Saturday, May 29, 2021

Lunch with an Old Friend and His Companion, Dementia

 

Illustration J. Moore


[This article was originally published in the Huffington Post’s Contributors’ platform (no longer active) in October, 2016. I have updated portions to reflect the death on May 24, 2021, of my friend and colleague at VA Sid Shaw]

Introducing his guest

I had lunch yesterday with Dementia. That is, I had lunch with Sid Shaw, an old friend and colleague who brought his dementia companion with him. Sid made the formal introduction quite casually—nothing more than a matter-of-fact flick of the wrist—when halfway through lunch he handed me his MedicAlert bracelet with the tiny engraving, “dementia.” I did not tell Sid that dementia and I are former acquaintances; it wasn’t necessary to the enjoyment of our luncheon.

We were having lunch during the time he was visiting his family from an assisted living community several hours away. Sid’s take on the facility is blunt, “It’s barely assisting me, and it ain’t living.” A day or two away from his healthcare apartment was a treat, and he was enjoying it.

The two of us—fellow writers who can still lie about how much we look like we did many years ago, with only a few surface modifications—were seated in a small storefront restaurant in the Washington suburbs, not too far from Sid’s family. Sid had been a speechwriter for the Secretary of the Department of Veterans Affairs, but to use the term “speechwriter” does not do justice to the lyricism of his prose. I followed in his footsteps at VA, but I never matched the quality of his writing, nor could I touch his abilities as a five-star raconteur. Oh, my, how Sid could tell stories.

A mutual friend contacted me the week before the lunch to let me know that Sid would be in town for a rare, and possibly last, visit before the syndrome made such trips impractical, if not unrecognizable for Sid. At this stage of his dementia, Sid still knows me, and he’s got a pretty good hold on himself, most of the time. But that is changing.

The brutal unfairness of dementia

Dementia is tunneling progressively into random portions of Sid’s brain, short-circuiting his memory, unwiring his mechanisms of behavior, stripping away that which not only makes Sid “Sid” to others, but those parts of Sid that make Sid “Sid” to himself. And yet the disease could not beat out Sid’s ability to poke fun at himself, as his daughter, Amanda, reminded me shortly after Sid’s death. “Dad would say, ‘If I ask you for $2,000, don’t give it to me; I’ll forget where it came from.’”

I make no pretense about diagnosing or even understanding the specifics of Sid’s dementia; I only know that the man sitting at the table with me is undergoing a transformation I’ve seen before, a transmogrification, really, that has both sadness and humor playing out on the same stage—often at the same moment.

Watching and listening to someone with dementia like Sid’s is akin to watching someone perusing the stacks of a vast library—imagine the Library of Congress, or the Bodleian Library—a library they knew well, but which has now become a disordered storehouse of jumbled memories and lost experiences. “Ah, this book is a good one, I remember it well!” But then, “No…that’s not the right one after all. Maybe this one?” They reach for another book, but stop in mid-reach, forgetting why they reached in the first place.

So they walk down a few more rows to where the photography books are kept, eager to see the pictures of the old days. But the albums don’t look the same, the pictures are out of order, or they are missing entirely. “Oh, but look! Here is a familiar face.” And suddenly the memories flow in the strong current of recognition. Every detail of that person’s life is remembered: who they knew, where they lived, even what they wore. And then, click, the memory goes dark. Frustration sets in and the tears come. And they are destined to stay in that crumbling library for the rest of their lives. Sometimes they know their future, and sometimes they don’t, only to discover the truth all over again.

From a personal perspective

No, I can’t diagnose or make a medically competent comment about Sid’s particular version of dementia, but I can relate to the symptoms. My father and mother both bore the weight of dementia in the latter parts of their lives. My mother’s dementia arrived first in the closing stages of her Parkinson’s disease and abetted by alcoholism. Her dementia came out as anger, bitterness verging on viciousness, and as night terrors.

Phone calls at midnight that began with, “There are snakes coming through the blinds!” only ended after an hour or more of terrifying accounts of vile mistreatment by her caregiver was barely assuaged by my promises to drive out and see her in the morning. When you’re the adult child of a parent with a brain-altering disease, a 120-mile round-trip is the least of your worries. When she died on May 4, 1997, at 75, the little left of her I knew was masked mostly by pain and morphine.

My father’s dementia, a type known as vascular dementia, or vascular cognitive impairment (VCI), was one of many ailments that bedeviled my dad for the last 15 of his 81 years. Glaucoma, diabetes, and obesity set the stage for my father’s dementia, and as his blood vessels closed off, his brain began to play the most devious and sad tricks on him.

He became frustrated quickly, he angered in a flash, he cried over old songs and videos of musicals—or nothing at all. He shouted commands, fell into depressions. Crawled inside himself. And then his innate good nature would resurface and he would smile at a thought, or a comment, or because his daughter-in-law had kissed his forehead. The gentle southern boy, the vibrant fighter pilot and commander, the gentleman farmer and friend to all, the loving father and devoted grandfather, was deceived and abandoned by a brain no longer able to process the world around him.

Grace and composure--and humor--will be Sid's legacy

So when I sat down at the table with Sid, and looked into the eyes of a man whose life had been so filled with memories of achievements and adventures and friends and family, memories that were all slowly fading away, never to return, I marveled at his composure, grace, and, yes, humor, when he handed me his MedicAlert bracelet. Dementia. What a luncheon companion it was.

[Note: In a conversation I had with Sid’s daughter, Amanda, a few days after Sid’s death, she told me how Sid wanted others to better understand his disease. She said that Sid had read Robert Davis’s book, My Journey into Alzheimer’s Disease: Helpful Insights for Family and Friends, and after reading it, he asked his family to order many copies of the book, and had them sent to his friends. That sense of sharing was so totally Sid]

Some stats to consider:

According to the World Health Organization’s 2019 data, 50 million people worldwide live with dementia. Among them, 58% live in low- and middle-income countries, and this proportion is projected to rise to 71% by 2050. The total number of new cases of dementia each year worldwide is nearly 7.7 million, implying 1 new case every 4 seconds. The number of people with dementia is expected to increase to 75.6 million in 2030 and 135.5 million in 2050.

