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).

View full annotation

Losing Thomas & Ella: A Father's Story

Weaver-Hightower, Marcus

Last Updated: Aug-23-2020

DiLeonardo, Olivia

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

Genre: Graphic Memoir

Summary:

Dr. Weaver-Hightower wrote, illustrated, and published this powerful graphic work in the Journal of Medical Humanities. The comic itself is presented in a traditional paneled format, with a few exceptions, and rendered in a moody ink wash in black, white, and various shades of darker and lighter greys. The story is told in the authentic, sometimes faltering voice, of the father of Thomas and Ella, a pair of twin infants who died at 22 and 24 weeks into pregnancy. Beginning with their harrowing trip to the hospital, the comic describes the father and mother’s loss of Ella, shortly after she was born prematurely; their subsequent wait for Thomas to reach the “viable” age of 24 weeks; his stillbirth; and the couple’s sudden discharge from the hospital, going home with “empty arms”. The story then transitions into “The Long After”, including the funeral and the phases of the parents’ grieving process. The father describes his grief, frustrations, the couple’s differing ways of coping, and his ambivalence and anger toward religion as a source of comfort or deeper understanding. On the last page, he recounts their hopes and fears as they enter into their second pregnancy, concluding with panels of the father wrestling with how to understand and process this loss. The final panel is an image of the father in profile, expressionless, saying nothing, a fitting conclusion to a story for which words seem to fail.

With this piece, the author introduces us to the genre of the “research comic”. The comic is followed by a methodological appendix, which explains the author’s process for choosing, capturing, and relating this history in words and illustrations, as well as his rationale for selecting a comic or graphic memoir format for the piece. The author also elaborates upon the concept of the comic as a form of “rigorous, informative research” (226). The appendix is very interesting and will satisfy the curiosity of readers asking the questions, “How did he do this?”, or “Why is this story a comic?”, but the piece stands on its own without the appendix, as well.

View full annotation

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain

Norman, Abby

Last Updated: Jul-10-2020

Grogan, Katie

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In her memoir Ask Me About My Uterus, science writer Abby Norman tells two intertwined stories: one about her fraught relationship with her own chronically ill body, and another about the fraught relationship between women and medicine. Norman is a sophomore at her dream college when a sudden, unrelenting abdominal pain sends her to the emergency room—and into a revolving door of medical appointments for years to come. Thus begins her diagnostic odyssey, protracted by an infuriating obstacle: not only must she endure excruciating pain, she must convince doctors that it’s real.

Norman is eventually diagnosed with endometriosis but has several frustrating clinical encounters along the way. Her symptoms are repeatedly minimized or disbelieved by doctors of various identities and specialties. One actually says the words that have long been inferred to Norman and so many women before her: “This is all in your head.” Finally receiving an accurate diagnosis provides some measure of clarity about Norman’s pain but little in the way of relief. She learns firsthand that medical knowledge about endometriosis is desperately lacking—a troubling realization given its prevalence. A commonly cited statistic suggests one in ten women have endometriosis but, as Norman notes, most studies have excluded marginalized communities, so the incidence is likely higher. Norman ultimately becomes an expert on the condition, setting her on a path to advocate for herself and others with endometriosis—and to write about it.

The memoir is organized chronologically, beginning with the onset of Norman’s symptoms about seven years prior to the book’s publication, with occasional flashbacks that draw connections between her current crisis and her difficult childhood. She opens several chapters with descriptions of famous case studies and experiments, situating her own experience within a long and disturbing lineage of women dismissed, misdiagnosed, and mistreated by medical professionals.

View full annotation

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.

View full annotation

Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

“All pain is simple” reads the opening sentence of this unusual and striking book. The next sentence reads, “And all pain is complex.” These two sentences foreshadow many puzzles to come: how do we live between chaos and control? Why can’t doctors figure migraines out? Why don’t they agree on a treatment for a particular patient? Olstein is a poet and long-term migraine sufferer. Her book offers many observations about pain, and her attempts to define it, describe it, and plumb its nature through language. There is no linear narrative or argument, rather 38 very brief chapters—usually three to five pages—and many of these could be read in a different order.

