Showing 111 - 120 of 264 annotations tagged with the keyword "Illness Narrative/Pathography"

Annotated by:
Henderson, Schuyler

Primary Category: Literature / Nonfiction

Genre: History

Summary:

A memoir of raising a daughter with autism and an anthropological and historical investigation into autism around the world, Unstrange Minds: Remapping the World of Autism draws upon Grinker's own experiences, those of families of children with autism in the United States, Korea, India and South Africa, and a variety of experts and caregivers.  Putting the story of autism into a historical, anthropological, and personal context, the book deals with hot-button topics - the question of an autism epidemic, of etiology, of treatments - with a careful, patient approach.

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

On February 16, 2003, readers of The New York Times Magazine came upon Harriet McBryde Johnson's cover story, "Unspeakable Conversations," and a remarkable image of her gazing directly at those readers from her power wheelchair.  Her story memorably recounts her uncompromising, yet civil disagreements with Utilitarian philosopher Peter Singer about nothing less than the value of her life.  That narrative essay is one of eleven stories published in Too Late to Die Young.

They make the case that philosophers and others have incorrectly imagined Johnson's life, and the lives of others with chronic and disabling conditions, as burdensome and not worth living.  Born with a degenerative neuromuscular disease, Johnson grew up in a family that appreciated her; she practiced law in her native Charleston, South Carolina, and became nationally known for her disability activism.  Still, she encountered a world filled with people who feared her condition.  Fear, she found, led them to assume that disability inevitably brings suffering and to use that assumption to justify acts that would prevent her birth.

Her stories, conversationally and often humorously, ask readers to question why they burden some people with calls to justify their lives or to assure the world that they experience pleasure.  Each story recounts an episode that reveals the pleasures Johnson experienced as an active agent in the world.  She ran for a county office, represented her state at a Democratic National Convention, stood her ground for free speech and against Secret Service tactics when President Reagan spoke at her law school, protested Labor Day Week-end telethons, traveled to Cuba to cover a disability conference for a magazine, advocated for clients in employment discrimination cases, and made many, many friends.

Feeling exhilarated rather than confined by her wheelchair, she bears witness, perhaps unexpectedly, to another pleasure:  "the simple delight of movement."  She writes of maneuvering around Charleston, "I zoom through chaotic swarms of tourists, zip around the raggedy sidewalks . . . loop around every inconveniently placed garbage can, with maximum speed and also with style and grace" (252).  But her stories also describe her wheelchair stumbling over incompatible surfaces, one of which sends her to an emergency room far from home.  This episode also brings moments of grace, this time with the ER staff.  After learning who she is, they Google her on-line profiles and writings.  Delighting in their patient with unpredictable needs, they place print-outs of her electronic portfolio in her chart.

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Summary:

This collection of stories offers a sidelong view of medicine from the perspective of a thoughtful, experienced doctor of internal medicine at a teaching institution (UCSF) in an urban setting that brings a wide variety of types of patients to his door.  In a context of evident respect and admiration for even the quirkiest of them, Watts admits to the kinds of personal responses most have been trained to hide-laughter, anger, bewilderment, frustration, empathetic sorrow.  The cases he recounts include several whose inexplicabilities ultimately require action based as much on intuition as on science.  He includes several stories of illness among his own family and friends, and makes it clear in others how his professional decisions affect his home life and his own state of mind.  

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Triggered in part by a trip to the Galápagos Islands, the author interweaves two parallel narratives: Darwin's "journey toward evolution" along with the related work of Alfred Russel Wallace; and the author's own journey through life, partially disabled and dependent on the specially fitted shoes that help him to walk.  Together these two narratives develop "all I have come to understand about chance and change, fear and transformation, variation and cultural context, ideas about the body that question the definition and existence of difference in all of our lives" (xvii).

