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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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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Songs from the Black Chair

Barber, Charles

Last Updated: Sep-08-2017

Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Subtitled "A Memoir of Mental Interiors," this book is both an exploration of self and a search for reasons that led to the suicide of the author's friend, Henry, when both were of college age. But there is more. As the memoir unfolds, we learn that since childhood, the author experienced episodes of inexplicable, preoccupying, repetitive thoughts and behavior patterns--much later diagnosed as obsessive compulsive disorder (OCD). And finally, Barber discusses being drawn to work with mentally retarded people in a group home, and the mentally ill homeless at Bellevue Hospital in New York City.Growing up in an intellectual New England family with a tradition of sending its sons to Andover (a prestigious prep school) and Harvard, Barber was expected to continue the tradition, and so he did. At Harvard, however, Barber found himself disintegrating into obsessive thinking, unable to concentrate, near suicidal. He withdrew from Harvard, went back to his small town, hung out with his friends Henry and Nick, washed dishes in a local restaurant, took courses at the local college. Obsessive thinking continued to torment him.In desperation, he dropped out of college again, quickly finding a position as a "childcare worker" in a local group home. The author believes this step was the turning point that led eventually to effective treatment of his OCD (psychotherapy and Prozac), completion of his education, a fulfilling "career" in mental health recovery, and a happy family life. He is currently an associate of the Yale Program for Recovery and Community Health at Yale University School of Medicine.

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Dying: A Memoir

Taylor, Cory

Last Updated: Aug-21-2017

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Australian writer Cory Taylor was diagnosed with untreatable melanoma at the age of 60. In a few short weeks she wrote this memoir, exploring what she was feeling and what is missing in modern medical care of the dying. She died at the age of 61, a few months after this book appeared in her native country.

The book has three parts. Part I, Cold Feet, starts right off discussing a euthanasia drug purchased online from China. Taylor’s melanoma has metastasized to many parts of her body, including her brain. It was first diagnosed in 2005, a malignant mole behind her right knee. In the decade of her cancer, she has tried three drug trials, thought about suicide, and received palliative care. She has harsh words for doctors who don’t mention death, a psychologist who doesn’t help her “Adjustment disorder,” and medicine in general that sees death as a failure.

Taylor feels anger, sadness, and loneliness. She finds comfort and camaraderie in a group called Exit, where there’s frank discussion about death. She writes, “We’re like the last survivors on a sinking ship, huddled together for warmth” (p. 14). She has neither religious training nor interest in it. She became a writer late in life, and now she sees a clear purpose for her “final book.” She writes, “I am making a shape for my death, so that I, and others can see it clearly. And I am making it bearable for myself” (p. 31).

Although scared and suffering, she is reluctant to commit suicide because of the impact on her husband, two sons, and friends. Dying, she writes, “is by far the hardest thing I have ever done, and I will be glad when it’s over” (p. 49).

Part II, Dust and Ashes, describes her earlier life with her mother and father. Her parents were unhappy together and eventually divorced. In her life review, Taylor searches for meaning in the influences on her life. Her family moved often in Australia, also to Fiji and Africa. She feels rootless herself, traveling to England and Japan. Both of her parents die with dementia; she was with neither one at their ends.

Part III, Endings and Beginnings, goes further back to her childhood. She reflects on an idyllic time in Fiji, her discovery of the power of language and writing, and various trials of growing up. She worries that she wasn’t vigilant enough in checking her skin, thereby allowing her disease to become fatal. She feels autonomy in having the Chinese euthanasia drug, but her life is clearly closing in. She says she weighs less than her neighbor’s dog. The last page of the book imagines her death as a cinematic montage, ending with “Fade to black” (p. 141).

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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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In-Between Days: A Memoir about Living with Cancer

Harrison, Teva

Last Updated: Jul-18-2017

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

In-Between Days: A Memoir about Living with Cancer is an accurate and suggestive title. At 37, Teva Harrison was diagnosed with Stage IV breast cancer with metastases to her bones. She lives between hopes for new treatments allowing a useful life but also fears about debility—some already caused by her treatments—and death. An artist, she has created a hybrid of a graphic novel with comic-book style drawing on the left page and traditional prose facing on the right, with variations of this format now and then.

The imaginative world of the book ranges widely in mood, topic, and subject matter, and there is a helpful organization to group the material. Her Preface tells us how drawing helped her gain some power over “the bogeyman that is my cancer” (p. 1). In her Prologue, she tells of “living in the shadows,” or “liminal spaces,” but choosing to occupy these as best she can (p. 3).

Part One lays out the medical facts and dilemmas. The sections are Diagnosis, Treatment, and Side Effects. The author describes the turmoil of being sick with no clear cause, the emotional impact of the serious diagnosis on her and her family, also nausea, loss of fertility, dilemmas of pain management, and many side effects of treatment, including weight loss as well as sudden and torturous menopause.
Part Two explains her social status, her marriage, her “mixed-bag inheritance” (including high-risk Ashkenazi genes), and social aspects, including feeling invisible as a patient, accepting help from friends, being in a support group, and what does a likely “early demise” mean for her, an atheist?

Part Three explores the many emotions in sections for hope (using clinical trials, for example), gratitudes (“At least I’m wasting, not bloating”), wishes, fears, and “Managing Anxiety at Home” (pictures of yoga, gardening, long walks, house cleaning), self-blame, and—nonetheless—dreams. The final section “Incurable” names her current status: “In treatment for the rest of my life,” but the facing picture shows her as a large powerful bird flying among dramatic clouds with the words “I mean what do I have to lose?” Her prose affirms: “Live like a tornado, when I can.”

