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

11.05.2020

meanwhile in america

a comfortable place. a window or deck with some kind of view. three bedrooms, two-and-a-half baths. healthy, well-fed children. no oppression due to race, religion, sexual preference or gender. a dog and a cat. reliable cars. gas in their tanks. a well-stocked fridge. a jam-packed pantry. a cupboard full of random booze. college degrees. no student debt. white-collar jobs. working from home. paid sick leave. vacation too. health insurance. childcare. broadband. cable t.v. laptops. iPads. cell phones. 401Ks. assets. equities. legacies. futures. write-offs. loopholes. quiet streets. decent schools. grocery stores galore. parks. camps. zoos. weekends away in nice hotel rooms. coats for every occasion. a dozen shoes. a household without chronic illness. neighbors with similar beliefs and views. pandora. amazon. netflix. hulu.

meanwhile in america.

three generations living under one roof. dissolving wallpaper. bed bugs. mildew. crummy plumbing. bad landlord. hungry tummies. refrigerator blues. bare cupboards. convenience-store food. thankless work if there's work at all. starvation wages. long days. no sick leave or paid vacation. no employee healthcare. soup kitchen queues. no childcare. cash-strapped. unpaid bills. no broadband. dilapidated schools. four people sleeping in one room. one coat for all weather. worn-out shoes. chronic illness in the family. acute, too. rationing medication. eviction looms. an innocent relative in prison. another deported. a loved one dying alone in the hospital from covid.

i hear on the radio a man named eric liu:

rugged individualism never got a barn raised, never got a field cleared, never got a schoolhouse built. the only good things that have happened have happened because people came together in a way where they took responsibility for each other.

a comfortable place: neglect in understanding—listening to, advocating for (in the streets and at the ballot booth), charity, bearing witness to and lessening—the suffering of others. complacency, selfishness, cynicism and ignorance can so obscure what's true.

Matt Eich/Alexia Foundation

11.01.2020

in no uncertain terms

My parents told me and my siblings never to say the word "retard." Still, we called each other "spazzes" with reckless abandon. I grew up in a time when, and place where, it wasn't uncommon for racist jokes to be told with little reflection on the harm they caused. Some were told by my father, whom I didn't consider racist because of his friendship with, kindness to, and deferential treatment of people of different races and nations, including my friends.  

Later in life, it felt troubling when people close to me mocked my gay friends, used the "N" word, called Middle Easterners "towel heads," and referred to homeless people as "winos" and "bums." A friend's husband once used a racial slur to suggest that Black people are lazy. With a pounding heart and a face flush with indignation, I've challenged antisemitic, homophobic, sexist and racist tropes. Years ago, I ignorantly used the slur "White trash." I'll be forever grateful to the White woman I was speaking with who schooled me about the ways in which the term is offensive, wrong and hurtful. I've never said it since. 

Long before Calvin was born, I became sensitive to the bigotry and oppression that non-White, non-male, non-straight, non-Christian, poor, and homeless people face. I owe that to the many African American and gay men and women I've loved, lived with and befriended, and to my Chinese, Japanese, Filipino, Muslim, Latino and Jewish coworkers, friends and neighbors in Seattle, San Francisco and Maine. For years, I've done in-depth study of this nation's systemic racism; research shows racial discrimination occurs at all levels of government and society including housing, healthcare, education, employment, lending, criminal justice and voting. My son Calvin has given me firsthand experience of what it means to live with disability—its limitations, its stigma, its burdens and hardships. It wasn't until after his birth that I learned that children and adults like him were the first of millions to be executed during Hitler's Holocaust. This knowledge has stayed with me, and has further informed my opinions about bigotry and the dangers of otherism.

Despite what I see as dubious foreign policy, blatant and astonishing self-dealing, shady and felonious henchmen, petty and vindictive tweets, and reckless handling of the coronavirus pandemic, it's my love and support for vulnerable, oppressed and marginalized Americans, immigrants and refugees that is at the heart of my criticism of Trump and his administration's harmful policies. I mean, who cruelly separates infants, toddlers and teens from their parents for any reason? Trump does. For someone who claims to be Christian, that policy is the antithesis of godly; in other words, it's evil, and tantamount to terrorism.