Olstein uses the terms “studies” and “research” for her efforts to capture pain, to explain it, and to understand the cause(s) of her disease. Her mother had migraines; women have three times the rate of men; she had a childhood head injury. Do any of these factors explain her disease? No. And what treatments work? She lists some 50 drugs/supplements/activities she has tried to deal with her illness. None of these have worked in a definitive way. Further, she lists some 30 side-effects she has experienced from these various treatments (pp. 74-75). She has had multiple migraines, one lasting three months, but she also says drugs keep pain at bay: “mostly the medication does work” (p 90).

Some disparate figures help her focus her inquiry: Joan of Arc (possibly a migraine sufferer), the TV character Dr. Gregory House (racked with chronic pain, he is an opioid addict), Virginia Woolf, and Hildegard of Bingen (possibly a migraine sufferer). Also ancient writers such as Lucretius, Pliny the Elder, and Antiphon the Sophist, and contemporaries from different fields, such as mathematics and neurology. Also she refers to poems by Emily Dickinson, Elizabeth Bishop, and C. D. Wright, as well as to an article on gendered literature by Siri Hustvedt.

Largely written during a writing residency, these are incisive notes plus associations as she plumbs not only her illness but also her responses—as poet, as thinker, as searcher for healing—to the bizarre, long, difficult path of her migraines. (We have only brief mentions of her personal and family life.) While she refers to some scientific literature, it is more often that her insights come from artistic fields such a literature, sculpture, drama, and popular music. She writes that her work with a therapist over a dozen years has been helpful to her.

There is no conclusion…nor can there be. Her illness, treatment, and writing are all works in progress. Patients are different; doctors are different; science evolves. In their many forms and presentations, migraines are mysterious and complex, as this book creatively and powerfully shows. Olstein writes, “The beauty, the love, is in what we perceive” (p. 144). We may take this observation as the guiding principle for the book.

View full annotation

Maybe You Should Talk to Someone: A Therapist, Her Therapist, and Our Lives Revealed

Gottlieb, Lori

Last Updated: May-15-2020

Zander, Devon

Primary Category: Literature / Nonfiction

Genre: Memoir

The Estrogen Elixir: A History of Hormone Replacement Therapy in America

Siegel, Elizabeth

Last Updated: May-05-2020

Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: History

Summary:

Elizabeth Siegel Watkins reports on the use of estrogen alone and in combination with progestin for women during menopause and after menopause from the 1890s until the book was published in 2007. She concentrates on the sixty years between 1942 and 2002. The event Watkins uses to mark 1942 as an important moment is the U.S. Food and Drug Administration (FDA) approval for the estrogen product Premarin as hormone replacement therapy (HRT) in women with menopause symptoms. The event she uses to mark 2002 is the release Women’s Health Initiative (WHI) findings that showed estrogen is not the “elixir of life” that many thought it was then.

Watkins builds her story off the trajectory of estrogen use during this sixty-year period, which spanned two peaks followed by two crashes. The estrogens for HRT first crested in the early 1970s before its use dropped dramatically in 1975 on uterine cancer fears. Estrogen use began to rise in the early 1980s on regained confidence from combined use with progestin to reduce uterine cancer risk and from hopes that bone loss could be prevented and even reversed. This resurrection continued through the 1990s as estrogen use during and after menopause became “associated with reduced risk of colon cancer, prevention of tooth loss, lower incidence of osteoarthritis, increase in bone mass, reduced risk of Alzheimer’s disease, and lower rates of death from all causes” (p. 241).

Based on surveys of prescribers and prescription data during this time, Watkins concludes that “physicians who saw menopausal women as patients were…enthusiastic prescribers of HRT” (p. 244). They remained enthusiastic, making Premarin the most prescribed pharmaceutical product through much of the 1990s and until 2002 when the WHI trial was stopped three years early because it showed that HRT failed to produce the expected benefits, and even worse.