The Institute for Dementia Research & Prevention at the Pennington Biomedical Research Center at Louisiana State University System notes that “In the US there are believed to be at least 5 million individuals with age-related dementias. These numbers will only to continue to rise with the aging of the US population. It is estimated that 1 in 6 women, and 1 in 10 men, who live past the age of 55 will develop dementia in their lifetime.

There are many fine organizations working on myriad aspects of dementia, including the Alzheimer’s Association www.alz.org, and the Alzheimer’s Foundation www.alzfdn.org.

Tuesday, May 25, 2021

This is the Culture to Cancel






A spat over a Cat (the one in the Hat)

Writing in the Sunday, May 16 edition of The Washington Post, reporter Valerie Strauss reopens a discussion she had with Philip Nel, author of the 2017 book, “Was the Cat in the Hat Black?: The Hidden Racism of Children’s Literature and the Need for Diverse Books.” Strauss initiated a conversation with Nel shortly after his book came out, and then she reprised the conversation earlier this year, when, as Strauss writes, “…it was falsely reported that a Virginia school district had banned the books of Dr. Seuss, the pen name of Theodor Seuss Geisel.”

In her article, Strauss gives Nel an opportunity to discuss anew the politicization of racism in children’s books, and Nel opens his piece with this:

“Why not break up with your favorite racist childhood classics? Maybe doing so will break your heart a little. But, to quote a line attributed to Rumi (but which is probably not him), ‘You have to keep breaking your heart until it opens.’ ”

Nel continues:

It is possible to cancel a culture. More than 300 Indigenous languages were once spoken in the United States. Only about 175 of those languages remain today. Colonization, genocide, forced assimilation have all been very effective at canceling cultures.

However, the “cancel culture” that animates professional grievance actors today refers to culture under no threat of cancellation. Dr. Seuss books. Muppets. Disney. White innocence. Because it’s hard to cancel a dominant culture. “Cancel culture” is a white-supremacist fantasy that creates villains and then mobilizes anger against the villains it has imagined.

To censor anti-racist critiques, cancel culture hysterics describe anti-racism as censorship. To attack the freedom to fight oppression, they claim that withdrawing racist children’s books is somehow an assault on freedom. This is doublespeak, the culture-war version of former president Donald Trump’s “big lie.”

Dr. Seuss Enterprises ceased publishing six Dr. Seuss books. But these six books are not censored, not banned, not illegal. I own all six and have spoken of them very publicly — on television, sometimes holding the books up to the screen. No government agent has yet appeared at my door demanding that I surrender my copies. And 50 other Seuss books are still in print.

The lie of cancel culture depends upon nostalgia. As Walter Benjamin once observed, children’s culture evokes what is both cherished and lost, a combination that has the potential to be make us reactionary.”

For your consideration: Five Points

I quote Nel at length—with Ms. Strauss’s permission—because what Nel offers is a clear-eyed five-part strategy—or coping mechanisms—for reviewing what we thought and felt about what we read or saw. Nel’s five points offer a reasonable path toward building an honest, realistic assessment of how we need to examine those earlier, lost, ideas. That path leads to a goal of creating a model of behavior that honestly informs us of the pain, unfairness, inequality, injustice, and immorality of the stereotypes we either willfully or unconsciously embraced and promoted because, at the time, they were helpful to our own sheltered ends. Nel’s five points—condensed here, but available in Strauss’s link, above—are:

First: “Reject the notion that children’s culture must inspire only pure-hearted affection for its simplicity and “innocence.” Embrace Dr. Seuss’s poetic brilliance but reject the toxicity of his racism or his sexism.”

Second: “Unlearn popular myths about history and social progress — myths that defend Dr. Seuss (born in 1904) as a “man of his time” or that say, ‘That’s how they thought back then.’ At all times in any given place, all people did not think alike. You can test this thesis right now: Do all people think alike in 2021?”

Third: “Unlearn the ‘either/or’ idea of racism. Racism is not an either/or. It’s a both/and. Starting in childhood, we absorb racist images and ideas without our knowledge and without our consent. Dr. Seuss was not aware of how thoroughly his imagination was steeped in a white-supremacist culture.”

Fourth: “Unlearn the notion that racism depends upon perception or intent. Many have said that Dr. Seuss didn’t intend racism in his caricatures, and that his anti-racist works prove that. But racism doesn’t depend upon perception or intent. It’s very easy to participate in white supremacy without awareness or active malice.”

Fifth: “Because any culture you grow up in seems natural and inevitable, sometimes you simply don’t see. On the morning of March 2, I I heard that Dr. Seuss Enterprises was withdrawing these six books, via a text from my friend, professor Sarah Park Dahlen. And I immediately thought: ‘“And to Think That I Saw It on Mulberry Street,” “If I Ran the Zoo,” and “Scrambled Eggs Super!” will be withdrawn for their racist caricatures. They were.’”

Is he talking about me?

Strauss’s article and Philip Nel’s commentary touched on many of the books I grew up with (I’m a Boomer, born in 1949). But his five points also caused me to revisit my reactions to those books my parents read to me when I was still a small boy and many of which I continued reading in my pre-teens. From Little Black Sambo to Song of the South to numerous Disney films and myriad children’s books, films, and songs considered at the time “family friendly,” I had a child’s reason to believe then that such entertainment simply made me feel good, comfortable, and at a blissfully unaware peace with the world around me. The concept of racism, much less the idea that I was aware of the racial overtones of those movies and books, was simply not part of my childhood lexicon or thinking.

Uncle Remus, for example, as played by James Baskett in Song of the South, was not a Black man to me; he was a comforter, a gentle hand on my heart…a heart that knew nothing at all about the sad state of Blacks in America, or the unconscionable history that attaches to every Black American. Remus’s simple wisdom (“Don’t you know you can’t run away from trouble?“He [Br’er Rabbit] left his old troubles behind, alright, but he was headin’ straight for a whole mess of brand new troubles.”) mirrored the truths my parents, teachers, and faith leaders espoused on a regular basis.

Both my grandfathers—Gramps and Dinty—were comforting figures throughout my childhood. They were kind and gentle men who cared very much for their grandson’s heart. Gramps's deep New England voice and Dinty’s soft Tennessee lilt enraptured me with their respective life lessons offered just as powerfully, touchingly, as Uncle Remus’s stereotyped sing-song Southern drawl held my charmed attention.

