Showing 41 - 50 of 258 annotations tagged with the keyword "Illness Narrative/Pathography"

This Far and No More

Malcolm, Andrew

Last Updated: Sep-12-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Emily Bauer, mother of two small children, psychotherapist and teacher, social, smart, athletic, and strong-willed, finds, after a curious series of falls and other accidents, that she has ALS, "Lou Gehrig's Disease," a disease that involves slow atrophy of all muscular control, leading to complete paralysis and then death.  The disease is relentless, and treatments palliative at best. 

First in handwriting and later by means of a tape on which she can type, letter by letter, by moving her head to press a button as a cursor cruises through the alphabet, she keeps a diary up until just days before her death.  The diary, a remarkable record of her physical and emotional fluctuations, includes stories she laboriously writes for her daughters that gently mirror the confusions they encounter coming to see a profoundly disabled mother who can no longer hold them or speak to them.  The story culminates in Emily's plea for someone to turn off the ventilator that is keeping her alive, and the efforts her husband makes with the help of a meticulous and sympathetic lawyer and a courageous doctor to arrange for a voluntary death.  

View full annotation

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This remarkable memoir/natural history chronicles the author's observation of a snail that occupies the flower pot at her bedside during a long immobilization due to chronic fatigue syndrome.  For months of relative isolation, she observes the habits of the snail and begins to research the lives, habits, species, and idiosyncrasies of snails by way of getting to know this one in greater specificity.  As she puts it, "When the body is rendered useless, the mind still runs like a bloodhound...," (p. 5) and her mind certainly does.  Peering into poetry and story as well as biology, she discovers both facts and lore about the lives of snails to complement her intimate curiosity about the life of this snail.  Along the way, and very much by the way, she reflects on the nature of her own complex illness, the likely brevity of life she has now to expect, and how to learn from another species how to live in time differently. 

View full annotation

Mortal Embrace

Dreuilhe, Alain

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

Primary Category: Literature / Nonfiction

Genre: Journal

Summary:

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

View full annotation

Illness as Narrative

Jurecic, Ann

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

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

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

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

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

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

View full annotation

Jo Spence Archive

Spence, Jo

Last Updated: Apr-26-2012
Annotated by:
Metzl, Jonathan

Primary Category: Visual Arts / Visual Arts

Genre: Multimedia

Summary:

Unfortunately,the archive as described and annotated here is no longer available on line. The quotes, summary, and commentary below are nevertheless worth reading. Some images may be found as noted in Miscellaneous below.

Powerful series of self-portrait photographs documenting the artist’s fight against breast cancer, accompanied by a narrative describing her responses to the medical community. In early images, Spence undergoes mammography, lumpectomy, and finally, mastectomy (images 1-3, 5). These "clinical" images provide a temporal narrative of the course of Spence’s "illness," while concomitantly tracing the inter-relationship between the corporal/medical and the artistic body. In so doing, Spence calls into question medical notions of autonomy and ownership, while re-claiming her "right" to the representation of her body-parts.

In later images, Spence rejects Western medicine, in favor of alternative therapies such as acupuncture (image 4) and phototherapy (image 6). As Spence writes: "Women attending hospital with breast cancer often have to subject themselves to the scrutiny of the medical photographers as well as the consultant, medical students and visiting doctors. Once I had opted out of orthodox medicine I decided to keep a record of the changing outward condition of my body. This stopped me disavowing that I have cancer, and helped me to come to terms with something I initially found shocking and abhorrent."

Supporting text by Terry Dennett (Curator, Jo Spence Memorial Archive) at the end of the series of images provides additional excerpts from Spence’s writing, and several useful links to breast cancer awareness sites.

View full annotation

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This short, gripping book describes Taylor's massive stroke, a burst blood vessel in the left side of her brain. Ironically, she was at 37, a neuroanatomist at Harvard, well versed in the anatomy and function of the brain. Her knowledge allowed her to understand from the inside her rapid loss of mental function and, with treatment, her very long (some eight years) recovery to health and, once again, professional activity.

Taylor presents an overview of brain structure and function, emphasizing the different roles of the left and right hemispheres. Since her left hemisphere was damaged and needed to be "rebuilt," in her term (learning to read, to dress herself, to drive a car, to think), she had plenty of time to explore her right brain and understand its wisdom and peace. This is her insight: our culture prizes the admirable but often frantic work of the left brain, putting us in stressed, competitive modes of thinking and acting, often aggressive and argumentative. "My stroke of insight," she writes, "is that at the core of my right hemisphere consciousness is a character that is directly connected to my feeling of deep inner peace" (page 133). Both sides of the brain have their strengths and uses, but she especially enjoys the spiritual and humane aspects of the right brain and, by extension, invites her readers to consider these resources for themselves and for the larger society.

Taylor credits her mother's care for much of the recovery, although it is clear between the lines that Taylor herself worked hard with various therapists (speech, massage, acupuncture). Despite the severity of her injury and the surgery, she appears to have returned to professional work at a high level, fully recovered and very grateful.

View full annotation

Summary:

Edited by Victoria Tischler (a psychologist in the Division of Psychiatry at The University of Nottingham), with forewords by Dinesh Bhugra (Professor of Mental Health and Cultural Diversity at King's College London) and Allan D. Peterkin (who founded ARS MEDICA: A Journal of Medicine, The Arts and Humanities), this handbook is intended to provide guidance on medical humanities teaching in the field of mental health.  After a short, familiar introduction to the need for such teaching, Tischler offers concrete guidance on how to begin establishing a medical humanities course.  The subsequent chapters deal with topics, perspectives, and forms of art one might include in such a course.  There is a "brief history of psychiatry through the arts" by Allen Beveridge which is, as we are warned in the title, somewhat cursory, but also well-written and thought-provoking.