As if the past four years of Trump's racist, xenophobic, antisemitic, homophobic and transphobic rhetoric and policies weren't enough, yesterday, I saw a video in which Trump, at a mid-September rally this fall in Minnesota, said to the crowd:

"You have good genes, you know that, right? You have good genes. A lot of it’s about the genes isn’t it, don’t you believe? The racehorse theory—you think we're so different? You have good genes in Minnesota.” 

For those of you who don't know what the racehorse theory is, it's the premise that selective breeding— eugenics—can improve a nation’s performance. German Nazis used this theory as the basis for exterminating those they deemed as undesirable, to advance their attempt at racial purity and strength.

Until now, in this blog, I haven't promoted the full argument that Trump is a racist, despite having been utterly convinced of it for years. However, after watching the video, I can no longer refrain. This time, his comments are so clear they cannot be explained away as being "not racist" or "sarcasm" or "in jest" or "taken out of context." This time, there's no denying the meaning or significance of his words; his message is odious and deliberate, its threatening implications, unmistakable. His words should serve as a caution to anyone thinking of voting for him who does not support White supremacy or Nazism. 

In no uncertain terms, Trump touted the same theory which Hitler employed to murder eleven million innocent people—disabled children and adults, the infirm, the elderly, the mentally ill, gay men and women, Jews, Romanis, Jehovah's Witnesses, Roman Catholics—to a crowd of mostly-White Americans of mostly-German heritage in a state with a growing number of Somali and Hmong immigrants.

After seeing Trump spew his vile words, to then knowingly back him is to choose to secure a White supremacist racist in the most powerful position in the world. His rhetoric goes hand in hand with his long record of using racist dog-whistles—"law and order," "save the suburbs," "go back to where you came from," "America first," "bad hombres"—and is particularly disturbing considering his tacit and overt support of White supremacists and far-right terrorist militias. As cynical as it might sound, it's not a stretch to imagine that his racehorse theory serves as grounds for his administration's promotion of herd immunity, in light of the well-documented evidence that Blacks, Indigenous people and Latinos are two to six times as likely to die from Covid-19 as Whites, depending upon age.

Chilling.

I can anticipate a response to my assertion from some Trump supporters. They'll say they're voting for him because they are pro-life and they are under the impression that he is too. But a pro-life claim rings hollow if one supports a man who espouses such a nakedly racist and dangerous theory used to justify the genocide of countrymen, women and children. Furthermore, any pro-life claim is meaningless if one does not also support social programs that sustain life beyond birth for those in need, such as healthcare, housing aide, food aide, family leave, childcare, pre-K, a decent education, and an interest in protecting the lives and livelihoods of immigrants, refugees and their children.

So, before going to the polls, if you have not voted already, ask yourself what kind of America you want to wake up to every morning.

Edward Muybridge, Horse Galloping, 1878

10.29.2020

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!

10.25.2020

ice cream sundays

Inevitably, on Saturday and Sunday morning walks with Smellie, one neighbor or another will ask if I have any big plans for the weekend. My answer is always the same: nope.
 
With a kid like Calvin, most kinds of outings are difficult and others, especially during a rampant pandemic, are impossible. We are faced with major stubbornness if we try to take Calvin for walks on the beach or in the woods, so we pretty much never do that anymore. We no longer take him to the grocery store because he won't keep a mask on his face and he drools on and touches everything with fingers that go directly into his mouth. We almost never go on overnights because we can't be sure of securing a safe place for him to sleep, and though it has been years since he has been hospitalized for prolonged seizures, that fear is always in the back of our minds.

So, a typical weekend day for us starts at the same time as every other day, between 5:30 and 6:15, which is when we have to give Calvin his time-sensitive anti-seizure medicines. Michael makes coffee for us and breakfast for Calvin, reads a bit of news then goes for his 5K. When he gets back, I often make eggs and toast for everyone, then I take Smellie for a walk. After showers, we go for a car ride. On Saturdays, we venture to the next town over to pick up a freshly-baked baguette, then stop for a spell at the boat launch where we watch the Kennebeck river in its various stages of calm and choppy. Once in a while, we get the spot all to ourselves. Mostly, I stay in the car feeding Calvin and, if there are no boats, Smellie ventures into the water. On mild days we all get out for a bit to let the sun warm our weary bones.
 
