, and yet not suffering a huge, sustained uptick in seizures. I just wish we could find a way to lessen them to the level he had (half a dozen to none) when he was on enormous doses of three powerful antiepileptic drugs, without suffering the unbearable behaviors those drugs caused. Even then, his number of seizures reliably crept up each month until we increased his medication, leading to a vicious and unsustainable cycle.

At times, on good days, I see glimmers of a more normal child in the gaze of his sky-blue eyes. I keep hoping, as he gets older and stronger, Calvin might outgrow his plight, just as robust plants are less susceptible to disease. Or perhaps the epilepsy will go dormant, like what happened to some trees as if overnight in September.

Photo by Michael Kolster

hope, dread, want

The day began large. Having been the second one in a row of seven that Calvin didn't wake to a seizure, I felt some semblance of hope. But as the day wore on, hope became dread, and dread became want.

Around noon on Sunday, we made our way north to the Union Fair. The hour-plus drive felt long, winding through Maine's back roads where farmland sprouts double-wides and barns, dilapidated antique stores, tractors, graveyards, and at least one shop devoted to selling guns. I tried to stave off a bit of anxiety amid the unfamiliar surroundings so far from home, tried focusing instead on feeding Calvin and thwarting his incessant attempts to stare at the sun.

It was a hot day to attend a fair, but the cloud cover helped for a spell. A nice lady selling tickets from a kiosk let Calvin in for free after she saw him spastically flailing in the backseat of the car. From the get go, Calvin was stubborn when asked to walk, a repeat of the day before. He'd take a step or two before collapsing in our grasp, getting us nowhere. Thankfully, we brought his stroller.

The highlight of our day's adventure was a ride on the Ferris wheel. This was a first for Calvin, for us as parents, and one I'd dreamt of for years. Calvin wilted in the sun waiting to board, and during the wheel's five revolutions, he didn't seem to register much of anything. He squirmed and squinted exhibiting discomfort. While Michael held him in the shade, I took in a bit of my surrounding world. The sky proved spectacular—a mix of puffy white clouds and wispy ones met the horizon. Compared with the West, this small part of Maine, save some rolling hills, is flat, with nary a vista to take in. In this landscape with its tall white pines and oaks, it's easy to feel stuck. Needless to say, at fifty to one-hundred feet, I ate it up.

Because of Calvin, we cut our fair-time short. The drive south felt more relaxed, any apprehension now behind us. Though we were at the fairgrounds just over an hour, and though it was far from Calvin's best performance, we had, I think, accomplished something, and it felt good to be heading home. On the drive, however, Calvin became increasingly agitated and, at one point, he let out a bizarre screech. I knew this was a bad omen, causing me some dread.

Once home, Michael gave Calvin a bath while I took Nellie on a short walk. When I came back, I heard Calvin upstairs crying as if he were hurt. After his bath, our boy had devolved into what I've previously described as night terrors. Calvin was writhing and crying, stretching and recoiling, shrieking and moaning as if he were being tortured. Michael and I guessed he had a migraine, so I gave him an acetaminophen suppository. Lauren stopped by, came upstairs and gave us some much needed tenderness and moral support. I shared my belief that these episodes are latent benzodiazepine withdrawal side effects. I'd read that Stevie Nicks, having withdrawn from years of prescribed benzodiazepine use had said that her detox felt like somebody had opened up a door and pushed her into hell. This is how Calvin sounded and looked.

After twenty minutes, when the acetaminophen didn't seem to be helping, I gave Calvin his nighttime dose of homemade THCA cannabis oil, except this time I gave it to him rectally. Within five minutes he was sound asleep. Half an hour later he woke up enough for me to give him the rest of his nighttime cannabis oil and his Keppra. He slept peacefully the rest of the night.

Unlike most seizures, rarely do I see with any clarity these pain episodes coming. In the past they've been while he's asleep, leading me to think they are night terrors. Now I know they are not. Regardless, they are dreadful. In the moment, I want for nothing but for Calvin to be at peace, to be set free from the torture and misery consuming him. I want for him to feel serenity, no matter how brief. I want him to feel the calm of looking into a sky with tranquil clouds which touch the horizon. I want him to feel hope, not dread, not want.

nocturnal hours

It's hard to believe that five years have passed since I began making a THCA cannabis oil to treat my son's epilepsy. Shortly thereafter, I started the difficult and protracted effort of weaning his benzodiazepine, Onfi, aka clobazam. The endeavor took us four years, but we succeeded. What I find most noteworthy since starting Calvin on cannabis oil is that his daytime grand mal seizures—despite the benzo withdrawal—have virtually disappeared. The seizures, which were common in late afternoon, have been largely limited to nocturnal hours; he has suffered only a handful of them during the day in those five years. Calvin's partial seizures, on the other hand, often come in clusters and often occur in the wake of grand mals, usually presenting in the wee morning hours, yet still nocturnal, as they did today and on most if not all of the past six days.

