Showing 21 - 30 of 264 annotations tagged with the keyword "Illness Narrative/Pathography"

Summary:

This monograph is an important contribution—along with the Health Humanities Reader (2014)—to the burgeoning field of health humanities, a new academic field and the presumed replacement for (and expansion of) medical humanities. While the medical humanities included philosophy, literature, religion, and history, health humanities includes many more disciplines, and the creative arts.
This book is dense with theory and abstraction, but it imaginatively and intelligently promotes the notion that health is a larger and more useful concept than disease, which dominates and limits standard medicine. 

Five authors are listed for the book as a whole; none are attributed specifically to any of the eight chapters.
 
The first chapter “Health Humanities” promotes health humanities as an expansion of medical humanities to include more people (including unpaid caregivers and patients), social and national well-being, and the arts, such as dance, music, and visual art. We need to consider wider ranges of meaning, agency, and patients’ varying life stories. Unpaid caregivers have been neglected, even though “the majority of healthcare as it is practiced, is nonmedical” (p. 13). Medicine per se has been too science-based and too disease oriented, but critical theory and the arts can be “enabler[s] of health and well-being” (p. 19) with many applications to hospitals, clinics, homes, and neighborhoods.

“Anthropology and the Study of Culture” describes a wide range of inquiry, both worldwide and throughout human time, including rituals, conceptions of disease, health, death, and impacts for patients. Some cultures believe in spirit possession. The Chinese have worked with qi (life energy) for millennia. Cultural studies look at popular media, spiritual perspectives, also local and subcultural values.
 
“Applied Literature” discusses pathographies, including mental illness (for example, self-harm); it reviews concepts from Rita Charon and describes how reading groups can promote well-being. Literature expands our understanding of humans well beyond the biomedical gaze. Closely related, “Narrative and Applied Linguistics” reviews notions from Osler, Barthes, Bruner, Propp, Frank, and others. Patients want, beyond technical expertise, healthcare personnel who will help them co-create an enabling narrative. New techniques in linguistics include analysis of a corpus of usage, for example, teen language, thereby gaining approaches to young patients who cut themselves.

At 23 pages, the longest chapter is “Performing Arts and the Aesthetics of Health.” It posits that all arts are uniquely human because they are relational, aesthetic, and temporal (with time in a kairos sense, not just chronos). The arts fit into health practices, which also share the same three qualities. The arts promote coherence, agency, communication, expression, and social wellbeing, traits that are described specifically in music, dance, and drama. Similarly, the next chapter “Visual Art and Transformation,” promotes this particular art, whether elitist or popular, as communicative and transformative. The making of art can be healing. 

“Practice Based Evidence: Delivering Humanities into Healthcare” argues against Evidence Based Practice and its limitations. Instead of Randomized Controlled Trials, smaller, more qualitative studies may be more accurate and useful. Practice Based Evidence (and feminist and postmodern approaches) all create wider and deeper notions of validity.

“Creative Practice as Mutual Recovery” suggests that caregivers, whether professional or lay, also find healing as they deliver care.

In “Concluding Remarks” we read, again, that  “the majority of health care and the generation of health and well-being is non-medical” (p. 153). Medicine and medical humanities are “too narrow a bandwidth,” but health humanities can support all caregivers, various institutions (including schools), self-care, and complementary medicine.   

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

The therapeutic benefits of music are well known, but the theory that music might be harmful to our health, unless it is so obviously loud it injures our eardrums, comes as a surprise.  In this volume, historian of medicine James Kennaway traces the idea of pathological music from antiquity to the present.  The book’s introduction considers whether music really can create illness, whether it be of a physiological or a psychological nature.  We learn, for example, of arrhythmias and seizure disorders that are set off by music, not to mention the so-called Stendhal Syndrome, a psychosomatic reaction to great works of art.

The second chapter describes how, during the 18th century, disease was thought to result from excessive stimulation of the nerves, and how that created a theoretical framework for the “medical dangers of music” (p. 23) as being rooted in the nervous system. The example of the glass harmonica is given. This musical instrument, invented by Benjamin Franklin, had its status elevated when Mozart composed two pieces for it.  However, its success became its undoing, as it was feared the tones would “make women faint, send a dog into convulsions, [and] make a sleeping girl wake screaming through a chord of the diminished seventh” (p. 45). Special gloves were devised so that a performer might, by avoiding direct contact with the apparatus, spare his nerves. 

In the following chapter, Kennaway explores how Wagner dominated 19th-century discourse on pathological music in that his work’s eroticism and novel harmonies were thought to produce neurasthenia (a popular catch-all term for an array of anxiety disorders). Listeners were brought to an unhealthy state of ecstasy, and singers, being driven to the abyss, went insane. Women who had recklessly allowed themselves to become “Wagnerized” were punished with a “lack [of] children, or, in the most bearable cases, men” (p. 74).