Born with an unnamed congenital condition in which his fibulae are absent along with other lower limb "abnormalities," Fries underwent five major reconstructive surgeries as a child, but after those, what helped him most were special shoes that were fitted to his special body, assisting him to walk.  As an adult, however, he begins to experience back pain and knee problems.  The memoir relates, both in flashback, and in the present day, Fries's quest for a proper pair of shoes that will help him avoid yet another surgery -- the shoes he has been wearing are 20 years old and no longer do the job.  We meet Dr. Mendotti, who treated him like a peculiar specimen and offered a pharmacologic way out of his pain; shoemaker Eneslow, in a dingy Union Square office, whose shoes not only fit Fries well, but were festive in appearance -- "I felt both normal and special" (17); other practitioners of orthotics who try but fail to construct shoes that relieve Fries's pain, and finally, the gifted, patient orthoticist, Tom Coburn, who persists until he is able to provide shoes that work.  The shoes have been adapted for Fries's body, just as man has constructed adaptations that allow him to live in a variety of climates and circumstances.  Conversely, Fries, convinced he "can adapt to the circumstances in which my body places me (169)," draws from Darwin, whom he quotes: "individual differences are highly important for us, as they afford materials for natural selection to accumulate" (169).
 
Darwinian connections are invoked throughout the narrative.  The peculiar configuration of Fries's feet and shoes help him to ascend a series of mountain ladders while his partner, Ian -- who usually has to assist Fries with such physical maneuvers -- suddenly becomes fearful of the height and exposure;  back problems might have developed even without his congenital abnormalities because evolution of the capacity to walk upright included the tendency toward back pain; the role of chance in natural selection and the role of chance in the physical fact of congenital conditions; the positive role that his partner Ian's attention deficit disorder (ADD) could have played in the days of hunter-gatherers and the cultural context in which ADD is now considered to be "abnormal."
 
Fries discusses his fears -- both rational and irrational -- as well as his awareness of stigma, difference, and sameness.  The context of these discussions is usually a reminiscence about vacations in far-flung countries (Thailand, the Galápagos, Bali, Alaska, the Canadian Rockies) and physically challenging domestic locales (a Colorado River raft trip, the Beehive Mountain in Acadia National Park).  He  occasionally brings into the discussion his homosexuality, especially as his physical deformity affected sexual encounters.  The relationship between Fries and Ian is woven throughout the memoir as one of understanding, mutual need and benefit.  As the memoir ends, Fries worries about the likelihood he will need a wheelchair, but is at the same time gathering confidence in his ability to ride the Easy Flyer bicycle that Ian has discovered at the local bike shop.

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Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Author Jennifer Culkin has been involved, for all of her nursing career, in high stakes, heart stopping, instant-decision-making areas of critical care.  After years working in Neonatal Intensive Care, she became a flight nurse--and giving intensive care to trauma victims while trying to maintain balance and sterile technique in a wind-buffeted helicopter has to be one of the most difficult tasks a nurse might undertake.  Her memoir, A Final Arc of Sky, opens with such a scene.  The patient, Doug, is soon crashing, and the nursing team, Jennifer and her partner, have to make a series of tough decisions (pp. 8-12).  From this scene on, the action rarely wavers.  And although Culkin keeps the pace moving, she is not always, or even most often, telling us about similar traumas.  She deftly weaves her personal narrative--husband and sons and dying parents--in and out of scenes from her nursing career, braiding the plot lines of her life in chapters both moving and compelling. 

In those chapters that deal with the often dangerous helicopter transports Culkin has flown, we learn (and we feel) just what it's like to be a flight nurse crammed in-between patient and helicopter door, juggling instruments that too often slip to the floor and trying to save patients that too often want to die.  In those pages that deal with family, we are privy to Culkin's internal debate about how to separate family from nursing (what she calls "the great neuronal divide between my work and my life" (p.136), and we see that she sometimes doesn't have much energy left at the end of the day to draw close to those she loves.  Part of what makes this memoir difficult to put down is the persona of the narrator herself: Culkin comes across as an honest, often irreverent risk taker, a woman who likes to ride her bike down dangerous hills at breakneck speed and allows her son to do the same (see chapter six, p. 57); a woman who loves the dangerous drama of flight nursing and doesn't worry about crashing (p. 80)--in fact she enjoys strapping herself "into the eye of a maelstrom" (p. 80). 

This memoir entertains, and it provides a glimpse into how some caregivers not only risk their lives to save the lives of others but also shoulder the responsibility of making split second decisions upon which a patient's life might depend.  And there is a surprise in this memoir, one that I can't too fully divulge because to do so would be to rob potential readers of their own discovery.  Suffice it to say that near the end, Culkin reveals something about her own health, an illness she has fought against in every chapter.  When we learn the details of her own illness narrative, we look again, with new understanding, at her fascinating career and her interactions with her loved ones.   