Once home, Michael heads off to his studio for a few hours to develop film, make pictures, prepare for the week's classes or work on his next book. On days after a seizure, like today, Calvin spends most of the day napping in my lap on the green couch. Michael usually comes home early to hang out with us before making dinner.

Sundays are nearly carbon copies of Saturdays with the exception that we get ice cream from the drive-thru just after it opens. On the drive home, I feed everyone a few bites of one of our favorite flavors—gingersnap, coffee oreo, mint oreo, blackraspberry, chocolate peanut butter cup—then put the lid back on and save the rest for later. 

Pandemic or not, these are our weekends—mundane, highly limited, predictable and yet satisfying—and will be for the foreseeable future.

Michael walking Calvin down the dock a few weekends ago.

10.24.2020

breathe deep

i tell myself often: breathe deep. forgive. forget. release regret, resentments big and small. abandon fear and angst if possible. practice compassion, kindness, respect, inclusiveness, gratitude, humility. expect successes but allow yourself to fail. imagine. wonder. create. explore. find a perch or cave from which to ponder the world. reflect. muse. hold onto hope. lose yourself. take risks, as long as you don't hurt others. founder, but move forward with as much grace as you can muster. embrace others. listen and live awhile in their shoes.

10.20.2020

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.

10.16.2020

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

10.13.2020

on the road again

For the first time since last October, and about the third time in a decade, the three of us, plus Smellie, went for a mini vacation. Last weekend, we took a scenic drive into the orangey, autumn hills of Rangeley, Maine on our way to Bald Mountain. We settled into a rustic lakeside cabin where we enjoyed all kinds of weather, from a clear, still Friday in the high-forties, to a stormy, seventy-degree Saturday, to a windy, bone-chilling Sunday morning. 

Regrettably, on our first night, Calvin suffered at least three focal seizures—the insidious kind which have been diminishing these past several months. The next day he had fourth one. As a result, Calvin spent the entire weekend convalescing in bed. Michael and I took turns sitting or lying beside him in a bedroom that, by way of a front room window, had a narrow view of the lake and some graceful birches. Sadly, Calvin wasn't able to step foot outside the cabin on his own. The only time he went outside was the brief moment when Michael carried him onto the porch and held him in his lap to watch a dramatic lightening display across the lake.

Luckily, Calvin wasn't hyper or feverish or manic or restless; he was content to nap on and off all weekend, recovering from his seizures or whatever else was ailing him. At dinnertime, he slept soundly enough (baby monitor within inches of our ears) for us to enjoy our meals which we shared very responsibly—physically distant at cocktail hour, masked-up when necessary, virtually al fresco at dinner—with our dear friends who rented the cabin next door.

It felt good to spend time enjoying a rare change of scenery—a quiet space near the water with a big sky and a clear view of the sunset. Smellie frolicked on the beach. We ate delicious food, drank sublime wine and a tiny bit of bourbon. Best of all, we laughed a lot with our friends with whom we share a similar sense of humor and cynicism, and who know our situation better than anyone because our sons, both our only children, have a lot in common.

After two days without our ridiculous creature comforts, it felt good to get back home and to settle into the familiar, to stroll in the garden, walk Smellie in the open fields, and eat dinner to music in front of a rolling fire in the wood stove. If all goes well, maybe we'll try getting on the road again next year.

10.11.2020

decade

Like the pandemic, my son Calvin causes time to expand. Perhaps it's his protracted development—exponentially slower than watching paint dry or grass grow—which makes time-space stretch so impossibly. Unlike other parents, Michael and I don't experience fleeting years between diapers and high school graduation, because as the years pass, our boy never really grows up; he's much the same now as when he was little, though thankfully a bit less manic than when he was taking very high doses of three powerful antiepileptic drugs (see below).

