Showing 1 - 10 of 932 annotations tagged with the keyword "Suffering"

Summary:

Citing numerous studies that might be surprising to both lay and professional readers, Dr. Rakel makes a compelling case for the efficacy of empathic, compassionate, connective behavior in medical care.  Words, touch, body language, and open-ended questions are some of the ways caregivers communicate compassion, and they have been shown repeatedly to make significant differences in the rate of healing. The first half of the book develops the implications of these claims; the second half offers instruction and insight about how physicians and other caregivers can cultivate practices of compassion that make them better at what they do.  

View full annotation

Summary:

This is an important contribution that analyzes, critiques, and aims to correct structural inequalities (racism, sexism, capitalism) that influence contemporary medicine, with particular attention to the technical influences of computers, “big data,” and underlying values of neoliberalism, such as individualism, exceptionalism, capacity, and progress through innovation.  

Introduction: Theorizing Communicative Biocapitalism
Banner writes, “biocapitalism is comprised by the new economies and industries that generate value out of parts of human bodies” (p. 12). Parts include DNA, ova, and organs, but there’s also data from medical care, where patients are reduced to their physical bodies and/or to their “digital status” in medical records, research, even personal information volunteered on the Web, all which is indicated by the term “communicative.” As an example, Banner cites the large realm of patient on-line groups that are exploited by large companies as free labor, thus reducing the voice of the patients. Approaches of narrative medicine and medical humanities have not dealt with digital health, market forces, and the implied power relationships. Perhaps the new subfield of health humanities has promise to do so, if not also captive to “the logic of the market” (p. 17).   

Ch. 1. Structural Racism and Practices of Reading in the Medical Humanities
Banner writes, “Medical racism is a product of structural and institutional racism” (p. 25). She finds that current approaches from interpretive reading are insufficient because “the field’s whiteness has contoured its hermeneutics” (p. 25). Instead of the “reading-for-empathy” model, we should read for structures of racism, sexism, privilege, as well as economic and political inequality. She illustrates such reading with texts by Junot Dìaz, Audre Lourde, and Anatole Broyard.  

Ch. 2. The Voice of the Patient in Communicative Biocapitalism
 Patients have flocked to networking websites, voluntarily posting much personal information. Banner analyzes how technocapitalists mine these sites for data to use or sell. Patients’ information, given voluntarily, amounts to free labor and, even, work-arounds for companies that avoid expensive double-blind controlled studies. Rhetoric for these sites speak misleadingly of the “patient voice,” “stakeholder,” or “story sharing” and hide the exploitation involved. The chapter is specific for websites, drugs, and drug companies.  
Banner discusses (1) the “feminized labor” involved with sites for fibromyalgia and chronic fatigue syndrome (both “contested diagnoses”) and (2), more abstractly, the medicalization of the clinical gaze on patients who participate in websites and yearn for “an imagined state of purity,” and/or “an ableist vision of norms and reparative medicine” (p. 61). Overall, the digitalized-patient voice is colonized by forces of whiteness and should be decolonized. She discusses writing by Octavia Butler and Linda Hogan, both women of color.

Ch. 3. Capacity and the Productive Subject of Digital Health
This fascinating chapter describes and critiques “digital self-tracking,” or the use of devices such as Fit-Bits that help create and maintain the so-called “Quantified Self” (or “QS”). Banner finds this fad within the tradition of the Enlightenment (Ben Franklin) so that “exact science” may “optimize” individuals by being “responsibilitized” in a “self-sovereign” way. QS users understand that “Everything is data” (p. 83). She argues that this trend emphasizes “masculine objectivity” while “disavowing debility” (p. 85). Collected data may contribute to a “worried well” status or conditions of “precarity” or “misfitting.” She writes, “QS practice remains an inscription of the self as a self-surveillor, engaged in masculinized practices of neoliberal self-management” (p. 91). She discusses the technologies of the devices Scanadu, Melon, and Scarab. She provides and interprets photos of visual arts representations by Laurie Frick, who is a “self-tracker.”  

