Showing 121 - 130 of 260 annotations tagged with the keyword "Illness Narrative/Pathography"

Summary:

This is a collection of approximately 45 pathographies-essays, memoirs, biography, autobiography, poems, and reflections on illness experiences -grouped loosely into four categories of related subject matter. These categories are: Illness and Identity: Dynamics of Self and Family; Concealing Illness, Performing Health; Agency and Advocacy; Medicine at the Margins. The majority of the pieces are written by non-health care academics about their experiences with a wide variety of illnesses. A few have been written by or with health care professionals.

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Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Poems (Sequence)

Summary:

This book consists of a series of "found poems" abstracted from transcripts of interviews that Loreen Herwaldt conducted with 24 writers who had previously published accounts of their illnesses. Dr. Herwaldt, an infectious disease specialist at the University of Iowa, began her investigation into the personal experience of illness after having read Mary Swander's Out of this World: A Journey of Healing and Reynolds Price's A Whole New Life, both of which revealed a negative dimension of medical care. These books initiated an "unexpected turn" (p. 1) in Dr. Herwaldt's life, culminating in a sabbatical year during which she interviewed a wide array of writers, intending to investigate the texture and dynamics of their experience of medical care by textual analysis of interview transcripts.

However, as a result of a further (and fortunate) insight, the author decided to abstract and arrange these texts into "found poems" that have "a concentrated emotional power that the unedited stories did not." (p. 5) Among the authors whose stories of illness appear in these poems are Arthur Frank (see The Wounded Storyteller ), Nancy Mairs (A Troubled Guest: Life and Death Stories), Richard Selzer (Raising the Dead), Oliver Sacks (A Leg to Stand On), Mary Swandler (The Desert Pilgrim: En Route to Mysticism and Miracles), and Christina Middlebrook (Seeing the Crab: A Memoir of Dying). In most cases Dr. Herwaldt has crafted two or more poems giving voice to different aspects of the subject's experience. For example, Richard McCann (pp. 82-90) speaks about loving his primary care physician, why patients can't talk to doctors, what he needs from a doctor, and being labeled as a patient with hepatitis C (cf. "The Resurrectionist").

The author includes a section on "How to Use This Book" (pp.9-20) that summarizes her experience utilizing these poems in medical education settings and provides helpful hints for teaching them.

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Cancer Vixen

Marchetto, Marisa

Last Updated: Apr-03-2008
Annotated by:
Holmes, Martha Stoddard

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Cancer Vixen is the graphic narrative of Marisa Acocella Marchetto’s eleven-month cancer experience in 2004. Marchetto, a successful forty-something cartoonist for Glamour magazine and the New Yorker, serialized Cancer Vixen in Glamour while undergoing treatment. As well as the narrative of Marchetto’s diagnosis, treatment, and remission, Cancer Vixen recounts the story of Marchetto’s romance and engagement to restaurateur Silvano Marchetto, a narrative embedded in the graphic novel despite preceding it in actual chronology. The narrative explores fears about the cancer's effect on the relationship and about the loss of the chance to be a biological mother, as well as developing the relationship between the engaged couple and between Marisa and her mother (or "(s)mother," as she calls her).

The culture of cancer is another focus, including the social dynamics of having hair during cancer treatment and thus leaving oneself open to critique for not undertaking a strong enough chemotherapy. While this New York story, full of cuisine, couture (including images of the specific shoes Marchetto wore to each chemo), and cappuccino may recall the episodes of the television show Sex in the City featuring cancer, the brightly colored frames of this “Cancer in the City” tale also engage political issues like environmental causes of cancer and the reduced survival rates of women with cancer and no insurance.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author's mission is to investigate, understand, explain, describe, and puzzle over the nature of phobias -- his own, and that of other sufferers. Allen Shawn is a composer, pianist, and teacher, and is a member of a gifted family: his brother, Wallace Shawn, is a playwright and actor; his father was William Shawn, for many years editor of the New Yorker Magazine. As a musician and academic, Allen Shawn is "successful." And yet, his life is severely limited by agoraphobia, "a restriction of activities brought about by a fear of having panic symptoms in situations in which one is far from help or escape is perceived to be difficult" (13). The author interweaves sections that summarize his extensive readings on the fight-flight reaction, evolution, brain and mind, Freud's theories on phobia--with his personal history, especially as he believes it relates to his phobia.

