Showing 11 - 20 of 849 annotations tagged with the keyword "Patient Experience"

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.

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The Black Monk

Tibaldo-Bongiorno, Marylou

Last Updated: Feb-20-2018
Annotated by:
Glass, Guy

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

As the film opens, George Anderson tells us he has been advised to treat his anxiety by going “to some island to rest.” We see him arrive by ferry in Staten Island where he has arranged to spend several weeks at the beautiful home of his father’s best friend.  There, he renews his friendship with the friend’s daughter, Maggie.  We discover that George, a filmmaker, dropped out of medical school, and that Maggie is now a doctor.  We learn from the start that, though they have not seen each other for ten years, there is a longstanding mutual romantic attraction.   

One day, while walking around the house’s lush gardens, George suddenly and improbably sees a monk.  We are made to understand this is not the first time this has occurred, although at this stage George still recognizes it as a “mirage.” However, when the monk foretells a “grand brilliant future” for George and entrusts him with a divine mission, George is inspired.  He becomes obsessed with attending church, and we learn he has not been sleeping.  In his religious fervor he calls Maggie “disgusting” because she performs abortions.
 

Maggie becomes aware that something is not quite right.  We learn too that George enlisted in the army and resigned under suspicious circumstances. Other details about his past are mysterious.  The relationship between George and Maggie intensifies. Meanwhile, a friend warns Maggie that she has witnessed George saying peculiar things about a monk and smiling inappropriately.  Finally, in Maggie’s bedroom, George has a full-fledged psychotic episode as he hallucinates the monk in front of her.  She accuses him of “becoming schizophrenic,” and begs him to see a psychiatrist.  He responds by accusing her of trying to drain him of his inspiration, packs up his belongings, and, despite her entreaties, leaves.    

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Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

The narrator tracks a hypothetical week in the life and work of a psychiatrist in a major Canadian hospital through the stories of individual patients, some of whom were willing to be identified by name.   

The book opens with “they are us” and the shocking discovery that a patient whose life has been ruined by mental illness is a medical school classmate.  

Other patients have been followed for many years—a woman with eating disorder, a man with bipolar disease, another with schizophrenia. A new patient with intractable depression finally agrees to electroshock therapy, and the first treatment is described. The painful duty of making an involuntary admission pales in contrast to the devastation of losing a patient to suicide.  

Goldbloom’s personal life, opinions, and worries are woven throughout with frank honesty. His mother’s metastatic brain tumor sparks the associated intimations of his own advancing age and mortality.  His genuine fascination with and appreciation of the effective modalities now available are matched by his frustration over how they are beyond reach of far too many because of the stigma that is still attached to mental illness and the lack of resources and political will to make them available.

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Spy of the First Person

Shepard, Sam

Last Updated: Jan-30-2018
Annotated by:
Glass, Guy

Primary Category: Literature / Fiction

Genre: Memoir

Summary:

Spy of the First Person is a short semi-autobiographical narrative about a man with a debilitating condition.  He spends most of his time sitting in a wheelchair on his porch, goes for tests to the Arizona campus of the Mayo Clinic, and has a “handicapped sign hanging from the rearview mirror of his car” (p. 15). The man’s illness is unnamed, but we learn that his motor skills are grossly impaired: “His hands and arms don’t work much.  He uses his legs, his knees, his thighs, to bring his arms and hands to his face in order to be able to eat his cheese and crackers” (ibid).   

The story is told from various, shifting points of view.  At times we are in the head of the protagonist.  At other times, the perspective is that of a nosy neighbor who peers at the sick man through binoculars, hence the book’s title. There is a parallel narrative about an elderly couple and the wife’s gradual decline in health.  The Southwest plays such an important role here one might even say that it too is a character. 
 

There are also frequent shifts of tense.  It is not always clear whether we are in the past or present.  We alternate between the central character’s fantasies, memories, and observations. The effect of intertwining voices and tenses is reinforced by the brevity of the chapters, many no longer than a paragraph.  The overall impression is that while he may no longer have full control over his body, the man has retained an active (one might say overactive) mind.
 

Spy of the First Person
concludes as the man’s children take him to a Mexican restaurant.  The vivid description of a meal shared with his loved ones provides a sharp contrast to the inner thoughts that provide the bulk of this book.

