Showing 1 - 10 of 1290 annotations tagged with the keyword "Death and Dying"

The Great Believers

Makkai, Rebecca

Last Updated: May-26-2019
Annotated by:
Trachtman, Howard

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The subject of Rebecca Makkai's engaging book, The Great Believers is the AIDS epidemic. Her narrative unfolds in two eras separated by 40 years. It opens in the mid-1980s with the funeral of Nico, one of HIV’s first victims when the epidemic exploded in the gay community living in Chicago. In the second chapter, the time frame abruptly switches to 2015 and introduces Fiona Marcus, Nico’s sister. She was part of the gay scene in Chicago in the 1980s, grew attached to the men, and provided the care and comfort that many of the families were unable to offer when their sons were dying of AIDS.

In the earlier time period, Makkai's main protagonist is Yale Tishman, the director of development at an art gallery affiliated with a prominent unnamed university in the Chicago area. He is working with a small group of colleagues, including a young man uncertain of his gender identity, to acquire a batch of paintings from Nora Marcus Lerner. She is an elderly woman who happens to be Fiona and Nico’s aunt. and who was part of the avant-garde social circle surrounding the modern artists living in Paris in the wake of the First World War. As Nora reaches the end of her long life, she desperately wants to preserve the artistic memory of her lover who died as a young man. As Yale works to finalize the acquisition, his relationship with his lover, Charlie, falters and triggers a series of untimely deaths in Yale’s close circle of friends. Ultimately, Yale also succumbs to the HIV virus.

In 2015, Fiona has engaged a private investigator to locate her estranged daughter, Claire, who is living in Paris and has rebuffed numerous efforts in the past to reconnect with her mother. Ultimately, Fiona is able to move past the intensity of her caregiving role to gay men in the 1980s and to reconnect and reestablish a tentative relationship with her daughter. There is hope that with a renewed bond with her daughter she can restore a reason to live that will be as strong as the work she did to support and sustain her gay friends through the agonies of AIDS.

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Annotated by:
Perkins, Sam

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

 In Strange Relation, Rachel Hadas, poet, teacher and classicist, recounts the years just short of a decade of her husband’s descent – retreat is the word she’d prefer – into dementia. Although no definitive diagnosis emerges for George’s “spooky condition,” frontotemporal dementia possibly with Alzheimer’s disease in the frontal lobe seems the most likely. By Hadas’s reckoning, George’s symptoms began when he was in his late fifties—relatively young for dementia. Diagnosing any form of early onset dementia is extremely difficult, especially if memory loss is not among the symptoms, as was the case with George. Hadas noticed the symptoms — his silences and growing remoteness— and ascribed them to her husband’s loss of interest in life and their marriage. She writes, “Slowly and insidiously your partner changes from the person you married into someone else.” 

The book opens in 2004, just before his diagnosis in 2005 at the age of 61. George Edwards was a successful and celebrated composer of symphonies, chamber works and art songs, as well as a professor of music at Columbia University. Through flash-backs, Hadas fills in a portrait of a happy, mutually supportive marriage of two engaged, successful artists, a life that slowly melted away as George’s disease tightened its grip. She ends with George in a long-term care residence in 2009, the year Strange Relation was published and two years before his death in 2011.  

The core of the book, intertwined with the story of George’s dementia, is Hadas’s account of the comfort she sought and gained from reading and writing prose and poetry. “This ordeal has eloquently reminded me of the sustaining power of literature,” she writes. “These gifts of the imagination,” gave her strength. “They are not sufficient, but they are damn well necessary.”

Over seven decades of reading have given Hadas a vast store of literary references to draw on. George is Mr. Dick from David Copperfield, mentally scattered, shuffling his papers; he is King Lear, losing clarity and dignity and consumed with anger and humiliation as he feels his abilities fade. Like Penelope awaiting Ulysses’ return, Hadas sees herself living with George as “neither wife nor widow,” her husband a physical presence but spiritually gone. When she reads James Merrill’s “Days of 1964,” she identifies with the poet who “has gone so long without loving that I hardly knew what I was thinking.” The poem speaks to her as it captures, “The thirst, the loneliness, the habituation to emotional deprivation that marked the way I was living.”