Moving into the 20th century, the author describes how ideas about pathological music acquired a political connotation.  In Germany, the perceived threat of avant-garde Jewish composers (eg. Schoenberg) to public health culminated in the so-called Degenerate Music exhibition of 1938. And in  the United States, African American-influenced jazz was credited with the power to “change human physiology, damaging the medulla in the brain” (p. 121).

Finally, the book concludes in the present day with music for brainwashing (e.g. a consideration of whether subliminal messages hidden in rock songs could lead to suicide), and the use of painfully loud or abrasive music as sonic weapons in warfare, or for torture.  The author’s verdict is that the notion of music as bad for your health, though emerging in new forms, is more topical than ever.

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Tithonus

Tennyson, Alfred

Last Updated: Jul-28-2016
Annotated by:
Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Tithonus” is a dramatic monologue that imagines the once handsome, magnificent Trojan prince to be well-advanced in an unfortunate state brought about by negligent gods and his own lack of foresight.  Exultant over the blessings of his youth, he’d asked Aurora, goddess of the dawn, for eternal life, and she had obtained Zeus’s permission to grant the request.  But Tithonus had failed to ask for eternal youth with his immortality—and neither Aurora nor Zeus had managed to recognize that this feature of the request might be important—so that Tithonus spends eternity growing increasingly decrepit.  In Tennyson’s poem, Tithonus addresses Aurora, hoping he might persuade her to reassign him his mortal status and allow him to die.

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Annotated by:
Glass, Guy

Primary Category: Literature / Plays

Genre: Essay

Summary:

This is a collection of essays by (mostly British) artists, performers, and academics on the intersection between medicine and theater.  It appears in a series entitled “Performance and Science: Interdisciplinary Dialogues” put out by Bloomsbury Methuen Drama.  The introduction makes it clear there are many points of convergence beyond the scope of this volume, such as how medicine is depicted in plays and therapeutic uses of theater (e.g. drama therapy).  The focus here, then, is on “the ways in which the body is understood, displayed and represented in performance” (p. 11).  And the “medical body” of the title refers to one that is ’acted upon’ by illness or disability and/or by the diagnostic and therapeutic activities of the medical profession” (Ibid).  

The book is divided into three sections: “Performing the Medical,” “Performing Patients,” and “Performing Body Parts.”  The first section includes an essay by Roger Kneebone, a surgeon, who explores the parallels between his field and theatrical performance.  Kneebone has devised simulations that enable laypersons to get a sense of what it is like to participate in surgery.  In his view, this encourages cross-fertilization of ideas.  For example, his collaboration with a jazz pianist has demonstrated to him that musical improvisation, in its spontaneity, is somewhat like emergency surgery.  And his work with a choreographer led to the development of a dance piece depicting the movements of a surgical team during a procedure.   
 

In the second section we read about Brian Lobel, a theater artist who has used his experience with testicular cancer to create a solo performance piece entitled “BALL.”  This not only allowed Lobel to “regain a sense of mastery over the illness experience” (p. 88), but has also earned him a niche within the theater community.  Lobel now works with other cancer sufferers helping them develop their own narratives in a project called “Fun with Cancer Patients.”  

The final section of the book includes a description of “Under Glass,” a forty-minute performance piece consisting of eight specimen jars each containing a solo performer, said to be “at once museum exhibit, gallery and medical laboratory” (p. 141), which also provides the book's front cover image. "Under Glass" was devised by Clod Ensemble, whose Performing Medicine project is known for its teaching programs in numerous London medical schools.  Meant to provoke discourse about the public display of specimens, it brings to mind the Victorian “freak show” as well as the more recent controversial touring Body Worlds exhibition of plastinated cadavers and body parts.

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When Breath Becomes Air

Kalanithi, Paul

Last Updated: Feb-18-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Paul Kalanithi, diagnosed with stage IV metastatic lung cancer when he was a neurosurgery resident at Stanford University, was faced with a decision. Should he truncate his career in neurosurgery in order to become a writer - a career he had always envisioned for himself after completing a couple of decades of neurosurgery practice? Married to Lucy Kalanithi, an internist he had met in medical school, Paul’s career and future had looked bright and promising. But as he entered his final year of a seven-year residency, symptoms of excruciating back pain and significant weight loss began. Garbed in a hospital gown, he examines his own CT scan – this is how we meet Paul at the beginning of the Prologue. He then writes of the relatively brief period of misdiagnosis prior to the CT scan. With the initial negative plain x-rays, he is started on nonsteroidal anti-inflammatory drugs. But breakthrough pain and continued weight loss leads to the CT. Paul the physician understands the death sentence the images portend; Paul the patient is just beginning his journey. The diagnosis and treatment cause him to reassess his decisions about his life, to decide to father a child even though he knows he will never see the child grow up, and ultimately to write a memoir, essentially for his daughter.