Viewed from a track parallel to other children’s books and films of my 1950s youth, the Seuss books (my first memory is of Horton Hears a Who), offered their own wackily-drawn life lessons, complete with ridiculous characters and fantastic locales totally removed from anything in my real world. And that was fine with me.

For me, Seuss offered simple, easy to follow narratives about how differences are really not so different; how kindness goes a long way; how intransigence is counterproductive; how striving for elitism is really a path to moral bankruptcy; how there is a whole world out there to be explored as long as you have courage to take it on; how each of us is special but, at the same time, not too special to be any better than the next kid. Lessons about the pitfalls of disobedience and lying (Cat in the Hat) were made vivid under Seuss’s creative hand. 

It wasn’t until decades later that the subject of the Cat’s ethnicity or color came to my attention. And once the book became a target in the mid 2010s—assailed as a blackface parody, a minstrel show, a slapstick Vaudeville act for two White kids and a snide fish— some educators and political activists began getting nervous not only about Cat, but about other Seussian characters and story lines. Which brings us to Valerie Strauss’s story reprising Philip Nel’s 2017 article, and the troubling aspects of cancel culture weighing in on childhood icons promoted by imprecise family history.

Like millions of Americans, I have spent hours exploring family trees, fascinated (sometimes mystified) by every new detail that becomes available as more and more DNA and historical data is fed into the genealogical engine. I never miss an episode of Finding Your Roots, and I still have dreams of visiting my family’s 15th-, 16th-, and 17th-century ancestral homes in Ireland, England, and Scotland. My mother’s side of the family arrived on the Mayflower. Her relative, Stephen Hopkins, had been with the Jamestown colonists before taking on navigating duties aboard the Mayflower. 

My father’s family came a bit later, leaving Ireland and arriving in Virginia in the late 17th century, settling first in North Carolina in the 1700s, and then finding their way to Tennessee in the mid-1800s.The genealogical record is packed with the history of the Moore diaspora across the mid-Atlantic- and Columbia River South, and the profusion of Moores in North Carolina alone makes it rough going to tease out the actual family line attached to my bunch.

Beginning to tie it all together...painfully

Where does all this fit in with cancel culture and The Cat in the Hat? It fits because while I enjoyed hearing all the stories about my ancestors—all the good, exciting, founders and pioneers stuff—there was a growing body of information available to me over time to ascertain certain uncomfortable truths which would make those oft-told tales more realistic in terms of the racism that pervaded every aspect of my family’s story. But I chose not to examine those truths that didn’t fit well in my privileged comfort zone, preferring the whiter side of the genealogical gray areas to the darker ones that might upset my center of gravity. That attitude falls into the “we-know-what-we-want-to-know” category, a classic cancel culture mindset.

The Mayflower colonists and those who followed in their wake were not tolerant, Indigenous-people-embracing, open-minded men and women. The first Thanksgiving myth is just that…a myth propagated over the centuries and promoted by White politicians to ensure that school children got one side of the story, a White-owned version of a multifaceted experience that often did not end well for the Native Americans, and laid the groundwork for generations of White denial and manifest destiny rationalized genocide. 

I have no doubt that my ancestors who walked off the Mayflower and into family lore were not ready to accept a different people who populated a well-developed society. Native Americans may have been willing to share their food, but they were unwilling to bow in subservience to the newcomers. The first feel good moments were soon replaced by brutal cultural clashes.

Does that mean I should muffle some of my ancestors’ accomplishments? One of my great uncles was Dr. Hiram Corliss, a hard-core abolitionist in New York, an integral cog in the Underground Railroad. My mother’s father, Charles Brackett, was an early contributor to the NAACP and supported the defense of the Scottsboro Boys in the early 1930s. A certain amount of family pride attaches to these two men for their willingness to stand against White supremacy. Right? Well, maybe, but there are counterbalancing and difficult-to-explore histories that caused me to look at unsettling details of my family tree.

Taking off the blinders

Here is where I appreciate Nel’s first two points: “Reject the notion that children’s culture must inspire only pure-hearted affection for its simplicity and ‘innocence”; and, “unlearn popular myths about history and social progress. At all times in any given place, all people did not think alike.”

As Charles Brackett’s biographer, I’ve read more than 30 years of his diaries, including those covering his most active years in Hollywood—1935-1955. On the racism front, Hollywood has little to be proud of during those years (and we’re not even going to begin discussing 1915’s Birth of a Nation). As an Oscar-winning writer/producer and as an executive of the Screen Writers Guild, my grandfather knew and worked with racist and misogynist motion picture icons. He knew and worked with the producers who were cowed by the House Un-American Activities Committee (HUAC) into firing actors and directors accused of being communists (The Hollywood 10).

You don't have to achieve a balance

My grandfather knew all of them, knew what the Blacklist would do to their careers, but he did not fall on his professional sword for them, (nor did he turn his back on them in public or in private despite his strong Republican political leanings). What I found particularly irksome—and unresolved—about my grandfather’s diaries is that he so often used ethnic slurs to describe his Jewish colleagues, and he used raw or unflattering language to describe female actresses who did not meet his standards of beauty. How do I balance all of this out? I shouldn’t have to, and I don’t.

I must parse the family stories I once took as truth and examine anew those elements which make me uncomfortable today—the human frailty, sexism, religious intolerance, brutality, and racism that may have been common in their world but which were still morally wrong. Holding them accountable—even centuries later—strengthens the foundation of my understanding. It is not enough to simply say “Ecce Homo” and give a pass to my grandfather’s character flaws as less important than his virtues.

I struggle with one aspect of Nel’s admonition: I cannot unlearn the myths. They have become part of my own story. But I can place them in their proper perspective, and strive not teach them to the next generation, and impress upon them Nel’s point, that “…any culture you grow up in seems natural and inevitable, sometimes you simply don’t see.”

Striking too close to home: a terrible inventory

Of all the family stories that I wanted to embrace as a boy were those of my father’s side of the family, the spread-out band ranging from the Carolinas to the western reaches of Tennessee and to Texas beyond. There were stories of patriot heroes, notable educators, and hapless frontiersmen (an uncle who froze to death, sitting on a tree stump with his rifle on his lap). But, with the help of a deeper historical review, troublesome truths emerged.