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The Illumination

Brockmeier, Kevin

Last Updated: Jun-28-2017

Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Brockmeier constructed this novel as six individual stories. No overriding plot carries across all the stories, and none of the individual stories has much of a plot either. But, each is tangentially related to the subsequent story through a journal comprising love notes written daily by a husband to his wife that passes from one story to the next.

I love the ball you curl into when you wake up in the morning but don’t want to get out from under the covers. I love the last question you ask me before bedtime. I love the way you alphabetize the CDs, but arrange the books by height. I love you in your blue winter coat that looks like upholstery fabric. I love the scent of your hair just after you’ve taken a shower… (p. 16)

The stories share characters, but only insofar as they are involved in the transfer of the journal.

Also connecting the stories is a phenomenon in which visible light is produced from the location of the body where there is pain, injury, or disease, and in one case an inanimate object—the journal. It just started to happen.

The Illumination: who had coined the term, which pundit or editorial writer, no one knew, but soon enough—within hours, it seemed—that was what people were calling it. The same thing was happening all over the world. In hospitals and prison yards, nursing home and battered women’s shelters, wherever the sick and injured were found, a light could be seen flowing from their bodies. Their wounds were filled with it, brimming. (p. 138)

The Illumination is part of every story, but never the main subject. It’s noticed, it’s discussed, it’s contemplated, and eventually accommodated as part of daily existence: “everyone began to accept that pain now came coupled together with light.” (p. 139) The Illumination is always there, was always there, and will always be there because “there is no such thing as photonic degradation, that light was effectively immortal, or at least as immortal as the universe itself.” (p. 256)

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Robert Lowell: Setting the River on Fire

Jamison, Kay Redfield

Last Updated: Jun-14-2017

Glass, Guy

Primary Category: Literature / Poetry

Genre: Biography

Summary:

Robert Lowell: Setting the River on Fire is “a study of genius, mania, and character” of American poet Robert Lowell (1917-1977). It is meant to be neither an autobiography nor a critical study of Lowell’s literary output, but a study of an artist and his lifelong battle with Bipolar I Disorder, and an appreciation of how his art and illness were inseparably linked. The author, Kay Redfield Jamison, is a distinguished psychologist who has been quite open about her own struggles with the same disease, and whose lifework consists of exploring the link between Bipolar Disorder and creativity.

Eschewing a purely chronological approach, Jamison divides her work into sections entitled “Origins,” “Illness,” “Character,” “Illness and Art,” and “Mortality.” In the first, she traces the history of mental illness within the poet’s illustrious Boston family. We learn that Lowell’s great-great-grandmother was institutionalized at McLean Asylum for the Insane, which was to be the site of several of the poet’s own hospitalizations. “Illness” is a clinical case study in prodromal childhood symptoms that progress to full-blown manic episodes. We follow the progress made by 20th century psychiatry from psychotherapy and ECT to Thorazine, and, finally, with the introduction of Lithium, to the possibility of prophylaxis against recurrences. Later, in “Illness and Art,” Jamison brings her thoughts about creativity and art to full fruition by discussing what her research reveals about writers and artists.

Appendices include diagnostic criteria for Bipolar Disorder, and an explanation of how Lowell’s psychiatric and medical records were made available by his daughter for the benefit of this volume.

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Attending Others: A Doctor's Education in Bodies and Words

Volck, Brian

Last Updated: May-30-2017

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Volck’s memoir describes his medical practice and learning in a variety of settings (Cleveland, Baltimore, Cincinnati), but, more importantly, in non-metropolitan places, such as Tuba City on the Navajo Reservation in Arizona and rural clinics in Honduras. He suggests that his knowledge of medicine has largely come as he has practiced it and not from his formal education. Further, he believes that best medical practice is not primarily high-tech, urban, or industrial. Each of the 15 chapters has a title—a topic, a person, or a theme—but also one or more locations specified. For example, we have “Chapter One, A Wedding, Navajo Nation, Northern Arizona,” suggesting the importance of culture and locale. Further, the chapters include personal associations from several realms beyond the topic and place as Volck seeks to understand medicine, healthcare, and how we live in the world.

Of the first seven chapters, five are set in Navajo land, where Volck is an outsider by his cultural heritage and his profession, a doctor with a pediatrics specialty. From time to time he reflects on his training, the English verb “to attend,” and specific patients, such as two-year-old Alice in Tuba City and eight-year-old Brian in Cleveland. Both children died while in his care. Working on the front-line of medicine, he considers the weaknesses of our modern attitudes toward death and our wishes for control. He also wrestles with personal lifestyle issues of balancing medicine, family, and an urge to write.

Other chapters describe restlessness in his profession, the growth of his family (including the adoption of a Guatemalan baby girl), hiking in the Grand Canyon, camping in the rain, and a retreat with Benedictine monks. Chapter 11 “Embodying the Word” discusses literature and medicine, lectio divina (a Benedictine reading practice), and the need to listen carefully to patients’ stories.
The final chapter returns to Cincinnati, Honduras, and Tuba City. Volck has found more projects in the Navajo Nation, including a youth service project from his church. With permission, he conducts interviews and plans a book on the Navajo, “drawing on cultural history, anthropology, history, medicine, and politics” (p. 201).

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