Smoke Gets in Your Eyes & Other Lessons from the Crematory

Doughty, Caitlin

Last Updated: Aug-31-2020

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

At 23 years of age, Caitlin Doughty went to work for a crematory in Oakland, California, and looked human mortality right in the eye. She reports on her first six years in the funeral industry, learning about it and also resolving to stay in it so that she can improve it. Her eye-witness account provides the basic narrative structure of this book.

She makes house calls to gather up the dead and drive them to the crematory. She is fascinated by several specific bodies, giving us portraits of them and their past lives. Some of them are our least-well-off citizens, and these occasion touching prose.

Doughty realizes that her fear of death has roots of seeing, at eight years of age, a child dying from a fall in a two-story shopping mall. Her work with bodies helps her heal from her trauma. She imagines that her history may be a parallel for American society as a whole that now hides, covers up, and ignores the realities death and dying. She specifically envisions changes that will result in healthier attitudes and practices in the funeral industry.

Doughty describes in detail how the dead are embalmed, made up to look “natural,” and presented to relatives at viewings. She criticizes these rituals as demeaning to the dead and causing unnecessary expense to their families. She describes Forest Lawn cemetery as the Disneyland of the Dead, recalling Jessica Mitford’s critical book, The American Way of Death (1963).

Having studied medieval history at the University of Chicago as an undergrad, Doughty brings many texts into her discussion, from history, anthropology, literature, philosophy, medico-legal discussions, religion, and social criticism. All societies have customs for dying, death, and burial; many of them, she feels, are healthier and more realistic than those of contemporary America.

Finishing her time at the crematory, she decides to stay in the industry in order to improve it. She graduates from the Cypress College of Mortuary Science and passes exams to become a licensed funeral director in the state of California. She posts her essays and manifestos on the Internet under the name “The Order of the Good Death.” Many others join her in a movement against American “death dystopia” (p. 234).

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Hidden Valley Road

Kolker, Robert

Last Updated: Jun-15-2020

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

The Galvins of Hidden Valley Road, just outside Colorado Springs, appear to be the kind of wholesome, all-American family that others might envy. The tragic fact is that six of the twelve children go on to develop schizophrenia, a situation that is practically unprecedented. In Hidden Valley Road, journalist Robert Kolker gives us the tale of the deterioration of six afflicted children and the traumatization of six healthy ones in an improbable, bucolic setting. As one after the other reaches young adulthood in this “funhouse-mirror reflection of the American dream” (p. xxi) and inexorably succumbs to madness, the family struggles to cope.

In their search for answers, the Galvins’s extraordinary circumstances come to the attention of researchers. Ultimately, although there is no cure, the family makes a contribution through their genes to our understanding of schizophrenia, as a mutation is discovered that is shared by the afflicted children.

Hidden Valley Road follows the travails of this “multiplex schizophrenia” family over so many years that there is a sea change in our understanding of the disease’s origins. At first, it is taken for granted to be the result of a faulty upbringing at the hands of “schizophrenogenic” parents. Later, biological explanations prevail. Finally, a more balanced view is attained, with nature and nurture each thought to play a role.

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The Ballad of Typhoid Mary

Federspiel, J. F.

Last Updated: Apr-07-2020

Belling, Catherine

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The novel's narrator is a widowed 58-year-old Swiss-born physician, Howard J. Rageet, who lives in New York City. His son is a pediatrician, his daughter a medical student. Rageet himself is terminally ill. He is writing a "little biography," of Mary Mallon, the infamous "healthy carrier" also known as Typhoid Mary. Rageet's grandfather, also a doctor, had kept a journal about Mary and his rivalry with his friend, (the real) George A. Soper, whose life's work became tracking Mary and proving that she was responsible for the typhoid outbreaks. Elaborating on the journal, Rageet recounts Mary's life in America.

