In ‘The Living Sea of Waking Dreams,’

— Last-ditch medical interventions are their own horror story

Confined to a hospital bed, her 86-year-old body shutting down, her mind “breaking into fragments and receding,” Francie asks a nurse to bring her a contemporary novel. The nurse returns with, of all things, “Sabbath’s Theater,” Philip Roth’s sexually explicit work about an aging, suicidal creep. It’s just one of many indignities visited upon poor Francie in “The Living Sea of Waking Dreams,” Australian writer Richard Flanagan’s latest novel.

Flanagan won the prestigious Booker Prize in 2014 for “The Narrow Road to the Deep North,” an extraordinary novel about Australian POWs during World War II that is unsparing in its considerations of human cruelty. “The Living Sea of Waking Dreams” shares its predecessor’s concerns but little of its power.

A survivor of cancer and the brain-damaging condition hydrocephalus, Francie is back in the hospital when the novel opens. She has “taken a bad turn,” and her condition worsens after she falls and experiences a brain hemorrhage. As Francie’s decline accelerates, her three late-middle-aged children become increasingly determined to keep her alive. They force their mother into last-ditch medical interventions with the complicity of a health-care system Flanagan suggests is more interested in its well-being than that of its patients. Because “The Living Sea of Waking Dreams” is essentially a horror story, their efforts succeed.

Yet this is not Francie’s story. It’s about Anna, the eldest child, only daughter and family narcissist. An architect, Anna is frequently summoned from Sydney to her birthplace in Tasmania by her blue-collar brother Tommy, whom she disdains for being “that most bourgeois of embarrassments: the lower-class relative.”

Her assessments of Francie are even ranker. She looks upon the woman’s “wretched body” as nonhuman, “a carapace of something long ago caught and killed in a spider’s web.” Her reactions to Francie’s scent are equally unkind.

Allowing that her once-strict mother’s “true nature . . . was open, gentle, and loving,” Anna initially wishes for Francie to die so her pain can end. But then, Anna’s ego intervenes. “And precisely because of her shame she saw that henceforth she would have to devote her very being to keeping her mother alive,” Flanagan writes. From there, Anna’s justifications for Francie’s torment pile up like so many medical bills.

Anna has an ally in her youngest brother, Terzo, a businessman who discusses the prolonging of Francie’s life in terms of “victory” and “triumph.” They bully Tommy, whose stuttering they mock and whose poverty they find offensive, into agreeing with them about Francie’s care. “As Terzo put it, with a smile,” Flanagan writes, “they were a board of directors examining a newly acquired corporate takeover.”

Flanagan gets close to something good here, a wicked take on end-of-life care, economic privilege and hubris in the face of death. “The Living Sea of Waking Dreams” can even be viewed as a decent allegory on the climate crisis, which Anna contemplates while scrolling through Instagram, often while on the toilet. In one welcome, Jenny Offill-like moment, Flanagan writes: “How did you adapt to your own murder, wondered Anna as she watched a cat video. Was that what was happening? Were they adapting to their own extinction? Was she?”

If only Flanagan weren’t so obvious about it all. No point in this book is too plain that it can’t be blasted with a spotlight. As Anna watches Australia burn from the narcotizing screen of her phone, her mother vanishes into hallucinations of one-eyed CIA agents and “animals turning into birds and then into plants.” Piece by piece, Anna also begins to fade away. A hand disappears and then a knee, as if they’ve been digitally erased. She feels no pain, and her mobility is unaffected. “But now it had vanished she realised she missed it,” Anna thinks of her invisible knee. “But like the aurochs it was gone. Like the thylacine and the Walkman. Like long sentences. Like smoke-free summers. Gone, never to return.” Like a reader’s patience.

That Anna is unlikable doesn’t really matter, of course. Cold hearts and warped minds make for great literature. What irritates most about Flanagan’s novel is that Anna is more a character than a person. She’s hard to take and harder to believe. Is Anna, in her late 50s, really “shocked” to discover that Francie is more than just a mother but “an adult independent of [her family] and their needs”? Does it really take her so long to realize that postponing Francie’s death is not the same as giving her life? Is she only now understanding that “the more the essential world vanished the more people needed to fixate on the inessential world”? Did she really not know any of this? Did Flanagan?

Complete Article HERE!

We all have to die.

Why have we forgotten how to die well?