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Calcedonies

Nisker, Jeffrey

Last Updated: Jan-17-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Plays

Genre: Play

Summary:

The play has two characters: Ruth and Friend (who is a male doctor).Ruth is an engaging, straight-talking quadriplegic who can zip and dance with her chin-operated wheelchair and takes delight in terrorizing medical staff both physically and verbally. She wants to write poetry and is waiting for a device to make it possible for her to use a computer. She keeps developing bedsores that threaten her life and require long admissions to the hospital before they will heal. She desperately wants to live no matter what happens, as she feels that having no mind would be worse than having no body.Friend is a male doctor with children who is ashamed of having examined her while she was unaware. Burdened with his guilt, he asks to be her “friend.” Ruth is skeptical and runs circles around him, but eventually comes to trust him and believe in his sincerity.She makes him a witness to her advance directive to instigate all heroic measures, as she is afraid of the kindly "ethical" and cost-effective arguments not to treat the disabled. But Ruth dies horribly from sepsis, and Friend is helpless to prevent it. She never obtains the device that would have allowed her to put her poems into printed words.

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Patiently Waiting For…

Nisker, Jeffrey

Last Updated: Jan-17-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

An artist, Ruth, lives with quadriplegia and manages to drive (and dance) with a special wheelchair that she controls with her chin. She also enjoys terrorizing doctors in the hospital corridors, where she is seen on a regular basis because of frequent bouts of infected bedsores. She has a new computer and is “patiently waiting for” a biomedical engineer to set it up to manage, like her chair, with her chin. She wants to write, to draw, to create. But the wait list is long, technicians scarce, and every candidate deserving.

On one of her admissions, Ruth meets the physician-narrator who is appalled by a medical resident’s lack of empathy in relating her case as if she were not present. Distressed by the encounter, the doctor is all the more disturbed when he notices that Ruth’s birth date is the same as his own.

He tries to make it up to her by withdrawing from her care in order to be her “friend,” one who tries to understand and will defend her strong desire to live despite her disability. Driven by curiosity about her past, her sharp wit, and how she faces each day, the doctor never quite achieves his goal and constantly feels guilty for letting her down as an advocate and a friend, and possibly also for being able-bodied himself.  He never visited her in her group home, and when she comes to hospital in florid sepsis, he is unable to prevent his colleagues from letting nature take its course. His own bout with severe illness, possibly MS—more likely a stroke--resonates with Ruth’s plight. Long after her death, he can imagine the acid remarks that she would make about his foibles.

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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. 

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Summary:

Dr. Monika Renz’s work with dying patients is unusual if not unique in the way she appropriates and applies insights from Jungian depth psychology, practices available in patients’ faith traditions, and musically guided meditation to invite and support the spiritual experiences that so often come, bidden or unbidden, near the end of life.  An experienced oncologist, Dr. Renz offers carefully amassed data to support her advocacy of focused practices of spiritual care as a dimension of palliative care, but is also quite comfortable with the fact that “neither the frequency nor the visible effects of experiences of the transcendent prove that such experience is an expression of grace” because “unverifiability is intrinsic to grace.”  Still, her long experience leads her to assert not only that “grace” can be a useful, practical, operative word for what professional caregivers may witness and mediate but also that affirmation and support of patients’ spiritual, religious, or transcendent experiences in the course of dying can amplify and multiply moments of grace, which manifest as sudden, deep peace in the very midst of pain, profound acceptance, openness to reconciliations, or significant awakenings from torpor that allow needed moments of closure with loved ones.  Describing herself as “an open-minded religious person and a practicing Christian,” she reminds readers that God is a loanword, whose basic form in Germanic was gaudam, a neutral participle.  Depending on the Indo-Germanic root, the word means “the called upon” or “the one sacrificed to . . . .”  Openness to the divine in both patients and caregivers, Dr. Renz argues, can and does make end-of-life care a shared journey of discovery and offer everyone involved a valuable reminder that medicine is practiced, always, at the threshold of mystery.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Victoria Sweet describes her training in medical school, residency, and work in various clinics and hospitals. From all of these she forms her own sense of what medical care should include: “Slow Medicine” that uses, ironically, the best aspects of today’s “Fast” medicine.   

Her dramatic “Introduction: Medicine Without a Soul” describes poor—even dangerous—care given to her elderly father at a hospital. An experienced physician, she calls Hospice and saves him from a “Death Express” the hospital has “quality-assured” (pp. 6, 8). 
 
The book continues with 16 chapters in chronological order. The first ten describe Sweet from a late ‘60s Stanford undergrad and “a sort of hippie” (p.14), next a learner of “facts” in preclinical studies at Harvard, plus the clinical rotations (including Psychiatry, Internal Medicine, Pediatrics, and electives), then an internship as a doctor and her work in various clinics and hospitals. Throughout she’s collecting skills, concepts, even philosophies (Jung, feminism, Chinese chi, value of stories). She also describes particular patients important to her learning. She dislikes “just good enough” medicine at the VA (p. 95), “unapologetic budgetarianism” (p 141), medicine that is reductive and uncaring, and futile care for dying patients.  

