Showing 31 - 40 of 271 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself.  Or of other care-giving families.

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This anthology is a sequel to Pulse: The First Year (2010). Both anthologies are comprised of postings to the website “Pulse: voices from the heart of medicine,” an online publication that sends out short poems and prose pieces every Friday. As the website subtitle suggests, the topics are from the medical world, the writing is personal (not scientific), and the writers give voice to feelings and perceptions from their direct experience as care-givers, patients, or family members of patients. All the pieces are short (typically one to five pages), usually with a tight subject focus. For example, in "Touched," Karen Myers reports how massage has helped her muscular dystrophy. 

The postings in the second anthology originally appeared from April 2009 through December of 2010. Because the 87 pieces appear in the order they were published, they don’t have linear coherence. Therefore the editors of have thoughtfully provided four indices in the back of the book: by author, by title with summaries, by healthcare role, and by subject/theme.

Prose pieces vary widely in style and technique. The poems are almost all free verse, although some poets have used regular stanzas. “Depression Session,” (p. 157) is an 18-line poem by a physician about a difficult mental patient. Many of the pieces explore the intensity of medical subjects with impacts on doctor, patient, and/or family. Some of them show limits of medicine. “Pearls before swine” (p. 191) relates the experience of a third-year medical student in a rotation at the office of a racist and sexist physician. “Babel: the Voice of Medical Trauma” (p. 158) dramatically tells the story of a poorly handled birth at a hospital.  

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Linden, a professor of neuroscience, has written a book for a general audience on the subject of touch. A synthetic thinker, he combines insights from science, anatomy, neurophysiology, psychology, and social behavior. He argues that touch pervades much of human experience: “From consumer choice to sexual intercourse, from tool use to chronic pain to the process of healing, the genes, cells, and neural circuits involved in the sense of touch have been crucial to creating our unique human experience” (p. 5). Case studies of medical oddities enliven his account.

Chapter One, “The Skin is a Social Organ,” draws on a wide range of examples, from NBA players to vampire bats. Touch is especially important to the development of human newborns. Lab experiments have shown that the attitude of the toucher can influence the experience of the touched. English and American cultures are touch aversive.

Chapter Two discusses the neurophysiology of touch, the sensory nerves and the neurons that link to the spinal cord or to the brain. Lively examples include string players, 1900-era women with “underwear-shaped numbness,” and the Braille writing system for the blind. 

In Chapter Three, “The Anatomy of a Caress,” Linden explores further the tactile fibers that relay touch. “A caress communicates that you are safe,” he writes, and the C-tactile system is the main route from skin to the brain.

Chapter Four, “Sexual Touch,” moves beyond caress all the way to orgasm, detailing the roles of touch receptors and brain activity as well as the wide variety of personal and social contexts.

Chapter Five looks at nerve endings of human skin that detect chili peppers as hot and mint as cool. Vampire bats have another version that detect heat, useful for locating blood vessels on “donors.”

Chapter Six, “Pain and Emotion,” opens with Pakistani children who do not feel pain; they have a genetic mutation that influences a sodium channel in neurons. Pain itself varies with people’s emotions, experience, and expectations. Some mindfulness practices (yoga, Tai Chi, meditation) can lessen chronic pain.

Chapter Seven, “The Itchy and Scratchy Show,” discusses river blindness and shingles, among other topics.

Chapter Eight, “Illusion and Transcendence,” provides a helpful overview of sensory nerves and their connection to various parts of the brain. Some stimuli activate the “emotional-affective-cognitive portions,” while others activate “sensory-discriminative centers.” Touch, in general, often has strong social meanings but does not, for Linden, imply any supernatural dimensions.  

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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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Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Although Dr. Helman’s untimely death did not permit a final editing by this prodigious writer, the published edition is not a book-in-progress. An Amazing Murmur of the Heart: Feeling the Patient’s Beat represents a powerful and persistent continuation of observations and themes that grew out of medical education, close observations of physicians and patients, and his studies in anthropology. All of these forge an approach to patient care that is out of the ordinary.  

