Eros and Illness

Morris, David

Last Updated: Oct-31-2017

McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Several threads tie together this ambitious, beautifully digressive reflection on eros and logos in the experience of illness and the conduct of medicine and health care, which takes into account what a complex striation of cultural legacies, social and political pressures, and beliefs go into both. Framing his reflections on the role of unknowing, altered states, inexplicable events, desire, hope, love, and mystery in illness and healing is a fragmented, poignant narrative of Morris’s own experience of watching his wife succumb to the ravages of early Alzheimer’s.

Her disease is one that leads both professional and intimate caregivers to the same question: what do you do when there’s nothing left for scientific medicine to do? Conversations about palliative care are broadening, he points out, and medical education is making more room for the kind of reflection the arts invite and for spirituality as a dimension of illness experience and caregiving. Guidance in such explorations can be found in ancient literature, especially in the archetypes provided by the Greek and Roman myths. Morris makes astute and helpful use of his own considerable training in literary studies to provide examples of how eros and logos—complementary contraries—have been conceived and embodied in a somewhat polarized culture and how incomplete health care is when it doesn’t foster the capacity to dwell in and with unknowing, possibility, indeterminacy, and mystery. Knowing the limits of scientific medicine may, paradoxically, make it better. Certainly it can help keep our engagements with illness—always relational, always disruptive, most often to some degree bewildering—humane.

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No Apparent Distress: A Doctor's Coming-of-Age on the Front Lines of American Medicine

Pearson, Rachel

Last Updated: Oct-19-2017

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This engaging memoir describes Pearson's medical training at the University of Texas Medical Branch (UTMB) on Galveston Island from 2009 to 2016. During these years her personal values become clear, and she finds fault in her training, in medicine as practiced in Texas, and even in her own errors in treating patients.

Having left a graduate writing program, Pearson took a "postbac," a year of pre-med courses in Portland, Oregon. She interviewed at medical schools "all over the country" and writes satirically about them; she concludes "nothing out of Texas felt quite right," having lived there and done her undergraduate work at University of Texas at Austin. She's a Spanish speaker with a working-class background. When her classmates provide the annual “white-trash”-themed party, she wonders, “do I go as myself?” (p. 21).

Pearson's education continues on three tracks: the formal UTMB courses in medicine, a simultaneous Ph.D. program at the Institute for the Medical Humanities at the University of Texas, and her volunteer work at the St. Vincent's Student Run Free Clinic. The Ph.D. program is off-stage, not mentioned, but the St. Vincent's Clinic becomes pivotal to her development as a doctor and a moral person.

As for medical school, she finds the relentless "truths of biochemistry and anatomy" so reductive that the suffering of people and surrounding politics seem "not to matter at all" (p. 70). Among the politics are: the lack of safety nets for poor people, the use of uninsured (including prisoners) for students to practice on, failures to extend Medicare, pollution (notably from the oil industry), losses of charitable care, and income disparities that include crushing poverty for many. Something of a rebel, she writes that medical school "felt like junior high" (p. 44). She does enjoy the "clinical encounters" with real patients.

St. Vincent's, by contrast, was “a relief.” Her pages sparkle with her conversation with clinic patients, some homeless, all poor, and all suffering. She reports--confesses, she even says--her errors that had consequences for patients. She writes that errors are an unavoidable part of medical education, but that it's wrong that they should routinely happen to the poorest members of society.

Chapter 8 discusses depression, which she felt after the second year. She writes about high rates of suicide among medical students and doctors; indeed a close friend killed himself during the "post-doc" year. Because some states require doctors to report psychiatric care, some doctors avoid such care. This consequence “drives a suicide-prone population away from the help we may need" (p.92).

The last two years are the rotations through specialties: surgery, dermatology, trauma, rural medicine, neurology, internal medicine, and so on. These are clearly and insightfully described. In one case (internal medicine), she allows the reader to see the irony of a doctor providing hair removal by laser, diet foods, and Botox treatment for wrinkles, “a pure luxury transaction” (p. 183).