In the honorable shadow of a Revolutionary War officer Moore who acquitted himself well under Washington’s command, there was found an ominous passage from the inventory of one of my great grandmothers, a widow who inherited her husband’s property in 1805. At the top of the page, a clerk in North Carolina wrote, “Five Negroes.”

And there it was. A direct link between me and human bondage; a hot wire running from an 18th century auction block to my 21st century heart.

When I read that line, cold and impersonal on my computer screen, I felt the shame and sadness and pain of those five human beings. They were not Uncle Remus with bluebirds on their shoulders. They were owned, inventoried and enslaved property, and an unknowable number of people in my family line accepted their condition as normal, just, and defensible.

To be clear, I’d known for many years that there were Moores fighting for the Confederacy, just as I’d known there was a Moore who fought and died at the Battle of New Orleans under the command of Andrew Jackson, arguably the country’s foremost advocate of total genocide. But until I opted to dig deeper, those Moores were incomplete sketches along the family line. While it is possible that the Confederate Moore’s motivation may have been to fight against “Northern aggression” rather than for slavery, the inescapable truth is that the cause for which he fought was an extension of that hateful inventory of owned humans compiled for my great grandmother 60 years earlier. And that inventory item is probably only one data point connecting those owned human beings to earlier families of enslaved people.

With these images in mind—a Jacksonian soldier, a slave owner, a fighter for a hateful cause, and, most likely, others in the family line whose racism, implicit or complicit, advanced the suppression of Blacks and other minorities—I have adopted two more of Nel’s points: I will try harder to “unlearn the ‘either/or’ idea of racism. Racism is not an either/or. It’s a both/and.” Also, I need to work harder to “unlearn the notion that racism depends upon perception or intent.” As Nels notes, “Racism doesn’t depend upon perception or intent. It’s very easy to participate in white supremacy without awareness or active malice.”

A rising tide won't float some boats

During my career as a Cabinet speechwriter, I often fell back on the “a rising tide lifts all boats” maxim to assure the audience that whatever program or policy the administration was flogging at the time, everyone would benefit in the end as long as everyone got on board. With hindsight, I have come to realize that the epigram was never about something concrete, something possible, something worthy of effort. Too often, the “rising tide” aphorism assumes everyone has a boat to begin with. We know that is not remotely true. And just as often, we presume the waters on which those who do have boats are all the same waters. That is not true either.

In the real world, many people, despite their best efforts, find themselves on economically- or emotionally-fragile boats tied fast to piers of hopelessness or run aground on reefs of social injustice. For them, any rising tide—of motives pure and righteous or motives evil and selfish—will overwhelm and swamp their already unstable skiffs.

In the real world, many people have no boats at all—they are treading water in financial, employment, mental, marital, parental, geographic, or educational shallows, their toes barely, if ever, touching the sand beneath them. For them, a rising tide benefitting others will only increase their risk of drowning.

Time to cancel cancel culture

The clear and azure economic waters in which CEOs and hedge fund managers sail their yachts are not the same stained and brown frightening waters that surround the leaky rowboats of the poor and disenfranchised who live a paycheck away from bankruptcy or homelessness, or who have no paycheck at all. To think otherwise—to embrace trickle-down theory or up-by-your-bootstraps MAGA-deluded conservatism—is to engage in a sort of magical thinking that the waters of the world rise and fall with equanimity, humanity, and generosity. They do not, though there is a culture of denial that continues to promote that dangerous thinking. It is a culture the wild-eyed machinations of which make The Cat in the Hat’s house-wrecking behavior seem tame by comparison.

It is a culture that believes in a decentralized, one-size-fits-all-who-are-entitled-to-it government (especially if that size is small and cheap), while willfully ignoring the input of critical liberal thought, inclusivity, and planning that would put the kibosh on ruthless profiteering.

It is the culture that promotes leadership by fear, threats, and reprisals; it is the culture that panders to the rich and persecutes the poor; it is the culture that seeks to Photoshop history by painting over every dark background with white; it is the culture that raises barriers to progress while lowering barriers to nonsensical environment deniers; it is the culture that rewards the ignorant politician by silencing the educated voter.  It is a culture long overdue for cancellation.

An example: civilization at its worst

The injustices and inhumanity visited upon the indigenous peoples of Australia and the Americas by uninvited European voyagers bent on geographic and cultural dominion serve as just one example of the unintended consequences of imperial hubris. In a truly enlightened world, the dull reverberations of the gilded bells of ruthless hegemony and genocide would serve as examples of cancel culture in its most corrupt guise. Unfortunately, the centuries-long lessons of racial predation and the objectification of native heritage amount to "who cares?" among far too many  people.  

Break the cycle, lean in to accountability 

My son Carter, a former U.S. government employee who moved to Australia several years ago, comes at the issue of cancel culture from his perspective of working for the governments of two democracies equally freighted with old and new racial, social, political, and economic baggage. In an online exchange we had recently on the topic of cancelling or rebranding cancel culture, Carter wrote, "The mission isn’t to erase an uneasy heritage, but expose it to break the cycle of its ugliness being bequeathed to future generations." 

I couldn't agree more, and I've thought-gamed an imaginary brave new world where cultural accountability looks like a mandala on which the infinitely-colorful patterns of personal, community, corporate, political, and government interests wheel around a hub constructed of shared goals and justly-allocated-and-paid-for resources. 

In such a utopia of cultural accountability, admitting failure would simply be an element of progress; acknowledging the brutality and injustices of the past would be prerequisite for present and future success; contrary opinions would be sought and valued; dissention would not mean dislike and would be relied on as a valuable check on poor or hasty planning. In my imagination's travels in the universe of cultural accountability, inclusivity would be organic, not legislated or adjudicated. 

The dream goes far beyond those examples, but, in the end, it is still a dream. But does it have to be just a fanciful imagining, or is it possible to at least begin moving toward such a culture of accountability? 

The trick is how to reach the hardened hearts and porous brains of the who-cares?, mind-your-own-business, and not-in-my-backyard segments of our population. No one is saying it will be an easy lift. If getting Covid-19 vaccine into the arms of that large minority of the American public is a struggle, getting cultural understanding into the minds of the unwilling and uncaring will either be Herculean or Sisyphean. 

But, it will be neither of those, nor anything else, if we do not make a start.   


