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.

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

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

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

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!

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.

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.