Life with Calvin is a paradox in that, though time nearly stands still, it's astonishing to think that he was only six when I wrote my first blog post a decade ago. Maybe it's the writing that moves things along and makes one monotonous day different from the last. Maybe my prose and occasional poetry—or more so, perhaps, the musing that leads to them—are what inject meaning and richness into a life which otherwise might be mind-numbingly tedious, dull and unfulfilling. And how curious to think that, had Calvin not come along, I might not be writing at all. I might be stuck in a stressful, thankless job designing clothes for a hierarchical, outdoor catalog company. I might not be thinking and working so seriously to reveal purpose, to explore myself and others, to underscore and try to right injustices. I might not be considering life from the perspective of disability and other forms of marginalization, and their particular aspects of everyday living which are still unseen by—though not necessarily hidden from—too many Americans.
 
So, ten years, 2,024 entries and 1.3+ million hits since my first blog post, back when I didn't even know what a blog was, I am indebted to Calvin, and Michael (whose idea it was to write a blog) for helping me celebrate what has become a labor of love.

   

Calvin back in August of 2010, not long before I embarked on this blog.

10.08.2020

the color of life

his steely shriek pierces the quiet of the night. we rush to our son's side. on his back, his limbs are stiff and crooked like rigor mortis. his face is twisted into a ghastly grimace. we strip his covers, roll him on his side, keep his feet from getting hurt. after ninety seconds the violent spasms slacken. he gulps and gasps as if half submerged. something impedes his ability to breathe. mucous? drool? his blue eyes are wide and looking frightened. fingers dusky. cheeks ashen. after some successful breaths, the color of life bleeds back into them. 

fifteen years of this curse we've endured, never quite getting used to it. the feel is gray and heavy. this time, the fear of his dying looms. if he can't catch his breath, what should we do? what can we do? we take turns sleeping with him. feel his heartbeat and breathing. some hours later, another fit occurs. this one is slightly worse. after the spell, our boy is restless. headachy? panicked? confused? in the blackness he reaches out to me. pulls my head to his, but then tries to launch himself out of bed. this repeats on end. we get a few hours sleep at best.

sunup, outside it's gorgeous. green and yellow, blinding white and orange, belying my blues. i walk the dog across an emerald field draped in dew. the trees are talking to me. they seem to know what has happened. i see a few people. ones in their bubbles don't ask about my son. i don't bring him up. it doesn't matter. in some ways i embrace a heart that feels indigo and alone. still, angst burns in so many reddish directions—seizures, dreams, too much yet not enough to do. i both dread and crave the election. the nation is coming unglued. we need a beacon to unite us, come to our rescue. walking home, i wonder if i can save my son, breathe the color of life back into him if i ever need to.

Calvin during the end of a seizure, 2013

10.06.2020

on voting

This morning, I slid into my favorite jeans, chambray linen shift, denim jacket and studded, black ankle boots. I even put on a necklace, because today I celebrated a special occasion: voting! After loading Calvin and Smellie into the car, I drove out to Simpson's Point. Beneath a sky the same gray as the restless sea, I carefully filled out my absentee ballot in my lap. After making certain that I'd made no mistakes, I stuffed and sealed the envelope, signed the back, then headed to our town hall where I popped it into the ballot box.

Today, I didn't just vote for my own interests.

I voted for my son Calvin and others like him who have preexisting conditions, and others unlike him whose healthcare is in jeopardy as the Affordable Care Act is being actively fought before the Supreme Court by an administration that has no plan to replace it.

I voted for essential workers who risk their lives every day during this pandemic—still, without access to proper PPE or coronavirus testing—to harvest our food, ring up and bag our groceries, care for our elderly and infirm, run our public transportation, put out fires, collect our refuse, teach our children. I voted for those in the service industry who cater to our every whim even when maskless others put them and their families in danger. We need an administration that takes this virus and its hazards seriously and lays out a plan for mitigating it.

I voted for supporting working women who continue to do the lion's share of housework and childcare while their careers suffer, especially amid a rampant pandemic. We need universal childcare and paid family leave.