In a wise and compassionate book, an American physician offers advice on approaching the end of our days.

by Jose Bufill

The Lost Art of Dying: Reviving Forgotten Wisdom
by Lydia Dugdale, 2020, 272 pages

Hardly a day passes without new descriptions of killing and dying — both fictional and factual — invading our consciences, and yet so many of us still choose to postpone consideration of our own death. The practical neglect of the obvious fact of our mortality seems to be a distinctively post-modern and Western phenomenon that has become an important source of suffering and despair.

This is the central irony that Dr Lydia Dugdale identifies in The Lost Art of Dying and the contradiction she seeks to resolve. The consideration of death is the beginning of wisdom, so why do we live without it?

She writes from the perspective of an academic internist, who — in the course of her work with the sick — has identified manifestations of a kind of malady that affects both patients and their doctors. Its symptoms may be subtle and vary widely, but they rise to the surface acutely when mortality imposes itself: families who insist on repeated attempts to resuscitate dying relatives, doctors who offer patients treatment with no hope of real benefit, neglected elderly sick who die lonely and alone, occasional requests for help in dying. Fortunately, these accounts are not necessarily the norm, but neither are they rare events. There are other experiences with persons who die “well”: well accompanied, at times joyful, and grateful for the time their illness has provided to reflect and make amends.

The examples offered by Dr Dugdale of people facing death resonate well with the observations of Dr Balfour Mount, the Canadian surgeon who became a palliative care physician after his own cancer diagnosis. Dr Mount’s work identified the character traits of patients who experienced either persistent anguish and existential distress from their illness, or those who were able to discover wholeness and integrity in it.

He found that traits such as a sense of connection to others and meaning in life, the capacity to find peace in the present moment, the experience of a non-adversarial connection to the disease, and the ability to choose one’s attitude before adversity rather than to exert control over it were all associated with healing through illness: a good death.

Clearly, achieving this perspective on death is hard work that should not be left to the very end.

Over the course of nine chapters, the journey with Dugdale begins with “Death”, ends in “Life” and pivots on the chapter entitled “Fear”. For Dugdale, it’s the “fear of death” that explains the varied symptoms of despair demonstrated by patients and doctors today. When we are afraid, the reaction to “fight” or “flight” takes over. We “fight” by showing anger, directed at times toward family, professionals attempting to help, or the impersonal “system” surrounding us. Anger may express sadness over lost goals and frustrated plans, or may become a means to “endure”, to hang on, to survive at all costs.

Using the language of war to refer to our engagement with illness reflects the same fearful attitude toward death:

“His grandfather was battling pneumonia. My friend is a cancer survivor. I’m going to beat this infection. She’s a fighter; she’s going to kick this disease. And so forth. We march forward, as determined as military generals, reminding our loved ones and ourselves that there is no reason to fear the enemy. We have the strongest health-care system of all time; no disease can conquer us.”

Among the more frequent expressions of “flight” in response to imminent death, is the attempt to control its time and circumstances. Assisted suicide provides an escape for those who do not wish to fight death but still want control. Perceptively, Dugdale describes the existential threat of a life-threatening illness in the following terms:

“When the natural world threatens, we take refuge in homes and cities. But when sickness threatens, we become homeless. Our own bodies evict us as if we were no longer welcome. Our frames fail, our minds grow dim. Our stamina falters, our work suffers. This, in turn, threatens our carefully constructed fortresses of security. As our physical space closes in, we stop being able to appreciate the beauty of the world. (…) Sickness makes our bodies inhospitable. But it also estranges us from our ideological framework. It is no longer enough to work hard. Ambition seems foolhardy, and prestigious careers offer false salvation. Stripped of our illusions, we find ourselves existentially isolated in our brokenness — perplexed in body and spirit.”

To escape the perplexity, one should learn to abandon our flawed subjective appraisals of what is “important” and attend to the immediate reality of one’s new circumstances. To die well becomes easier if we grapple early and often with existential questions rather than avoid them.

In Dugdale’s account, modern medicine is incapable of offering much help. We have become purveyors of hope through pills and infusions: “providers” rather than “healers”. What is needed instead is common sense: to recover a “lost art” based on the simple premise that people go somewhere forever after they die, and so they should live each day in a way that would help them look forward to a happy transition.

Written manuals offering practical advice to help the dying prevailed for 500 years throughout the West as a popular literary tradition. The “Ars moriendi” — we learn — began during the European “black death”, probably the nastiest and most persistent pandemic among the many that swept through the peoples of antiquity and the Middle Ages. Two-thirds of the European population died horribly from a disease they could not escape and before which they were powerless. The stench of death was everywhere. And so everyone was directly affected and engaged.