This spate of complex partial seizures is disheartening. For the past few months, the Palmetto Harmony CBD oil seemed to have reduced their monthly numbers from double digits down to three or four. Regrettably, however, as I have been increasing its dose, we have not yet seen them disappear as I had hoped. I might now know why.

Yesterday, after Calvin received a meningitis vaccination, I weighed and measured him. I've sensed he has been going through a growth spurt, but I was surprised to see he has gained nearly seven pounds and has grown over an inch since October. This rapid and substantial weight gain prompted me to slightly increase his bedtime Keppra to equal a previous level, effectively zeroing out one variable as I continue to titrate his CBD oil. My hope is that it will lead to better seizure control. I'll let you know.

This past week's nocturnal seizures have meant that I've been waking up between two and three-thirty and getting little if any sleep from then on. Sleep deprivation is a form of torture, spiking my despair, anger, impatience and resentment. And yet, when I pull myself from its grip, get some rest, take a shower, I can see my way out of its shadow and am heartened when I remind myself of Calvin's seizure-free afternoons. I am pleased with how quickly he now (usually) bounces back from grand mals. I'm consoled by the notion he is finally growing, is taking a fraction of the drugs he used to, is walking tall, standing steady, having fewer mood swings and tantrums, and is more often going to sleep when his head hits the pillow. And though I still have to get up in the middle of the night, watch him seize, deal with the aftereffects of grand mals, change poopy diapers, dress, bathe and feed a fifteen-year-old, I can say with confidence that my boy is easier to take care of these days.

Photo by Phoebe Parker

beside ourselves

As sure as the new moon's looming arrival, I sensed my son's impending grand mal. Yesterday, my boy and I were both beside ourselves—he agitated and wired and I, as a result, flustered, anxious and distraught—trapped in a vicious cycle of his disturbing behaviors begetting my tension, perhaps begetting his stress and perhaps begetting a seizure. But who knows? Maybe this is just how this effing epilepsy rolls.

Nevertheless, I try to put my best effort into remaining hopeful that we can find a therapeutic sweet spot of CBD that eases Calvin's seizures. So far, the Palmetto Harmony seems to have done a decent job of quelling Calvin's partial complex seizures and, for a time, I was sure it was reducing his grand mals. But three grand mals in a span of thirty days between mid December and mid January has since doubled back to his previous average. No doubt, the uptick is depressing.

Amid this constant doubt and worry, I try consoling myself, knowing that his grand mals are self-limiting, that the convulsions don't last more than ninety seconds. Nonetheless, they are distressing. I try to console myself knowing that his overall number of annual seizures is gradually decreasing, in spite of the fact he is no longer on the benzodiazepine and is taking far less of my homemade THCA oil. I try to console myself by remembering how utterly unhinged Calvin used to be on high doses of three antiepileptic drugs several years ago. Granted, he suffered a fraction of his current number of seizures back then, but his behavior was unbearable for us—then, far harder than the seizures—and I cannot imagine he felt very good. We'd see him regularly crawling out of his skin, virtually without respite.

I try to console myself by the mere fact that we did not have to cancel a gathering of some of our favorite people to salute Calvin's upcoming birthday. Despite Calvin's downward spiral yesterday—and owing to our son's wonderful caregivers—Michael and I cleaned house and put out a modest spread, gussied up, cranked the disco, rock and funk, and stayed up late chatting, laughing, snacking, drinking and dancing. Letting loose with beloveds proves to be one of life's best elixirs for casting out the mean blues and reds. Within minutes, I de-stressed.

Just before five a.m., however, after far too little sleep, Calvin seized. Michael dabbed the blood trickling from between our boy's lips. I gave the little guy his CBD oil then crawled in his bed and held him close to me. He quickly fell back to sleep. An hour later he woke up agitated as he often does in the wake of a grand mal—eye poking, "ooh-oohing," sun-staring, tossing, banging, restless beyond measure. Too soon, I lament, to be beside ourselves again.