Monday, May 3, 2021

Morphine Haze


May 3, 1997

Walking the tightrope between here and the hereafter

Hummingbirds are hovering at their feeder, tiny pulsating out-of-focus splashes of blue-green iridescence shimmering just inches away just outside the bedroom window. Beyond the window, past the hummingbirds, past the garden of emerging flowers edging the neatly trimmed lawn, beyond our small lake surrounded by willows and sycamores, the Virginia countryside is coming alive with the colors and sounds of spring. On my side of the window I stand watch over my dying mother. The colors in her room are the faded peach of over-washed bed sheets, the stale white carpet stained with spilled medicines, the flat ivory walls on which hang muted prints of obscure Renaissance cities. These all lie in the shadow of death’s gray imminence. The ceiling fan beats in dull syncopation to the gasping tremors of my mother’s labored breath as the tattered remains of her lungs struggle to process the sanitized air. Turning away from the world of new life surrounding the house, I walk the few steps to my mother’s bedside and sit next to her to listen to the fight between breath and death. It has fallen to me to mediate the endgame. Death is winning. But the battle is not over.

During the previous year, I used up most of my negotiating tools: the doctors, the nurses, the special equipment, assorted drugs, and God. For a while, any combination of these options temporarily held back the tide of pain for my mother or otherwise diverted the rivulets of fear and frustration that inevitably weep from the walls of denial hastily built in the minds of the terminally ill. My mother made little pretense of building such walls. The boat in which she sailed to meet death was floated on an ocean of alcohol spread beneath a nicotine overcast. She knew where she was going. Her only fear and frustration was in not getting there before the pain. I abetted her devious plan to arrive at the finish line first by supplying her with all possible implements of relief, short of her own preference for a quick end. Now, as I watch her, I notice a small quake of pain sending a shockwave across the taut skin of her forehead. It is gaining on her.

Pushing back against the inevitable

I get up and walk to the kitchen, open the refrigerator door, and take out the small, chilled bottle of morphine. Only her doctor, her attending nurses, and I are allowed to administer the doses needed to quell the tremblors and subdue pain’s aftershocks. In another time, the responsibility would have fallen to my father, but he is wheelchair-bound and is himself becoming an invalid. Even if he were able to help, the demons that live within him would prevent him from treating his wife to the contents of this vial.

With a syringe and morphine bottle in hand, I return to my mother’s bedside. In my brief absence, the pain has set in and as I enter the bedroom I hear her moan in discomfort. She is lying on her right side, her tiny figure barely perceptible beneath the thin sheets and comforter. Her head is turned toward the ceiling, her eyes closed, their parchment lids yellowed and damp. She is 76, and for the past 20 years her spine has been curving and twisting, slowly, cruelly, stretching and molding her shoulders into a rigid hump that finally deprived her of any chance to lie on her back. Fifty-five years of smoking and drinking, little calcium intake, no real effort, and certainly no desire, to learn new nutritional habits or to grapple with the problem in its early stages have left her vulnerable to the worst this disease has to offer. Making my way around the foot of the bed, I watch her body twitch, as if she is trying to shift position, and I hear her take in a sharp breath.

“Are you in pain?” Stupid question.

“I’m right here, Mom…hold on.” I’m never sure when she can or can’t hear me — or at least I’m not sure that if she does hear me, she comprehends anything I’m saying. I keep up a banter nonetheless, probably as much to soothe my own nerves as to calm hers. I take my place on a small chair by the bed and reach over and hold her right hand for a few moments, gently rubbing her palm with my thumb to let her know I’m there. Ever so softly she closes her hand around my thumb and I know that we’ve made contact.

“Are you in pain?” Stupid question. As I ask it, I begin to feel her skin vibrate against my hand. It is the kind of low-voltage shock that I used to get whenever I touched the leads of my electric train transformer. It was disconcerting buzz, and I cannot imagine what kind of pain is causing the same buzz to course through my mother who is now only skin and bones.

“I’m going to give you some morphine, Mom. It’s going to help in just a minute. Hang on.”

Hang on? That’s all she’s been doing, for God’s sake, much to her own disgust I’m sure. I open the bottle and carefully withdraw into the syringe as much morphine as the doctor prescribed.

Odious permission

“I’m recommending this dosage, though you may find a need to modify it depending on your mother’s pain,” he had told me several days ago. His orders for my mother’s drugs were always colored with more than a little vagueness; he didn’t want to bear the outright responsibility, or culpability, for allowing me to administer a lethal dose, but he had given me more than enough leeway to do so. The attending nurses — as kind as they were — never strayed from the prescribed dosages. But I knew that if they were to arrive at the house and find my mother dead, no questions would be asked. Perhaps it was this silent acquiescence that hardened, rather than softened, my resolve to withhold the dose that would release Mom from her tormented body. The irony of the situation was unknown to the doctors and nurses, but it was not lost on me. It wouldn’t have escaped my mother’s attention, either, since she was the author of my ironic life. I suppose it’s possible that even in her dying state she may have sensed that I was restraining myself from applying the dark lessons she so ably taught me.

How do I love someone so filled with anger?

Mymother was a master prevaricator, a consummate circumlocuter, and a wily practitioner of the art of dissembling. Lying came as easily to her as smoking or drinking, both of which she’d begun in her early teens. Her notoriety as an adolescent well-versed in deception and deceit was summed up by her mother, who used to say, “Watch out. Here comes Betty with her viper’s tongue.” My maternal grandmother, was, by all accounts, a soft-spoken, somewhat frail Indianan descended from solid Midwestern stock.

What I know of her is mostly anecdotal — grandmother Elizabeth died the year before I was born and her death was almost immediately relegated to a locked family closet. My mother advanced the story that her mother died of consumption, though I eventually figured out that was a code word for alcoholism. Given that my mother and her sister were also alcoholics, the disease of the bottle is consistent with their mother’s demise.

“…even though human life may be the most precious thing on earth, we always behave as if there were something of higher value than human life…But what thing?”

