Showing 1 - 10 of 671 annotations tagged with the keyword "Illness and the Family"

Annotated by:
Kohn, Martin

Primary Category: Literature / Plays

Genre: Play

Summary:

First published in 1898, Chekhov’s “A Doctor’s Visit”  has been ably adapted as a short play by physician-playwright, Guy Fredrick Glass. In addition to the original characters, in his adaptation Glass has added a new character, a medical student, Boris, as a foil and interlocutor for the work’s main character, Dr. Korolyov. Staging directions and scene setting also add dramatic dimensions to the story, as do elaborations of conversations including  comedic encounters with the governess, Christina Dmitryevna, and a display of "compassionate solidarity" (see Coulehan annotation ) with the doctor’s patient, Liza. The primary theme of the story stays true in this adaptation—Korolyov’s impressions of the patient viewed from a cold objective stance are changed as he develops personal insights into the social and political nature of her (and his) malaise.

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States of Grace

Lipman, Mark; Cohen, Helen

Last Updated: Jan-24-2017
Annotated by:
Grogan, Katie

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

States of Grace follows Dr. Grace Dammann, a pioneering HIV/AIDS physician, as she navigates life following a catastrophic motor vehicle accident that leaves her severely physically disabled. Before the accident Grace was a devoted caregiver at work and at home. She was the co-founder of one of the first HIV/AIDS clinics for socioeconomically disadvantaged patients at San Francisco’s Laguna Honda Hospital, honored for her work by the Dalai Lama with a 2005 Unsung Heroes of Compassion Award. She was also the primary breadwinner and parent in her family with partner Nancy "Fu" Schroeder and adopted daughter Sabrina, born with cerebral palsy and HIV. During a routine commute across the Golden Gate Bridge in May 2008, Grace was struck head-on by a car that veered across the divide.  She miraculously survived—her mind intact, her body devastated. She endured a prolonged coma, innumerable surgeries, and a marathon of rehabilitation. The documentary picks up Grace’s story when she is finally discharged for good. She returns home to acclimate to a radically altered life, one where she is wheelchair-bound and dependent on others for simple tasks of daily living. The film captures the rippling effects of the accident on all dimensions of Grace’s life—personal, professional, psychological, spiritual, and economic—focusing especially on how Grace’s disability turns the family dynamic on its head. Fu becomes the primary caregiver to both Grace and Sabrina, Grace becomes a care-receiver, and as Grace describes “Sabrina’s position in the family [is] radically upgraded by the accident. She is so much more able-bodied than I am.” We witness her frustrations with the limitations of her paralyzed body and see her, at one point, arguing with Fu about her right to die if she continues to be so impaired. Some of Grace’s ultimate goals (to walk again, to dance again, to surf again) remain unattainable at the film's conclusion, but she sets and exceeds new ones. Grace “comes out” as a disabled person in medicine, returning to Laguna Honda Hospital as its first wheelchair-bound physician, where she is appointed Medical Director of the Pain Clinic. She resumes the caregiver role, but with an intimate knowledge of the lived experience of pain, suffering, and disability.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The subtitle is accurate enough: “A Memoir of a Family and Culture in Crisis,” although the author J.D. Vance is, in fact, the focal point of view throughout, from his childhood to his success as an adult. Few young people made it out of the hills to enjoy stable and successful lives, but J.D. was one of them, earning a degree at Ohio State University, then a law degree at Yale. While recounting his life, he also describes his relatives and neighbors, and he interprets the many dilemmas of his hillbilly culture. 
 
Vance was born in 1984 and grew up in Jackson, Kentucky, a poor town following the collapse of coal mining. His family was beset with poverty, alcoholism, mental instability, and more. His mother had nine miscarriages and suffered from addictions; she had multiple husbands. The culture around him suffered from domestic violence, drug abuse, hoarding, unemployment, honor defended by fists, knives, or guns, as well as bad financial habits, bad diets, obesity, lack of exercise, sugary drinks, dental problems, and what he calls “emotional poverty.”  There was welfare abuse and, in general “a chaotic life.”  He credits his grandparents, other relatives, various teachers and professors for supporting him, guiding him, and comforting him when he was hurt, angry, and/or confused.
 

Like many other hillbillies, J.D. moved some hundred miles north into southern Ohio, where steel companies provided jobs—that is, until they closed, like many other employers in the Rust Belt. There also, hillbillies were left without income and social problems increased. Stores and restaurants closed. Payday lenders and cash-for-gold shops took their place. Drug dealers and users took over empty houses.  

After high school, Vance joined the Marines. He credits the military for teaching him discipline, persistence, and for developing his self-respect. For his success at Yale, he thanks his professors, his girlfriend (later wife), and classmates for helping him understand customs of New England society. One example: he leaves a banquet to call his girlfriend; she instructs him on how to handle the nine pieces of unfamiliar silverware surrounding his plate.  