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In this candid chronicle of what many would call a prolonged depression occasioned in part by her husband's illness and death, Norris, a popular memoirist and essayist, seeks carefully to distinguish the psychological or psycho-medical category of "depression" from the spiritual state of "acedia" or, more bluntly, "sloth," in its oldest and most precise sense.  In doing so she raises important questions about widespread and often imprecise use of categories derived from clinical psychology, an imprecision that may muddy the distinction between spiritual and psychopathological experience.

"Acedia" she defines as a failure of will, signifying a need for spiritual guidance and prayer, whereas "depression" requires medical treatment.  Going beyond the confessional, Norris suggests that acedia may be an endemic condition among middle-class Americans, over-busy but spiritually slothful.  The book is loosely organized, often characteristically lyrical, and more invitational than diagnostic.  Her purpose, finally, seems to be to inspire readers to embrace simple life-giving spiritual disciplines like reading the Psalms as a stay against excessive self-preoccupation and actual depression as well as spiritual depletion.  

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Annotated by:
Bertman, Sandra

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

Filmed at Shands (teaching) Hospital in Florida, this documentary validates the importance of the arts and expressive therapies in all aspects of health care, including medical education. Pediatric oncologist John Graham-Pole and poetry therapist John Fox -often as a team- work with patients of all ages in groups and at the bedside.   Other physicians including a neuroscientist provide rational explanations of the release of endorphins and brain changes resulting from creative activities.  Though the healing process initiated by the reflective act of writing poetry is ostensibly the focus of the film, the documentary is permeated with the transforming effects of dance and art therapies in their ability to lessen physical and emotional pain; the importance of healing environments, not just paintings in lobbies, but in patient created ceiling tiles and wall installations; and especially the warmth, intimacy and humanity generated by exemplary physician communication skills.

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Body Language

Studer, Constance

Last Updated: Mar-10-2009
Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Body Language, a beautifully crafted and expansive memoir by retired nurse Constance Studer, spans a range of issues within the narrative of the author's life: a childhood marred by a medical procedure--a hasty frontal lobotomy that left her father incarcerated in a mental institute-- and, in later years, by her own illness, one caused by the Hepatitis B vaccine.  These two events are the bookends that frame Body Language, a memoir that examines family life, nursing, medicine, medical ethics, personal survival and illness in language that is poetic and compelling.  Studer, a writer as well as a nurse, intersperses her own story--which is novel-like in its intensity--with literary allusions, research material and knowledge culled from her years as a nurse in Intensive Care.  In her memoir, she writes not only with the authority of one who has been on both sides of the bed, as professional caregiver and as suffering patient, but also as a family member who has witnessed how unwise and unchallenged medical decisions might affect generations. 

What I especially admire about this memoir is that it is not simply a "telling about."  Instead Studer brings us into the action of the narrative, for example giving us imagery and dialogue as her father prepares for the surgery that he doesn't know will deprive him of memory and sense ("Holy Socks" p. 21).  She also intertwines many narrative strands, giving us the fullness of her family history and her professional adventures, so that when we reach the narrative of her own illness we have a sense of a life, a full life, that has been forever altered.

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Bioethics at the Movies

Shapshay, S., ed.

Last Updated: Feb-20-2009
Annotated by:
Henderson, Schuyler

Primary Category: Literature / Nonfiction

Genre: Anthology (Essays)

Summary:

Intended to "spark a philosophical dialogue among readers and in classrooms, clarifying, refining, and challenging the ethical positions people hold on a great many bioethical topics"(1), Bioethics at the Movies contains 21 essays discussing bioethical issues, from abortion and cloning to disability narratives and end-of-life care, in relation to various films. The two dozen authors come from the United States, Spain, Australia, Israel and the United Kingdom, and the majority have their academic homes in Departments of Philosophy. For the most part, the essays use one particular film as a springboard to discuss a bioethical topic, such as terminating pregnancies (The Cider House Rules), marketing organs (Dirty Pretty Things), and memory deletion (Eternal Sunshine of the Spotless Mind). Two films get a pair of essays (Gattaca and Million Dollar Baby), and several authors cover more than one film. In addition to the aforementioned films, Wit, Citizen Ruth, Bicentennial Man, I, Robot, Babe, Multiplicity, Star Trek: Nemesis, Ghost in the Shell, Dad, Critical Care, Big Fish, Soylent Green, Extreme Measures, Talk to Her, and Ikiru are closely covered.

