11.27.2020

debt of gratitude

Last night, after eating a ridiculous meal that Michael spent all afternoon preparing while I was upstairs with a postictal Calvin, we mused on things we are grateful for. My husband said the nicest things anyone could say about me, nearly bringing me to tears. I read him yesterday's post noting my thanksgivings. In doing so, I realized how woefully remiss I had been in failing to mention so many other essentials to be thankful for, so I've added them here today:

Farmers who grew the wheat, potatoes, carrots, green beans and pumpkin, and raised the pigs, dairy cows and turkey for our meal. The pigs and dairy cows and turkey themselves. Migrant workers who risk their lives doing the back-breaking work of harvesting crops, and the dangerous labor of butchering, preparing and packing the meats we put on our table. Truckers who drive their rigs long distance to deliver the perishables to stores. Men and women who laid down large sections of road to get us where we and the truckers are going. Grocery store clerks and workers who risk their lives in a pandemic to help keep the rest of us fed. Nurses and doctors who have saved Calvin's life on two occasions, and others who are risking their lives during a pandemic to treat us and keep us alive. Indigenous Americans whose sacred ancestral lands, villages, culture, language and children were pillaged, and whose people were massacred by White colonizers; their descendants are fighting to preserve their rights and land and water to this day. Captured and enslaved Black men, women and children whose sweat and labor is the very foundation of this nation and its successes, and has built and buttressed so many White people's fortunes and privileges, however modest; their descendants are fighting against oppression to this day.

To these and those I humble myself, and owe a debt of gratitude—and more—every day of the year.

A similar feel to last night

11.26.2020

thanksgivings

loved-ones' covid recoveries. back door gifties. a friend's homemade garlic bagels and onion bialies with cream cheese and eggs. mild november days. starlit skies. crescent moons. seeing orion and other constellations out the upstairs bathroom window all hours of the night. roof overhead. fire in the stove. a desk from which to view the garden and write. stovetop espresso with stephen colbert and jimmy kimmel. handsome, loving, fun husband, father, artist, chef. ample space for keeping safe and (mostly) sane in the pandemic. cooking with gas and stereo. roasted, spatchcocked turkey. honey-glazed carrots. an attempt at my mother's stuffing with ground sausage and walnuts. pumpkin pie. gifford's old fashioned vanilla ice cream. bowdoin fields and trails. smellie, the best dog imaginable. extended family. ex-roommates still in the picture. childhood friends and former students who still keep in touch. beloved homies from coast to coast and abroad. new friendships and ones which are decades old. memories of our dear friend-brother-son who spent several thanksgivings with us when he was in college and who lives on deep in our hearts. people fighting for truth and justice. president-elect and his veep, plus other diverse, experienced, measured, respected public servants—ahhhhhh. sweetest, cutest, cuddly son. cloud-strewn skies over sparkling waters. donated strollers. walks at woodward point preserve. clusters of crooked sumac, white pine and naked oak. chilly nights warmed by an open fire. bits of bourbon. memories of my friend woody who used to love our leftovers. eclectic music collection. seizure-free days (sadly not today or yesterday.) sharing fortune with those less fortunate. letters from a death row inmate. perspective.

11.23.2020

one day at a time

Dreary, gray November day. It's pouring outside. Streets are flooded. A city worker claws heaps of needles and leaves from a storm drain. The effort looks futile. Calvin is in the back seat going batshit crazy. It has been eight days since his last grand mal. He has been ramping up by degrees. I wonder if this storm—the lightening and thunder, the low barometric pressure—will bring it on. If he could just eke out another day.

As we head straight into winter, I can only think of spring. Twenty-twenty has been a rough one—so many (more) unarmed Black people getting killed by police, peaceful protestors being gassed and shot with rubber bullets, raging wildfires, a runaway pandemic, a neglectful president, shuttered stores, boarded windows, millions unemployed, legions sick, a quarter million dead, the election, the bullshit claims of widespread voter fraud, the lack of concession. Even my large-leaf rhododendrons failed to bloom this summer. As if so many friends, I felt the blossoms' absence in June. I once heard that plants produce when they are stressed. This year the same shrubs are covered in buds, promising a psychedelic explosion come spring of 2021.