Born Maria Anna Caduff in the same part of Switzerland as Rageet's ancestors, she arrives in New York Harbor in 1868, aged 13, on a crowded immigrant ship, a fifth of whose passengers had died en route from Europe. The dead include Mary's family. She had been taken care of by the ship's cook, who evidently both taught her to cook and used her for sex. When the ship docks, Mary tries to jump overboard, but is stopped by a physician, Dorfheimer, who smuggles her through Ellis Island and takes her home with him. He is also a pedophile, and he has sex with her. Rageet calls this kidnapping a "humane, benevolent crime." Not long after, Dorfheimer dies of typhoid fever.

Rageet's "ballad" then traces Mary's various positions as a cook (and, often, sexual object), most of which end quickly when the household is infected. She has two relationships that do not lead to the disease. One is with a small girl who has Down Syndrome. Once her connection to typhoid is suspected, the child's family hire Mary to live alone with the child and care for her, hoping the child will be infected and die. The child never becomes ill. The other is with a disillusioned anarchist, Chris Cramer. She lives with him and falls in love with him, but he is not sexually interested in her.

Soper encounters Mary when he is asked by a wealthy Oyster Bay family, her former employers, to investigate a typhoid outbreak in their household. He manages to track her down and eventually, after much resistance, she is arrested, tested, and quarantined. She escapes and continues to work as a cook until her re-arrest. Promising to try and imagine Mary's motives, Rageet breaks off his narrative. He is dying. The novel ends with a postscript written by Rageet's daughter. Implying that her father committed suicide, she tells of Mary's stroke and the last years of her life as a paraplegic, and she provides a final document, the menu for one of the very elaborate meals Mary would have cooked.

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BPM (Beats per Minute)

Campillo, Robin

Last Updated: Feb-20-2020

Zander, Devon

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

BPM is a fictional, French film about ACT UP Paris in the 1990s. Directed by Robin Campillo, himself a veteran of Paris’s ACT UP, the film details the realities of being an HIV/AIDS political action group during an era of governmental inaction and lack of recognition of those most impacted by HIV and AIDS. Initially, BPM focuses on the collection of individuals who make up ACT UP Paris and how they organize themselves to protest and advocate for greater media attention, better sexual education, and more access to new pharmaceutical data, among a myriad of other causes. The film eventually shifts its focus from ACT UP as a group to two of its members, a couple, one of whom, Sean, is struggling with AIDS and Nathan, his partner, who supports him together with the the rest of ACT UP.

In addition to its presentation of HIV activism, BPM documents what it meant to be HIV positive in a world without highly active antiretroviral therapy and where those most affected were largely ignored or even viewed with disdain. Historical references ground the film firmly in the 1990s, including allusions to France’s infected blood scandal when hemophiliacs were knowingly given infected blood products, discussions that led to the initial development of protease inhibitors, and ACT UP Paris’s 1993 protest on World AIDS Day when a large pink condom covered the obelisk in the Place de la Concorde. Contrasting with these larger historical references are daily moments of living with HIV in this era. Members of ACT UP are shown taking AZT and DDI around the clock (including ensuring to pack water during a protest, in case of arrest, when they may need to take medication in jail), regularly attending the funerals of friends who died of AIDS, and enduring moments of homophobia from those outside of ACT UP.

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The Soul of Care: The Moral Education of A Husband and a Doctor

Kleinman, Arthur

Last Updated: Feb-10-2020

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.

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The Edge of Every Day

Sardy, Marin

Last Updated: Jan-25-2020

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Edge of Every Day is the memoir of a woman who comes from a “multiplex” family, in which schizophrenia is manifested in successive generations.

The book consists of a series of essays. Some, on topics ranging from gymnastics to building altars, were first published independently and do not appear (at least at first glance) to be linked. The choppy effect this produces speaks to the disorganized thinking that psychotic persons experience. Other essays propel the tragic narrative of family members slipping into psychosis. At the age of ten, the author Marin Sardy, watches as the “shapeless thief” of schizophrenia steals her mother’s personality away. Later, as she reaches her thirties, she witnesses her younger brother succumb to an even more pernicious illness.

Despite Sardy’s mother’s conspicuous symptoms, (she advises her daughter to move to Pluto and informs her that her father has been swept away in a tsunami and replaced by another man), she functions just well enough to avoid being compelled to accept treatment. Thus, no one can stop her from going through a large inheritance and becoming destitute.