The last three chapters (11, 12, 13) and the conclusion analyze his experience on more conceptual terms, including the “social capital” prized by the the New England world, social instability of the culture he was raised in, and “adverse childhood experiences” (or ACEs), the psychologists’ phrase for the damaging events children experience in a culture of poverty, violence, and limited futures. He writes that governmental child services have policies that don’t understand the important roles of aunts, uncles, and grandparents in subcultures that rely on extended families.  Indeed, faithful to his mother, he, as an adult, provides specific help to her. 


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Extremis

Krauss, Dan

Last Updated: Dec-05-2016
Annotated by:
Redel-Traub, Gabriel

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Extremis, a Netflix documentary directed by Dan Krauss, follows Dr. Jessica Zitter a palliative care ICU physician at Highland Hospital in Oakland, California. The documentary begins with an exasperated Dr. Zitter trying to communicate with a patient on a ventilator: “Is this about the breathing tube? You want it out?” she asks. When the patient nods in affirmation, Dr. Zitter replies, “What if you die if I take it out?” The questions confronting the physicians, patients and their loved ones get no easier over the course of the film. The documentary is propelled by a dramatic tension between its protagonists: on one side Dr. Zitter, who is compassionate but dogmatically pragmatic, on the other side the family members of patients who are driven above all by hope and faith. This tension manifests itself in palpable ways. In one particularly powerful scene, a patient’s daughter says to Dr. Zitter: “it would feel like murder to pull that life support. That’s what it would feel like to me…I feel like maybe as a doctor, you know, being as smart, and being as knowledgeable, and being inside medical journals, it can dwindle your optimism a little bit.” Dr. Zitter replies simply, “I’m just trying to help you make a decision that’s right for your Mom.”  Of course, for Dr. Zitter there does appear to be a categorically appropriate decision in all of these cases. In most of her conversations, she is transparently trying to get family members to see that there is no realistic chance of meaningful recovery for their loved ones. That is not to say that she is insensitive to the family’s wishes or the complex bioethical conundrums which arise around her. In fact, her bravery and deftness in broaching these serious and difficult topics is on full display throughout the film. 

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Emergency Room Notebook, 1977

Berlin, Lucia

Last Updated: Nov-28-2016
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

The narrator Lucia works in a California city emergency room. Her job title is not specified - possibly a registration clerk or triage nurse. She enjoys working in the ER and marvels at the human body: "I am fascinated by two fingers in a baggie, a glittering switchblade all the way out of a lean pimp's back" (p90). Death, however, is a regular visitor.

All day, ambulances back up to the emergency room, gurneys rumble by, and charts accumulate. The staff is too busy. Patients are restless, frightened, and angry. She notes how everything associated with the ER appears gray - patient's skin, blankets, emergency vehicles. And perhaps the prognosis of patients as well: "Everything is reparable, or not" (p90).

Lucia describes Code Blues, the deaths of gypsies, an encounter with a blind man whose wife was DOA, drunks, and suicide attempts. She wonders why the elderly fall down so frequently. She's frustrated by the large number of people who come to the ER without an actual emergency and longs for "a good cut-and-dried stabbing or a gunshot wound" (p93). But Lucia worries that she has become too desensitized working in the emergency room, maybe even inhuman. Yet the flow of patients doesn't slow down - those with true life-threatening conditions and those who probably don't need to be there.

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The Wound Dresser

Coulehan, Jack

Last Updated: Nov-23-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The collection is prefaced and named for a poem by Walt Whitman, The Wound Dresser, annotated in this database by Jack Coulehan. In “On Reading Walt Whitman’s ‘The Wound Dresser’” Coulehan sees Whitman as a nurse tending the Civil War wounded, and, while using some of the words and language of Whitman’s poem, imagines himself moving forward in that created space of caring for patients: “You remain / tinkering at your soldier’s side, as I step / to the next cot and the cot after that.” (p. ix) The poem introduces us to all the ‘cots’ of the book – where we step from patient to patient, through history and geography, and through the journey of medical training.   The book is comprised of 4 sections without overt explanation, although there are 4 pages of Notes at the end of the book with information about select individual poems. In general, the themes of the sections can be described as: 1.) clinical care of individual patients and medical training; 2.) reflections on historical medical cases, reported anecdotes or past literary references; 3.) meditations on geographically distinct episodes – either places of travel or news items; and 4.) family memoir, personal history and the passage of time.   Many of the poems have been previously published and a few are revised from an earlier chapbook. Notable among the latter is “McGonigle’s Foot” (pp 42-3) from section 2, wherein an event in Philadelphia, 1862 – well after the successful public demonstration of anesthesia was reported and the practice widely disseminated, a drunk Irishman was deemed unworthy of receiving an anesthetic. Although it is easy to look back and critique past prejudices, Coulehan’s poem teaches us to examine current prejudices, bias and discrimination in the provision of healthcare choices, pain relief and access to care.   There are many gems in these 72 poems. Coulehan has an acute sensibility about the variety of human conditions he has the privilege to encounter in medical training and clinical practice. However, one of the standouts for me was “Cesium 137” based on a news report of children finding an abandoned radiotherapy source (cesium) in Goiania Brazil, playing with the glowing find and suffering acute radiation poisoning. He writes: “the cairn of their small lives / burst open…their bodies vacillate and weaken / hour by hour, consumed by innocence / and radiant desire.” (p. 68).   Following another poem inspired by Whitman, Coulehan concludes the collection with a sonnet “Retrospective.” He chronicles a 40-year career along with physical aging, memories of medical training “etched in myelin,” and the search for connection across that span of career including, “those he hurt, the woman / he killed with morphine, more than a few he saved.” Ultimately, he relies on hope with fitting understatement: “His ally, hope, will have to do.” (p. 97)