In response, a thoughtful and systematic approach to help the dying was proposed for the first time at the Council of Constance (1414 to 1418) by Jean Charlier Gerson, Chancellor of the University of Paris. The intent was to offer practical advice for use at the bedside.

The result was an explosion of self-help manuals advising those who cared for the dying. They identified the most common temptations encountered at the end of life — disbelief, despair, impatience, pride and avarice — and measures to relieve them. They suggested prayers for the dying; acknowledged that the death of an individual affected and so involved the entire community; and emphasized the need to prepare for death long before it happened. And back then — as today — it could happen quickly with little warning.

So what happened about 100 years ago that led to the death of the art of dying?

We could call it a slowly progressive, insidious pandemic of “affluenza”: the malaise that results from relying entirely on the pursuit of material wealth to achieve happiness. Scientific and industrial revolutions and the prosperity that gradually followed meant that human beings were less subject to the whims of nature. Food and clothing became easy to acquire and replace. Adequate shelter, running water and electricity were eventually assumed by almost everyone.

No mystery or threat nature could present seemed beyond the reach of human reason. Once common, often fatal infectious diseases were cured with antibiotics — beginning with the discovery of penicillin in 1928 — the average human lifespan more than doubled, at least in developed countries. And the trend toward longer life spans is expected to continue. Today, we can speak without exaggeration of cures for many cancers. The conquest of death — our mortal enemy — seems within reach.

And thus medicine becomes a means to rescue the doomed. Replacement organs, dialysis machines and ventilators are like life vests for the drowning.

“Doctors love to be rescuers, heroes who descend from on high to fight evil disease and liberate patients in distress. It is part of our common mythology. The bioethicist Howard Brody says that this ‘rescue fantasy is a power trip: it envisions the physician having the power to snatch the patient from the jaws of death.’ (…) For their part, patients seek a rescuer to release them from their life-destroying maladies. (…) The physician’s compulsion to rescue fuels the patient’s burning desire to be rescued, which again stokes the doctors rescue fantasy.”

A host of forces — cultural, economic, technological — have conspired to medicalize the dying process. Fewer people today die at home surrounded by loved ones. Many die in sterile, standardized institutions run by strangers, at times clinging to false hope of survival that medicine is not able to satisfy.

So is death annihilation or is it just a short nap after which we awaken in the arms of Love? That is the question.

Dugdale contends that our best chance to resolve the dilemma is by careful, persistent reflection on the meaning and purpose of life: “the art of dying is really the art of living.”

This insightful book accurately describes the widespread dysfunction that occurs when we are distracted from the consideration of our own mortality. It would be great if Dr Dugdale’s next book might offer a specific, practical road map — a modern Ars moriendi — to help us help the dying.

Complete Article HERE!

How the light gets in

by

When palliative care doctor Rachel Clarke looked back over her notes typed hastily pre-dawn in the midst of a global pandemic, she expected to find only darkness—an unrelenting stream of death and despair. To her surprise, her insomniac’s diary was “illuminated by pinpricks of light”. “People began to organise, street by street, village by village, to make sure that their most vulnerable neighbours…were safe and fed and kept from harm”, writes Clarke. Rainbows appeared in windows up and down the country in support of key workers, volunteers set to work sewing masks and manufacturing visors, and a retired British Army officer approaching his 100th birthday united a divided nation by walking laps of his garden to raise money for the National Health Service (NHS).

Clarke, who embarked on a career as a current affairs journalist before beginning medical training, has since punctuated her medical career with writing—from Your Life in My Hands, charting her experiences as a newly qualified doctor, to Dear Life, exploring death, grief, and the things that truly matter at the end of life. Her latest work, Breathtaking: Inside the NHS in a Time of Pandemic, spans the 4 months from New Year’s Day 2020 to the end of April that same year—a fleeting snapshot of a time during which life in the UK changed immeasurably.