Sardy’s brother Tom suffers his first psychotic break in his 20’s and then rapidly deteriorates. He repeatedly “cheeks” his meds and falls through the cracks of Anchorage’s mental health system. The author and her family scour the streets, hoping to lure him inside for a shower or hot meal. As the weather worsens, they can only hope he will land in prison if it means not being exposed to the Alaskan elements. Ultimately, the young man, who once sailed through college with A’s, commits suicide in the bathroom of a psychiatric facility.

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Love Thy Neighbor: A Muslim Doctor's Struggle for Home in Rural America

Eisenstock, Alan; Virji, Ayaz

Last Updated: Oct-28-2019

McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Responding to a shortage of doctors in rural areas in 2013, Dr. Virji, a Muslim, moved from the urban East coast to a small town in Minnesota. Welcomed at first, he and his family began, after Trump's election in 2016, to experience withdrawal, suspicion, and outright racism in his own and neighboring towns, despite having established solid, trusting relationships with patients. His children were being ostracized in school. Discouraged, he took steps to accept a job in Dubai, but changed his mind after a local pastor invited him to speak in her church to correct common misconceptions about Muslims and to engage his neighbors in deeper dialogue about their differences and commonalities. The lecture was so successful, he took it further into other towns and parts of the country. He has stayed in Minnesota and witnessed change because of this invitation and his candid, open-hearted response.

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Dying of Whiteness: How the Politics of Racial Resentment is Killing America's Heartland

Metzl, Jonathan

Last Updated: Oct-08-2019

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This illuminating and disturbing book explores how various forms of white supremacy became expressed in policies, laws, and elected officials, such as Donald Trump. Physician and sociologist Metzl details social changes in Missouri, Tennessee, and Kansas, where white Americans backed changes that, ironically, dramatically harmed them with gun suicides, school dropouts, worse healthcare, and shorter life spans. For Metzl, “Whiteness” refers not to skin color but to a political and economic system of white privilege.

Metzl's thesis that: “Trump supporters were willing to put their lives on the line in support of their political beliefs” was, in fact, a sort of “self-sabotage” (pp. 5-6). While a conservative political movement fostered white racial resentment, largely in lower-income communities, the mainstream GOP did its part by crafting policies against the Affordable Care Act, higher taxes, and restrictions on guns. An atmosphere of polarization and political stasis grew. Metzl writes: “Compromise, in many ways, coded as treason” (p. 11).

Metzl focuses on the examples of Missouri, Tennessee, and Kansas to “suggest how the racial system of American fails everyone” (pp. 16, 20). He visits each state, leading focus groups, interviewing formally and informally, reading newspapers, and inductively formulating concepts that seem to explain the nonsensical behavior of rejecting helpful programs. For example, because “risk” in Missouri has become a code name for possible attacks by black people, white people buy guns, especially when restrictions are removed. Many white men feel that a gun (or many guns) restores their privilege, but suicide of white males, often low-income, goes up. Metzl’s statistics and charts show contrasts with other states with stricter laws and lower suicide rates. He calls for preventive medicine to lower such deaths.

For Tennessee, the Affordable Care Act offered many benefits to poor or middle-income people, but Republicans (and especially Trump) attacked it as big government over-reach, socialism, exorbitant cost, a program that would help minority people, for example “welfare queens.” “Cost” became a proxy for the “we don’t like it,” even when the economics would be favorable for good healthcare for all. Blacks were generally in favor of ACA, but white blue-collar men swore by their independence and autonomy. Neighboring Kentucky accepted ACA, and ten graphs included in the book clearly chart the better outcomes for Kentucky in such areas as insurance coverage, death rates, and seeing a doctor.

Metzl returns to Kansas, where he grew up and recalls the pride Kansans had in their state. Republican Governor Sam Brownback enacted massive tax cuts with large reductions to state services and school funding, an “experiment” in “epic defunding.” The GOP, Tea Party, Koch brothers, and “trickle down” theories all played a part in benefiting the wealthy financially, while minority and lower-income groups paid more. Infrastructure, such as roads, suffered. Untested charter schools collected wealthy white students, while public schools plunged in funding, test scores, and graduation rates (see 17 graphs). Since education is a predictor of health, there are and will be long-term costs to Kansans, especially for minority groups.