Shawn's descriptions of how he experiences agoraphobia are vivid and informative, detailing the situations that trigger his physiologic symptoms of panic and disconnectedness: driving on unfamiliar roads, any kind of travel that is unfamiliar, walking across or on the edge of open spaces, traveling across long bridges, being in enclosed spaces (claustrophobia). The agoraphobe, he writes, "feels at risk, as if at risk of sudden death or madness" (14). Shawn tells about what he must do in order to strike out on unfamiliar trips, that is, when he gathers up the courage to take them. He must venture up to the point where panic sets in, turn back, then on another occasion repeat the process but attempt to go further, pushing through the panic, until, one day, he can make the entire journey without turning back. Sometimes he never makes it to the desired goal.

The author points to several different factors that seem to predispose people to phobias: heredity, unconscious imitation of a phobic parent, upbringing. In his own case, in retrospect, his father showed symptoms of agoraphobia. Shawn discusses the underlying repression that was pervasive in his household -- his father carried on a long-term relationship with a woman while remaining married. Shawn's mother knew about the relationship from early on but any discussion of it was forbidden, even after it became common knowledge.

Perhaps more important in Allen Shawn's perception of repression is what happened to his twin sister, Mary, who was born with what is now considered to be autism, and mental retardation. Allen felt close to this girl, even though her behavior was unpredictable and baffling. When he was about eight years old, his parents sent her away to a special boarding school without warning Allen, or offering explanations. From then on he rarely saw her; 10 years later she was institutionalized. The family did not speak much about her and her "'exile' . . . added yet another layer of mystification to an already really mystifying atmosphere. It turned out that even in our temperate environment something extremely violent could occur" (177). Not long after that, Allen began to experience severe anxiety in certain situations.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This is another wonderful book from Dr. Sacks. The subtitle, “Tales of Music and the Brain,” is accurate: we have a charming and informative mixture of stories of patients and the neurophysiology that interprets how music is processed and performed. The book is synthetic in combining cases from his practice, other clinical reports, letters from correspondents, references to medical literature, and even Sacks’s own personal experiences with music.

Sacks finds that humans have a “propensity to music,” something “innate” in human nature, perhaps like E. O. Wilson’s biophilia. “Our auditory systems, our nervous systems,” he writes, “are indeed exquisitely tuned for music” (xi). Although humans have been involved with music for millennia, it is only in the last few decades that medical imaging (functional MRI, PET) has shown what areas of the brain are active when music is heard.

While humans routinely enjoy music, the book emphasizes unusual events and neurological patients, in short, departures from the norm. Sacks—himself a lover of music—reports on his own experiences with hallucinatory music and anhedonia (loss of pleasure) in hearing music. He describes going to hear the great baritone Dietrich Fischer-Dieskau but finding that he could not, on that day, perceive the beauty of the music. Another condition “amusia,” or loss of musical ability, can be chronic, acquired, or temporary.

Some patients have had injuries or diseases of the brain that change how music is perceived. A man hit by lightning is suddenly obsessed with piano music. Another man (who survived a brain infection) has amnesia about many things but can still make and conduct music at a professional level. The concert pianist Leon Fleisher visits Sacks to discuss his dystonia, or loss of muscle function in one hand (with implications for the brain). Rolfing and Botox helped him heal and he returned to two-handed performances.

Sacks discusses other phenomena that involve brain structures, for example, perfect pitch; persons with this ability have “exaggerated asymmetry between the volumes of the right and left planum temporale” (128). People who experience synesthesia (perceiving notes as colors) have cross activation of neurons in different areas of the brain. Professional musicians (and patients with Tourette’s) demonstrate cortical plasticity, that is they have expanded areas of the brain for particular uses. Children with Williams syndrome have brains influenced by a microdeletion of genes on one chromosome; they have some cognitive deficits and also a great responsiveness to music. For some conditions, the brain determines all; for others, behavior components are also important.