Pearson describes the storms, hurricanes, and floods that hit Galveston Island, also the pollution from the oil industry that causes a “cancer belt” along the Louisiana and Mississippi coasts (p. 104). At last she finishes her program, understanding that her identity is simultaneously a person, a physician, and a writer (p. 248).

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This Way Madness Lies

Jay, Mike

Last Updated: Oct-17-2017

Glass, Guy

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

Genre: History

Summary:

This Way Madness Lies was published in partnership with London’s Wellcome Collection for the exhibition “Bedlam: The Asylum and Beyond,” which ran from September 2016 - January 2017 and was curated by Mike Jay and Bárbara Rodriguez Muñoz. It is a book that was meant to accompany the exhibition, yet which, by virtue of the substantial text and reproductions, can stand alone.

The book traces the history of treatment of the mentally ill by following the colorful story of Bethlem Royal Hospital from its antecedents in the Middle Ages up to the present. Its sway over the public imagination evidenced by its appearance in everything from Jacobean Drama to “Sweeney Todd,” Bedlam has truly attained archetypal status. An archetype, yet also a real functioning hospital. Sections of the book entitled “Madhouse,” Lunatic Asylum,” and “Mental Hospital” chronicle the facilities designed respectively during the 17th/18th, 19th, and 20th centuries, and explain how they reflect changing notions of madness in each era.

The first structure was visually grand but lacked a foundation, a metaphor for what was going on inside: “a façade of care concealing a black hole of neglect” (p. 39). It became a tourist attraction along the lines of the zoo, with nothing preventing the public from gawking at and taunting the inmates. While its replacement gave the impression of being more functional, conditions proved equally squalid. On the other hand, 19th-century Europe and the United States saw asylum reforms, as well as the medicalization of madness as an “illness” and the ascent of psychiatry as a branch of medicine. Finally, in 1930, the buildings still in use in Monks Orchard, a suburb of London, were constructed.

By contrast, we learn about treatments elsewhere, most notably Geel, Belgium. There, for centuries, as an alternative to being warehoused in psychiatric hospitals, the mentally ill have been successfully boarding with townspeople.

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Fixed: The Science/Fiction of Human Enhancement

Brashear, Regan

Last Updated: Sep-13-2017

Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video — Secondary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The opening of the documentary Fixed: The Science/Fiction of Human Enhancement is meant to startle. A young woman (disabled performance artist Sue Austin) in a motorized wheelchair fitted with transparent plastic fins gracefully glides underwater around seascapes of coral and populations of tropical fish. The scene dislodges expectations about what wheelchairs can do and where they belong. It creates what for many are unlikely associations among disability, wonder, joy, freedom, and beauty. Watching Austin incites questions about what this languid and dreamy scene might have to do with human enhancement, which more predictably brings to mind dazzling mechanical, chemical, or genetic interventions that surpass the ordinariness of a wheelchair and extend human capacities. But this gentle scene opens the way for the film’s conversations about the ethics and meanings of human enhancement that emphasize perspectives by people with disabilities.

Regan Brashear’s film features interviews with and footage of people living with disabilities as they move in varied ways through their environments—home, workplace, airport, therapy lab, city street. Photographs, news footage, and performances by mixed-ability dance companies complement their stories. We also hear from a transhumanist, academicians, and activists. Together they express a wider range of views about human enhancement than seems possible in an hour-long film.

Often contrastive views are paired or clustered. For instance, double amputee Hugh Herr, Director of MIT’s Biomechtronics Group, brags that his carbon-fiber and other prosthetic legs will outperform the biological legs of aging peers. His lab develops robotic limbs controlled by biofeedback, and he intends to end disability through mechanical technologies. Gregor Wolbring, a biochemist and bioethics scholar who was born without legs, regards himself as a version of normal and rejects being fixed. “I’m happy the way I am!” he exuberantly proclaims. Rather than strive for normalcy through restorative technology, Wolbring urges acceptance of imperfection.

Altogether, the interviewees raise questions about how to respond to differences among human bodies: focus on corrections toward achieving a concept of “normal”? accept diversity? extend human potential? The interviews call out underlying assumptions about disability that influence our answers. Do we assume that disability is an aberration that should be erased? A condition located in individual bodies? A condition brought about by unaccommodating social and built environments? Or, as disabled journalist John Hockenberry proposes, “a part of the human story”?