 A recurrent theme that many will relate to is the loneliness she feels caring for someone who, because of his condition, hardly speaks or expresses emotion. Robert Frost’s “Home Burial” reminds her how quickly friends will turn away from death and illness and “make their way back to life.” Sickness, says Flannery O’Connor, is a country “where there’s no company, where no one can follow.” She sees her life reflected in Philip Larkin’s wry poem about a couple’s estrangement, “Talking in Bed,” – the couple’s growing estrangement is “this unique distance from isolation.” Hadas finds the clarity and the company of these works a huge comfort.

There are moments of uplift, too. When her college-age son, Jonathan, and his friends propose to take George on a two-week getaway of very rustic living in Vermont, she reluctantly agrees, certain that disaster or injury will ensue. The reader is as relieved as Hadas is when all goes off without a hitch. 

A recurrent theme of the book is the importance of the language used to describe a disease and its treatment. Metaphors and similes, of course, are staples of medical caregiving – “they help us see freshly,” says Hadas; they help her step outside the moment and understand George, whom she describes as retreating into a “walled garden” or behind a “frosted window”; his disease is a bath in which he’s immersed and can never escape; it is a malignant fluid his brain is stewing in.

Equally, using the wrong metaphors and similes can cause pain and guilt. A neurologist tells Hadas that she’s feeling depressed because Hadas has moved into a “new house” and is still living out of boxes, still in transition. “Make yourself at home,” the doctor advises, “I don’t think you’ve completely moved in yet.” This only makes Hadas feel inadequate and guilty. “Let’s at least find the right kind of house,” she writes. Caring for a person with dementia, as she sees it, is not a house but a prison in which the family caregiver is the voluntary inmate, “responsible for the daily care of a warden who has mysteriously changed into a ward.” 

By the end of the memoir, George has declined to the point that Hadas can no longer care for him and has found him a residence, which raises a new host of concerns. He fails out of the first home and she finds another. She visits George regularly and experiences a new kind of tethered freedom. Her divided self, composed of the Drudge and the Poet, dusts off their apartment to reclaim it from the associations of George’s illness, hoping to rescue her memories of twenty years of happiness before his illness began to take him. “It became my home in a new and different way.”  

Each phase of her journey is accompanied by poems, twenty-nine in all, that Hadas wrote to understand herself, clarify her feelings, cope with the loss of George. Never was Robert Frost’s dictum regarding the ingredient of a successful poem— “No surprise for the writer, no surprise for the reader” —more pertinent. Along with her reading, Hadas’s poems lead her to insights that comforted and sometimes surprised her—and will do the same for the reader.   

The book ends with George’s birthday party in 2009 at the long-term care residence where he finally settled. He died shortly after the book was published in 2011.   




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Annotated by:
Galbo, Sebastian

Primary Category: Literature / Nonfiction

Genre: Short Story

Summary:

Jolted awake by a ringing telephone, the narrator (assumed to be Mukherjee) listens to his mother give a tearful report of his 83-year-old father’s waning health. Telling her that he will book the next flight from New York to New Delhi, Mukherjee’s mother wavers, regretting that her call now spurs him to purchase expensive airfare. In a tone of knowing sarcasm, Mukherjee writes, “The frugality of her generation had congealed into frank superstition: if I caught a flight now, I might dare the disaster into being.” Arriving in “sweltering, smog-choked Delhi,” Mukherjee joins his mother in a hospital’s I.C.U. A physician himself, Mukherjee notes the facility’s piteously tumbledown conditions, its crumbling floors and exposed utilities, jibing that, if one were to trip on the concrete rubble, “a neurologist would be waiting conveniently for you around the corner.” No doubt accustomed to the comfortable amenities of American hospitals, Mukherjee magnifies the miserable disarray of the Delhi facility—a defective heartrate monitor, a fractured suction catheter, a hospital bed with cracked wheels, a delivery van used as an improvised ambulance. This world, far from New York, is mired in seemingly eternal disrepair: “Delhi had landed upside down. The city was broken. This hospital was broken. My father was broken.”