I voted with scores of my African American friends, neighbors and acquaintances in mind, because their basic civil rights continue to be violated by harmful policies and practices in a nation that has not yet lived up to its original promise of equality for all. We need an administration that acknowledges our nation's sordid history and, in no uncertain terms, condemns police violence and White Supremacy.

I voted for the right of my female friends, their mothers, sisters and daughters to control their own bodies.

I voted for my gay and lesbian friends whose right to marry those they love is in the hands of a Supreme Court whose conservative justices have shown to value dogmatic religious freedoms over fundamental personal ones.

I voted for the Dreamers who were brought to this country as children and who are American in every way but on paper. They deserve a path to citizenship.

I voted for disabled people who—still marginalized—may not be able to make it to the polls and who might have great difficulty casting their votes by mail.

I voted for those whose votes are actively being suppressed, whose polling locations have closed, who've been wiped from the records for simply having not voted in past elections, who don't have easy access to the polls, their town hall or to their local drop box.

I voted for those who have been separated from their family members because of this administration's harsh and discriminatory immigration laws and practices.

I voted for former felons—no doubt many who are innocent of the crimes for which they were convicted—who, despite having paid their debt to society by doing time behind bars, continue to be disenfranchised by policies meant to keep them in the margins of society and to stifle their voices.

I voted for everyone who lacks access to affordable healthcare. I voted for students who are drowning in debt. I voted for a fair and living minimum wage. I voted for the party that wants to expand access to contraception and whose policies are known to greatly reduce abortion. I voted for a party that champions fair wages, peaceful protest, equal rights no matter what gender or sexual preference. I voted for the restoration of environmental regulations. I voted for the party which advocates for a progressive tax code so the wealthy and big corporations pay their fair share. I voted for a party that advocates, elevates and nominates—in significant and meaningful numbers—women and people of color. I voted for the wise, experienced and measured leadership that trusts and respects experts and facts and science.

Vote early if you can. Vote in person if you are able. Vote absentee if you must, and drop it at your town hall if you can. Click here to find out how to vote in your state.

10.03.2020

what keeps me up at night

stormy weather. rampant pandemic. restless child needing to be covered. missing san francisco. dreams of chickadees trapped in leaky closets. thoughts of dantae. concepts for blog posts. this critical election. smellie snoring. major rainfall on a red metal roof. unjust nation. dread of a long maine winter keeping calvin home from school. reckless president. trivial issues. fear of looming seizures. unanswered emails. phonecalls i haven't returned. manipulative and deceitful people. boisterous students outside our window. careless americans. fears of death. white supremacy. wretched news. classic nighttime angst. thoughts about tomorrow.

9.28.2020

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.

9.26.2020

worried sick

Yesterday morning at 4:30, after I'd been tossing and turning for over an hour, the dreaded seizure came. It had been just six days since the last one. In the early evening the night before I had seen its approach, Calvin's telltale agitation, his finger-knitting and eye-poking common harbingers. Sadly, there isn't much we can do but lie awake worried sick waiting for it to happen while fretting over all things big and small—the supreme court, neglected inboxes, this filthy house, the election, social justice.

Since Calvin was two, he has had thousands of seizures. During them, he has bitten his cheek till it bleeds. He has struggled to breathe and turned blue. He has fallen out of bed and gotten bruised. He has succumbed to all kinds of dizzying side effects from antiepileptic medications—headaches, nausea, dyskinesia, ataxia, agitation, confusion, panic, anorexia, malaise, withdrawal. At least four times this year Calvin has taken a fall, usually on days before a seizure as he cranes his neck to stare at the sun. Sometimes he topples straight backwards as if he were timber. At others, he tips and drops to the side like a stone. Despite the fact that we've got our hands on him, he somehow manages to slip out of our grasp. The few times that he has hit his head, he was thankfully on the lawn, which is somewhat forgiving. 

As I lay awake next to Calvin as he drifted back to sleep after the seizure, I thought about our litany of miseries—his hospitalizations, his injuries, his seizures, his close calls, the difficulties in caring for him. The only thing we don't have to worry about are his medical costs thanks to decent health insurance through Michael's job, plus supplementary state Medicaid just for Calvin.