“Pacing the kitchen and tapping a keyboard became a kind of nocturnal therapy”, she explains. These notes, typed “fast and furiously” while her family slept, open a window to life in the UK in its darkest hours. Turning the pages of Breathtaking, we relive the angst and uncertainty of those early months. The anguish about personal protective equipment (PPE) and testing, death tolls rising too high to take in, and the sudden, unexplained obsessions with baking bread and accumulating toilet paper that swept the nation. But, for those of us who know COVID-19 in only an abstract sense, following the news from the safety of our homes, Clarke gifts us a unique glimpse of life in the eye of the storm. As the crisis evolved, day by day, week by week, we learn, in real time, what life was truly like for those on the frontlines—those who risked everything, not knowing that they would see the other side. “To us”, she explains, beyond statistics and modelling, “the pandemic is a matter of flesh and blood. It unfolds one human being at a time”. In these darkest of times, Breathtaking shows us that the greatest sources of light came from within the NHS.

Beyond the inestimable challenges of treating a new disease, acquiring knowledge on the run as patients lurched from one physiological crisis to the next, health-care workers fought—through the physical barriers of masks, gowns, and distance—to restore the humanity to their practice that COVID-19 so cruelly stripped. Overnight, hospitals cleared of visitors, carparks emptied. For Clarke, whose work in palliative care has made her all too aware of the power of human connection, seeing patients isolated from their loved ones feels like a psychological assault. “Covid even steals the patients’ names. So great are the risks of communication in PPE that it is safer for the nursing team to use bed numbers to refer to the human beings for whom they care”, she writes. Humanity is restored by any means possible: medical students volunteer to liaise with patients’ families, many of whom are self-isolating and alone; hearts knitted by volunteers are used to symbolise the connection between patients and their families; health-care workers add laminated photos of their faces to their plastic gowns. “Our tools are uncertain and improvised”, she writes. “We use whatever we can to draw people back together and we refuse to settle for despair.”

Clarke’s style is intimate and generous, opening up to us her own home and family life. We join her pacing in her kitchen—glued to her phone—as she watches events unfold, first in Wuhan, then Lombardy, and finally on her doorstep. We watch her conceal her anxiety from her husband, guilty at even an insignificant deception. We feel her exasperation as PPE at the hospice runs perilously low. We feel her overwhelming desire to help, which drives her to volunteer on the frontlines. Misty-eyed, we’re there as she attempts to quell the fears of her 9-year-old daughter, terrified of losing her mother. “How can I possibly tell her I have volunteered, that I want to be the one helping these patients?”, she asks.

Although not yet over, the opportunity to reflect on these early pandemic months is at once cathartic and deeply humbling. Powerful personal stories allow us to grieve the loss we have suffered as a nation, far beyond the statistics, as well as to appreciate the sacrifices made by NHS workers and volunteers who put helping others above all else. Although Clarke cannot conceal her blistering anger at the failings of those in charge, at its core Breathtaking brims with pride and positivity. “Every single day, the grit and devotion of colleagues astounded me”, she writes. “In the 11 years I have practised as a doctor, I have never been prouder of nor more humbled by the NHS and its people.”

Complete Article HERE!

In grieving for her father, a novelist discovers the failure of words

Review of ‘Notes on Grief’ by Chimamanda Ngozi Adichie

Chimamanda Ngozi Adichie

By Carlos Lozada

Not all deaths in the time of covid are covid deaths. Even as we tally the fatalities resulting from the coronavirus — indicators of personal grief as well as national competence — we continue about the business of succumbing to non-pandemic maladies, deaths no less painful for their familiarity, grief no less wrenching for its disconnect from this plague upon us.

Novelist Chimamanda Ngozi Adichie experienced such a death last year, when her father, James Nwoye Adichie, a distinguished Nigerian academic, passed away because of complications from long-term kidney disease. In “Notes on Grief,” a slim, poignant reflection originating from a New Yorker essay of the same title, the author recounts her efforts to cope with her loss, to accept condolences, to carry out the inevitable rituals of death. “I want there to be a point,” she writes, but even looking for the point is so painful that she cannot fathom “the catastrophe of a direct, unswerving stare.” Grief is always hard to observe.

She writes of her father and his life and the void he leaves, only to find words wanting. With death, she explains, “you learn how much grief is about language, the failure of language and the grasping for language.” All the expressions of sympathy that come from her friends, well-intentioned interruptions of her pain, are inadequate, counterproductive, or they simply annoy. He is resting grates on Adichie in particular. “He could very well be resting in his room in our house in Abba,” the author complains. He is in a better place is not just cliched but presumptuous. “How would you know?” she demands. And when people emphasize that her father lived a long life (he died at 88), she takes little consolation. “Age is irrelevant in grief; at issue is not how old he was but how loved

Her own words have been little better, Adichie chastises herself, recalling her past condolences to grieving friends. Find peace in your memories, she would tell them, only now realizing that memories, rather than relief, produce “eloquent stabs of pain.” And when a friend reminds Adichie of the sentiment she expressed in one of her own novels — “Grief was the celebration of love, those who could feel real grief were lucky to have loved” — the author finds that the words, meant to console, felt “exquisitely painful.” The line is from “Half of a Yellow Sun,” published 15 years ago, back when it seemed she had all the time in the world.