Fixed also asks what the social and ethical consequences of pursuing enhancements might be. Do they equalize opportunity? Do they misplace priorities by channeling attention and resources away from basic health care and ordinary, essential technologies, such as reliable, affordable wheelchairs? Are biological, chemical, and mechanical enhancements indispensible opportunities to extend human experience, as transhumanist James Hughes claims? Do we have an ethical responsibility to enhance, whether to correct or extend?
Hockenberry mentions that we already enhance. Think of eyeglasses, telescopes, hearing aids. People with disabilities, he points out, are typically the first adopters of technologies, such as computer-brain interfaces, that are destined for wider use. Archival film footage of warfare during this discussion reminds us what many of those uses have been. Should we worry, he asks, about using people with disabilities as research subjects? Or should we say with recently paralyzed Fernanda Castelo, who tests an exoskeleton that braces her body as it moves her forward: “Why not”?

Considering whether we should trust technology to create equality or treat each other equally in the presence of our differences, disability rights attorney Silvia Yee poses the film’s most vital question: “Which is the world you want to live in?” While Fixed gives a fair hearing to disparate answers, the closing image is suggestive. A woman in a motorized wheelchair offers a lift to someone struggling to push a manual chair uphill. She invites him to grasp the back of hers and they roll forward together.

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The Best of the Bellevue Literary Review

Ofri, D., et al., eds.

Last Updated: Sep-08-2017

Aull, Felice

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Essex Serpent, The

Perry, Sarah

Last Updated: Sep-07-2017

Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The idea for her second novel came to Sarah Perry in a flash (Ref. 1) as her husband was telling her about the 1699 sighting of a serpent or dragon in Henham, a village slightly to the northwest of the town of Essex, where Ms.Perry was born in 1979. The late 19th century events of the novel occur primarily in Aldwinter, a fictional fishing village on the Blackwater estuary. Divided into 4 books (with titles derived from a 1669 pamphlet on the Serpent), each with subdivisions by month, further subdivided into chapters, the story takes place over 11 calendar months, from New Year's Eve to November, 1892. Although the story does not feel complicated and should not be difficult to describe in a synopsis, it is a tribute to the novelist's Dickensian talents that in fact it is somewhat complex, involving four couples and their various children and friends and their increasingly intricate relationships, all revolving around the palpable feeling in Aldwinter that the famous Essex Serpent has returned, resurfaced, or decided to re-animate all the lives therein. The protagonist is Cora Seaborne, a recently widowed free-thinker, adept in biology and natural sciences, and mother of an adolescent boy, Francis, who would nowadays probably receive the label "autistic." After the death of her abusive husband from oropharyngeal cancer, Cora becomes emotionally involved with Luke Garrett, the treating surgeon, an idiosyncratic, brilliant man, who has a bosom buddy, George Spencer (simply called "Spencer"), a very wealthy former medical school classmate. With an introduction from her friends Charles and Katherine Ambrose, Cora and Martha - her intimate companion - visit William (often referred to as just "Will") and his wife Stella Ransome in Aldwinter, where Will is the parish minister and father to three children. The eldest is Joanna, a precocious adolescent girl one imagines, alongside a younger Cora, as a younger version of this novel's author, who describes herself as vibrantly curious of all her surroundings while growing up in Essex as a young girl. (Ref. 2)

With the arrival of Cora and Martha in Aldwinter, the narrative begins in earnest with the development of the mounting anxiety over the mysterious events (a missing boat, unexplained drownings) attributed to possibly a resurgent Essex Serpent besetting Aldwinter; Luke's miraculous operation saving a man named Edward Burton from a knife wound to the heart; the increasingly romantic relationship between Cora and Will, to Luke's dismay; Stella's rapidly progressive pulmonary tuberculosis; the disappearance of Naomi Banks, a friend of Joanna; and an attack on Luke by the same man who had knifed Edward Burton. By novel's end, without spoiling the plot, most loose ends have been cauterized, left more neatly dangling or deftly retied.