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Annotated by:
Duffin, Jacalyn

Primary Category: Visual Arts / Painting/Drawing

Genre: Art with Commentary

Summary:

The basis for this autobiographical essay on the experience of having a malignancy are 92 illustrations, all the work of the author; they include 32 ink or woodcut sketches, 24 charcoal drawings, and many acrylic paintings (16 in full colour). Pope's images evoke the dependence, fear, loneliness, pain, and even the mutilation surrounding cancer illness and therapy.

He describes in plain language the course of his own illness, diagnosis, and treatment; he also relates the experiences of a few fellow patients. Most intriguing is his ready description of the stories behind his pictures: who posed, how he painted them, and what exactly he was trying to convey. When the book was published, Pope was in a hard-won remission from Hodgkin's Disease, but he died the following year of treatment-induced bone marrow failure.

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Annotated by:
Duffin, Jacalyn

Primary Category: Visual Arts / Visual Arts

Genre: Mixed

Summary:

The basis for this autobiographical essay on the experience of having a malignancy are 92 illustrations, all the work of the author; they include 32 ink or woodcut sketches, 24 charcoal drawings, and many acrylic paintings (16 in full colour). Pope's images evoke the dependence, fear, loneliness, pain, and even the mutilation surrounding cancer illness and therapy.

He describes in plain language the course of his own illness, diagnosis, and treatment; he also relates the experiences of a few fellow patients. Most intriguing is his ready description of the stories behind his pictures: who posed, how he painted them, and what exactly he was trying to convey. When the book was published, Pope was in a hard-won remission from Hodgkin's Disease, but he died the following year of treatment-induced bone marrow failure.

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Summary:

Janis Caldwell, who practiced emergency medicine for five years before getting her Ph.D. in English, examines the philosophy and practice of nineteenth-century British literature and medicine in this book. In an erudite introduction, she explains what she means by the "double vision" of "Romantic materialism," "Romantic because [physicians and authors] were concerned with consciousness and self-expression, and materialist because they placed a particularly high value on what natural philosophy was telling them about the material world" (1). These writers' intellectual context, influenced by natural theology, was dualist, including both the Book of Scripture and the Book of Nature. Their methodology "tacked back and forth between physical evidence and inner, imaginative understanding" (1), giving rise to the two-part "history and physical exam" familiar to physicians today.

The book examines this dual hermeneutic in six influential sites over the course of the century. In Chapter Two, Caldwell reads early-nineteenth-century debates over vitalism in the context of Mary Shelley's Frankenstein, arguing against the materialist-spiritualist divide so often cited in that period. She also brings readings of the novel into line with contemporary theories of physiologic sympathy. Next, she turns to the enormously influential sage Thomas Carlyle, arguing that he broadens the body/soul model to include both natural and supernatural aspects of the world. Again rejecting the notion of a philosophical dualism that prohibits mixing differing approaches, she argues, both Carlyle and the anatomist Richard Owen enthusiastically endorse a more heterodox vision of the world, in which we learn from both natural and spiritual enquiry.

The fourth chapter reads Emily Brontë's Wuthering Heights in the context of contemporary popular treatises on children's health and child-rearing. Caldwell argues that Brontë's image of the Romantic child, as emblematized in Cathy and Heathcliff, and characterized as "a more social, empirical, physical, literal version of childhood," derives in part from the "domestic medical texts which function as a sort of secular scripture in the Brontë household" (74). She suggests that the dualist language of natural theology, which combined spiritual and natural interpretation, and which was well-known in the Bronte household, influenced Emily's mixture of religious and medical concepts in her portrait of Romantic childhood.

Chapter Five contrasts Emily Brontë's version of childhood to that of her sister, Charlotte Bronte, in Jane Eyre and Villette. Charlotte Brontë, argues Caldwell, inclines more to the professional version of medicine, less suspicious of physician authority and more likely to experiment (in her fiction) with alternative medical theories such as phrenology. In an extended discussion of theories of literalization and metaphor, using Ricoeur to argue that the literalization of a metaphor returns us to the fact but also reinvigorates the metaphor through its dissonance with the fact. Caldwell proposes that the supposed "coarseness" of Brontë's novels is linked to her use of literalization.