What I do know for sure about my maternal grandmother is that she had a soul. I found it in a book she’d read in 1932, a first printing of Antoine St. Exupery’s Night Flight. The book was handed down to me when my grandfather’s estate was settled in the mid-1960s. I’d discovered St. Exupery when I was learning to fly, and along with Steinbeck and Faulkner, St. Ex became my literary touchstone whenever I sought to unravel the mysteries of solitude. In Night Flight, St. Exupery posed the question, “…even though human life may be the most precious thing on earth, we always behave as if there were something of higher value than human life…But what thing?” What thing, indeed, I wonder, as I sit next to my mother, and I wonder what is next for her. Perhaps her mother will explain it to her more fully when they meet somewhere aloft in St. Exupery’s higher world.

The dubious distinction of bloodlines

My mother’s paternal side of the family was classically New England Blue Blood. Mayflower descendants, Revolutionary War patriots, leaders in Massachusetts, Rhode Island and New York politics, a builder of an Iowa college. That line includes a medical doctor who was also an abolitionist of some renown. Most were lawyers and bankers. All now reside within private cemeteries inside granite mausoleums marked by weather-grimed pigeon-stained pillars engraved with the family name.

My mother’s father only superficially carried on the family tradition. He earned an undergraduate degree from Williams, and a law degree from Harvard, but he found his love in letters. He abandoned the family trades of law and politics and became an author, playwright, columnist for the New Yorker, and, finally, a Hollywood screenwriter and producer. In the late 1920s, he often lunched at the Algonquin Hotel in New York with his Roundtable colleagues including Dorothy Parker, Alexander Woollcott, Edna Ferber, and Harold Ross. They spent hours raking American society.

He was never comfortable with the middle class, and he studiously avoided any consideration of the great unwashed lower strata. His aloofness toward the lesser-educated was carried forward in my mother’s lifelong distaste for, and immediate dismissal of, anyone who made the mistake of ending a sentence with a preposition. His association with the Roundtable was a source of envy for my mother who, I think, for the rest of her life wished she were as witty, cutting, and clever as Dorothy Parker, whom my grandfather idolized.

In my pre-teen years, my role model for social behavior was, by default, my mother, since my father was so often away on missions of national importance — or at least great secrecy — and I rarely had his full attention. Don’t get me wrong; my dad loved his children, and he and I had our father-son adventures and shared hobbies, but I believe he loved his military mission so much, that family often took a backseat. No West Point graduate lived the academy’s motto, “Duty, Honor, Country,” with more faithfulness than did my dad.

In any event, I was left with my mother’s daily examples of white lies, exaggerations, and high dudgeon over the smallest slights that she perceived as flights of arrows launched against her character by her peers who were simply seeking her participation in their clubs or card games or shopping trips. She could not resist the temptation to speak ill of the homely, to deprecate the decidedly dull-witted, or rape the reputations of the nice women who populated the air bases upon which we lived. She was, in short, a piece of mean-spirited work, though to see her in public was to see her fabricating a completely benign and collegial cloth around herself as a sort of cloak of pleasantness to get her through what she would, once back home, characterize as a “God-awful” evening.

The acid of her tongue seeped into my veins

Slowly but surely the drip-drip-drip of her acid tongue worked its way beneath my trusting skin, melting the inner workings of reason, and upsetting my moral chemistry to the point where even I began to question the qualities of my childhood friends who were, of course, the offspring of the mothers and fathers my mother reviled. I began distancing myself from the games all my buddies were playing, keeping a few feet outside their circles of fun, shying away from the all-out joy of just being an average eight-year-old kid. I made terrible choices so often that I wonder how I made it to my teen years. Prescription drug abuse and a mental breakdown were signs I was not taking well to what should have been happier times. It took me the better part of four decades to come back around to some semblance of normalcy, but while my mother’s dying contributed to my reawakening, I am sorry to report that several more years would have to pass before I would be thoroughly rinsed and recovered from her acid bath.

“The difficulty in life is the choice”

As I took my place beside her and prepared the morphine dose, I was being given an opportunity — a free-throw, if you will — to lie with permission and bring a swift end to her suffering. And who would blame me? No one, it seemed. I was being encouraged, (not just tacitly either), to accept the support of people who were willing to turn a blind eye to my ultimate lie rather than allow my mother to continue her agonizing descent into a living hell. But I wouldn’t take that gift…my confessions will have nothing to do with a mercy killing. The English philosopher George Edward Moore (no relation), known for his common sense approach to life, neatly summed up my dilemma: “The difficulty in life is the choice.”

“Can you open your mouth a little, Mom?” I ask her this same question every time, and I think that if she can hear me she at least will understand what is about to happen. Whatever she may or may not comprehend, her jaw usually relaxes enough for me to squirt the morphine into her mouth. As I press the tip of the syringe to her lips, her eyes suddenly open as her hand slides above my wrist and clamps down on my forearm. I pulled the syringe back, afraid that she might bite down on it. For a moment, I think she is actually going to die and that this is the final struggle…the death throes. Her breathing does not cease, however, and after a minute or so, her grip relaxes a little, though her eyes remain open and begin scanning the ceiling as if looking for something familiar.

Though the eyes dim, the beauty remains

“Mom, I’m over here,” I say, sliding my free hand under the back of her head and gently angling her face toward me. Her eyes fix on me, staring but unseeing. I remember them as they once were — sparkling, piercing, blue-gray, capable of picking out a song bird at a thousand yards or a lie at three feet. Pilot’s eyes. Artist’s eyes. A mother’s eyes. Now they are little more than runny and diluted watercolor remnants of their former selves, coated in a viscous layer of mucous and dotted with particles of junk skin.

Yet, there is still a light — a glimmer somewhere below the surface that I see. Or want to see. After all, the artist I am, the photographer I am, the writer I am come from my mother’s examples and lessons. How I hold a paintbrush and love the smell of turpentine and linseed oil; how I frame the world around me to encompass the rule of thirds or strive to achieve the visual equivalent of the golden mean through my lens; how I edit, edit, edit and then rewrite and edit again, never satisfied but ultimately letting go…these creative traits are as much a part of my mother as they are of me, and I’m grateful for them. The complex fabric of her character defies unraveling, so interwoven are the strands of her being.

“Uhnnnnnmmmmm.” The sound comes from deep within her; her lips don’t move. The part of her that is afraid of the pain is trying to get out. She tries to move her left hand and arm but the most she can muster is a feeble flailing. The pain is digging in.