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Doctored: The Disillusionment of an American Physician

Jauhar, Sandeep

Last Updated: Aug-31-2017

Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Very early in this memoir, Dr. Sandeep Jauhar refers to an essay Sachin Jain and Christine Cassel published in JAMA (2010) that categorizes physicians as knights, knaves, or pawns. His take: “Knights are motivated by virtue…Knaves are selfish…Pawns are passive.” (p.7) Jauhar rides into medical practice as a knight in shining armor on a white horse after years and years of training. Would he be able to hang onto his knighthood?

The book is divided into three parts—Ambition, Asperity, Adjustment—bookended by an introduction and epilogue. Jauhar’s disillusionment with American health care is his primary theme, and it connects these three parts:

As a young adult I believed that the world was accommodating, that it would indulge my ambitions. In middle age, reality overwhelms that faith. You see the constraints and corruption. Your desires give way to pragmatism. The conviction that anything is possible is essentially gone. (pp. 5-6)

Jauhar is comprehensive and unsparing in accounting for the sources of his disillusionment and his fall from knighthood. He was vulnerable to disillusionment from the start having been pushed by his parents in into medicine against his desires. His mother “wanted her children to become doctors so people would stand when we walked into the room,” (p. 21) and his father said that in medicine he “would have respect, wealth, and influence.” (p.133) He put off medical school for as long as he could by first getting a PhD in experimental physics. Finally, 19 years after first starting college he became a practicing cardiologist, though not without almost bailing out of medical school for a career in journalism as he writes in his first memoir, Intern (annotated here).

Jauhar's first position was as a hospital staff member heading up a heart failure unit. As hospital staff he wasn’t paid as much as physicians in private practice. This differential wasn’t a problem by itself, but because the salary was insufficient for the lifestyle he sought and his wife—a physician also—urged him to provide, “I want nice things for us: a home, safe cars, good schools. They may seem trivial to you, but they are not to me.” (p. 75) This pressure was made worse by his older brother earning twice the income while working at the same hospital as an interventional cardiologist, and as well by all the other physicians in private practice who lived in big houses and drove fancy cars.

The story then veers into a period when he sheds his knighthood for knavery. Jahaur joins a pharmaceutical company speaker bureau that supports a particular product and quits over his concern that the product may have been more toxic than first thought. Guided by his brother who says, “As much as we hate to admit it, patients are a commodity,” (p. 92) He takes positions with various private physician practices that operate more like procedure mills than health care providers.

Jauhar does not do well as a knave, realizing “I had made a Faustian bargain. Having my eyes opened to the reality of contemporary medical practice had been painful. Now I had to make a choice. Continuing on this path was leading to ruin.” (p. 257) And so he tells of his adjustment, which for him is finding an “uneasy equilibrium” (p. 258) by continuing to work with private practices, just not as much, and spending more time with his family. Thus, in the end, Jauhar does not a return to full knighthood and becomes something closer to a knight with knavish tendencies or a knave with knight-like qualities.

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The Story of Beautiful Girl

Simon, Rachel

Last Updated: Aug-07-2017

McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

On a stormy night in 1968 a retired, widowed schoolteacher in rural Pennsylvania opens her door to find a young couple, she white, he African American, wrapped in blankets, drenched, and silent. Letting them in changes her life. They have escaped together from a nearby mental institution most locals simply call "The School." The young woman has recently given birth. When Martha lets them in, her life changes forever. Supervisors from "the School" show up at the door, the young man escapes, and the young woman, memorably beautiful, is taken back into custody. The only words she is able to speak out of what we learn has been a years-long silence are "Hide her." Thus she leaves her newborn baby to be raised by a stranger. The remaining chapters span more than forty years in the stories of these people, linked by fate and love and the brutalities of an unreformed system that incarcerated, neglected, and not infrequently abused people who were often misdiagnosed. Homan, the young man who loved Lynnie, the beautiful girl from the institution, was deaf, not retarded. Lynnie was simply "slow," but a gifted artist who recorded many of the events of her life in drawings she shared only with the one attendant who valued and loved her. Though her pregnancy resulted from being raped by a staff member, the deaf man longs to protect her and care for the baby. Years separate them; Homan eventually learns signing; Lynnie's sister befriends her and an exposé results in the closure of the institution. Over those years Lynnie and Homan witness much cultural change in treatment of people like them who were once systematically excluded. They find social identities that once would have been entirely unavailable to them. And eventually, after literal and figurative journeys of discovery, they rediscover each other.