Metzl attacks the “Castle Doctrine” (“a man’s home is…”) as a symbol of narcissism, individualism, and as a risk for all citizens when social structures are abandoned. He closes with some hopeful examples of social change for the better.

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Elderhood: Redefining Aging, Transforming Medicine, Reimagining Life.

Aronson, Louise

Last Updated: Oct-07-2019

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction — Secondary Category: Literature /

Genre: Treatise

Summary:

Louise Aronson, a geriatrician, argues that we should create Elderhood as the third era of human aging, joining the earlier Childhood and Adulthood. This new concept will allow us to re-evaluate the richness of this later time, its challenges as body systems decline, and, of course, the choices of managing death. This important and valuable book is a polemic against modern medicine’s limits, its reductive focus, and structural violence against both patients and physicians. She argues for a wider vision of care that emphasizes well-being and health maintenance for not only elders but for every stage of life.

Aronson argues that contemporary society favors youth and values of action, speed, and ambition, while it ignores—even dislikes—aging, older people, and the elderly. She says ageism is more powerful than sexism or racism—as bad as those are. Medical schools ignore the elderly, focusing on younger patients, especially men, and medical students perceive geriatrics as boring, sad, and poorly paid. Primary care, in general, seems routine and dull. By contrast, medical treatments, especially high-tech, are exciting and lucrative. In medical schools a “hidden curriculum” focuses on pathophysiology, organ systems, and drugs, ignoring patients’ variability as well as their suffering and pathos. Further, business and industrial models make “healthcare” a commodity, and nowadays “doctors treat computers, not people” (p. 237). Aging has become “medicalized” as a disease. Medicine fights death as an enemy, often with futile treatment that may extend a dying process.

Instead, Aronson says we need to bring back the human element, putting care of people at the center, not science. She calls for a new paradigm with ten assumptions (p. 378). Number 2 reads: “Health matters more to both individuals and society than medicine.” Number 9 claims, “As an institution, medicine should prioritize the interests of the people over its own.”

Many practical changes would follow, from redesigned “child-proof” drug containers to buildings and public spaces that are more congenial to older people—and, in fact, to everyone else. We should change our attitudes about old age. For example, we might use the adjective “silver” for a medical facility that is friendly to and usable by older people. Changing our attitudes about aging can help all of us imagine more positive futures for each one of us and for all of our society.

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Survivors

Pratt, Arthur

Last Updated: Jul-19-2019

Thomas, Shawn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

For much of the western world, the Ebola crisis came and went without much fanfare. Perhaps we were jolted by the initial news stories, taken aback by the images from affected areas, and slightly unnerved by the travel advisories as we entered security lines at the airport. But for the most part, the Ebola outbreak was an abstract crisis affecting people on the other side of the world, multiple continents away. The closest that most Americans came to Ebola was to hear in the news about the four diagnosed cases in Texas and New York City. It is safe to say that most of the world remains unaware of the depths of this crisis in the West African hotspot countries of Liberia, Sierra Leone, New Guinea, and Nigeria.

Arthur Pratt is a Sierra Leonian pastor and filmmaker, and he witnessed firsthand the invisible enemy that threatened to destroy his country, the communities, and the families that lived there. Despite the human cost that this disease extracted from the West African people, Pratt was inspired by how the people in Sierra Leone rose up to defend their country from a viral invasion that was attacking “the fabric of what it means to be African.” He felt it necessary to tell the world the story of Sierra Leone’s unsung heroes, and so he created a documentary titled Survivors, which focused on the work done by the ambulance drivers and nurses, interwoven with personal stories of children, mothers, fathers, and communities touched by the disease. Survivors gets up close and personal to the 21-month battle against Ebola in West Africa, and shows how the common people of Sierra Leone risked everything to come together and fight back against an existential threat.

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