“Look at me, Mom…hold still for a moment. Look at me….shhhhhhhh. It will be okay.” I let the side of my free hand, still holding the syringe, caress her cheek and then glide across the top of her head. I’m flying blind here…I don’t know any other way to soothe her, to assuage the fear and help her withstand death’s savage entreaties.

“Ohhhhhhhhhhhhhaaaaaaa……….”

“I’m here, Mom…I’m right here. Hold on and let me give you your medicine. It’s going to help you but you need to help me first.”

A glint of the past

“Mmmmmmnnn.” She blinks back a thick tear, her eyes widen, and all at once I see an open passage to the dark keep where the spirit of who she once was struggles against the chains of her disease. The happy ingénue, the carefree aviatrix, the hell-raising bleach-blonde, the head-over-heels new wife, the mother of two, the Renaissance woman so far ahead of her time…the frustrated human being encapsulated in a crumbling shell of mortality.

I press the syringe to her lips, pushing it in half an inch, and simultaneously depress the plunger to release the potion that will calm her fright and still her pain. She watches me as the morphine spills across her tongue and drains down her throat.

“I’m here, Mom. I’m here. It’s okay. Hold on.”

The buzz that has been traversing her skin suddenly ceases, and her grip on my arm relaxes. I know the morphine takes several minutes to work…but she knows it’s there. Her eyes close. Morpheus has taken the high ground for now.

As the morphine kicks in, my mother goes limp, and I arrange her arms and head in the least uncomfortable position I can, not really knowing what does or does not work for her. I do know that the first hour or two of the morphine haze sends her somewhere far beyond the pain, though in the beginning a similar dose used to get her through an entire night. Once she is squared away, I take the morphine and the syringe back to the kitchen where I note the date, time, and dosage in a small notebook. In the end, the book matters very little, but it’s a record of sorts and it seems to make the nurses feel better when I stick to their routine. I’ve neglected a few entries from time to time, but I chalk those up to desperation — mine, mostly — when I was trying to quell a particularly heart-wrenching episode with my mother and her pain.

The lonely chasm of denial

Frightened by the impending death of a spouse

After storing the morphine in the fridge and washing the syringe, I walk from the kitchen to the study where my father is watching My Fair Lady in a self-imposed exile from the crumbling world on the other side of his house. In his late 70s, during these, my mother’s last days, he is a victim of glaucoma and diabetes and a never-to-be-diagnosed creeping paralysis of his legs. His principle source of mobility is his rubber-wheeled electric scooter which he uses to cruise through the house, knocking into walls and doorways that are outside his diminishing field of vision. We also have a chromed, four-wheeled mini-crane — a hospital-grade lift — to transition Pop from his cart to his chair, or from his cart to his bed. He no longer has the upper body strength to move himself horizontally from one seated position to another. Standing up became impossible for him several years ago. His disability crept up on him, but not completely without warning. He simply ignored the signs or dismissed his doctor’s plea to undergo early tests that might have uncovered the precursors to his paralysis and glaucoma.

A refuge becomes a prison; the prison becomes a sanctuary

The back room of the house became my father’s refuge with the comforts of a television, a videotape deck, a CD player, and a radio at the ready to satisfy his need to be immersed in old movies, old songs, and his beloved Redskins football, which he preferred to listen to on local radio rather than endure the broadcast-booth banter of commercially telecast games. The room was originally designed and constructed to be an office space for both my parents, with dual desks, cabinets, and drawers set into an expansive, built-in floor-to-ceiling bookcase. This bookcase contained my father’s entertainment center and custom-designed drawers for videotapes. These videotape collections held important clues to my parents’ world views.

Their tape library is a mirror to a world that never, ever existed in real time, but was very much in existence in their imaginary world. Musicals (South PacificOklahomaMy Fair LadyThe King and ICarousel); Retrospectives (Life Goes to the MoviesThat’s Entertainment); Film Noir (Citizen KaneSunset BoulevardThe Lost Weekend); Early Cinema (King KongWingsAll’s Quiet on the Western Front); and hours and hours and hours of taped episodes of the original Star Trek, a chain of morality teleplays thinly veiled as science fiction. The tape collection represented either escapist fare, contained in the musicals and retrospectives, or moral punishment, detailed in the stark black and white dramas with no redemption for their fallen heroes.

My mother’s father, the movie screenwriter and producer, released two hard-hitting social dramas in the 1940s. One detailed the downward spiral of alcoholism and the other examined the irretrievable glories of faded youth. The movies earned my grandfather two of his four Oscars. Both movies, counterpoints to his other, less threatening films, exuded a moody darkness upon which my mother fed, as if taking a meal of her father’s often troubled soul. My father never watched either of the movies, and it was just as well; he would never understand them or even care to.

Pop’s declining mobility and fading vision eventually discouraged him from using his side of the office area. My mother, on the other hand, despite what was a very painful spinal curvature and diminished health, continued to use her calendar, phone books, notepads, and computer to stay in touch with the outside world until she could no longer pull herself out of bed. An inveterate, incendiary — some would say ‘bomb-throwing — author of pointed letters to the editor, my mother applied herself daily in her little office cubby, cranking out letters of outrage against local politicians, zoning commissioners, hunters of cute woodland creatures, and failed national leadership.

Withdrawn, alone, and afraid

As my mother’s health continued to decline, my father’s fear of her condition ascended. By the time she was no longer able to recognize him or communicate with him, he had withdrawn entirely from the caregiving side of her world. Once in a while, he would cruise into the bedroom while the nurses were changing my mother’s Depends or feeding her a liquid lunch. On those occasions he would turn abruptly and leave the room. He did this, not out of a sense of decency, but out of a need to get away from the weakness, frailty, and vulnerability he could not comprehend and certainly could not assuage. By the time I had moved in to help my mother die, Pop had completed the distancing process and was fully ensconced in his private world of old movies, old music, and radio football.

When I walked in on him after administering my mother’s dose of morphine, he was watching My Fair Lady for the third time that day. In the background, Liza Doolittle was belting out “I Could Have Danced All Night,” and my dad was in tears.

“Hey, Pop.”

“…and still have begged for more……”

“Pop!” I shouted over the orchestration.

“I could have spread my wings, and done a thousand things…”

“Hey, Pop!”