A chapter on Darwin posits that "Darwin's thought arises directly out of ... Romantic materialism" (117). Although by the end of his life Darwin had renounced literary reading, the "dialectic of Romantic materialism" (shaped by Romantic literature as well as science) appears in "Darwin's preferred scientific method," in his rhetoric, and in the narrative structure of his scientific autobiography (123-24).

Caldwell's final chapter provides a significant new reading of the genre of the medical case history, by studying George Eliot's Middlemarch in the light of the bipartite structure of "the patient's narrative and the physical exam" (143). Emphasizing the negotiations between doctors and patients in the mid-nineteenth century, and calling for similar negotiations today, Caldwell navigates the differing critical positions on George Eliot's novel, weighing whether the narrator "participates in the systematic, totalizing knowledge of the pathologist" or undercuts that knowledge (156). Caldwell concludes that the narrator of Middlemarch practices a "hermeneutic circling" that shuttles back and forth between incommensurate perspectives, part and whole, nature and spirit, seeking "a partial and provisional, rather than absolute or positive, knowledge" (160). The book ends with a call to return the term "clinical" to its full meaning, not just of detachment, but of engaged practice.

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Annotated by:
Kennedy, Meegan

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

This book could perhaps have been called "Pathology and Identity in the Medical Case History and the British Novel." Tougaw here examines the mutual fascination of both nineteenth-century medicine and the British novel with pathology: that both "novels and case histories require a suffering body at narrative's center" (8), and that both "put into circulation a model of identity whereby the subject is always caught in a double bind... between health and pathology" (9). He examines developments in the medical case history, as a narrative, and argues that both this and the novel permitted an escape from "the nineteenth-century zeal for classification" (2). He reads the doctor-patient relationship as analogous to the reader-novel relationship, and argues that both genres must balance competing modes of approach: diagnosis and sympathy.

The book focuses on "controversial or marginalized maladies" (18), with each chapter acting as, itself, a case study. The first chapter, however, sets up Tougaw's critical terms of diagnostic and sympathetic reading, alternatives that help readers negotiate their discomfort with controversial conditions. The second chapter examines how the rhetoric of disability helps provide cover for "scientific scrutiny" (19) in cases of breast cancer, which bring to the foreground concerns over the limits and gendering of privacy and the body. Chapter Three builds on Peter Logan's work on the nervous narrator, examining Jane Austen's use of indirect discourse to finesse questions of hypochondria, compulsive storytelling, and early-nineteenth-century medical knowledge.

The fourth chapter focuses on the mid-century debate over mesmerism and anesthesia, reading cases alongside relevant novels by Wilkie Collins, Sheridan Le Fanu, Robert Louis Stevenson, and Mary Elizabeth Braddon. It traces Victorians' interest in altered consciousness and the effects of drugs on agency, and it argues for an analogy between the intersubjective relations of mesmerist/subject, doctor/patient, and narrator/reader. The final chapter reads Freud's "Rat Man" and "Wolf Man" against three novels by William James. Tougaw sees both these authors as putting forward a complex epistemology based on interpretation and intersubjectivity rather than assertion or individuality. The Afterword reframes Tougaw's arguments in the context of contemporary debates over the doctor-patient relation and the patient narrative; that "the real work of autobiography is the establishment of an intersubjective rapport between writer and reader" (21).

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Summary:

In 1999, eighteen years after Project HOPE began publishing the journal "Health Affairs," the founding editor, John Iglehart, began a new column: Narrative Matters. This book contains 46 of the 80 essays published to date, and an inspiring foreword by Abraham Verghese. The essays are contained in eight chapters-- "Writing to Change Things: Essays on the Policy Narrative," "Dollars and Sense: Hard Financial Realities," "Bearing Witness: Patient's Stories," "The Maddening System: Frustrations and Solutions," "Trouble in the Ranks: Professional Problems," "Drug Resistance: Battling Undue Influences," "Disparity Dilemmas: Stories on Race and Ethnicity," and "Values and Choice: Stories of Practical Ethics." Familiar voices include those of Fitzhugh Mullan (one of the editors), Abigail Zuger, Howard Brody, Richard Lamm, John Lantos, Danielle Ofri, and Carol Levine. The essays in the first section strike an important cautionary tone, reminding readers that the plural of anecdote too often is taken for policy and that the repetition of anecdote should not be seen as evidence.

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