Showing 31 - 40 of 285 annotations tagged with the keyword "Illness Narrative/Pathography"

Dying: A Memoir

Taylor, Cory

Last Updated: Aug-21-2017

Primary Category: Literature / Nonfiction

Genre: Memoir


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

The book has three parts. Part I, Cold Feet, starts right off discussing a euthanasia drug purchased online from China. Taylor’s melanoma has metastasized to many parts of her body, including her brain. It was first diagnosed in 2005, a malignant mole behind her right knee. In the decade of her cancer, she has tried three drug trials, thought about suicide, and received palliative care. She has harsh words for doctors who don’t mention death, a psychologist who doesn’t help her “Adjustment disorder,” and medicine in general that sees death as a failure.      
Taylor feels anger, sadness, and loneliness. She finds comfort and camaraderie in a group called Exit, where there’s frank discussion about death. She writes, “We’re like the last survivors on a sinking ship, huddled together for warmth” (p. 14). She has neither religious training nor interest in it. She became a writer late in life, and now she sees a clear purpose for her “final book.” She writes, “I am making a shape for my death, so that I, and others can see it clearly. And I am making it bearable for myself” (p. 31).  

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

Part II, Dust and Ashes, describes her earlier life with her mother and father. Her parents were unhappy together and eventually divorced. In her life review, Taylor searches for meaning in the influences on her life. Her family moved often in Australia, also to Fiji and Africa. She feels rootless herself, traveling to England and Japan. Both of her parents die with dementia; she was with neither one at their ends.  
Part III, Endings and Beginnings, goes further back to her childhood. She reflects on an idyllic time in Fiji, her discovery of the power of language and writing, and various trials of growing up. She worries that she wasn’t vigilant enough in checking her skin, thereby allowing her disease to become fatal. She feels autonomy in having the Chinese euthanasia drug, but her life is clearly closing in. She says she weighs less than her neighbor’s dog. The last page of the book imagines her death as a cinematic montage, ending with “Fade to black” (p. 141).  

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Primary Category: Literature / Nonfiction

Genre: Graphic Memoir


In-Between Days: A Memoir about Living with Cancer is an accurate and suggestive title. At 37, Teva Harrison was diagnosed with Stage IV breast cancer with metastases to her bones. She lives between hopes for new treatments allowing a useful life but also fears about debility—some already caused by her treatments—and death. An artist, she has created a hybrid of a graphic novel with comic-book style drawing on the left page and traditional prose facing on the right, with variations of this format now and then.     
The imaginative world of the book ranges widely in mood, topic, and subject matter, and there is a helpful organization to group the material.
Her Preface tells us how drawing helped her gain some power over “the bogeyman that is my cancer” (p. 1). In her Prologue, she tells of “living in the shadows,” or “liminal spaces,” but choosing to occupy these as best she can (p. 3).            

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

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

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Annotated by:
Glass, Guy

Primary Category: Literature / Poetry

Genre: Biography


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

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

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

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Annotated by:
Glass, Guy

Primary Category: Literature / Literature

Genre: Memoir


James Rhodes is a British classical concert pianist who is known for his iconoclastic, pop-inspired performing style.  He is also an outspoken survivor of childhood sexual abuse who is equally frank about his struggles with severe mental illness. Rhodes’s memoir Instrumental is a tribute to the healing power of music.  Indeed, music quite literally saves the author’s life; it is only when a friend smuggles an iPod loaded with Bach into his psych ward that Rhodes regains the will to live.   

Rhodes does not mince words.  We learn that he was violently raped by a gym teacher on a regular basis for five years from the age of five. Left with severe internal injuries that produce wracking pain, he requires multiple surgeries.  He soon also develops dissociative symptoms, drug and alcohol addiction, self-injurious behaviors, and chronic suicidal ideation. Barely able to function, he endures many tumultuous years during which he abandons the piano.  The author’s subsequent journey from physical and emotional fragmentation to wholeness through music provides the substance of his book.

The preface to Instrumental is designated “Prelude,” and the ensuing twenty chapters, labeled “tracks,” all correspond to musical works.  (All twenty tracks may be listened to, for free, on Spotify.) In addition, as if to assure the reader he is in good company, Rhodes offers psychological profiles of famous composers.  We learn, for example, that Bruckner suffered from a morbid obsession with numbers, and that Schumann, after throwing himself in the Rhine, died in an asylum.  

