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.  

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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.    

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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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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.”

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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.

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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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These poems are not a cancer chronicle, but the experience of living with cancer is threaded through them in a way that illustrates beautifully how awareness of illness may permeate daily life, but is foregrounded and backgrounded, reshaped and revisited in shifting ways as it takes its course.  They encompass moments in family life, moments in the hospital, moments of spiritual longing and awareness of loss.  Together they offer a record of accommodation, acclimation, and complex acceptance.

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This Side of Doctoring is an anthology published in 2002 about the experiences of women in medicine. While the essays span multiple centuries, most are from the past 50 years. They reflect on a multitude of stages in the authors’ personal and professional lives. In 344 pages divided into twelve sections, including "Early Pioneers," "Life in the Trenches," and "Mothering and Doctoring," the 146 authors recount - in excerpts from published memoirs, previously published and unpublished essays, poems and other writings, many of them composed solely for this collection - what it was then and what it was in 2002 to be a woman becoming a doctor in the U.S.. All but a handful of the authors are physicians or surgeons. There is a heavy representation from institutions on both coasts, especially the Northeast. Four men were invited to reflect on being married to physician wives. There is one anonymous essay concerning sexual harassment and a final essay from a mother and daughter, both physicians.   Beginning with the first American female physicians in the mid-19th century, like historic ground-breakers Elizabeth Blackwell and Mary Putnam Jacobi, the anthology proceeds through the phases of medical school, residency, early and mid-careers, up to reflections from older physicians on a life spent in medicine. Many of the authors have names well known in the medical humanities, including Marcia Angell, Leon Eisenberg, Perri Klass, Danielle Ofri, Audrey Shafer, and Marjorie Spurrier Sirridge, to mention a few. 

The essays and poems and letters have, as a partial listing, the following subjects: family influences in becoming a physician; professional friendships; marriage; children and their impact on a woman’s career in medicine; the decision not to have children; ill family members; illness as a physician; establishing one's sexuality as a physician; struggles with male physicians and their egos; mentors, both female and male; memorable patients (often terminal or dying); the life of a wife-physician, or mother-physician; the guilt and sacrifice that accompany such a dual life; the importance - and easy loss - of personal time or what internist Catherine Chang calls “self-care” (page 334).   The anthology also touches on how women have changed the practice of medicine in various ways, prompted by the growing realization, as family practice physician Alison Moll puts it, "that I didn't have to practice in the traditional way" (page 185)  The authors write about the wisdom of setting limits; training or working part-time or sharing a position with another woman; and the constant face-off with decisions, especially those not normally confronting an American man becoming a doctor. 
One conclusion is evident before the reader is halfway through the book: there are many approaches to becoming a fulfilled female physician including finding one’s identity in the field.  Implicit in most of the essays and writings is the lament from obstetrician-gynecologist Gayle Shore Mayer: "Where is the self ? There are pieces of me everywhere", (page 275) recalling a similar cry from Virginia Woolf's Orlando, another essentially female soul trying to find what Richard Selzer has called "The Exact Location of the Soul".  Several authors discover that female physicians have unique gifts to offer their patients. As internist Rebekah Wang-Cheng writes, “I am a better physician because I am a mother, and I know because of my experiences as a physician that I am a better mother.” (page 151) 

There are sections at the end devoted to a glossary for the lay reader, resources for women (as of 2002), and generous notes about the contributors (which section also serves as a useful index of each's contributions).

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Several threads tie together this ambitious, beautifully digressive reflection on eros and logos in the experience of illness and the conduct of medicine and health care, which takes into account what a complex striation of cultural legacies, social and political pressures, and beliefs go into both.  Framing his reflections on the role of unknowing, altered states, inexplicable events, desire, hope, love, and mystery in illness and healing is a fragmented, poignant narrative of Morris’s own experience of watching his wife succumb to the ravages of early Alzheimer’s. 

Her disease is one that leads both professional and intimate caregivers to the same question:  what do you do when there’s nothing left for scientific medicine to do?  Conversations about palliative care are broadening, he points out, and medical education is making more room for the kind of reflection the arts invite and for spirituality as a dimension of illness experience and caregiving.  Guidance in such explorations can be found in ancient literature, especially in the archetypes provided by the Greek and Roman myths.  Morris makes astute and helpful use of his own considerable training in literary studies to provide examples of how eros and logos—complementary contraries—have been conceived and embodied in a somewhat polarized culture and how incomplete health care is when it doesn’t foster the capacity to dwell in and with unknowing, possibility, indeterminacy, and mystery.  Knowing the limits of scientific medicine may, paradoxically, make it better.  Certainly it can help keep our engagements with illness—always relational, always disruptive, most often to some degree bewildering—humane.

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In Karel Schoeman’s novel, Another Country, Versluis, an affluent and educated Dutchman diagnosed with tuberculosis, immigrates to Bloemfontein, South Africa, to convalesce. Bloemfontein in the 1870s, located within the remote interior of the Free State, is little more than a dusty outpost populated by first- and second-generation German, Dutch, and English inhabitants. As the novel quietly unfolds, Versluis’s tenuous recovery, and subsequent regression, are punctuated by his observations of the community’s struggle to both preserve and break from European culture to form a distinct South African identity.   Whereas Versluis cherishes his familiar Dutch customs and courtesies, here, in Bloemfontein, he must adapt to the community’s irregularities and gaucheries. Nevertheless, he is regularly astonished by the town’s culture of insouciance—a lack of punctuality, etiquette, and municipal orderliness; its sometimes frowzy fashions; disregard for conservatism; and ease among poverty, violence, and isolation. His observations, however, are not the mordancies of a snobbish European, but a wrestling with his sense of profound alienation as a precariously ill man living abroad in a strange country.   Informed that his case is terminal, Versluis resigns himself to the inescapable state of his life. With fresh sensibility, he embraces life in Bloemfontein, becoming more receptive to its people and daily life. Particularly, for Versluis, the veld—with its rocks, dust, succulents, and solitude—takes on a potent and portentous symbolism, as an immutable and implacable presence (and emptiness), much akin to the illness that is killing him. Within this ponderous flux of change, of a gradually evolving Africa, Versluis peacefully comes to terms with his imminent death.

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