Paul had graduated from Stanford with undergraduate and master’s degrees which reflected his dual love of literature and science. He combined these in a second master’s degree from Cambridge University in the history and philosophy of science and medicine before attending Yale for his medical degree. He and his wife return to California for residencies. The book is largely a blend of his dual interests: a deep and abiding love and faith in literature and how words can reveal truths, and a passion for the practice and science of neurosurgery. The rupture of fatal illness into his life interrupts his dogged trajectory towards an academic medical career, and, like all ruptures, confounds expectations and reorients priorities.

The book has five parts: a foreword by physician-writer Abraham Verghese, who notes the stunning prose Paul produced for an initial article in The New York Times and exhorts the reader to “Listen to Paul” (page xix); a brief prologue; two parts by Paul Kalanithi (Part I: In Perfect Health I Begin, and Part II: Cease Not till Death); and a stunning, heart-breaking epilogue by Lucy Kalanithi. In the epilogue, written with as many literary references and allusions as her husband’s writing includes, Lucy provides the reader with a gentle and loving portrait of her husband in his final days, reaffirms his joy in their daughter Cady, and chronicles how she kept her promise to her dying husband to shepherd his manuscript into print.

The bulk of the book is memoir – a childhood in Arizona and an aversion to pursuing a life in medicine due to his hard-working cardiologist-father, experiences at Stanford which eventually led him to reverse his decision to avoid a medical career, the stages of his medical career and caring for patients, and his devastating cancer. Though initially responsive to treatment—and indeed, the treatment enables him to complete his residency and decide to father a child with Lucy—the cancer is, as prognosticated from the diagnosis, fatal.

What makes this memoir so much more than an exercise in memory and a tribute to the herculean effort to write while sapped by cancer and its treatment, are the philosophical turns, the clear love of words and literature, and the poignancy of the writing. He begins reading fiction and nonfiction again: “I was searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again. The privilege of direct experience had led me away from literary and academic work, yet now I felt that to understand my own direct experiences, I would have to translate them back into language…I needed words to go forward.” (pp 148-9) Paul’s writing ends with what is arguably some of the most poetic prose ever written. He concludes by speaking directly to his infant daughter: “When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.” (p. 199)

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.
           

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.
           

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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Skin for Ricky

Schiedermayer, David

Last Updated: Dec-10-2015
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The physician-narrator is looking in on a 30 year old patient named Ricky. Readers immediately learn that the patient has cerebral palsy: his ear mashed flat, his neck contorted into a tight C, almost quadriplegic. These first stanza clinical observations are indisputable. The narrator then shifts from the medical facts to more subjective thoughts ranging from Ricky’s previous treatment responses and medications to Ricky’s adult heterosexual response to the proximity of a female, and finally to the narrator’s own wishes for this patient. Ricky’s parents, the narrator notes, have similarly but uncomfortably witnessed their son’s ogling response to a pretty nurse or doctor or a provocative adult television image. The parents’ response, he notes, to these observations has been to redirect Ricky’s focus by switching the channel to Nickelodeon, a program geared towards children.  Not unlike situations in several writings by William Carlos Williams, this physician has moved from objective medical information to his own interior thoughts about Ricky’s circumstances and confinement.  Rather than sticking with the facts associated with the patient’s medical condition, he wonders, imagines, and expresses in this poem seemingly un-doctorly thoughts. 

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An Unquiet Mind

Jamison, Kay Redfield

Last Updated: Oct-06-2015
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author, Professor of Psychiatry at Johns Hopkins University School of Medicine, is an authority on manic depressive illness. With this powerful, well-written memoir she "came out of the closet," publicly declaring that she herself had suffered from manic depressive illness for years. Jamison describes the manifestations of her illness, her initial denial and resistance to treatment with medication, attempted suicide, and her struggle to maintain an active professional and satisfying personal life.The author was "intensely emotional as a child," (p.4) and in high school first experienced "a light lovely tincture of true mania" (p.37) during which she felt marvelous, but following which she was unable to concentrate or comprehend, felt exhausted, preoccupied with death, and frightened. (pp. 36-40) Interested in medicine as an adolescent, she pursued her goal in spite of mood swings and periods of mental paralysis. Jamison completed graduate work in clinical psychology; shortly after obtaining a faculty appointment "I was manic beyond recognition and just beginning a long, costly personal war against a medication that I would, in a few year’s time, be strongly encouraging others to take [lithium]." (p. 4)Jamison eventually, through strong support from friends and colleagues, excellent psychiatric care, and her own acceptance of illness, has been able to reach a state of relative equilibrium--tolerable levels of medication (fewer side effects) and dampened mood swings. But she makes clear that she must stay on lithium and remain vigilant.