Ch. 4. Algorithms, the Attention Economy, and the Breast Cancer Narrative
Banner discusses Google Analytics, later Alphabet, which includes Calico and Verily, which have partnered with pharmaceutical companies. Such combinations of algorithms, capitalism, and media aim to capture the public’s attention, especially online. Messaging about breast cancer becomes reductive, emphasizing medical solutions, not prevention, and it avoids discussion of causes such as environmental pollution. Some critics decry “pinkification” of breast cancer. Public stories, such as Angelina Jolie’s, emphasize individual empowerment, a “hegemonic construction of illness”’ (p. 112), and these are amplified by mass media, both print and electronic. More diverse messages would value “heterophily over homophily” (p.121).   

Ch. 5.  Against the Empathy Hypothesis
Drawing on several commentators, Banner critiques the notion of empathy as a goal for caregivers as condescending to the patient and suspect when allied with productivity and efficiency for institutions. Further, the notion of “resilience” (in a “bleed” of neoliberal rhetoric into health humanities) has been misused in applied literature, parallel to notions of self-help and self-management. Some hermeneutics still support values of “state and capitalism” and ignore writers of color. Banner discusses the work of African-American poet Claudia Rankine, some of whose work is “postlyric,” and J. M. W. Turner’s painting “The Slave Ship” that illustrates “necropolitics.”  

Conclusion
Throughout the book Banner illustrates reading “for structure” in her interpretation of texts and visual images but also in medical institutions and practices and, still further, in the enormous and pervasive world of government forms and programs, big data, computers, and beyond. She finds structures of capitalism, sexism, and neoliberalism within existing “heteropatriarchal, ableist, and racist frameworks” (p. 154) despite claims of neutrality. She urges medicine and the humanities to develop new methods. She mentions specific collectives and communities that now challenge such norms (such as Gynepunk and CureTogether), and she calls for thinkers in many disciplines to confront demeaning technology and to “engender spaces in which care is more just, and more humane” (p. 156).      

View full annotation

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Weeks after the birth of her child, the writer receives a phone call informing her that her mother, who has gone missing, has hanged herself.  This memoir, like others written in the aftermath of similar trauma, is an effort to make some sense of the mother’s mental illness and horrifying death. Unlike many others, though, it is the story of a family system—and to some extent a medical system—bewildered by an illness that, even if it carried known diagnostic labels, was hard to treat effectively and meaningfully.  The short chapters alternate three kinds of narrative:  in some the writer addresses her mother; in some she recalls scenes from her own childhood, plagued by a range of symptoms and illness, and her gradual awareness of her gifted mother’s pathological imagination; in some she reproduces the transcript of a video production her mother narrated entitled “The Art of Misdiagnosis” about her own and her daughters’ medical histories. Threaded among memories of her early life are those of her very present life with a husband, older children, a new baby, a beloved sister and a father who has also suffered the effects of the mother’s psychosis at close range.  

View full annotation

One Crimson Thread

O’Siadhail, Micheal

Last Updated: Apr-19-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

This collection of 150 sonnets takes us through the journey from the writer’s wife’s diagnosis with Parkinson’s, eventually complicated by dementia and overmedication, to her death and his early days of grieving.  Married for over 40 years and close companions, their successive separations deal new blows as they happen: She goes into skilled nursing care, gets lost in delusions, and becomes more frail and erratic, finally succumbs after a fall and a short period in a coma.  The writer draws on biblical metaphors and threads memories of their earlier life together in fleeting images so that the reader is left to infer from glimpses a rich and happy marriage that, he reflects, prepared them—but not enough—for this going.  

View full annotation

Every Note Played

Genova, Lisa

Last Updated: Apr-10-2018

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This is a dramatic and moving story about a concert pianist who, at 45 years of age, suddenly and inexplicably, has ALS, and also equally about his ex-wife Karina, who takes on his care throughout his slow, inevitable, and lethal decline. As many readers know, ALS (Amyotrophic Lateral Sclerosis). or “Lou Gherig’s disease,” hardens the motor nerves so that, progressively, there is no more control of muscles throughout the body. Not many readers know, however, the difficult path such patients and their families must pursue. This sensitive and detailed novel takes readers powerfully into the world of ALS, a disease for which there is today no cure.                                                                                      

Obsessed with his musical career and international travel, Richard has paid little attention to Karina and their daughter, Grace, and he has had affairs with other women. Karina has deceived him about her inability to bear more children. Because of their move from New York City to Boston, Karina, also a gifted pianist, has lost a possible career in jazz and now gives piano lessons to unpromising students. 

