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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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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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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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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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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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 powerful—even disturbing—book examines the state of Louisiana, a home of the Tea Party, multiple polluting industries (oil, chemicals), environmental degradation, bad health for all, including children, and politics and economics that favor corporations not local business. 

In Part One, “The Great Paradox,” sociologist Hochschild interviews locals, attends civic events, sits in cafes, and listens to stories. Bit by bit she understands that right-leaning people believe in Republican notions of less governmental regulation despite suffering from the ill effects of living in “red” states, even individual counties, that are the most polluted in the U.S. (pp. 79-80).  She calls this disparity “the great paradox.” Locals call a portion of the Mississippi between Baton Rouge and New Orleans “Cancer Alley” (p. 62), but there is no popular demand for control of pollution.

Part Two, “The Social Terrain” discusses history. Earlier, Louisiana had economies of fishing and farming in tune with the landscape. New industries, including Big Oil changed all that, with promises of jobs and wealth for all—neither of which occurred, because oil is largely mechanized, and wealth went to corporations, some headquartered in other countries. Further, there was not just pollution but also large sinkholes and the BP Horizon blow-out of 2010. Problems of on-going pollution were ignored by the Press, especially Fox news, and the “Pulpit” (evangelistic Christianity) took the longer view, urging continued human exploitation of nature, patience for ultimate rewards, and the hope that “the rapture” would ultimately save the most worthy Christians.

Part Three is “The Deep Story and the People in it.” Hochschild formulates an unspoken but motivating narrative of values in Louisiana. This metaphoric story represents deep feelings, including urges for a success that is always thwarted. In the story, there is a long line of white, Christian people, mostly male, often with limited education, waiting in line patiently to climb a hill. On the other side is a good job, wealth, security, and reward for the long waiting. Tragically, there are “line cutters,” symbolized by President Obama and other blacks who had various preferments, but also women, also immigrants, also refugees, even the brown pelican, the Louisiana state bird that needs clean water and fish to survive. The people in line feel betrayed. Where is progress toward the American Dream? Fair play? There is hatred toward the line cutters, and loyalty toward the similar people in line and the industries that will save them. Pollution is unfortunate but a necessary cost.

“Going National” is the fourth part. Hochschild reviews the plantations of the South that not only brutalized slaves but also caused poor whites to move to non-productive land, while the wealthy always improved their lot. People from the North were (and are) suspect, with policies of integration, abortion, gun control, etc. The North cut in line. People in Louisiana became “strangers in their own land” and therefore glad to support not only Governor Bobby Jindal (who “left the state in shambles,” p. 232) but also Trump who would “make American great again.” The “strangers” have gone national in the U.S. and even in some other countries. Hochschild drafts two short “letters,” one to the liberal left and the other to the Louisiana people. She suggests that the two polarized groups have more in common than they currently imagine.  

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Taking Turns, Stories from HIV/AIDS Care Unit 371, is a graphic novel written and illustrated by nurse and artist, MK Czerwiec. In it, she details what it was like to be a nurse during the AIDs epidemic in Chicago in the 1990s. The book, however, is much more than a story about AIDS care during that time. Czerweic tackles patient/provider relationships, boundaries, hospital struggles, the role of art in medicine and healing, but most profoundly: death and dying. 

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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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