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The Fall

Singh, Tarsem

Last Updated: May-04-2017
Annotated by:
Clark, Mark

Primary Category: Performing Arts / Film, TV, Video

Genre: Film


This film focuses on the interaction between 5-year-old Alexandria and Roy, a Hollywood stuntman in the early days of film.  The two are residents of a rehabilitation hospital, and both are recovering from falls they’ve taken: he’s paralyzed from the waist down as a result of a failed stunt; she’s broken her humerus as the result of a fall she’s taken in an orange orchard.  (A child in a migrant family, she’s been tasked, at 5 years of age—presumably out of economic necessity—with climbing ladders to pick oranges.)  Having accidentally intercepted an affectionate note—Alexandria’s child-missive—meant for the kindly but preoccupied nurse Evelyn, paralyzed Roy befriends the girl and quickly wins her over by telling her the wondrous tale of a masked bandit and his companions, all of whom have been betrayed by the evil emperor Odious, and all of whom are united in their quest for vengeance against the ruler.  While Roy narrates the story, we see it take place through Alexandria’s eyes, and the characters she envisions are drawn from people in her life.  The role of the heroic masked bandit she assigns to Roy himself, blended to a poignant degree with her deceased father.  Alexandria sometimes interrupts and asks questions about or challenges the story’s development, whereupon Roy makes adjustments: it’s clear that the story is a co-constructed project.  Roy has, however, become increasingly despondent over his paralyzed condition and over the fact that his fiancée has broken off the engagement as a result of Roy’s condition.  As time goes on, Roy uses his unfolding story as a means of manipulating Alexandria to retrieve morphine from the hospital dispensary.  He tries and fails to commit suicide with the pills that Alexandria supplies.  In the process, he winds up bringing about a severe injury to the child.  Filled with remorse and guilt, Roy alters his story such that it can be a source of separation between him and the girl: it becomes cruel and violent, and suggests that the hero is a weak, inglorious imposter who deserves to die.  The anguished Alexandria protests, demanding that Roy change the story.  Roy refuses, insisting that “It’s my story.”  But Alexandria retorts, “It’s mine, too.”  And Roy relents.  The masked bandit of the story is redeemed, and Roy himself is as well.  The film closes first with Roy, Alexandria, the hospital patients and staff watching the film in which Roy’s acting had led to his accident.  As the scene approaches the point where the accident had occurred, Roy feels understandable anxiety; but the film has of course been edited.  Roy is relieved, but turns to Alexandria, in the hopes that she is not terrified.  He finds her beaming.  Then the film we are watching, The Fall, shifts to a rapid series of black-and-white footage of stunts—the effect is reminiscent of the love scenes gathered at the end of Cinema Paradiso—narrated by the marveling Alexandria.  Each clip features a person in imminent, catastrophic danger—who is then impossibly rescued at the last second by fortunate chance.  As Alexandria blows us kisses through a character who is falling backward, we are left in a state of bewildered gratitude over this strange gift of stories we human beings offer each other—stories that assure us over and over again how, confronted with the calamities we see no way of escaping, we are nonetheless saved. 

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Annotated by:
Mathiasen, Helle

