Showing 11 - 20 of 153 annotations tagged with the keyword "AIDS"

Summary:

Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.

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Arena

Moore, Frank

Last Updated: Jan-29-2014
Annotated by:
Aull, Felice

Primary Category: Visual Arts / Painting/Drawing

Genre: Oil on canvas

Summary:

This painting depicts what in some respects mimics an anatomy amphitheater, but the title, "Arena," tells us that what is going on here is more spectacle than instruction. Painted in 1992, early in the AIDS epidemic, when rapid decline and death from the disease was almost unavoidable, this complex artwork catalogs some of what was taking place in society at the time. A shaft of window light illuminates the center where a masked doctor is examining a Caucasian patient while a nurse, similarly masked, stands nearby. A large white plume of smoke or steam is emanating from the patient's head. The examination is being filmed and narrated.
 
In the lower right-hand corner a dark skinned patient attached to an IV is lying on a gurney. An attendant has his back toward the patient, whom he seems to be ignoring as he speaks with another white clad hospital worker. If one follows a diagonal from the ignored patient through to the central figures, toward the upper left, another patient, covered completely by a sheet and apparently dead, is being wheeled out of the arena. Adjacent to this scene are people seated cross-legged on the floor, listening to a speaker reading from a book while a Buddha floats above him. [According to art critic Klaus Kertess, the reader is poet John Giorno, "who instructed Moore in Buddhist practice" (Toxic Beauty, p. 11)]. In the lower left, a vendor wheels his cart, selling soda and sausages, adding to the carnival atmosphere. Just ahead of him an elderly woman holds a flattened out body in her arms.
 
To the upper right, police barricades and struggling policeman attempt to hold back a group of protesters carrying a sign saying "Who's in Charge?". In the upper center, two skeletons stand in front of a screen and hold banners bearing Latin inscriptions. An instructor is pointing to drawings on the screen - molecules and cell membranes. Other skeletons are positioned at the edges of the painting, also bearing banners, and in the lower center two skeletons stand in front of a fruit tree. One of these skeletons holds what seems to be a heart dripping blood. Several figures dressed in costume are posing or dancing. The curved rows of the arena are sparsely populated and include skeletons of various animals as well as two men who are injecting themselves in the arm. Robotic figures appear here and there in the painting.

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Patient

Moore, Frank

Last Updated: Jan-29-2014
Annotated by:
Aull, Felice

Primary Category: Visual Arts / Painting/Drawing

Genre: Oil on canvas

Summary:

A hospital bed, pale blue sheets and pillows, white snowflakes. Where there might be an individual nestling his head into the pillow, there is instead a small pile of autumn leaves. In the center of one of the leaves, a small metal-like pentagon. Other leaves flutter on the bed and a small bird is perched on the bed railing above the pillow. There is blood issuing from a needle that is lying on the bed and is attached through tubing to an inverted bottle containing blood labeled "Irradiated" and "Moore, 1997." The juxtaposition of pastel colors and snowflakes with the leaking blood is striking.

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Far From The Tree

Solomon, Andrew

Last Updated: Dec-20-2013
Annotated by:
Henderson, Schuyler

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

The author of this long, compassionate and often startling treatise on identity interviewed over three hundred families to elicit stories about raising exceptional children, stories that also come from these exceptional children ('exceptional' is the term chosen to describe the children in the author's material about the book).

'Far From The Tree' explores the challenges children face in being raised in families where one prominent feature in their identity is forged by something out of their parents' control and generally not part of the family's experience until then. These identities are not 'vertical' (passed down from generations of parents to their children), but 'horizontal', springing up between those who share in that identity at any one time. Solomon begins by wondering about his own relationship with his parents when he was a child discovering his sexuality and ends with his own role as a father, 'the terrifying joy of unbearable responsibility' (702); between the two poles of his own experience, he meets parents and children who have experienced deafness, dwarfism, autism, schizophrenia, severe physical disabilities and diverse gender identities, prodigies, children who were concieved by rape and children who became criminal.  

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Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care.  Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.

The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.

In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”

When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.

In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.

On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women. 

The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.

Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135). 

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Summary:

This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.

            Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.         

            There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.

            Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.

   Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity. 

Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.

  The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)

            As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.

            The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.           

            By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions. 

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Mortal Embrace

Dreuilhe, Alain

Last Updated: Aug-27-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Journal

Summary:

Where many writers about illness have raised questions about the widespread and often unexamined appropriation of military metaphors to describe how doctors and patients have "struggled with," "combatted," "fought," or "defeated" illness, Dreuilhe embraces it and plays it out to the far reaches of its logic.  Part of the brilliance of this AIDS narrative lies in the way it brings new dimensions of meaning to a metaphor that has become so conventional as to be cliché or so imbedded in the language of illness and treatment, it simply fails to be recognized as metaphor.  Beginning with the "simple skirmishes at the frontier garrisons," Dreuilhe chronicles the progression of his own illness with the sharp eye of a good war reporter who sees through the chaos of the battlefield to the strategies being played out.  "Whenever I take an experimental drug," Dreulhe writes, "and people fight desperately to be among those privileged to risk their livesI feel as though I belong to a unit of shock troops parachuted behind enemy lines: already written off as a casualty, I'm entrusted with the task of spearheading the advance."