Any one of us who has lost loved ones — even that euphemism feels deficient, for we have not lost anyone; we know too well what happened to them — can relate to Adichie’s anger and her compulsion to reshape it into guilt. She ponders ways she could have anticipated her father’s illness, steps she could have taken to fend off his deterioration, “to make it un-happen.” A brief respite in which she forgets his departure feels like a betrayal, Adichie admits, not only to him but to her relatives in Nigeria who were with him when he died, while she lives across the ocean in the United States. “Do I forget because I am not there?” she wonders. “I think so.” So Adichie seeks other ways to reaffirm their closeness: scouring her belongings for a family tree he once sketched for her, digging up his old letters. “There is an intense pathos to looking at his handwriting,” she realizes. It is as though in seeing his written words, she can again communicate with her father.

The pandemic’s unavoidable form of communication — the Zoom call — is ever present in “Notes on Grief,” as are other covid impositions. The book begins on a weekly family Zoom, with siblings dialing in and cracking jokes from England, the United States and Lagos, and the parents connecting from their home in Abba in southeastern Nigeria. (“Move your phone a bit, Daddy,” they have to tell him when only his forehead appears on the screen.) Her father had been feeling a little sick and sleeping poorly, she recalls, but he urged them not to worry. Three days later, he was gone. Their next Zoom call “is beyond surreal,” Adichie writes, “all of us weeping and weeping and weeping, in different parts of the world, looking in disbelief at the father we adore now lying still on a hospital bed.” And there are yet more Zooms in which they must discuss arrangements for the funeral and religious services. The logistics of death in a pandemic can feel overwhelming. Will Nigeria’s airports be open and stay open? How to ensure a covid-compliant Mass? “I come to dread the Zoom calls,” Adichie writes. “The family shape is changed forever, and nothing makes it more poignant than to slide on my phone screen and no longer see the square with the word ‘Dad.’ ”

That missing Dad emerges as a wise, kind, thoughtful and understanding presence throughout “Notes on Grief” — a devoted teacher, proud father and supportive husband, a man who instilled in the author the confidence to admit she did not know something, who taught her never to fear the disapproval of strangers. “He infused meaning into the simplest of descriptions: a good man, a good father.” I have no reason to imagine he was anything less than this father of which one might dream, yet even she realizes that grief can reshape perceptions. “No, I am not imagining it,” she writes in almost defiant affirmation. “Yes, my father truly was lovely

The loveliest writing in this reflection, however, is not about James Nwoye Adichie, but about the anguish and longing his death produces in those who suffer his absence most acutely. “Is this what shock means, that the air turns to glue?” Adichie asks, capturing her physical response to the news. “How is it that the world keeps going, breathing in and out unchanged, while in my soul there is a permanent scattering?” With death, we expect the world to mourn with us, and when it doesn’t, it can feel like an insult.

In the traditions of Nigeria’s Igbo people, Adichie explains, death involves a settling of accounts. This “clearance” requires that any outstanding dues to the village, the clan or other local associations be paid in full, otherwise the funeral will be boycotted. The custom shows how “forcefully communitarian” the culture remains, she writes. The author does not want to care about such things, but she must, because such things mattered to her father.

And it is in community that solace is possible. Sometimes, upon the death of a loved one, friends we had never met tell us stories we had never known. In death, those we love become more than we understood, more than we can ever remember alone. Adichie appreciates this power. She had always meant to interview her father at length, to record him as he retold and recounted the tales of his childhood, his parents and his grandparents. “I kept planning to, thinking we had time,” she laments. But others can help fill in those spots. “Concrete and sincere memories from those who knew him comfort the most,” Adichie writes. This is another way to settle accounts, one in which the community repays you many times over.

“Part of grief’s tyranny is that it robs you of remembering the things that matter,” the author writes, and I wonder if, in a deadly pandemic, such theft is even more prevalent. Yes, not all deaths in the time of covid are covid deaths, but not all covid deaths should be remembered solely for the crisis that brought them on, one more statistic in a global tragedy that we all just want to get past. They deserve more respect than that. Collective exhaustion should not rob them of individual grief.