Primary Category: Literature / Nonfiction

Genre: Memoir


A rare patient narrative from 1812 describes a mastectomy performed before the introduction of anesthesia. This letter from Frances d'Arblay (1752-1840) (née Frances [Fanny] Burney), addressed to her older sister, Esther, details her operation in Paris by one of Napoleon's surgeons.In her childhood and youth, Fanny Burney moved in the best London society; she was a friend of Dr. Johnson who admired her. She served five years at the court of George III and Queen Charlotte as Second Keeper of the Royal Robes (1786-1791). Fanny Burney married Adjutant-General in the army of Louis XVI Alexandre-Jean-Baptiste Piochard d'Arblay in 1793. He had fled to England after the Revolution. They lived in England and spent ten years in France (1802-1812).Burney's mastectomy took place 30 September 1811. The patient wrote about her experience nine months later. She chronicles the origin of her tumor and her pain. She is constantly watched by "The most sympathising of Partners" (128), her husband, who arranges for her to see a doctor. She warns her sister and nieces not to wait as long as she did. At first resisting out of fear, the patient agrees to see Baron Dominique-Jean Larrey (1766-1842), First Surgeon to the Imperial Guard.He asks for her written consent to guide her treatment; her four doctors request her formal consent to the operation, and she makes arrangements to keep her son, Alex, and her husband, M. d'Arblay, away. Her husband arranges for linen and bandages, she makes her will, and writes farewell letters to her son and spouse. A doctor gives her a wine cordial, the only anesthetic she receives. Waiting for all the doctors to arrive causes her agony, but at three o'clock, "my room, without previous message, was entered by 7 Men in black" (136).She sees "the glitter of polished Steel" (138). The extreme pain of the surgery makes her scream; she feels the knife scraping her breastbone. The doctors lift her up to put her to bed "& I then saw my good Dr. Larry, pale nearly as myself, his face streaked with blood, & its expression depicting grief, apprehension, & almost horrour" (140).Her husband adds a few lines. These are followed by a medical report in French by Baron Larrey's 'Chief Pupil'. He states that the operation to remove the right breast at 3:45pm and that the patient showed "un Grand courage" (141). She lives another twenty-nine years. It is impossible to determine whether her tumor was malignant.

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Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism


The Renewal of Generosity: Illness, Medicine, and How to Live contemplates the phenomenon of generosity as it is realized in the stories of physicians and patients.  For Arthur Frank, generosity is grounded in the willingness of people to give themselves over to dialogical processes of communication wherein participants best realize themselves through relational engagement: generous, dialogical communication leads to a renewal and realization of human being. Health care systems today tend to impede communicative generosity, however, and the result is a de-humanization and de-moralization of both physicians and patients.  As a remedy, Frank proposes, first, that we re-figure our conceptualization of the physician-patient relationship—from the economic or business metaphor of “provider” and “client,” we should turn to the metaphorical conceptualization of “host” and “guest,” which clearly has implications for manner of treatment and communication that occurs in the relationship.  In addition, Frank turns to and thinks with stories of physicians and stories of the ill to reflect on the ways that generosity is realized.  Drawing on the wisdom of the striking philosophical triumvirate of Marcus Aurelius (Stoicism), Mikhail Bakhtin (Dialogism), and Emmanuel Levinas  to amplify the reflections emerging from the physician and patient stories, Frank ultimately proposes “exercises” for training to generate a vivifying generosity within the medical profession, which can in turn lead to a re-humanization and re-moralization for physicians, improved care for patients, and enhanced flourishing for all.

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Andrew Schulman is a New York guitarist with a long history of playing in hotels, restaurants, small groups, and formal concerts—even in Carnegie Hall, the White House, and Royal Albert Hall. His memoir describes his experience as a patient in a Surgical Intensive Care Unit (SICU), where he was briefly clinically dead. Six months later he began a part-time career as a guitarist playing for patients and staff in that very same SICU. 
In July of 2009, Schulman underwent surgery for a pancreatic tumor (luckily benign) but crashed afterward. He suffered cardiac arrest and shortage of blood to his brain for 17 minutes. Doctors induced a week-long medical coma, but his condition worsened. His wife asked if he could hear music; he had brought a prepared iPod. When the opening chorus of Bach’s St. Matthew Passion played in his earbud, the computer monitor showed that his vital signs stabilized, and he survived. The nurses called it a miracle.

Convinced of music’s healing power, Schulman proposed that he return and play for patients and staff. He describes various patients for whom he played over the next six years (with permission or changes of name and details). He explains his approach to choosing music, pacing it, and feeling hunches for what is right for a given patient. He interviews experts and reads scientific papers in order to explain how the brain processes music. Music reminds patients of their earlier, healthier lives; it coordinates right and left brain; it brings calmness and peace.
Imaging studies show that music (and emotionally charged literature) stimulate the brain regions associated with reward—similar to euphoria, sex, and use of addictive drugs.

Schulman knew some 300 pieces from a wide range of music, but his illness damaged his memory so that he could recall only six of them. That meant his work relied on sheet music. Near the end of the book, however, his “rehab” of playing three times a week, concentrating on the music, and intending to help others—all this allowed his brain to heal, and he began to memorize as before. Schulman consults with experts and undergoes two brain scans and other studies that show the neuroplasticity of this brain that allowed it to rewire and memorize once again.