The first several chapters alternate between Richard and Karina. Although divorced from him, she brings him, now an ALS patient, back into the home they once shared. Various nurses, doctors, and other specialists try to explain the difficult future that includes certain loss of body functions, but Richard and Karina are slow to comprehend these. Despite their denial, they are forced to come to terms with Richard’s progressive decline and, finally, death.     
          
Richard loses the ability to use his hands, then his arms. He needs a special machine to breathe at night. Soon he has paid caregivers for parts of the day; these include a cheery and admirable man named Bill. No longer able to eat, Richard has a feeding tube. Later he needs a hospital bed. Also a Head Mouse to work his computer. Also an elaborate wheelchair. With unresolved issues in the past, Richard and Karina are emotionally apart—even with feelings of hate and rage—even while she cares for him.  

Karina’s walking partner Elise, a teacher, helps her stay sane. Karina travels to New Orleans with Elise and her class and finds her interest in jazz reawakened. No longer able to breathe even with assistance, should Richard go on to mechanical ventilation that will require 24-hour care at enormous expense? A choice is made. Richard dies, with various resolutions before and after his death.  

View full annotation

The Dark Flood Rises

Drabble, Margaret

Last Updated: Apr-09-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Fran, an aging but energetic expert on elder housing, drives around the English countryside visiting facilities and also friends and family.  She, herself, is not at all ready to go gentle into the good night so many others are facing.  But everywhere she encounters reminders of mortality--her son's fiancee suddenly dies; an old friend is dying a lingering death of cancer; others in her circle of family and friends are facing their own or others' mortality in various ways, including natural disasters like earthquake and flood.  The episodic story takes place in England and in the Canary Islands; the large cast of characters are linked by intersecting stories and by their mortality, of which they, and the reader, are recurrently reminded.    

View full annotation

The River of Consciousness

Sacks, Oliver

Last Updated: Mar-01-2018

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Two weeks before his death in 2015, Sacks oversaw this collection of essays and charged Kate Edgar, Daniel Frank, and Bill Hayes to arrange its publication. The essays touch on various fields—evolution, botany, chemistry, medicine, neuroscience, and the arts, and focus on major figures such as Darwin, Freud, and William James. The major theme—as indicated by the volume’s title—is how minds (of humans, chimps, even jellyfish) interpret and remember what the senses perceive in normal and in limited states. While we read in the Foreword that “a number” of the pieces originally appeared in The New York Review of Books, there are no citations for dates and places.  

“Darwin and the Meaning of Flowers”: Sacks describes Darwin’s research with flowers that support evolution; flowing plants display qualities of sensitivity to “contact, pressure moisture, chemical gradients, etc” (p. 19). Sacks recalls the pleasures of investigating flowers as a youth in his London garden.  

“Speed” : Drawing on personal experience and a wide variety of anecdotes (including his encephalitic patients described in Awakenings), Sacks muses about mental perceptions, slow and fast, normal and drug-enhanced, dreams, and our ability to imagine “all speeds, all time” (p. 59).  

“Sentience: The Mental Lives of Plants and Worms”: Starting with Darwin and coming forward, Sacks discuss how worms, jellyfish, and even trees may be considered to exhibit “mind.” Near the end, we read, “if one allows that a dog may have consciousness of a significant and individual sort, one has to allow it for an octopus too” (p. 76).  
   
“The Other Road: Freud as Neurologist”: The opening paragraph ably sums up the essay. “Everyone knows Freud as the father of psychoanalysis, but relatively few know about the twenty years (from 1876 to 1896) when he was primarily a neurologist and anatomist; Freud himself rarely referred to them in later life. Yet his neurological life was the precursor to his psychoanalytic one, and perhaps an essential key to it (p. 79).   
   