The healthcare costs for a child like Calvin are astonishing and include bills for medications, examinations by his primary care provider, neurologist, endocrinologist, urologist, gastroenterologist, neuro-ophthalmologist, pulmonologist, orthopedic surgeon, and x-rays, sonograms, CT scans, MRIs, EEGs, sleep studies, splints, orthotics, glasses, eye surgeries, nuclear medicine tests, ambulance rides, emergency department visits, hospital admissions, intubations, IVs, blood work, insurance premiums, copays, deductibles, and in-home nursing when there's not a pandemic.

Back in 2008 near the start of the Great Recession, my husband's case for tenure at Bowdoin College was in doubt. We spent weeks worrying about what we'd do if he were released into the worst job market since the Depression in a field with scant opportunity. If Michael were ultimately denied tenure and unable to find a new job, we worried that healthcare insurance premiums and deductibles would be cost prohibitive, assuming we could even get insurance for Calvin considering his myriad preexisting conditions.

In the end, despite the uncertainties, Michael was awarded tenure. This meant we were not faced with the dire situation in which many Americans find themselves today having lost their jobs and, thus, their health insurance due to a recklessly managed and consequently rampant pandemic.

Over the years, I've read and heard stories from countless Americans who have gone bankrupt due to massive healthcare costs from everything from appendicitis to cancer. From its inception, the Affordable Care Act (ACA), aka Obamacare, which provides healthcare to over 20 million Americans and requires insurers to cover preexisting conditions, has been attacked by republicans. Prior to the ACA, insurance companies regularly denied health coverage to people like Calvin, or charged exorbitant premiums to do so. The Biden/Harris ticket aims to expand the ACA to include a Medicare option for anyone who wants it. In stark comparison, the current administration is actively fighting to destroy the ACA despite still not having a plan to replace it; the Supreme Court will hear oral arguments on the fate of the ACA one week after the November election.

Americans' healthcare—a necessity to life, liberty and the pursuit of happiness and essential for a safe, secure, healthy, and prosperous nation—hangs in the balance, leaving many of the most vulnerable Americans to lie awake at night worried sick and getting sicker. In the most prosperous nation in the world in which so many people like to claim that all lives matter, none of us should have to live that way.

Calvin in the hospital after a prolonged seizure, March 2006

9.21.2020

gut punches (and others)

Reading the news Friday night felt like a gut punch.

"Oh, no!" I cried out, upon learning of Supreme Court Justice Ruth Bader Ginsburg's death, my verbal reaction reminiscent of Michael's response when he heard that a dear friend had taken his own life.

On the heels of my grief and disappointment over the news of RBG's passing came the regrettable recognition that the current administration would move quickly to replace her, no doubt with a nominee apt to, at the very least, kill the Affordable Care Act and its mandate covering preexisting conditions, broaden avenues for continued voter suppression, and subvert (further) the body autonomy of American women.

My mind went into a frenzy recalling myths about abortion and the ways in which conservative men, for the most part, have for decades worked hard to politicize and legislate (away) women's reproductive health and freedom by limiting access to birth control, and by further diminishing the reasonably small window in which most abortions are allowed to be performed. Republican-led, mostly-male legislatures continue their aim to tighten regulations and mount burdensome hurdles so as to strictly limit the number of the nation's abortion clinics making it difficult for women, especially those who are poor, to access safe and legal procedures. Consider, too, the disingenuous pro-life claims, borne out in attempts to stifle proven, best methods of preventing unplanned pregnancies and abortion, such as free and accessible contraception, family planning and comprehensive sex education. Despite the fact that neither the Old Testament nor the New mentions abortion—not one word—many people cite their religious beliefs as the basis to condemn it. Noteworthy, too, is that Christian women make up nearly two-thirds of those who choose to have an abortion.