Although Music Therapy is discussed as an allied profession, Schulman is considered, rather, as a “medical musician” playing only in the SICU. Provision of music, whether by Music Therapist or “medical musician,” is, however, usually not covered by insurance and therefore not available to patients.           

There’s a six-page Afterword by Dr. Marvin A. McMillen, who Schulman describes as “central” to his survival. McMillen writes that being both a critical care doctor and a critical care patient himself (polycystic kidney disease), he knows the importance of emotional support to patients, healing environments, and the power of music. McMillen was also pivotal in allowing Schulman to play in the SICU.

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Is It All in Your Head?

O'Sullivan, Suzanne

Last Updated: Mar-17-2017
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Essay


Suzanne O’Sullivan is a neurologist in the British National Health Service. She has a particular interest in psychosomatic illnesses, and in this book, she covers what she has learned about them. O’Sullivan provides these learnings mostly from clinical experience rather than as findings from empiric studies on psychosomatic illnesses.   

Each chapter is built around one or more case studies that focus on particular psychosomatic illnesses, and include historical perspectives and various theories that might explain why they occur.  

The cases O’Sullivan uses presented themselves as seizures, paralysis, urinary tract troubles, generalized and localized pain, gastrointestinal problems, fatigue, blindness, and dystonia. Patients sometimes came to her with pre-determined diagnoses such as epilepsy, Lyme disease, chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia among others. O’Sullivan is emphatic that psychosomatic illnesses are not just any presentation of illness that cannot be linked to a pathological basis. Psychosomatic illnesses arise from “the subconscious mind [that] reproduces symptoms that make sense to the individual’s understanding of how a disease behaves.” (p. 83) Illness presentations that are feigned or self-inflicted (e.g., Munchausen’s syndrome) are not psychosomatic illnesses in O’Sullivan’s view.

Each chapter delves into some particular aspect of psychosomatic illness relevant to the case study. These include history (e.g., role of the uterus in hysteria), mechanisms at work (e.g., conversion reactions, dissociation), triggers (e.g., stress, loss, personality traits), factors (e.g., previous illness experiences), illness behavior disorders (e.g., associating illness to benign physical sensations), and the higher incidence seen among females. Though O’Sullivan teases out various characteristics and workings of psychosomatic illnesses, she admits that they remain vexing to clinicians because, “almost any function of the body can be affected in almost any way.” (p. 170)

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Writing for all the co-authors, Rita Charon challenges “a reductionist, fragmented medicine that holds little regard for the singular aspects of a person’s life” and protests “social injustice of the global healthcare system” (p.1). She gives a history of narrative medicine, lists its principles, and summarizes the book’s chapters, mentioning that several come as pairs that present theory then practice. The six principles are “intersubjectivity, relationality, personhood and embodiment, action toward justice, close reading (or slow looking), and creativity” (p. 4).
The basic thesis is that healthcare can be improved by narrative medicine because “narrative competence can widen the clinical gaze to include personal and social elements of patients’ lives vital to the tasks of healing” (p. 1). 
This is a dense, theory-laden book from the group at Columbia University. The summaries below touch of some of the major points.   

Ch. 1, Account of Self: Exploring Relationality Through Literature

Maura Spiegel and Danielle Spencer describe the richness of literature that allows readers to respond creatively. In clinical settings, a caregiver may similarly listen attentively and help co-construct a narrative with the patient. Literature can help us explore “the limits of rationality and positivism” (p. 29) and move from “a model of autonomy to one of relationality” (p. 34). 

Ch. 2, This is What We Do, and These Things Happen:  Literature, Experience, Emotion, and Relationality in the Classroom.

Spiegal and Spencer write that current medical education does a poor job of helping future physicians with their emotions.  Clinicians profit from a more integrated self and will listen better to patients and respond to them.      

Ch. 3, Dualism and Its Discontents I:  Philosophy, Literature, and Medicine

Craig Irvine and Spencer start with three literary examples that illustrate separation of mind and body. This dualism has pervaded modern medicine, causing losses for patients and caregivers, especially when there are power imbalances between them.  The “clinical attitude” (p. 81) dehumanizes both caregivers and patients.           