The next three may be considered as a group because they deal with lapses or outright failures in perception, memory, or health. Because Sacks reports on his own life experience, these are the most personal.
“The Fallibility of Memory” describes Sacks’s memories of the bombing of London in the winter of 1940-41. It turns out that one memory, according to family members, is right, but the other is actually a version of a letter describing a bombing.

The essay continues to discuss such topics as false memories, auto-plagiarism, unconscious plagiarism, and fabulation. He concludes, “Our only truth is narrative truth, the stories we tell each other and ourselves—the stories we continually recategorize and refine” (p. 121). In a short piece, “Mishearings,” Sacks reports how his increasing deafness makes new (and sometimes hilarious) perceptions of spoken words.  

Surely the last written—and in many ways the most poignant—“A General Feeling of Disorder” discusses feelings of being ill. Sacks, at age 81, describes his metastatic liver cancer and, in detail, an arduous treatment. Although warned of weakness and pain, he writes of “a sort of negative orgasm of pain” and other disturbing side effects (pp. 155-59) in vivid detail.  

“The Creative Self” discusses forms of creativity including play, scholarship, unconscious borrowing, and subconscious insight. Sacks is less interested in a Freudian model than an evocation of “an entire hidden, creative self” (p. 144).            

The final two, “The River of Consciousness” and “Scotoma: Forgetting and Neglect in Science” deal with theories of how the mind works and, more collectively, how scientific breakthroughs occur. The former essay explores cinematic models for perception in James and Bergson and much later models of the 100 billion neurons of the brain working on networks, coalitions, or populations. He finds that a specific mechanism is unlikely to be found and, “Even the highest powers of art—whether in film or theater, or literary narrative—can only convey the faintest intimation of what human consciousness is really like” (p. 174).

In “Scotoma” (or “memory hole”), he looks at discoveries that were over-looked for many years . Later they were rediscovered as important for understanding various phenomena: Tourette’s syndrome, phantom limbs, and, his specialty, migraines.

View full annotation

Heartbeats

Dixon, Melvin

Last Updated: Mar-01-2018
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Melvin Dixon’s poem, “Heartbeats,” portrays the steady atrophy of someone suffering a fatal disease. The anonymous narrator first appears as healthy and vigorous:

“Work out. Ten Laps.
Chin ups. Look good.
Steam room.
Dress warm.
Call home.
Fresh air.
Eat right.
Rest well.
Sweetheart. Safe sex.”

An undisclosed illness takes hold and the narrator copes with the impacts of a life-threatening disease:

“Test blood.
Count cells.
Reds thin. Whites low.”

S/he calls home, diets, tries to calmly recuperate, and focuses on maintaining peace of mind, “Breathe in. Breathe out.” The reality of death, or “It,” cannot be ignored, “Today? Tonight? / It waits. For me.” Dixon uses wordplay for “sweetheart” to bookend the poem.
In the third stanza, the narrator affectionately addresses his/her lover as “Sweetheart”; but, through battling the illness and experiencing its withering effects, Dixon cleaves the word in two in the final stanza, imploring the body to withstand the disease: “Sweet heart. / Don’t stop.”

View full annotation

Life & Times of Michael K

Coetzee, J. M.

Last Updated: Jan-09-2018
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Fiction

Genre: Novel

Summary:

A civil war rages inexorably in J. M. Coetzee’s novel, Life & Times of Michael K. Details of the war are vague, but the fighting will determine whether “minorities will have a say in their destinies” (Coetzee 157). Riots splinter communities, peoples are displaced, the military patrols and slaughters, and prison camps are erected. The novel’s first half introduces an unlikely protagonist at the center of the bloody tumult: Michael K, a municipal gardener—a gentle “simpleton” with a harelip “curled like a snail’s foot”—who cares for his ailing mother in Cape Town (3). Sick and unable to work, K’s mother resolves to return to her birthplace and girlhood home, Prince Albert, a far-flung cluster of homesteads in the Karoo, where she hopes to convalesce peacefully. Their migration permits, however, never arrive, likely lost in the abyss of State bureaucracy. Gathering his mother and their few possessions in a makeshift wheelbarrow, K attempts the arduous journey anyway but the passage is thwarted by a government checkpoint. As his mother’s condition deteriorates, she is hospitalized and dies, her body cremated before K gives hospital officials consent.  