Women who took the estrogen–progestin pills, as compared with those in the control group who took placebo pills, increased their risk of breast cancer by 26 percent (relative risk of 1.26), coronary heart disease by 29 percent (1.29), stroke by 41 percent (1.41), and pulmonary embolism (blood clot) by 213 percent (2.13). (p. 271)

The investigators advised clinicians based on these results, that HRT “should not be initiated or continued for the primary prevention of coronary heart disease” (p. 271). Watkins quotes an editorial from the Journal of the American Medical Association that went further in saying that the trial “provides an important health answer for generations of health postmenopausal women to come—do not use estrogen / progestin to prevent chronic disease” (p. 273). HRT prescriptions plummeted.

These clinical inputs into the trajectory of estrogen are just the bare bones of estrogen history. Watkins fills in the story:

The story of estrogen is woven from several strands: blind faith in the ability of science and technology to solve a broad range of health and social problems, social and cultural stigmatization of aging, shifting meanings and interpretations of femininity and female identity, and the pitfalls of medical hubris in the twentieth century. (p. 1)

Watkins weaves these strands into the story of estrogen, which she tells in a chronological fashion, often as the subjects of individual chapters. Some include: the implications of rising feminism; pharmaceutical company promotional activities; the roles of patient advocacy organizations; FDA requirements for patient information about prescription drugs; generational differences in views of menopause; evolving research methods and evidence standards; and cultural shifts and mainstream media influences.

View full annotation

Death is But a Dream: Finding Hope and Meaning at Life's End

Mardorossian, Carine; Kerr, Christopher

Last Updated: Mar-17-2020

Galbo, MA, MILS, Sebastian

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

Genre: Criticism

Summary:

In Death is But a Dream, Christopher Kerr, MD, PhD, the Chief Executive Officer and Chief Medical Officer of Hospice & Palliative Care Buffalo, shares his patients’ end-of-life dreams and visions. The content and intensity of these dreams vary, but often center on patients’ transient meetings with predeceased loved ones, offering a deeply spiritual sense of peace during periods of physical suffering.

Using patient interviews, Kerr’s book does not fetishize dream events as ghostly commotions or in terms of pseudo-mysticism, or insist on using a religious framework for their interpretation, explaining rather that bearing witness to and legitimizing end-of-life dream experiences constitute a new ethical imperative in the practice of palliative care: “A true holistic approach to patient care must also honor and facilitate patients’ subjective experiences and allow them to transform the dying process from a story of mere physical decline to one of spiritual ascension” (Kerr 28). Case after case, his research documents that because end-of-life dreams provide patients with a singular emotional and psychological comfort that no palliative medication can simulate, hospice professionals need to validate patient dreams by listening carefully and compassionately.

With this in mind, end-of-life dreams serve as a kind of counter-narrative to dominant cultural understandings and representations of human experiences in hospice, specifically stereotypes of terminally ill individuals as being incapable of meaningful communication, creativity, and understanding. Kerr’s patients’ narratives reveal that end-of-life dreams and visions are not trauma-inducing experiences or instances of religious prophecy, but “help reframe dying in a way that is not about last words and lost love but about strengthened selves and unbreakable bonds across lives” (142).

Death is But a Dream upends medical research, or certain “limitations of science,” that oversimplifies end-of-life dreams by attributing them to neurological deterioration, oxygen deprivation, and the side effects of pain management medication (11). The general lack of rigorous, serious-minded research in end-of-life dream experiences is inseparable, in part, from institutionalized medicine’s “inability to see dying as anything but a failure” which has produced a healthcare system that “reflects a limited view of the totality of the dying experience” (7). The patient accounts that Kerr documents, however, reveal an undeniable dimension of human experience at life’s end whose complexities may be well beyond the reaches of full scientific understanding. End-of-life dreams seem to be part of an elaborate system of compensation (to borrow a term used by Siddhartha Mukherjee), as the mind works overtime to activate and animate certain memories to diminish the physical realities of dying. “There is an adaptation—substantive, spiritual yet cognitively meaningful,” writes Kerr, “a mechanism through which the patient can emerge from the dying process with a positive psychological change” (69). Indeed, the mystery of end-of-life dreams—their visions of loved ones; of seeking forgiveness, healing, and understanding within weeks, sometimes days, of one’s death; of comforting apparitions and visitations—points to a miraculous capacity within the human heart that eases the life-to-death transition.

View full annotation

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.

View full annotation

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.

View full annotation