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Puncture

Evans, Chris; Kassen, Adam; Kassen, Mark

Last Updated: Aug-15-2012
Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Drug-addicted but high functioning lawyer Mike Weiss (Chris Evans) and his partner Paul Danziger (Mark Kassen) run a small personal injury firm in Houston.
They agree to represent an emerency room nurse who has sustained a needle-stick injury and become infected with HIV. Through this work, they discover that a new safety syringe could avoid such injuries in the future, but the innovators are unable to bring it to market because of legal opposition from giant corporations.
The young lawyers become more and more engaged with the case, but  they meet sinister opposition and the outcome is gloomy.

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Illness as Narrative

Jurecic, Ann

Last Updated: Jul-03-2012
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illnessand their inclusion in medical school and other humanities coursesmultiplied from the later decades of the 20th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers ageStephen Greenblatt, Michel Foucault, Judith Butlerthey have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

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Summary:

Johanna Shapiro, Director of the Medical Humanities Program at University of California Irvine School of Medicine, brings her considerable skills and experience as medical educator, writer and literary critic to this unique volume of medical student poetry. Shapiro collected over 500 poems by medical students not only from her home institution but also from other US medical schools and performed a content and hermeneutic analysis. As Shapiro carefully details in her methodology section, she treats "poetry as a form of qualitative data, and [therefore] techniques of analysis developed for other sources of qualitative data (such as interviews, focus groups, and textual narratives) can be applied to an understanding of poetry." (p. 42)

Relying on the work of Arthur W. Frank (see The Wounded Storyteller), Shapiro devises a typology of student poems: chaos, restitution (and anti-restitution), journey, witnessing, and transcendence (this last category was not Frankian in origin). These categories are developed and explicated in Chapter 2: Functions of Writing for Medical Students. As the author notes, poems traverse the boundaries between types; nonetheless, the framework of the analysis rests with this typology. Further, Shapiro explores the metaphors of topography (illness as a foreign land) and quest (student on a heroic, however tentative or confused, journey) throughout her study.

The book contains many fully reproduced medical student poems, contextualized with academic theory on medical education. Hundreds of references, particularly in the fields of narratology and medical education, are cited. After three chapters of theory and methods, eight topics are explored using the outlined analytic tools: anatomy class, becoming a physician, patient experience, doctor-patient relationship, student-patient relationship, social and cultural issues, death and dying, love and life. Prefacing each of these topics is a scholarly essay providing historical and research foundations; every chapter concludes with a summation.

Within the chapters are examples of poems, not only organized by typology, but also by content. For instance in the patient experience chapter, the topics are: "patient pleas for empathy and compassion," "patient fears and suffering," "stigmatized voices," "vulnerability/courage of child patients," and "personal experiences of illness." Within each topic/subtopic, different poems are highlighted and fully analyzed. Additionally, other poems, not reproduced, are quoted as illustrative examples. Summary arguments are provided at the conclusion of each chapter as well as in the final chapter: "Strangers in a Strange Land: What Matters to Medical Students on Their Journey and How They Tell About It."

Although Shapiro states that her purpose "is not to address the literary and aesthetic attributes and value of the poems", she also notes "when students write authentically about their own experience, the results are uniformly moving, compelling and impossible to ignore." (pp 44-5) Indeed many of the poems are rewarding to read not only for content but also for word choice, word play, imagery and narrative line. For instance, in "Ode to the Peach" Brian McMichael explores the senses Neruda or Pollitt-like: "you invite me with / your voluptuous curves / your feminine little cleft". (p 236) Another example is the humorous, self-deprecating "Piriformis" by Curtis Nordstrom relating an early clinical experience by a medical student who hopes against hope that the patient's presenting complaint will require the student to demonstrate his acumen. Unfortunately the sum total of the student's knowledge base is limited to the location of the piriformis muscle; both the student and patient are "so screwed" when, "Alas, the patient presents with / an upper respiratory infection." (p. 16)

Shapiro's sensitivity and generosity of spirit vis-à-vis the medical student experience are evident throughout the volume. She concludes that "what may be most noteworthy about the analysis of these poems is that, amidst their own difficulties and fears, time and again these students reported engaging deeply with their patients." (p 259) She hopes that medical educators will be encouraged to support "in solidarity" the "idealism and high aspirations" expressed in these student poems. (p. 260)

In a postscript, Shapiro reveals her own experiences as a poet-patient. After noting that "[m]edical students are mostly annoyingly healthy, energetic, smart, and capable young adults who like order, structure, and control", (p 261) she also acknowledges how frequently students grapple with the topic of death and dying in their poems. That her poems emerged from advising a student creative writing group demonstrates how poetry can be renewing and vital not just to the student, but to the educator as well.

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