Ch. 4, Dualism and Its Discontents II:  Philosophical Tinctures
Irvine and Spencer argue that both phenomenology (appreciative of embodied experience) and narrative hermeneutics (privileging reciprocal exchange of persons) help us move beyond dualism.  Theorists Edmund Pellegrino (also a physician), Richard Zaner, and Fredrik Svenaeus help us understand how caregivers and patients should relate. 

Ch. 5, Deliver Us from Certainty: Training for Narrative Ethics

Craig Irvine and Charon write that various humanistic disciplines “recognize the central role narrative plays in our lives” (p.111). There is, however, “indeterminacy” in stories that “cannot be reduced by analyzable data” (p. 113). Narrative ethics urges us to consider issues of power, access, and marginalization for both the teller and the listener. The authors review recent ethical traditions of principalism, common morality, casuistry, and virtue-based ethics. They believe that narrative ethics, emerging from clinical experience and now allied with feminist and structural justice frameworks, will provide a better approach for many reasons. “Narrative ethics is poised to integrate the literary narrative ethics and the clinical narrative ethics” (p. 125).  

Ch. 6, The Politics of the Pedagogy: Cripping, Queering and Un-homing Health Humanities

Sayantani DasGupta urges attention to issues of power and privilege in classrooms, lest they “replicate the selfsame hierarchical, oppressive power dynamics of traditional medicine” (p. 137). “Cripping” and “queering” provide new perspectives on knowledge, for example the untested binaries of physician/patient, sick/well, elite/marginalized, teacher/student. Drawing on disability studies, health humanities, and queer politics, DasGupta challenges “medicalization” and the “restitution narrative” (p. 141).  

Ch. 7, Close Reading: The Signature Method of Narrative Medicine

Charon stresses “the accounts of self that are told and heard in the contexts of healthcare” (p. 157). Close reading, traced from I. A. Richards through reader response theorists, is “a central method” for narrative medicine (p. 164). Close reading enhances attentive listening, and both of these deepen relationality and intersubjectivity, allowing for affiliation between caregiver and patient (pp. 175-76). Such linkages aid healthy bodies and minds, even the world itself (p. 176).             

Ch. 8, A Framework for Teaching Close Reading

Charon describes how she chooses texts and provides prompts for responsive creative writing. She illustrates “the cardinal narrative features—time, space, metaphor, and voice” (p. 182) in literary works by Lucille Clifton, Henry James, Galway Kinnell, and Manual Puig.  

PART V, CREATIVITY            
Ch. 9,  Creativity: What, Why, and Where?

Nellie Hermann writes that “healthcare in particular has a vexed relationship to the notion of creativity,” in part because of issues of control (pp. 211-12); values of “evidence based” and “numbers-driven” medicine are also factors. Narrative medicine, however, “is about reawakening the creativity that lives in all of us” (p. 214).            

Ch. 10, Can Creativity Be Taught?

Hermann reports on techniques used in the College of Physicians and Surgeons at Columbia, including prompts and a Portfolio program. A “Reading Guide” helps clinical faculty (and others) respond to student writing. Responses to writing can nourish the “creative spark.”  

Ch. 11, From Fire Escapes to Qualitative Data: Pedagogical Urging, Embodied Research, and Narrative Medicine’s Ear of the Heart

Edgar Rivera Colón suggests that “we are all lay social scientists of one kind or another,” seeing people in action in various contexts. He affirms an “assets-based approach to public health challenges, as opposed to a deficits-based and pathology-replicating paradigm” (p. 259). We are all embodied actors in relationship to power, privilege, and social penalty. Research through interviews and participant observation show “meaning worlds” in tension with “systemic inequality and structural violence” (p. 263). 

Ch. 12, A Narrative Transformation of Health and Healthcare

Charon presents and analyzes a case study of patient Ms. N. as treated by internist Charon. They’ve been working together for decades. Charon writes up her perceptions and shares them with Ms. N. Speaking together, they “became mirrors for one another” (p. 274). Psychiatrist Marcus discusses transference and transitional space in that experience. A caregiver as witness can shift healthcare from “instrumental custodianship to intersubjective contact” (p. 288).            

Ch. 13, Clinical Contributions of Narrative Medicine

Charon describes applications of narrative medicine, all with the aim of improving healthcare. She describes techniques for interviews of patients, writing methods, and ways to improve the effectiveness of healthcare teams, as well as changes in clinical charts and other narrative descriptions of patients.

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