Following this are chapters on the use of cinema, poetry, literature, creative writing, drama and theatre, and music in medical humanities teaching for mental health, interspersed with essays on Hans Prinzorn, who collected paintings and pictures by the mentally ill; art psychotherapy; community arts (where, as the authors point out, there is no "interpretative component" but rather a focus on participatory creativity); and the blues.  The authors include psychiatrists, artists, mental health nurses, and counselors/therapists, and the book includes a lovely selection of color plates.

View full annotation

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

On July 5, 1998, physics Professor Alan Cromer suffered a heart attack on a plane, and survived after almost an hour of resuscitation efforts, but sustained brain injury from lack of oxygen.  In this chronicle of caregiving, his wife, a psychiatric nurse by training, gives a very personal, detailed account of the radical adaptations his disability required of both of them.  Her story includes reflection on his and her own emotional adjustments to loss of parity in communication and awareness, practical adjustments to physical limitations, and social adjustments to family, friends and professional colleagues.

Arduously, over time, Alan regained some ability to read and speak--indeed, he spoke to groups with Janet about their life together during the peak of his rehabilitation.  But the road to even partial recovery was bumpy, and the writer fully acknowledges the pain, grief, irritation, and deep frustrations that intersected moments of authentic pleasure, discovery, and mutual kindness.  Professor Cromer died September 3, 2005.

View full annotation

My Life as a Doll

Kirschner, Elizabeth

Last Updated: Oct-27-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

In this collection, which is really a poetry memoir or lengthy poetry sequence, the speaker develops her narrative of a tormented childhood and adolescence, psychological breakdowns, and ongoing struggle in a more "normal" present.  The poems are labeled only by section, of which there are four, and are separated simply by their spacing on the page.  Section 1, "Cuckoo," reveals the origin of the poet's "life as a doll": "After my mother hit the back /of my head with the bat's /sweet spot, light cried / its way out of my body. . . . I was  . . . a doll carved out of a dog's bones . . . my life as a doll / was a life of waiting" (4-5).  Mother was an abusive alcoholic (there seems to be no father ever on the scene).

Section 2, "An Itty Bitty Ditty," concentrates on the speaker's adolescence, which was one of promiscuity and parental neglect.  "Pretty, said Mom / on the night of the prom . . . Pretty, she said as though / I were a ditty, an itty bitty / ditty not even God would pity. / Ditty gone silent.  ditty gone numb" (27).  At age 19 the poet/speaker "took a razor to my wrists"; she was pregnant with an unwanted child at age 20: "Cold walked into me and through me . . . How do you undo someone who's / already undone?" (32-33).

In the third section of the collection,"Tra-la-la," we are whisked ahead to the time when the poet is married and has an 11- year-old son.  At her son's birthday she has a psychotic break and her husband brings her to the hospital.  "When I / stepped out of the car, I sang, /  "tra-la-la," as if I were / Cinderella going to an enchanted ball"  (41).  This section is concerned with her institutionalization and psychotherapy with "Dr. Flesh."  The poet is not enamored of Dr. Flesh, who puts her on display for a group of students "who wanted to be  / just like Dr. Flesh  / who was special, / very very special / unlike me" (43) and who yawns during therapy sessions (44).  The poet also satirizes her diagnostic workup -- a 500 question survey:"Do you like golf? it asked / and when I wrote 'no' / I was diagnosed" (49).  The final section, "O Healing Go Deep," is both a railing and incomprehension about the way the poet's mother treated her, and a plea for sanity: "enough I say of my careening / craziness, of being /a thing in thin wind / running away from Mother" (59).

View full annotation

Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Anthology (Essays)

Summary:

As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
 
Of the ten essays, four concern personal or familial experience of illness. These four cover a vast range: literature and disability specialist Kristin Lindgren describes her story of the elusive diagnosis of chronic fatigue syndrome and her coping skills; medical humanities and medical ethics expert Carol Schilling offers a poignant narrative of her experience as a mother of a previously healthy, athletic son who suffers a cervical spine injury from a skiing accident; Gayle Whittier places the story of her daughter's disability amongst a trio of nonfictional and fictional narratives of disability and illness; and renowned poet Tess Gallagher explores her relationship with and caring of her mother who has Alzheimer's disease. These essays, written as they are by women steeped in literature and writing, are not merely chronicles; rather they are infused with commentary on story and the meaning of life as story, journey and relationship.
 
The other six essays are likewise diverse and range from cultural/political studies from the Navajo to the Irish (which includes literary analysis of works by poets Eavan Boland and Nuala Ní Dhomhnaill), to insightful critiques of literary works such as  Hjalmar Soderberg 's Doctor Glas, Lauren Slater's Lying: A Metaphorical Memoir, Brian Clark's Whose Life Is It Anyway?, Alejandros Amenabar's film The Sea Inside (Mar Adentro), and George (Marian Evans) Eliot's Janet's Repentance.

Consistent with the nature of medical humanities, the essays cross boundaries. For example, Whittier weaves her experiences as a mother of a disabled child with reflections on embodiment and literary critique. Gallagher compares the notions of time in poem-making with the necessity to live in the moment when caring for a loved one with Alzheimer's. She notes: "Of the written arts, poetry is most responsive to the moment and so coincides with the condensed time frame of those with Alzheimer's - which oscillates between the distant past and the present moment." (p. 71) Schilling tenderly writes of her family (for an illness strikes not just the patient): "We live the best lives we can, folding each of our stories into one another's." (p. 40) Diedrich explores not just the (at times infuriating) play with deceit in Lying, but also examines the ways in which patients lie and medical language obfuscates illness. She further explores, with great insight, expectations: of literary reviewers, patients and physicians.

 

View full annotation