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The Sick Child

Munch, Edvard

Last Updated: Nov-08-2016
Annotated by:
Bertman, Sandra

Primary Category: Visual Arts / Painting/Drawing

Genre: Painting

Summary:

In this painting, Edvard Munch shows, as the center of attention, a stricken young girl, propped on a thick white pillow, covered with a heavy blanket, at the end of her short life. A grieving companion sits next to her, her head so deeply bowed that we can only see the top of her head, not her features. The companion is so overcome with grief that she can neither hold her head up, nor look at the dying girl. Only the young girl's haunting profile is visible, as she looks steadily toward a dark ominous drape, perhaps representing the unknown or the mystery of death. Her reddish hair appears thin, damp, and uncombed against the pillow.The two figures make contact by holding hands for comfort. The artist omits the details of fingers, and just indicates a simple connected shape for both hands. Striving for only simplified and essential forms, Munch enhanced each surface by impassioned brushstrokes, nuanced colors, and thick layers of impasto paint.

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The Sick Child

Munch, Edvard

Last Updated: Nov-08-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Visual Arts / Painting/Drawing

Genre: Painting

Summary:

Edvard Munch’s painting, The Sick Child, hanging in the Tate in London, England is his fourth version of the painting. This version is done in oil on canvas and was completed in 1907. The first version was painted in 1885.  

As we come upon this painting, we quickly realize we are standing at the end of a bed intruding upon a poignant moment. In this impressionistic painting, we can discern an adolescent girl propped up in bed. She is facing an older woman sitting at her side. We don’t see this woman’s face because her chin is on her chest in a way that makes her look distraught. We can easily conclude that she is the girl’s mother and that the girl is sick, very sick.
 

When we look around the room with the view Munch gives us, we see little in the way of medical supplies or equipment. There is only a bottle on a nightstand that might be some potion and a glass of water on a dresser. Nothing more is to be done for this child. She seems to know it and so she tries to comfort the woman who is attending her. The painting reminds the viewer that often those who are dying offer comfort to the ones attending them as well.

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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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Tell

Itani, Frances

Last Updated: Sep-22-2016
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Kenan Oak returns from World War I to a small Ontario town. He is virtually unable to speak and dares not venture from his home. Adopted by a reclusive uncle at an early age, he has no immediate family but his wife, Tressa, who loves him and accepts his disability with good grace. They have been trying to have a child without success, and the glimmers of Kenan’s recovery are dauntingly few and faint. Slowly with the help of his uncle Am, he begins to go out at night for walks in the woods and skating on the ice of the lake.  

Am and his wife Maggie have a strained marriage. She loves to sing and once aspired to a career in music, but instead she opted for Am and a farm—although now they live in town. Lukas, a gifted new musician arrives to direct the choir; he is a postwar immigrant from an unnamed European country, possibly Germany. He notices her talent and encourages her to sing solo at the upcoming New Year’s concert. Unused to the attention, she is captivated by him, his mystique, his appreciation of her, and the return of joy through song. They have an affair, which is discovered by Am.  

Well into the story, it emerges that Am and Maggie had lost two children to diphtheria, and this trauma is at the heart of their marital strife. It is why they left their farm and have grown apart.  But Maggie imposed an edict of silence on this exquisitely painful past. In contrast, Tressa slowly encourages her silent husband to tell—by inventing stories for him and letting him revise.  His adoptive uncle gives him a postage-stamp sized photograph of his nameless mother and grandmother; together they construct a story.
 

Maggie falls pregnant with Lukas’s baby. She goes away to have the child but Am cannot accept it. Compounding Maggie’s woe, she stays with Am—for all their strife, they are bound in their loss. She allows Tressa and Kenan to adopt her beloved baby.  

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