I became further vexed pondering the fact that many who profess their belief in the sanctity of life also support capital punishment—state-sanctioned murder—while still others suggest allowing abortion in the case of rape or incest, thereby belying their pro-life claims. And what of the growing number of Americans like me who aren't religious, who don't buy into the notion that a zygote or fetus has more rights than its pregnant mother, who don't condone the legislative and punitive coercion of women to carry unintended pregnancies to term? Should the religious freedom of some Americans supersede the basic human rights of others? I don't think so. Moreover, consider the fate of malformed fetuses which will endure brief though agonizing lives if their mothers and fathers are not allowed the option of sparing them certain pain and suffering after birth.

All the while—incomprehensibly, if not for the current patriarchal paradigm—the subject of making accountable the male impregnators never seems to enter the political discourse or legislative debate regarding abortion. How convenient. This continued strangling of women's reproductive rights and personal empowerment and freedom is insufferable—a literal and figurative gut punch. And the stomach-churning truth is that now, with RBG's death, the specter of yet another diehard conservative on the Supreme Court makes women's hard-fought sovereignty as precarious as ever.

Obviously, I'm pro-choice, which is not the same as pro-abortion. However, were I aware early in my pregnancy the extent to which Calvin's brain anomaly would lead to his miseries, I wonder what I would have done. I think I know, but I can't be certain. Regardless, I don't believe I have the right to decide the outcome of other women's planned or unplanned pregnancies, which impact their mental and physical well-being, the stability of their families, the trajectory of their careers, and the health risks to themselves and/or their unborn.

At a time when over three-quarters of all Americans support a woman's right to choose, and when one in four American women access abortion, the passing of Justice Ruth Bader Ginsburg leaves American women vulnerable to a handful of privileged, conservative, male, Supreme Court justices, all with Catholic roots. As deft as these conservative justices are on the Bench, I have my doubts that they are capable of fully considering, from a woman's unique perspective, the sweeping risks and considerations, the threat to very private, personal and constitutional freedoms and equal access to life, liberty and the pursuit of happiness that unintended, unhealthy or hopeless pregnancies—or a government mandate to take those pregnancies to term—may represent.

As I mused on the terrible dilemma of losing one of America's best champions of gender, religious and racial equality, I recalled The Notorious RBG's use of a statement by the abolitionist, Sarah Grimké:

I ask no favor for my sex; all I ask of our brethren is that they take their feet from off our necks.

This November, get out there and vote. Know how to vote in your state. Vote early. Vote by mail. Complete your ballot carefully and put it in your city's drop box. Be prepared for long lines if you vote in person. Vote as if your healthcare is in peril. Vote as if your or your partner's reproductive rights are at risk. Vote as if corporations have more rights than you do. Vote as if your right to vote is in jeopardy. It's all hanging in the balance.

Now is not the time to pull any punches.

9.16.2020

"i am" poems

On Saturday, I received a second letter from my new pen pal who has been on death row in an Alabama "correction facility" for ten years. He's there along with about 165 other men who have also received death sentences, each languishing in their own little cell. Studies show that as many as four percent of death row inmates are likely innocent of the crimes they've been convicted of committing. That's equal to nearly seven innocents in that one Alabama prison alone, in a nation where some people cling to the platitude, All lives matter.

In response to my pen pal's letter, I told him I had recently finished the book, Reading with Patrick. It's author, Michelle Kuo, writes deftly and movingly about her time as a high school teacher in a small Mississippi Delta town. I went on to tell my pen pal that the author asked her students to write "I am" poems. I wrote a quick one in my letter to him:

I am strong
I wonder how life would have been if my son were "normal"
I hear my son complain, and I don't know why
I see the wind blowing through the trees
I want to make the world a better place
I feel sad some of the time
I cry when I am overtired and lamenting the loss of my child who is still alive
I understand how important it is to listen to others
I dream of a just and loving america and world
I try my best, but I still fail
I hope life gets easier, though I am still grateful for may things

I asked my pen pal if he might want to write an "I am" poem and send it back to me. I am hoping so.

At the end of my letter to him I drew a picture of our dog, Smellie, then signed off by saying, Know that I am thinking of you. I folded the pages around a self-addressed stamped envelope plus a family photo taken seven years ago which I discovered, slightly crumpled, in the back of my desk drawer.