Sadly, that's a long way off. As for pandemics, who knows when we'll see a vaccine. For now, we just have to put our heads down, like this morning on my walk with Smellie. Brandishing my umbrella against torrential winds, somehow I managed not to let it turn inside out. The world feels like that right now—inside out, upside down, pressing in.

To keep us and our community and nation safe, the three of us will be spending Thanksgiving—for the first time in nearly two decades—alone. It'll be just fine, even nice for a change. We'll be gladly captive with each other and the aroma and flavors of roasted turkey, garlic mashers, honied carrots, cheese bread, green beans and pumpkin pie a la mode. We'll be sipping bourbon and wine in front of a rolling fire. Though we won't be gathering with family or friends, we have a multitude to give thanks for.

As I drive down lonely roads, I consider the sacrifices and hardships caused by this virus—the monotony of staying in, the sorry lack of gathering with friends inside our home, Calvin's inability to attend school remotely or in person, the loss of other kinds of ventures. I think about my own long-term limits on freedom due to Calvin's chronic illness, his dire physical and mental condition. Then I think about my pen pal who has been on death row since he was a teen barely older than my own. His mother's name is the same as mine. He's been in prison for a decade. He writes to me from a cell that is freezing this time of year. He describes what it's like: Don't let the time do you, you do the time; I fight off demons every single day trying to keep it together; It ain't easy just got to take it one day at a time.

During this crazy coronavirus time, it seems that's good advice for us all.

11.16.2020

the gravity of it all

The gravity of the sun and moon makes tides ebb and rise, makes spells befall my son. At least it seems so. Twice he seized this weekend, on the brink of a new moon. The arrival of both fits was stealthy, no major ramp ups, no mania, no marked malaise, just his usual restlessness on what has become—because of coronavirus—an ever-shorter tether.

In the wake of last night's grand mal, Michael and I sat in the dark with Calvin, I on a step stool next to his bed, Michael in a chair he brought in from another room. Plates in our laps, we ate dinner in silence as our boy drifted back to sleep. Occasionally, I put my face next to Calvin's, or licked a finger and held it under his nose to make sure he was still breathing; it's the twenty minutes, or so, after a grand mal when the risk is highest of succumbing to SUDEP (sudden unexpected death in epilepsy) particularly for someone like our son.

Just before midnight, I woke myself crying out in a dream about my late father, though not the one in which he is whisked helplessly into space by a roped bundle of helium balloons caught around his ankle. As I came to, gale force winds were hammering the house and rocking the pines in their foundations. Rain and debris from nearby trees pelted the windows. Along with the new moon, I wondered if the approaching torrent had weakened Calvin's fragile seizure threshold. I padded into his room and slipped him a little extra THCA cannabis oil hoping to prevent another seizure from gathering momentum.

For over three hours I laid awake listening to the storm. I tossed and turned: worrying about my loved ones who got Covid and wondering if they'll fully recover; exhausted from nine months of caring for Calvin six to eight hours most days by myself; grumbling about another of Calvin's IEP meetings in which his one-on-one therapies continue to be whittled away despite the absence of any in-person or remote schooling since March. Just after I heard the clock chime three, I finally fell asleep.

Today, Calvin has been cat-napping on the green couch. He sleeps for minutes at a time, wakes, gets off the couch—or me—then on again and rests some more. We will likely spend the entire day this way as he recovers from the grand mals.

As I sit here considering options for a title of this post—gravity, new moon, life storms—I search my blog to ensure I haven't used any before. I type in the word gravity and find this one. I read and mull over each word, nodding my head slightly as I go. Then I watch the attached video, which gives me the chills. At the end my eyes and nose are stinging, my face crumpling up as I begin to weep. It's so hard, this life with Calvin, made worse because of coronavirus and the absence of school or nurses to help ease the load. If not for my husband, the weight of it would be colossal—the seizures, the sleep deprivation, the angst, grief, loss, frustration, anger, inertia—the immense gravity of it all.