These would seem to be the smug observations of a dismayed tourist were it not for Mukherjee’s thoughts on the intricate and noiseless machinery of homeostasis, the cohesive force that sustains internal constancy. “There’s a glassy transparency to things around us that work,” he writes, “made visible only when the glass is cracked and fissured. […] To dwell inside a well-functioning machine is to be largely unaware of its functioning.” As Mukherjee witnesses the spiraling decline of his father’s health within a deteriorating, dismally ill-equipped healthcare system, he focuses on the regularities of equilibrium by juxtaposing the homeostasis of healthcare institutions and human bodies. Mukherjee relates a memorable story from his early career when he staffed nightshifts at an urban clinic, where his colleague, an older nurse, stacked oxygen masks, oiled oxygen valves, and arranged beds. He belittled the nurse’s exacting preparations as an “obsessive absurdity” but, when his first patient arrived with an asthma spasm, he realized how critical the clinic’s flawless order was to his life-saving efforts: “The knob of the oxygen turned effortlessly—who would have noticed that it had just been oiled?—and, when I reached for an I.V. line, a butterfly needle, just the right size and calibre, appeared exactly when I needed it so that I could keep my eyes trained on the thin purplish vein in the crook of the elbow.” Had these things not been prepared, had they not been finely tuned for use, had an instrument been misplaced, would Mukherjee’s patient have lived? He experienced an example of institutional homeostasis, conducive to optimum medical care, which facilitated essential processes to occur successfully without mishap.  

Now in the New Delhi hospital, Mukherjee notes that its medical staff has “to settle for a miserable equilibrium. Amid scraps and gaps and shortages, they had managed to stabilize [my father].” He arrives at another stark realization, “I had versed myself in the reasons that my father had ended up in the hospital. It took me longer to ask the opposite question: What had kept my father, for so long, from acute decline?” Recollecting his father’s life at home in between hospitalizations, Mukherjee references a different kind of homeostasis that helped to prolong his life. For example, when his father was unable to go to the local market to haggle for fish and cauliflower, the vendors came to his home for usual business— “The little rituals saved him. They […] restored his dignity, his need for constancy.” Mukherjee accentuates the protean workings of homeostasis, its variegated forms that sustain the patterns of normalcy that give regularity and meaning to human life—indeed, equilibrium is not only an infinitude of minute chemical and biological factors, but familiar ease in a world that one knows and loves. Equilibrium, however rigorously maintained, succumbs to decay. Mukherjee aptly quotes Philip Larkin’s poem, “The Old Fools”: “At death you break up: the bits that were you / Start speeding away from each other for ever / With no one to see.” Mukherjee notes that the experience of his father’s decline was not so much observing him disintegrate into a similar kind of molecular dust, as imaged in Larkin’s verse, as it was his solidity upheld by homeostatic forces, a steady chugging of biological gears that made intricate compromises to sustain his deteriorating body.

After his father emerges from the coma, Mukherjee enlists curious pedestrians to help lift him into a makeshift ambulance. His father’s jostled body resembles a “botched Indian knockoff of an ecstatic Bernini.” The thematic kernel of Mukherjee’s narrative, homeostasis, draws scrutiny not only to the experiences of individual bodies but the systems and institutions that heal them, to the material environments in which fragile bodies are cared for, repaired, and rehabilitated. “The hospitals that work, the ambulances that lift patients smoothly off the ground: we neglect the small revolutions that maintain these functions,” reflects Mukherjee, “but when things fall apart we are suddenly alert to the chasms left behind.”
 

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

In That Jealous Demon, My Wretched Health (subtitled “Disease, Death and Composers”), Jonathan Noble, a retired surgeon gives us the medical and psychiatric history of seventy classical music composers. Chapters are organized by illness, ranging from cancer to syphilis to alcoholism.  Famous composers such as Schubert and Shostakovich predominate, but many lesser-known composers, ranging from Jeremiah Clarke to Gerald Finzi, are also included.  

Mozart is one composer whose cause of death has long been the subject of controversy, and the various theories are comprehensively explored here. However, the author goes even further, developing a detailed medical case study of the composer beginning in childhood.  He examines the toll that Leopold Mozart’s exploitation took on his prodigy son’s constitution, what Wolfgang’s appearance in the surviving portraits has to say about his general health, and even whether he may have had Tourette’s Syndrome. Finally, the author ties all of this together, methodically refuting or confirming each diagnosis, offering far deeper analysis than one would expect to find in a standard biography.  