I can't help but wonder what my son Calvin, who is nonverbal, cognitively and physically disabled, might write in his own "I am" poem if he were able. But since he isn't, I wrote a version for him, imagining him capable of certain complex thoughts:

I am a fighter
I wonder why I'm not going to school anymore
I hear my mom drop the F-bomb a lot
I see my mom get annoyed with me sometimes
I want to be able to do things by myself
I feel frustrated when I'm not understood
I cry when my head and tummy hurt
I understand that I am loved
I dream of being able to speak
I try to do my best at everything
I hope one day my seizures stop

Rereading my poems, I'm reminded of how vital it is to see life from another person's perspective, which is the main reason I was interested in raising a child. I want to understand why and how other people grieve. I want to bear witness to other's struggles and to feel empathy. It seems that the America we live in—one which too often embraces the myth of rugged individualism and mantras like, Don't tread on me—suffers from a lack of understanding and empathy for those who face certain stresses and obstacles in their daily lives which hinder their ability to live life fully, enjoy liberty and pursue happiness. I'm thinking of Americans who are homeless, hungry, hurting, cold. I'm thinking of Americans who are disabled, hated, disenfranchised, imprisoned. I'm thinking of Americans who don't have jobs, health insurance, savings, and those who can't vote.

I slide my folded letter and family photo into an envelope, address it, seal it, stamp it and pop it into the mailbox for its trip to Alabama. Doing so, I imagine my pen pal passing long hours in his cell. I consider the fact that he never got the chance to vote and will likely never be able to vote for the leaders who will write laws and policy which directly affect him. I think of the number of innocent people who are imprisoned and on death row who are disproportionately people of color. I wonder what kinds of "I am" poems they'd be writing if they could.

Photo by Michael Kolster

9.13.2020

where i roam (and don't)

As other kids head back to school, mine is staying home. During a pandemic, sending Calvin back into the classroom is too much of a risk for us. He can’t keep a mask on his face, can’t maintain a safe physical distance. Everything he touches—railings, tables, people’s hands and faces—become part of his microbiome. Because of his condition, if he gets the virus he likely won’t fare very well. If either Michael or I were to fall quite ill, it could prove disastrous for our family.

In mid March, we let the nurses go. Since then, we’ve been going it alone. Calvin has seen virtually no one but me and Michael the entire time. Regrettably, we no longer take him to the grocery store, one of a very few places he liked to go. I’ve been within mere feet of my son nearly twenty-four hours seven days a week since his last day of school six months ago. My only respite is my morning walk with Smellie. We traipse the fields and their surrounding wooded trails. It's the only place I roam alone.

Our days are mundane. Each begins with waking too early. Sleeping in is not a luxury we enjoy, even in a pandemic, because I have to give Calvin his time-sensitive, anti-seizure medicine. On most days, Michael helps me at least until mid morning and at night. The rest of the day I go it alone. I change Calvin's diaper, feed him, bathe him, clothe him, toilet him, wipe him, hug him, kiss him, fend him off, hold him close. We tread endless circles around the house and yard. I take him and Smellie for long car rides and sometimes, though not nearly enough, for strolls. In between, I listen to music or news. Lately, I hear stories of wildfires causing smoke and ocher skies, choking states in which were my beloved former homes. I read of Covid outbreaks, massive layoffs, healthcare nightmares, betrayals and lies leading to unnecessary deaths from the virus. Despair and fatigue set into my already weary eyes.

When six o'clock arrives and we put Calvin to bed, I can relax a little bit, have a glass of wine. Once a week, or so, we visit with another couple for a limited time at a safe distance outside; I get energized. At night, Michael and I hunker down with a good movie or to read, then hope to get a decent sleep. Too often, we're rattled by the sound of Calvin's seizure scream; he has them once or twice a week. Like the pandemic, they're unsettling. I dread them. I lose much-needed sleep.

Like last night, lying next to Calvin in the seizure's wake, in my mind I try to roam to faraway places. I go to where the haze in the air is mist. I visit familiar cities which are gleaming. I go to where vistas are myriad, waters are calm and azure, fields are vast and green. I go to where there's no pandemic and where Calvin doesn't seize. I dream of times when leaders are virtuous, and the future isn't bleak.