Halfway through, we find an “Intermission: In which Fast Medicine and Slow Medicine Come Together.” With a year off, Sweet signs on as physician for a trekking group headed for Nepal. Unexpectedly, she treats an Englishman in the Himalayas. Returning home, she treats a man whose pulse is declining and rides a helicopter with him to a hospital. She realizes that she can take on the full responsibility of being a doctor, including when to use Fast medicine and when to use Slow.  

The following chapters deal with the 1980s emergence of AIDS, a hand injury to Sweet (she sees herself as “a wounded healer,” p. 182), her new understanding of medicine as “A Craft, A Science, and an Art” (Chapter 12) and conflicts between medical care and economics-driven medicine (“checked boxes,” administrators, quality assurance, even outright corruption).  She scorns use of the labels “health-care providers” and “health-care consumers” (p. 211) and discovers Hildegard of Bingen’s medieval vision of medicine. She works for 20 years at Laguna Honda, the topic of her earlier book God’s Hotel (2012). Chapter 16 closes the book with “A Slow Medicine Manifesto.”  

Sweet pays tribute to her teachers, both in a dedication to the book, and throughout the pages: professors, preceptors, nurses—especially a series of Irish Kathleens—and patients. There are some 20 case studies of patients throughout the book, their medical dilemmas, their personalities, and Sweet’s Slow Medicine that involves creating a healing relationship with them, finding the right path for treatment, even watching and waiting.

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Plaintive Music

Domen, Ron

Last Updated: Dec-05-2017
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Physician Ron Domen's first full-length poetry collection, "Plaintive Music," deserves, and requires, close and attentive reading. In these 47 poems, Domen favors short lines and keen attention to both sound and image.   

The collection begins with the poet's observations of nature, primarily celebratory poems with lush descriptions and musical language, including poetic tributes to  artist Charles Burchfield (pp. 1-6) and to Domen's father (pp.8-9). 

Human life is often considered through the lens of woods and birds, gray slate and rain, naturally occurring elements that lead to memories of family and place ("Wooden Ties" p. 10 and "Cutting Wood with my Son" p. 14). Domen's images, which are rich and exact, often reflect his physician training and experiences.  Consider these lines from "Woodturner" (p. 12).  The poet is working a lathe, shaping a birch log into a bowl until "the white / grain streaked blue and brown / with minerals nursed from the earth / glows like the veined translucent / skin of a newborn child."

The middle section of "Plaintive Music" includes poems that examine the many facets of the poet's experiences as a physician, beginning with the wonderful "Studying Medicine in Guadalajara, Mexico: 1971-1975" (pp 17-22). 

To read this powerful poem is to be there, driving to "the Queen City" five thousand feet high / in the Valley of Altemajac south / of the Tropic of Cancer" (p. 18), witnessing the lack of sophisticated cures ("No oxygen or drugs or IVs / and no machines to shock the heart / back to life only bare hands / pushed on his chest . . . " p. 19), "going door to door / to find the sick" (p. 20), and dissecting corpses pulled from a formaldehyde tank ("and each day scraped / and peeled away more flesh until nothing / was left to dissect and only / the bones remained" p. 22).  

This poem is followed by a long poetic prose statement, "Belated Letter to a Mother," in which the narrator recalls a night thirty years ago when, as an internal medicine resident, he was called upon to care for a battered child and give witness to the complexities of human frailty. Embedded in the letter are a few lines that perfectly describe the role of the caregiver: "That sometimes all we can do is what the poet does-- "to see, to hear, to feel-- and more times than not, it is enough" (p. 25).  

Poems on pages 17-36 especially gain power from the poet-physician's point of view.  Final poems move again into the realm of nature, but here the themes are darker, reflecting the wages of learning to heal:

"I studied in medical school to learn / what actually lies under thick / layers of skin and how the heart / hides behind the breastplate" ("Armadillo" p. 33).  

This collection comes full circle, beginning in "a time when flowers / had thoughts and the hills heard / turtles speak of the brilliant colors / of things growing" ("Beaver Creek" p. 1) and ending in winter, the darkest season, but not without its own beauty: "Snow begins to fall once again / on this windswept knoll along / the Lehigh River where the black // bony trees and dark gravestones / dot the slope of Nisky Hill" ("On Buying Our Gravesite" p. 61).

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