“I’ve never done before…”

Pop was canted back in his reclining chair, not really focused on the movie, but rather somewhere off in time, reliving the scene and trying to capture the moment as if he were on the set with Rex Harrison and Audrey Hepburn.

I walked over to the television and bumped the sound down a notch or two, not wanting to be rude, but, at the same time, knowing that the only way to get his attention was to break the musical’s spell on him.

“Hi, Pop….”

He opened his eyes and peered across the room, squinting to make me out against the busy lines of the bookshelf. Thanks to the glaucoma, his sight was down to a tiny window of imaging — a small circle of recognizable objects surrounded by a ring of gray and then a ring of black. The gray ring was inexorably encroaching on the visible field of vision, and the black ring was beginning to cover the gray. Within a few years, only darkness would remain.

“Mom is resting now. She’ll sleep for a while,” I said, trying to stay within his line of sight.

“Oh?”

“She had a hard time of it…I think she was in quite a bit of pain,” I started to explain. His eyes met mine for a moment, then he glanced back toward the muted television.

“Are you staying for dinner?” he asked, moving off the subject at hand as he always did.

“Yes, but I wanted you to know that Mom’s had her medicine. She is okay now.”

“So you say.” This was my father’s ultimate one-line dismissal of virtually everything that he deemed unimportant.

For years, ‘So you say’ signaled the end of near-confrontational conversation.

“It’s not just me saying it, Pop. Mom has been in a lot of pain lately…it’s getting worse and more frequent. I just wanted you to know that she’s resting quietly now.”

Audrey Hepburn danced silently across the television screen, and my father reached for the remote to push the volume up.

“I could have danced, danced, danced…all night.” Pop watched Liza Doolittle collapse on her bed, worn-out giddy from success and love, and I wondered how he would know — or if he ever knew — what that was all about.

“I’d like a steak tonight. Are you going to the store?” He closed his eyes again and pushed back in the recliner, his feet lifted up, his body parallel to the carpeted floor. The movie continued without him.

“I’ve already been shopping,” I replied, “and yes, we’re having steaks tonight. You want a baked potato too?”

“Sure.”

“I’ll get things started in an hour or so…I’m just going to go back to check on Mom…see how she’s doing…make sure she’s comfortable.” I knew it was a fruitless attempt to refocus his attention on something he had no desire to revisit, but I was the helpless student of years of learning how to motivate with guilt. This skill had been taught to me by a master of the art who was even now, though she lay dying, reaching out to me to prick my father with her little needles of shame. Their pinpoints did nothing to move him to think more or less of her condition than he already did during the time when he and she could still talk about it. As I spoke to him, I could see that nothing had changed. I walked out of the room as he turned up the sound of the movie. “Danced, danced, danced………..all night.”

When you’ve done all you can, and it is not enough

The endgame approaches

My mother was sleeping when I walked into the bedroom, so I took a seat at the table that was set into the room’s bay window. I aimlessly sorted through a stack of mail that had not been attended to in several days. Some bills. A magazine or two. A few letters of concern from neighbors. Ads for charities. A newsletter from the Hemlock Society. The usual mix of letters and crap that normally filled their mailbox. I put the mail aside and stared out the window, listening to my mother’s breathing from the bed behind me.

I turned and looked at her. So small. On the one hand, she was nothing more than a desiccated container of brittle bones and unfulfilled dreams. All I had believed to be true got a revisionist’s recounting from her imperfect diary. She’d laid it on thick; I wasn’t nearly as happy, or as unhappy, as I had thought I was; my father really was there for me, but, of course, sometimes he wasn’t — but he meant well. She even tried to implicate herself, coughing out the words about how she really was not quite the saint I had thought she was. I don’t have the heart to admit to her that I’d reached that conclusion long ago. I heard all of this from a martyr about to expire on her self-made cross, wrapped not in a cloth of linen but in a Depends diaper. As she muttered on, her frail vocalizations guttering in the dry stillness of the bedroom, I looked out the window and across the valley and picked out signs of spring on a landscape sliding out of winter’s grip.

I considered the greening landscape outside her window, the woman lying in the bed behind me as was the ultimate alchemist of evil, and she had nearly 50 years to do her work on me.

One person, two personas

But…on the other hand, my mother’s creative and intellectually-nurturing side was all a child could want. She had cared for me when I was sick; she was an amazing chef; birthdays were over the top; she read to me during the many months I was blind; she loved word games and jigsaw puzzles and throwing murder parties and games of charades and camouflage; she encouraged my hobbies, my reading, my explorations of boyhood. She sang well, played piano and our harpsichord. She was patient when I stood next to her easel as she painted, explaining to me what color was all about, what pigments were, how brushes were to be cherished. She was the best driving instructor a teenager could have — her skills behind the wheel and with a stick shift were wicked mad; she flew with me when I was learning to fly, sharing her own flying tips, never gripping the wheel, reaching for the throttle, or shoving a rudder pedal in instinctive correction. She and I marveled at the vastness of space and the mysteries of the oceans. She was a high-contrast black-and-white photograph with no gray tones.

So it all came down to this: Sitting by my mother’s bed, repeatedly filling a syringe with enough morphine to keep the haze in place without actually killing her while I watched her gray-blue eyes well up in a silent plea for release. Her small fingers, with skin like thin, dried apricots, clutched at my wrist. They held me as if my arm were a trapeze bar high above the floor with no net. They were desperate fingers. For fifty years she’d dealt out more pain and frustration than she could have possibly felt as her own life was ending.

Her frightened eyes, bathed in a constant wash of viscous tears, darted between my face and the vial of morphine from which I injected that measured dose of relief. With perfect knowledge of the consequences of my actions, I resisted and did not do that one thing my mother wished me to do. Each time I capped the vial, watched her eyelids flutter, and felt her fingers slip away from my arm as she fell to the net of painless sleep, I knew that her wish remained the same, but I did not comply.

I turned again to the window to watch the geese flare low across the lake and settle into the slate-colored water. Soon the cattails, willows, and sycamores along the water’s edge would replenish themselves to bask in the spring sunshine and bend softly in the first zephyrs of summer. And, after May 4, 1997, I would be standing by this window with my back to an empty bed.

Journalist, former Capitol Hill staff (House and Senate), former Cabinet speechwriter, editor, photojournalist and bird photographer. Top Writer Quora 2016–2017