Complete Article HERE!

A Daughter Grieves Her Mom, And Finds Herself, In ‘Crying In H Mart’

By Kristen Martin

By the time I came to know Michelle Zauner as a writer, when The New Yorker published her personal essay “Crying in H Mart” in August 2018, I had been following her as a musician for five years.

I first saw her perform in Philadelphia as the frontwoman of emo band Little Big League in 2013; when she emerged with her poppy shoegaze solo project Japanese Breakfast in 2016, I recognized Zauner only in her soaring, searching voice.

Psychopomp, the first record Zauner released as Japanese Breakfast, hinted at where she had been in between: escorting her mother from the world of the living to that of the dead. The first track “In Heaven” tells some of the story of the aftermath of her mother’s death of cancer in 2014: “The dog’s confused / She just paces around all day / sniffing at your empty room / I’m trying to believe / When I sleep it’s really you / Visiting my dreams / like they say that angels do.” Those lyrics break me a little each time I hear them, reminding me of my own grief, of my own sweet childhood dog who looked for my mother and father after they both died of cancer when I was a teenager.

But where Psychopomp and her 2017 record Soft Sounds from Another Planet explore death and grief in sparse lyrics over upbeat synths, in “Crying in H Mart” Zauner digs much deeper. The essay meditates on how shopping at the Korean American supermarket H Mart brought her mother back to her but still made her loss sting. At H Mart, Zauner writes, “you’ll likely find me crying by the banchan refrigerators, remembering the taste of my mom’s soy-sauce eggs.”

“Crying in H Mart,” stood out to me as a representation of grief that I could relate to — one that doesn’t reach for silver linings, but illuminates the unending nature of loss: “Every time I remember that my mother is dead, it feels like I’m colliding into a wall that won’t give…a reminder of the immutable reality that I will never see her again.”

That essay became the first chapter of Zauner’s new memoir, also titled Crying in H Mart, which powerfully maps a complicated mother-daughter relationship cut much too short. Stories of Korean food serve as the backbone of the book, as Zauner plumbs the connections between food and identity. That search takes on new urgency after her mother’s death — in losing her mother, she also lost her strongest tether to Korean culture.

Zauner was born in Seoul, the daughter of Chongmi, a native of the city, and Joel, a white American. When she was a year old, the family relocated to Eugene, Oregon, where her mother ruled with an exacting nature. Chongmi was a woman in pursuit of perfection in everything, and of course this prodding extended to her only child. At a young age, Zauner realized that one way she could get her mother’s approval was demonstrating an adventurous appetite. On trips to Seoul, they bonded over midnight snacks on jet-lagged nights, when they “ate ganjang gejang…sucking salty, rich, custardy raw crab from its shell.”

Zauner’s food descriptions transport us to the table alongside her. On a college break, when her mother prepares galbi ssam, the relief of being cared for with a meal attuned to one’s tastes radiates off the page: “Blissfully I laid my palm flat, blanketed it with a piece of lettuce, and dressed it just the way I liked — a piece of glistening short rib, a spoonful of warm rice, a dredge of ssamjang, and a thin slice of raw garlic…I closed my eyes and savored the first few chews, my taste buds and stomach having been deprived of a home-cooked meal.”

It is this kind of care that Zauner attempts to repay for her mother when she is diagnosed with stage IV squamous-cell carcinoma in her stomach at age 56. After her mother’s diagnosis in May 2014, Zauner, then 25, moves home, ready to bolster Chongmi through chemotherapy with Korean cooking.

But chemo wrecks the appetite — I recall my mother being plagued with everything tasting as though it were laced with metal. During the first round of chemo, her mother can’t keep food down; during the second round, she develops mouth sores that make eating painful. When the chemo fails to shrink her tumor, Chongmi decides to forgo further treatment, having learned a lesson from her younger sister Eunmi, who died of colon cancer following 24 chemo treatments. In this, Crying in H Mart is a rare acknowledgement of the ravages of cancer in a culture obsessed with seeing it as an enemy that can be battled with hope and strength.

Zauner carries the same clear-eyed frankness to writing about her mother’s death five months after her diagnosis. One chapter recounts her mother’s last days, unconscious at home, her breathing “a horrible sucking like the last sputtering of a coffeepot.” It is rare to read about a slow death in such detail, an odd gift in that it forces us to sit with mortality rather than turn away from it.