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Unaccustomed Earth

Lahiri, Jhumpa

Last Updated: Jan-06-2009
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

The unusual title is borrowed from Nathaniel Hawthorne's story, "The Custom House," to suggest a shift in fortune when immigrants "strike their roots into unaccustomed earth."  Set almost entirely in the United States (the unaccustomed earth), eight separate stories are connected most obviously by cultural dissonances affecting characters who are Indian or have Indian parents.  Three of the stories, however, are linked by a strong narrative connection that is unexpected, profound, and unforgettable.

For Indian readers, the narratives describe complexities about migration patterns, cultural issues, alienation, and generational differences. The stories deal with well-educated children of immigrants who become offspring their parents barely recognize.  For other readers, the stories reveal situations about families and customs that are strangely familiar, especially those stories dealing with relationships between parents and children.
 
The forces of globalization have created and accelerated shifts that can seem staggering to all parents intent on preserving cultural patterns and traditions. Whether Indian or not, most parents experience a sense of alienation while watching their children flourish in a world that increasingly appears unfamiliar and foreign.

Not surprisingly, the stories concern strains and challenges affecting mixed relationships and/or mixed marriages and stresses on disapproving and disappointed parents, while others focus on children succumbing to drugs and alcohol(for the latter, see annotation of "Only Goodness").  All deal with some kind of emotional loss, but provide connections to feelings experienced by children and their parents in life's quiet and more kinetic negotiations.
 
The first story is about Ruma, a well-educated woman who lives in Seattle with her work-alcoholic American husband, and child, Akash.  Generational and cultural contrasts are revealed in overt and more subtle ways when her recently widowed father arrives for a short visit. Even though Ruma's complete assimilation into her non-Indian home as well as her on-going worries about her father's loneliness are major considerations, another story thread is spun, one that quietly reveals the father's thoughts about himself and a new relationship made recently during a vacation in Europe. Ruma's assumptions about her father, his loneliness, his possible dependency on her, and the Seattle vacation as a possible signal for relocating to her household turn out to be entirely wrong. 
 
The last three stories follow a boy, Kaushik, and girl, Hema, into adulthood.  In the first story, "Once in a Lifetime," Hema recalls her first memory of Kaushik when he was 9 and she was 6. The occasion was a farewell party for Kaushik's parents who were returning from the United States to live in Calcutta. The mothers, who grew up in Calcutta, but met in Cambridge, Massachusetts had become very close and were saddened by this separation.

Seven years pass before Kaushik‘s parents return to the Boston area and stay with Hema's family. Hema found the now 16-year old young man appealing, but brooding and totally uninterested in her. Even though Hema expected Kaushik to be Indian-like in behavior, he was more Americanized than she was. That the family had flown first-class shocked Hema's conservative family as did their new smoking and moderate drinking habits.

After a long search, and to the relief of Hema's parents, Kaushik's family found a  modern house on the North Shore.  Before they moved to their new home, Kaushik surprised Hema with confidential information-- his family had left India to seek treatment in Boston for his mother's breast cancer.  All medical efforts had been unsuccessful and his mother had only a short time to live.  Hema promised to keep this disclosure secret and grieved for the woman she had come to admire and love.
 
The second story in the link, "Year's End," is narrated by Kaushik.  With the opening line, "I did not attend my father's wedding," readers know that Kaushik‘s mother has died.  His father, in Calcutta for a visit, had married Chitra, a woman with two young daughters, and all would be returning to the North Shore house to live. Most of the chapter recounts the ordeal of the mother‘s dying, Kaushik‘s tremendous sense of loss, and the loneliness experienced by him at Swarthmore College.  No mention is made of Hema by the desolate narrator except to remember he had hated every day spent under her parents' roof, but later had come to think of that time with nostalgia.  

"Going Ashore" brings Hema and Kaushik together in Rome where she has a study grant and a visiting lectureship and he is on vacation from his work as an award-winning photo journalist.  Hema's parents have arranged for her to marry Navin in Calcutta.  Navin has accepted a teaching position at MIT. Until her unexpected reunion with Kaushik and the intense love affair that follows, neither had experienced any real connection with another person.  The story about them in Rome seems to represent an independence from the cultural forces that have shaped their lives, but this independence is short lived.  Ultimately, she is unable to set aside the expectations imposed by her parents.  The consequences of their final separation are more than any reader might imagine.

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