As his previous writings suggest, Helman is passionate about medicine but concerned, equally about the emergence of those who fail to listen and to those who might be called techno-doctors.  While professing his appreciation of and attraction to the magic machine or computer, he is mindful of its absence of emotion and ambiguity.  “For this post-human body is one that exists mainly in abstract, immaterial form.  It is a body that has become pure information.” (p. 11)

Chapters are comprised of stories about patients and their care providers, each representing complex facets that defy precise measurement, answers and conclusions.  As Helman steadily notes, the physician must be an archeologist:

Most patients present their doctors with only the broken shards of human life—the one labeled infection, disease, suffering and pain each of these shards is only a small part of a much larger picture….the doctor will have to try and reconstruct the rest. (p.66)

In general, the chapters illustrate first an initial review of medical history, and then specific patient stories.  Of the two, the story is most important.  “Mask of Skin,” for example, begins with an overview of skin from Vesalius to the present: largest organ, stripped bare by anatomists, penetrated by disease, later scanned and X-Rayed, tattooed, re-fitted by surgeons, etc.   That said, Helman the physician-anthropologist, moves from science to specific stories about patients whose skin may cover profound experiences, psychic and otherwise, that might be overlooked by a dermatologist.   Although skin is involved in each of that chapter’s stories, the willing physician must dig deeper in his observations and caring manner to make more profound discoveries.      

In a chapter entitle “Healing and Curing” the author describes an old friend, a practitioner who provides advice about patient care that ”was not included in his medical texts”.  Patients are more than a diagnosis dressed in clothes.  Doctors must make patients “feel seen, listened to, alive”.  Always patients should be regarded as people who happen to be sick.  From his admired colleague Helman learned to be an attentive listener  to the "tiny, trivial, almost invisible things" in patient encounters and stories. To truly heal as well as cure requires the doctor to empathise with what the patient is feeling thereby requiring both an act of imagination and of the heart.  The chapter, of course, continues with with stories that illustrate the points enunciated by his colleague and accepted by his disciple. 

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Polio: An American Story

Oshinsky, David

Last Updated: Sep-16-2014
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: History

Summary:

 In his introduction, the author summarizes the history of polio’s first appearance as an epidemic in the United States, the ensuing research, subsequent applications of new information, attempts at abatement and ultimate success in the development of preventative measures.

Embedded in the successes and failures of the research applications are the details of human interactions.  Their impact on the goal of achieving near extinction of polio in America constitutes a dramatic subplot, which the historian adroitly weaves into the work.

For the reader who has only a sketchy knowledge of this important period in medical research, this history provides details of human exchanges, conflicts and resolutions necessary to bring the scientific developments to fruition.  Central among the multiple struggles rests the basic disagreement between Jonas Salk and Albert Sabin, two of the most prominent scientists working against the clock to develop the most effective and safest form of immunization.  Each new surge of the disease added to the urgency of the problem as well as to the question of the best solution.  Salk felt strongly that the immune system should be stimulated by a killed virus preparation, while Sabin was equally convinced that only the living virus could provide this need.  Each view had its own cadre of supporters and of opponents.

Funding issues also troubled those fighting the polio epidemics.  The March of Dimes is credited with raising a record $55 million in the fight against polio in early 1954, becoming the first major infectious disease battle to benefit from a concerted public awareness campaign and demonstrating the power of such volunteer driven efforts to supplement public and other private funding efforts.

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This book combines social history with personal memoir. It serves as a reflection on how the various challenges of living with chronic illness have shifted over time, and how they are still real and present for the increasing portion of the population who suffer from ills invisible to others and often hard to account for.  The book's brief treatments of cultural and medical approaches to chronic illness, from ancient practices to "patients in the digital age," provide a broad perspective against which to consider current legislative, political, medical, and personal concerns for those coping with chronic illness or disability. 

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

According to the editor’s introduction, this collection is based on the AMSA (American Medical Student Association) assertion that the physician must be a humanist, a communicator and an advocate as well as a scientist.  To support these and related commitments, it offers essays that demonstrate how and under what circumstances the introduction of creative arts into the lives of professional care providers and their patients and families may be achieved.  Included in some essays are general themes, while in others there are very detailed descriptions of methodology. Others utilize more standard research designs and outcomes.

What creative arts are included in the discussions?  Visual arts, drama, music, and story-telling stand out in terms of potential and, in some cases, already demonstrated applicability to a medical practice.  Some of the essays propose art forms that can be translated into a useful frame for health practitioners, artists and/or patients and their families.

Some essays include assessment of research projects or various designs of methodologies for using creative art in the medial professional education environment.  Others rely on personal experiences using the arts in the learning and teaching of skills such as communication with peers, patients, family and friends.

The volume is divided into four sections.  The first cluster of essays considers using the arts to illustrate empathy in encounters among providers and recipients of health care services.  This is demonstrated in a variety of settings as disparate as end-of-life situations and dental training programs.