Also notable is that Chongmi’s death does not fall at the end of the book. It comes just past halfway through, allowing Zauner ample space to grapple with the immensity of her loss. One balm that emerges is reconnecting with her Korean identity through finally learning to cook the dishes she longed to make for her mother.

As a teen, Zauner drifted away from her Koreanness, effacing that side of her heritage for fear of being seen as other. In those same years, she shrunk from her mother’s need for control and constant wheedling. Just as they established their adult relationship — just as Zauner begun to embrace her mother’s culture — her mother died: “What would have been the most fruitful years of understanding were cut violently short, and I was left alone to decipher the secrets of inheritance without its key.”

Cooking becomes the key. Her teacher is Maangchi, described by The New York Times as “YouTube’s Korean Julia Child.” In cooking, Zauner conjures ghosts: her aunt Eunmi munching on Korean fried chicken, her mother ordering more kimchi to go with knife-cut noodle soup in Seoul, her grandmother slurping black-bean noodles.

Near the end of the book, Zauner meditates on the process of fermenting kimchi, and how it allows cabbage to “enjoy a new life altogether.” She realizes that she needs to tend to her memories and heritage in the same way: “The culture that we shared was active, effervescent in my gut and in my genes, and I had to seize it, foster it so it did not die in me…If I could not be with my mother, I would be her.”

What Crying in H Mart reveals, though, is that in losing her mother and cooking to bring her back to life, Zauner became herself.

Complete Article HERE!

‘Death Is But a Dream’

— Partnering to tell stories about the end of life

UB professor Carine Mardorossian has worked with hospice doctor Christopher Kerr on projects that explore end-of-life experiences from the perspective of both patients and caregivers​

By Robert Salisbury

On April 15, the WORLD Channel, carried by public television stations across the U.S., will air “Death Is But A Dream,” a documentary based on a book co-authored by local hospice doctor Christopher Kerr and University at Buffalo Professor Carine Mardorossian.

The book, “Death Is But a Dream: Finding Hope and Meaning at Life’s End,” is the brainchild of Kerr, who over the course of his career noticed a pattern in patients who were near life’s end. He observed that in end-of-life stages, many people began to have dreams and visions of deceased loved ones visiting them at bedside. The dreams and visions often became more frequent as death drew near.

After researching and collecting data for over a decade, Kerr wanted to write a book which archived and told the experiences his patients were having.

The lengthy process of getting the book to where it is now, being published in 10 different languages and sold in 10 different countries, was rough at first. The timeline of how Kerr and Mardorossian came together in writing the book was “quite interesting,” says Kerr, MD, PhD, chief medical officer and CEO for Hospice & Palliative Care Buffalo.

When Kerr and his literary agent began the process, they originally sought out a different author to assist in putting Kerr’s research into meaningful words. The partnership quickly collapsed because Kerr believed that to write about subject, you would have to witness the patients’ experiences in person, which at that time, the prospective writer was unable to do.

Mardorossian, on the other hand, had been friends with Kerr for over a decade as she stabled her horse at Kerr’s barn. In passing, Kerr explained to her that he had given up on the book because finding a writer who saw eye-to-eye with him was hard to accomplish.

Mardorossian, PhD, a professor of English and of Global Gender and Sexuality Studies in the UB College of Arts and Sciences, offered her services. But as an academic writer, her style of writing was not what Kerr was looking for — initially.

“I continually said to Kerr, ‘Let me write it,’” says Mardorossian. “I’m not that type of person, I’m really not. I honestly felt like I was having an out-of-body experience, as I caught myself insisting: I had never written a book for the mainstream, yet I was so determined to write this one.”

Kerr ultimately decided Mardorossian was the right fit, and he again pursued the book. The process of writing soon began and took the duo a year and a half to complete. Kerr says Mardorossian “helped me find a much deeper meaning.”

“I talked to Christopher every single day, and we met up to five times a week, and we would work,” says Mardorossian. “It was a constant back and forth.”

Kerr added, “We took over coffee shops that they should have expelled us from. We could have opened and closed some of them.”

The partnership flourished. The book got picked up by Penguin Random House after what Mardorossian said was “a longer than usual bidding war” between seven companies.

Looking back, Kerr said that there was never an argument or tension throughout the whole process, as their egos were left behind. Kerr admires Mardorossian’s work ethic and determination, and calls the experience of working with her “the most enjoyable process.”