Another example, the case of Tchaikovsky, reads like a veritable whodunit. The composer’s activities during the last two months of his life are scrutinized, with the likely causes of death systematically disproven or confirmed.  

A list of composers who suffered accidental or violent deaths provides some surprises. You will learn that Lully accidentally stabbed himself with his conductor’s baton, and that Alkan may have been crushed to death by a bookcase upon pulling his Talmud off a shelf.

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In 2006, Emergency medicine trainee, Damon, and his wife, Trisha, have two boys, Thai (age 4) and Callum (age 2.5).  All is well in their lives until Callum begins vomiting for no apparent reason.  He is found to have medulloblastoma, an aggressive brain tumour, for which the only possible hope for a cure comes from surgery and six cycles of ever more arduous chemotherapy with stem cell recovery at Toronto’s Hospital for Sick Children. The little family moves to Toronto and commits to supporting Callum as best they can, ensuring that he is never alone even during his long weeks of reverse isolation. They also try to keep Thai nearby, involved and aware, with the help of a local school and grandparents. But Callum dies during the last cycle of treatment.  

Saddened, exhausted, and bereaved, Damon and Trisha go back to their home town and try to (re)construct their lives, slowly returning to studies and work. They find meaning in creating tangible and intangible memorials to their lost son, and they find purpose in the more difficult task of moving forward, never losing the pain of grief. They adopt a little girl. Damon knows that Callum is always with him and the experience of his illness and death has dramatically infused his work as a physician.

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Taking Care of Time

Davis, Cortney

Last Updated: Jan-02-2019
Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

In this volume by the esteemed nurse-poet/writer, Cortney Davis, are 43 previously published poems (some revised for this collection), assembled in 3 sections-- the middle section featuring her long poem, "Becoming the Patient," that recounts through 10 shorter poems her time "in the hospital."

The poems in the surrounding sections describe in beautiful and intimate detail her patients' lives and the call to and practice of nursing. Featured throughout are battles won and lost-- with disease, with the medical staff, and as the title-- taking care of time-- suggests, the finitude we all face. No matter the difficulties of hospital life-- whether as practitioner or patient-- its familiarity  provides grounding and comfort in these poems as, for example, heard through the speaker of "First Night at the Cheap Hotel" who tells us:

"Being here is like being sick in a hospital ward
without the lovely, muffling glove of illness.
In hospital, I would be drowsy, drugged into a calm
that accepts the metal door's clang,
the heavy footfall right outside my door.
All these, proof of life,
and there would be a nurse too, holding my wrist,
counting and nodding, only a silhouette in the dark" (p.67)

And if sometimes the experiences and images become too hard to bear, the skillful nurse-poet can, as Cortney Davis does in "On-Call: Splenectomy," "tame them on page” (p.52).

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Sky the Oar

Nigliazzo, Stacy

Last Updated: Oct-16-2018
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

"Sky the Oar," Stacy Nigliazzo's second full-length poetry collection, contains 52 poems in four sections. These poems are gems--and gem-like, each poem has been created by a compression of words into unique forms.  Nigliazzo's poems wander along the page, floating in white space as margins move in and out. In the three "Triptych" poems, pages 36, 46, and 61, Nigliazzo uses an article written in 2015, the report of a woman's murder, as a pale background. By choosing words to highlight, the poet creates spare poems that emerge as commentary on this crime--"Triptych III" offers only 6 highlighted words (pages 61-62). Nigliazzo has abandoned the more common narrative form--long or short lines that tell a story--and instead gives the reader hints, sign posts along the way. These poems are not meant to be read quickly. It is only by pondering them, allowing the imagination and intellect to fill in, so to speak, the white space around the words, that the impact and complexity of these stunning, impressionistic poems becomes evident. 

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Summary:

Naomi Oreskes and Erik Conway examine the successful efforts of a few scientists to jam the spokes in the wheel of science, delaying needed mitigations (e.g., regulations) to protect individuals, vulnerable populations, nations, and the earth.