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A Mastectomy: Letter to Esther Burney

Burney, Fanny

Last Updated: May-02-2017

Mathiasen, Helle

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A rare patient narrative from 1812 describes a mastectomy performed before the introduction of anesthesia. This letter from Frances d'Arblay (1752-1840) (née Frances [Fanny] Burney), addressed to her older sister, Esther, details her operation in Paris by one of Napoleon's surgeons.In her childhood and youth, Fanny Burney moved in the best London society; she was a friend of Dr. Johnson who admired her. She served five years at the court of George III and Queen Charlotte as Second Keeper of the Royal Robes (1786-1791). Fanny Burney married Adjutant-General in the army of Louis XVI Alexandre-Jean-Baptiste Piochard d'Arblay in 1793. He had fled to England after the Revolution. They lived in England and spent ten years in France (1802-1812).Burney's mastectomy took place 30 September 1811. The patient wrote about her experience nine months later. She chronicles the origin of her tumor and her pain. She is constantly watched by "The most sympathising of Partners" (128), her husband, who arranges for her to see a doctor. She warns her sister and nieces not to wait as long as she did. At first resisting out of fear, the patient agrees to see Baron Dominique-Jean Larrey (1766-1842), First Surgeon to the Imperial Guard.He asks for her written consent to guide her treatment; her four doctors request her formal consent to the operation, and she makes arrangements to keep her son, Alex, and her husband, M. d'Arblay, away. Her husband arranges for linen and bandages, she makes her will, and writes farewell letters to her son and spouse. A doctor gives her a wine cordial, the only anesthetic she receives. Waiting for all the doctors to arrive causes her agony, but at three o'clock, "my room, without previous message, was entered by 7 Men in black" (136).She sees "the glitter of polished Steel" (138). The extreme pain of the surgery makes her scream; she feels the knife scraping her breastbone. The doctors lift her up to put her to bed "& I then saw my good Dr. Larry, pale nearly as myself, his face streaked with blood, & its expression depicting grief, apprehension, & almost horrour" (140).Her husband adds a few lines. These are followed by a medical report in French by Baron Larrey's 'Chief Pupil'. He states that the operation to remove the right breast at 3:45pm and that the patient showed "un Grand courage" (141). She lives another twenty-nine years. It is impossible to determine whether her tumor was malignant.

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Admission, Children's Unit

Deppe, Theodore

Last Updated: Apr-11-2017

Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The speaker of this poem is a nurse who is recalling and attempting to come to terms with a disturbing clinical encounter she’d had the week before. (I should note at the outset that there’s no indication in the poem as to whether the nurse is male or female. I choose to think of her as female). What had happened is that a mother had brought her five-year-old son in for treatment, and the nurse’s exam revealed that the child had second- and third-degree burns on his torso—in the shape of a cross. The mother, weeping, confessed that her boyfriend had, as a punishment, applied a cigarette to the child’s body—while the mother had held her son. Seeing the mother’s tears, the nurse considered offering the woman some Kleenex, but could not bring herself to do so. The child retrieved the box of Kleenex, then clung to his mother’s skirt, and glowered at the nurse. Then the nurse had participated with three others in prying the boy away from his mother. In the present of the poem, a week after the encounter, the nurse attempts to deal with the guilt and shame she feels in her failure of professional decorum and compassion—at having failed to rise above her moral judgment against the mother and offer the woman basic human kindness and respect. In confronting the chaos of her emotions, the nurse turns to a story she’d learned in high school: the story of St. Lawrence. The significance of her attempt to think with this story can be overshadowed, for readers, by the intensity of the clinical encounter she recalls; but her endeavor is of at least equal significance as the encounter.

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