Mardorossian discusses the importance of Kerr’s work in, “As death approaches, our dreams offer comfort, reconciliation,” an article published in The Conversation.

“As hospitals and nursing homes continue to remain closed to visitors because of the coronavirus pandemic, it may help to know that the dying rarely speak of being alone. They speak of being loved and put back together,” Mardorossian writes. “There is no substitute for being able to hold our loved ones in their last moments, but there may be solace in knowing that they were being held.”

Mardorossian and Kerr are now writing another book which will be a “natural extension” from their first one, says Mardorossian. The new project will be from the caregiver’s perspective.

Kerr and Mardorossian want to shed light on these caregivers’ experiences because they believe the grieving process is an important part of someone’s end-of-life experience.

“Family members have to become nurses whether they know anything about nursing or not,” says Mardorossian. “The testimonies Kerr has collected from these caregivers say how it’s the hardest thing they’ve ever done, but also the best thing as well.”

Complete Article HERE!

The struggle for the right to choose when and how to die

Katie Engelhart’s book spells out the moral and practical conundrums

The Inevitable. By Katie Engelhart. St Martin’s Press; 352 pages; $27.99. Atlantic Books

IF IT IS humane to put down a dog in unbearable and incurable pain, why not extend the same right to humans if they want it? That question echoes through “The Inevitable” as it follows four people in search of a good death—and in fear of a bad one.

Katie Engelhart’s deeply researched and beautifully reported book raises familiar quandaries. Do people have a right to die on their own terms? Should doctors help? Do motivations matter? And might a right become a duty for everyone who grows old, dependent or demented? It also considers less publicised problems, such as: how do people actually die? Advances in medicine and technology that have made pills and appliances safer have made it harder to achieve an “easy” or “peaceful” death for those who seek one.

As policymakers and ethicists ponder these moral conundrums, around the world people are taking matters into their own hands, a trend that gives Ms Engelhart’s book its urgency. Faced with intolerable suffering, her subjects have largely given up on laws and doctors and instead turn to strangers on the internet for help. For instance, Avril Henry, a British octogenarian, spent her nights “marinating in her pain” and considered eating lethal fungi from her garden to end it. But “death by mushroom could be slow, messy, painful. The Nembutal would work better.” The “Peaceful Pill Handbook”suggested buying that drug from either a vet-supply store in Mexico or the Chinese black market. Doubtful about Chinese merchandise, Henry settled on Mexico.

Over several years, Ms Engelhart’s main characters meticulously plan their escapes from old age, dementia and chronic or mental illness. She also follows two doctors, one of whom lost his licence for teaching people how to “exit” via “DIY death seminars”. At times the book itself has a DIY air, taking in the practicalities of connecting a gas canister to a plastic bag that can be placed over a head.

The similarity between the “euthanasia underground” that it describes and underground abortion networks is striking. The president of Compassion & Choices, a lobby group for doctor-assisted dying, once referred to plastic-bag hoods as “the end-of-life equivalent of the coat hanger”. Among those to have taken charge of their deaths were some early AIDS patients, their suffering immense, their fates fixed. Just having the right drugs, or knowing they could get them, seemed to make many of these young men feel better, recalls the more likeable of the two doctors.

Henry planned to kill herself with the Mexican drugs in her bathtub, but fretted that she would soil herself and that her house would smell. Dignity—in life and death—seems to preoccupy her and others above all. Even more than a bad death they fear a bad end to life, in which they are no longer themselves. A desire for autonomy runs through their stories like the thin veins of some of the characters.

Yet this is not a right-to-die manifesto. The author’s own ethical doubts are among the book’s strengths. She writes compassionately of her subjects’ struggles, but is more reserved about the motives of some of their helpers. She remains torn about what is perhaps the hardest question of all: euthanasia for victims of dementia. Rather than passing judgment, she presents facts. About half of Americans think patients do not have enough control over end-of-life decisions. Existing laws often have arbitrary effects.

After the drugs arrived from Mexico, Henry’s house was raided by police. She had discovered the concept of the “Completed Life”. “That’s when you feel that your life is shaped and finished. And the direction thereafter is down. I did have a complete life. It was a great life,” she told a friend. Soon after the raid she was found in her bathtub, having drunk the poison the police had missed. The note she left had a postscript: “If I have fouled the bath in death, please please be kind to wash it down.” She provided the disinfectant.

Complete Article HERE!