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What the Body Told

Campo, Rafael

Last Updated: Oct-06-2015
Annotated by:
Terry, James

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Many of these poems are confessional accounts of gay love and sexuality. Another group clearly draw on the author’s clinical experiences as a physician. A few poems (e.g. "For You All Beauty", "Her Final Show") mix those broad categories in talking about the care of AIDS patients.The 11 short poems under the sequence title "Ten Patients, and Another" are the most clinical. They mimic clinical presentations during rounds in several ways: individual poems under patient initials--Mrs. G, John Doe; opening lines with the patient’s age, race, and gender; even presenting complaints with hospital shorthand. For example, in "Kelly" Campo begins: "The patient is a twelve-year-old white female. / She’s gravida zero, no STD’s. / She’s never even had a pelvic. One / month nausea and vomiting. No change / in bowel habits. No fever, chills, malaise." But in this poem and others of the sequence, the clinical gradually turns to the personal: "Her pelvic was remarkable for scars / At six o’clock, no hymen visible, / Some uterine enlargement. Pregnancy / Tests positive times two. She says it was / Her dad. He’s sitting in the waiting room."The cumulative effect of the series is a kind of horror at hospital cases and how they get there: a three-year-old who’s ingested cocaine, a homeless man with eyelids frozen shut, one man beaten, another man shot, an abused wife, a suicide, a drug overdose. To feel empathy for these cases, and to turn them into poetry, Campo has practiced the art of medicine as a form of love.Campo also writes as a patient who has experienced a serious arm fracture and subsequent threat of cancer in the 16-poem sequence "Song Before Dying." This changes his perspective on care-giving, as he writes in "IX. The Very Self." " . . . more dying waits / Downstairs for me. I almost hear their groans. / Same hunger, bones. Same face we all consumed. / As I examine them, I find the tomb / Toward which they lead. I know it is my own."

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Welcome to Cancerland

Ehrenreich, Barbara

Last Updated: Sep-28-2015
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

A “drive-by mammogram” leads the writer, Barbara, to a biopsy of a suspicious breast lump. She awakes from the fog of anesthesia to hear the surgeon’s bland remark: “Unfortunately, there is a cancer.” Welcome to Cancerland, a place where her identity is displaced by the vast implications of the diagnosis, another operation, and arduous months of chemotherapy. What works for her own peace of mind has little to do with the trappings of pink-ribbon sentimentalism in the survivors groups.

Barbara resorts to her knowledge of cell biology, asks to see her own tumor under the microscope, and contemplates the meaning of visualizing the malignant cells even if she does not believe the exercise can help her. She dissects the rank commercialism and denial in the survivor movement: let me die of “anything but the sticky sentimentalism in that Teddy Bear.” She decries the claims that cancer therapy makes better skin, better hair, and better people, with better bodies, especially when an implant on one side subtends a cosmetic procedure on the other.

Posting these thoughts on a chat line, she discovers that most women berate her attitude and suggest she needs a psychiatrist. But one dying woman agrees with her distress, and writes of having cancer, “IT IS NOT OK.” Admitting feminists can be found in the “survivor” community, Barbara faults its underlying tone for being coercively optimistic, infantilizing, and insulting to the dying and the dead. She is angry. Very angry, and her “purifying rage” spares no one: doctors, support groups, feminists, drug companies, and the Cancer Society. Nevertheless--and in keeping with her earlier work--she credits the women’s movement with helping to rid the world of three medical evils: the radical Halsted mastectomy, the practice of proceeding to mastectomy from biopsy without waking up the patient, and high dose chemotherapy.

Two disturbing ironies bring the essay to a close. The first, is the possibility that mammograms may not be saving or even prolonging lives, even as they detect cancers; they make women dwell in Cancerland for longer and cause too many “unnecessary” biopsies. The mammogram is a ritual, she says. The second irony lies in the role of the pharmaceutical industry which fosters the pink power movement –the ribbons, the teddy bears, the marathons-- while manufacturing the expensive poisons that seem to have anticancer side effects. These same companies, she argues, have also manufactured carcinogenic pesticides that pollute the environment. Having profitably poisoned women into having breast cancers, they continue to profit from poisons of chemotherapy.
She faults both the “cult” of the survivors movement and the American Cancer Society for their “unquestioning faith” in these imperfect instruments of action.

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