The novel’s lulling elliptical cycle pushes K along the currents of departure and circumvention, to capture and escape. Pressing on to Prince Albert where he will deliver his mother’s remains, K is arrested and incarcerated in a railcar where he and other prisoners remove landslide rubble from a remote part of the rail line. Released after finishing the labor, K arrives to Prince Albert where he settles on the property of the ramshackle homestead and begins contentedly scavenging. Far from the tremors of war, he hunts birds, nibbles roots and bulbs, turns over rocks for grubs, drinks from streams, and, in a fit of wild hunger, drowns and slaughters a wild goat. All the while he finds a package of pumpkin and melon seeds that for the rest of his time on the property he will sedulously plant and water— “[t]his was the beginning of his life as a cultivator” (59). Immersed in this blanched world, at the center of its arid winds and mineral expanses, K devotedly coaxes his mean crop to life. But the war encroaches on K’s hiding place and he absconds to a mountain cave where he hides, and nearly starves.  

The stillness, silence, and sunlight of the Karoo seep into K’s bones: “If I were cut, he thought, holding his wrists out, looking at his wrists, the blood would no longer gush from me but seep, and after a little seeping dry and heal. I am becoming smaller and harder and drier every day” (67). Imperceptibly, K becomes the ephemeral ‘stuff’ of this harsh land: “He thought of himself not as something heavy that left tracks behind it, but if anything as a speck upon the surface on an earth too deeply asleep to notice the scratch of ant-feet, the rasp of butterfly teeth, the tumbling of dust” (97). K is shortly captured by the military and forced into a resettlement camp. Through the elliptical current of the novel, he escapes and returns to the Prince Albert homestead, where he finds his crop trampled. He nourishes the vines back to life and, in a moment of lonely exaltation, grills pumpkin flesh: “All that remains is to be a tender of the soil. […] He chewed with tears of joy in his eyes” (113). What K seeks, or what is seeking him, is a life of solitude, remote from peril and unrest, living in quiet reciprocity with the earth, exercising simple cultivation—a skill conspicuously anachronistic (but universally essential) in an age marked by the depravities of war.  

Wringing nourishment from veld-grown pumpkins, however, leaves K famished, and winds and squalls gut his makeshift shanty. Soon K is picked up, again, by a military patrol (he is suspected of abetting rebels camping in the mountains) that consigns him to a government hospital. The novel’s latter half is narrated by the hospital’s medical officer, a caring man who, doubtful of the war’s objectives, takes special interest in K’s recovery. By now, severely malnourished, K resembles “someone out of Dachau” (146). The medical officer is baffled by K, not for his uncooperative responses nor refusal to eat hospital food, but because of his status as a kind of ahistorical oddity in a time of modern warfare: “a human soul above and beneath classification, a soul blessedly untouched by doctrine, untouched by history, a soul stirring its wings within that stiff sarcophagus […] a creature left over from an earlier age, like a coelacanth or the last man to speak Yaqui” (151). The medical officer realizes K’s condition lies beyond simple diagnosis; rather, K’s body craves “a different kind of food, food that no camp could supply” (163). Sometime in the night, K vanishes from the hospital with his packet of pumpkin seeds, moving toward another remote patch of earth to cultivate.

View full annotation

Stitches

Small, David

Last Updated: Dec-28-2017
Annotated by:
Natter, Michael

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Stitches is a beautifully crafted graphic novel by award winning writer and illustrator David Small. The memoir chronicles Smalls’ life with chronic illness, focusing on his experience as a child and adolescent with cancer in the setting of an abusive upbringing. We learn through the eyes of a child what being a patient is like, and how, despite all odds Small was able to use art as a way to make a normal life for himself. 

View full annotation