The second section includes examples of drama, music and drawing as part of caring for caregivers.  Through group settings and peer support, art serves as a stress reducer for those whose work involves the highly emotional situations health professionals often encounter.

Section three explains and demonstrates the narrative reflective process, in which experiences and stories are shared among those persons involved as patients, family members and caregivers.  The special situation of interviews in pediatrics is given attention in one portion of this section.

The final section addresses the question of using art to explore troublesome issues that demand change or special attention.  Included are ethical dilemmas and the need for health professions to build bridges to the community at large.

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Summary:

Five Days at Memorial is the book length expansion  of the New York Times Sunday Magazine article that the author, a Pulitzer Prize-winning physician-journalist, published in 2009. The book, the result of years of research and literally hundreds of interviews, chronicles the five days (August 28 to September 1, 2005) during which the medical staff remaining at Memorial Hospital in New Orleans tried to care for the patients -- over a hundred of them stranded, like the staff, in a hospital without water or electricity --following the flooding wrought by Hurricane Katrina.

After an 8 page prologue, the book is divided into two sections, "Deadly Choices" (228pp, the narrative of those five days) and "Reckoning" (256pp, the legal battles over the injections of midazolam (a sedative) and morphine by some of those staff and prosecuted as homicide -- what others called "euthanasia.") "Deadly Choices" relates almost hourly the five days inside Memorial from the viewpoint of patients, patients' relatives, physicians, nurses, administrators of Memorial, Tenet (the holding company owning and running Memorial) and LifeCare -- the long-term care area within Memorial devoted to the care of terminally ill and debilitated patients -- owned by a separate company. Ethical and legal questions of triage, DNR, record-keeping, accountability, communication (primarily the failure thereof) and leadership are on almost every page. At the heart of this book, however, is the mystery of the unexplained deaths of so many patients during those five days. (On September 11, 2005, a disaster mortuary team recovered 45 bodies from many different places in Memorial, page 234). The crux of the mystery of these deaths is the manner in which nine in particular died in the beleaguered hospital on the fifth and last day when, paradoxically, relief had become real and effective and inclusive, seemingly obviating such injections.

The final pages of "Reckoning" deal with the fallout - historical, ethical, political and medical -- and current events relevant to these five days and the almost two years following. (The final verdict of not guilty -- the actual wording was "Not a true bill" since it was a grand jury declining to indict the one physician, Anna Pou, and the two nurses, Cheri Landry and Lori Budo -- was rendered on July 24, 2007). There are a map of Memorial Hospital and a cast of characters at the front of the book and extensive notes, bibliography and index at the end.

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Immortal Bird: A Family Memoir

Weber, Doron

Last Updated: Feb-10-2014
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Damon Weber's proud father, Doron, has written a searing memoir that enfolds a story of parental love and loss into a medical exposé. By the time Damon turned four, he had two open-heart surgeries to correct a congenital malformation that affected circulation to his lungs. His parents were led to believe that after the surgeries, their effervescent, sociable, academically and artistically talented son was set for life. However, as Damon turned 12, they became concerned about what his father calls "his unsprung height," his shortness of breath, and a strange protrusion in his abdomen (40). Returning to his attending physician, they were surprised that she withheld information from them about a condition known as PLE (protein-losing entropy), which can manifest months or years after the kind of surgery (Fontan) their son underwent. PLE enlarges the liver and allows proteins to leak from the intestines. Without adequate protein, Damon's body could not grow. His father worried that they might have passed the established window of opportunity to treat the complication.

The memoir, which reads like an extended eulogy to a beloved son, fuses scenes of family life with difficult medical decisions aimed at reversing the effects of PLE. However, none of the interventions succeed, leaving a heart transplant as Damon's last hope. As Weber recounts each decision leading to the transplant, he exposes flaws in the way hospital systems operate, in the way families are treated, and in the care provided by the medical team that lobbied to perform the transplant. Damon died after his transplant physician made herself scarce after misdiagnosing a post-operative complication, and an inattentive hospital staff ignored his parents' justifiable alerts to ominous symptoms. Scenes of the hospital staff waiting impatiently at the door to Damon's room to remove the machines sustaining and monitoring him, as his distraught parents say good-bye, are disturbing. When the Webers initiate a lawsuit, the transplant physician cannot locate Damon's medical records. The narrative fully absorbs Weber's sorrow and anger.

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