The authors chose the well-known and controversial debates around second hand tobacco smoke, acid rain, the strategic defense initiative, the ozone hole, global warming, and the pesticide DDT as the substrate for their investigation. Each issue involves a large accumulation of evidence of the dangers it presents to humans. And each provoked skepticism and opposition from related industries, contrarian scientists, and anti-regulation politicians and institutes. Industry opposes regulations that could threaten their businesses. Free market ideologists do not want regulations that could threaten capitalism and accelerate a slide into socialism. 

Faced with mounting scientific evidence and general agreement amongst credible researchers, those whose interests were threatened needed a strategy to win that didn’t rely on scientific evidence. The tobacco industry led the way by hiring “a public relations firm to challenge the scientific evidence that smoking could kill you,” (p. 15) and to ensure that “scientific doubts must remain.” (p. 16) The authors drew from publicly available documents to best convey this idea:

‘Doubt is our product,’ ran the infamous memo written by one tobacco industry executive in 1969, ‘since it is the best means of competing with the ‘body of fact’ that exists in the minds of the general public.’ (p. 34)

The industry realized, however, that renowned scientists would be needed “to merchandize doubt,” (p. 33) and so they recruited some. First among them was Frederick Seitz. He was a physicist who had been involved in the atomic bomb program during World War II and later in Cold War weapons programs. He knew next to nothing about the science showing the harm of tobacco smoke. However, his time as president of the National Academy of Sciences and as president of Rockefeller University accorded him credibility on all matters of science, at least to constituencies outside of science. His attacks on the science showing the harms of tobacco smoke had a lot to do with the decades it took before governments and the public took meaningful actions.

This became the approach opponents took against of science-based initiatives they wanted to scuttle. Seitz was recruited for other campaigns, but so were other physicists with similar backgrounds to form what Oreskes and Conway call a “small network of doubt mongers.” (p. 213) They make a point that this network only threw darts—poisonous darts—at the science they targeted and never once contributed their own original research to support their opposition to any scientific findings or consensus.

Oreskes and Conway tie the motives of these scientists primarily to their fierce devotion to liberty, which then meant fighting Communism and any other forms of socialism. They suggest that some degree of curmudgeonry and contrarianism is involved as well, but they focus more on political ideologies as the primary drivers for these people:

they were working to ‘secure the blessings of liberty’…if science was being used against those blessings—in ways that challenged the freedom of free enterprise—then they would fight it as they would fight any enemy. For indeed, science was starting to show that certain kinds of liberties are not sustainable—like the liberty to pollute.” (p. 238-239)

The authors hold the news media responsible for much of what the doubt mongers accomplished, specifically faulting them for applying the “fairness doctrine”—each side of an argument will get equal time—to the point of absurdity.

it especially does not make sense to dismiss the consensus of experts if the dissenter is superannuated, disgruntled, a habitual contrarian, or in the pay of a group with an obvious ideological agenda or vested political or economic interest. Or in some cases, all of the above. (p. 272-273)

The news media, they assert, are the gatekeepers and should be able to distinguish charlatans and snake oil salesmen from legitimate scientists. In this role, they failed as far at the authors are concerned. There can be no network of doubt mongers without a news media that either can’t or won’t call them out.

In contrast, the authors give the scientists who didn’t call out the doubt mongers a more forgiving critique. For the most part, they say, scientists facing a fight will retreat to their labs and concentrate on their work—they’re discovers, not fighters. On them, “intimidation works.” (p. 265)

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Written on the Body

Winterson, Jeanette

Last Updated: Sep-24-2018
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In this uncommonly sensual novel, the narrator has neither name nor gender; the object of the narrator’s frenetic love is a woman, Louise, who is married to a prominent medical researcher. The marriage is loveless, without empathy, affection, and sex. Undaunted by Louise’s relationship, the narrator quips knowingly, “Marriage is the flimsiest weapon against desire. You may as well take a pop-up gun to a python” (78). Louise’s marriage eventually crumbles, and the lovers flee. Their happiness, though, is disastrously brief. Louise’s husband, Elgin, discloses to the narrator that, before their affair, Louise was diagnosed with chronic lymphocytic leukemia. As a globally distinguished cancer expert, Elgin exacts his revenge on the lovers by promising treatment available only at a clinic abroad, which would force the couple to split. Fearing that Louise will forgo treatment to stay (and eventually die) the narrator writes a letter pleading her to go abroad, then vanishes into the countryside—a decision that haunts the narrator for the rest of the novel.