11.13.2020

covid-19

Today, I learned that two people whom I love dearly have been infected with Covid-19. It's possible, if not likely, that they've infected others.

The news made me recall a recent comment on social media: "You don't die from Covid, you die with Covid." I couldn't believe my eyes, couldn't believe the (willful?) ignorance behind such a reckless statement.

People, please. For the sake of the nation and the welfare of its people, especially vulnerable folks—the elderly, the infirm, Black, Indigenous, People of Color, children and adults like my son Calvin, and those with other preexisting conditions like cancer, diabetes, COPD—please stop spreading misinformation about Covid-19. Just stop. And take precautions not just for yourself, but for others: wear a mask indoors and in public spaces when near others; understand that the only reliably safe Covid pod or bubble is your own household.

Here are some facts:

Fact: Covid-19 is not "just like the flu;" First, Covid-19 can cause serious complications including long-term damage to the lungsheartkidneysbrain and other organs. Second, it is thought to be substantially more deadly (possibly ten times or more) than most strains of influenza. 

Fact: Increased testing does not fully account for the rapid increase in reported cases; that is a false and reckless narrative. While more testing helps to reveal existing cases, the fact is the virus is spreading exponentially. For evidence, just look to the recent spike in hospitalizations and deaths nationwide, even in just the past two weeks. On Thursday, states reported 163,000 new cases of covid-19 and over 1,500 deaths—the highest number since May. Sixty-six thousand people are currently hospitalized. Texas has had to set up mobile morgues.

Fact: People don't just die with Covid, they die from Covid. Evidence: according to data from the CDC, the US has had nearly 280,000 extra deaths this year as of the end of September. That roughly correlates to the Covid-19 deaths thus far this year, which is rapidly nearing 250,000 (and thought by experts to be undercounted.)

Fact: Many people with Covid-19 are presymptomatic or asymptomatic, which means they could be unwittingly spreading the virus to others.

Fact: Doctors and public health officials are saying that small gatherings—dinner parties, carpools, playdates—create perfect conditions for the virus to spread among people who are crowded into poorly ventilated spaces. Experts remind us that we should avoid spending more than 15 minutes (in any 24-hour period) within six feet of people who don't live in our household, and they are begging folks to stay home for the holidays this year—i.e. just because he's your grandpa or grandson doesn't mean he doesn't have Covid.

Fact: Scientific research shows that wearing a mask helps to prevent the spread of the virus to others and could help to prevent getting it. Keeping public safety in mind, wearing a mask is no more of an infringement on our freedoms than wearing a seat belt or driving on the right side of the road; we follow these precautions to keep ourselves and others safe from harm. We could consider wearing a mask as a tiny, patriotic sacrifice for our fellow Americans.

We can stop this virus' wicked trajectory if we are committed. For me, all it took was imagining my husband and/or my son in the hospital.

Wear a mask to protect others and to protect yourself. It's not that hard. What's hard is losing a parent or child to coronavirus. What's hard is being on a ventilator for weeks. What's hard is dying in a hospital without loved ones nearby. What's hard is working sixteen-hour shifts to help keep Covid patients alive. 

What's hard is knowing it didn't have to be this way.

Calvin in the hospital, 2006

11.10.2020

so little time

so little time these days to write my blog. my memoir has been neglected. leaves pile up on the ground outside. dust bunnies collect in the corners of the house. days are getting shorter fast. the sun is low, even at high noon. i see it slung in the sky above a tidal inlet where workers break their backs harvesting clams from the mud. 

calvin went sixteen days between seizures. in a month's time, he's only had four grand mals. his focal seizures are at a record low this year. he's taking way less medication—only one antiepileptic pharmaceutical. it seems my homemade thca cannabis oil is what's helping most, and that we are treating his anemia.

he's growing like a weed, though still tiny for someone who will be seventeen come february. almost five feet now. eighty-three pounds. we're still lifting him. keeps us strong, though not exactly young. 

dawn isn't coming until six-thirty. sun is setting at four-twenty today. tomorrow will be two minutes and twenty-four seconds shorter. so little time to do much of anything these days. the pandemic sadly rules.

11.07.2020

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