In rural isolation, the narrator pores obsessively over anatomy books: “Within the clinical language, through the dispassionate view of the sucking, sweating, greedy, defecating self, I found a love-poem to Louise. I would go on knowing her, more intimately than the skin, hair and voice that I craved. I would have her plasma, her spleen, her synovial fluid” (111). In a kind of medicalized elegy, Winterson breaks the novel out into a standalone section divided into individual segments that juxtapose excerpts from anatomical textbooks with deeply felt recollections of the beloved’s leukaemic body. In one section, “The Cells, Tissues, Systems and Cavities of the Body,” the narrator entreats, “Will you let me crawl inside you, stand guard over you, trap them [white T-cells] as they come at you?” (115). Winterson’s narrator, far removed from the realities of Louise’s treatment, apostrophizes her physical features, performing a kind of poetic embalmment of her lover’s body as she once knew it.

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Barbara Ehrenreich wants to manage her health and all that is available to address various aspects of it. She makes clear that she will do the managing and has written this book to reflect on how she plans to do it.  Ehrenreich explains why managing her health is necessary. She puts it this way:

We would all like to live longer and healthier lives; the question is how much of our lives should be devoted to this project, when we all, or at least most of us, have other, often more consequential things to do (p. xv)  

Ehrenreich doesn’t reject the project of getting longer and healthier lives per se, but she believes that what this project requires isn’t always worth the results it produces. The time and energy needed could be put towards better ends.  

Like many other critics, Ehrenreich details how Biomedicine often comes up short on outcomes for all the time, effort, and money it requires from the people it serves. She covers the familiar territories of over diagnosis and over utilization of health care products and services, and goes further to suggest that many common medical practices are more ritualistic and humiliating than evidence-based and effective.

Unlike other critics, Ehrenreich takes on other activities directed at health outside of Biomedicine. She questions whether the physical fitness industry delivers on its promises to produce healthier lives and especially whether there is a net benefit based on the time and energy required from people who take it on. She crosses to the other side of the mind-body continuum when she next aims at the “madness of mindfulness” (p. 71).  She finds the mindfulness movement offers more hubris than solutions.  

Ehrenreich worries that the combined effects of the authority of Biomedicine, the physical fitness frenzy, and the madness of mindfulness have created a social context that treats death as something that can be avoided or at least delayed. This social context thereby implies that not actively engaging in efforts to fight off death “can now be understood as a suicide” (p. 97).

Ehrenreich offers some reasons for why these efforts to improve health and prolong life do not always produce benefits that in her view are worth pursuing to the exclusion of other activities resulting in a better life (or death). Drawing on examples from cell biology and immunology, she suggests that what is at work are disease processes too complex for the human mind to apprehend completely combined with the human impulse to  simplify, which lead to practices, procedures, and prescriptions that in the best case are ineffective and in the worst case harmful.   

At the end of the book, Ehrenreich laments the efforts health care professionals, nonprofit organizations, government agencies, and commercial entities make to push older people into commitments for “successful aging.” Those making these efforts argue “aging itself is abnormal and unacceptable” (p. 164).  This commitment requires older people to spend a lot of time in clinics, gyms, and wellness classes—“The price of survival is endless toil,” is how Ehrenreich formulates it (p. 163).  She doesn’t think this price is worth what is required of people who are supposed to benefit, and advises her friends to insist “on a nonmedical death, without the torment of heroic interventions to prolong life by a few hours or days” (p. 208).

I continue to elude unnecessary medical attention and still doggedly push myself in the gym, where, if I am no longer a star, I am at least a fixture. In addition, I retain a daily regimen of stretching, some of which might qualify as yoga. Other than that, I pretty much eat what I want and indulge my vices, from butter to wine. Life is too short to forgo these pleasures, and would be far too long without them (p. 207).

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