Summary:

In 1951, Eileen Tumulty, the novel’s main character, was nine years old and living with her Irish immigrant parents in the Woodside section of Queens, New York. The novel follows Eileen straight through the next 60 years, but concentrates on the years covering the time of her husband’s Alzheimer’s disease.    

Eileen was forced to learn how to manage a household at a very young age when first her mother was kept in a hospital for 8 months after a hysterectomy, and then again when her mother became incapacitated by alcoholism. Eileen had reason to think this life was her destiny until she accompanied her father to a better part of Queens. There she saw “places…that contained more happiness than ordinary places did.” She concluded, “unless you knew that such places existed, you might be content to stay where you were.” (pp. 15-16) Eileen’s ambition was ignited. While continuing to manage the household and care for her mother, she does well in school, becomes a nurse, and eventually moves up the nursing management at various hospitals.  

Eileen’s ambitions encompassed ideas on her eventual mate. She chooses Ed Leary despite hoping for someone who was not quite so Irish and not quite so much of the same place. Ed was a promising neuroscience graduate student who she thought could be a high achiever with the right motivation: “If there was anything she could help him with, it was thinking big.” (p. 97) Her motivation was not enough and neither were the many offers he received from life science companies. He became a professor at a local community college. He had a passion for teaching students who attend community colleges and he could never see himself anywhere else—for love or money. Ed’s intransigence frustrated Eileen, but she accepted it and plowed ahead. She studied the possible ways of escaping the old neighborhood and also delivered a son she thought she’d never have after years of futile efforts.  

It doesn’t go smoothly. While she is getting surer of where they would go, Ed begins to exhibit disconcerting behaviors. For them to live in Bronxville, Eileen will have to accept a house that needs a lot of money and attention to rehabilitate. The remainder of the story is about how Eileen simultaneously manages Ed’s rapid deterioration from what eventually is diagnosed as Alzheimer’s disease, her job requirements, and a son progressing from adolescence through college.  

We Are Not Ourselves touches on many of the aspects involved in prolonged illness including the daily struggles managing the care of someone with progressive dementia, complexities of health care delivery systems, frustrations with byzantine health care coverage, and threats to relationships among the individual family members with one another, and the grace that can manifest during the bleakest moments. The author does not dwell on all these issues, but gives them enough attention so that their effects will be recognizable to many readers who have experienced them. In doing so, he was able to draw from his own experiences with his father who was stricken with early onset Alzheimer’s disease.

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The play is set in 1947 (the year it premiered) in New Orleans. Having lost their ancestral Mississippi home to creditors, Blanche Dubois arrives at the shabby French Quarter flat of her sister Stella. When we first meet Blanche she explains she is on a leave of absence from teaching high school English on account of her “nerves.” From her first meeting with Stella’s husband Stanley Kowalski, a World War II vet, we detect class conflict and sexual tension between the two of them. As Blanche’s visit becomes more and more protracted, Stanley becomes increasingly suspicious of her motives and background. Meanwhile, she begins to date Mitch, one of Stanley’s poker buddies. Gradually we learn more about Blanche’s checkered past. She was once married to a young man who committed suicide after she discovered him in a sexual encounter with another man. Stanley uncovers rumors that she was fired from her teaching job for having sex with a student. As the play progresses, fueled by her surreptitious drinking, Blanche’s mental state unravels. When Stanley warns Mitch about Blanche’s notorious reputation, Mitch rejects her.  Adding insult to injury, while Stella is having a baby, Stanley rapes his sister-in-law. Blanche’s emotional deterioration is complete. In the final scene, a doctor and nurse arrive to take Blanche to a mental hospital. She initially resists them, but when the doctor helps her up she willingly surrenders: “Whoever you are - I have always depended on the kindness of strangers"(p. 178).

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The story of The Heart is a simple, linear structure.  A car accident renders a young Frenchman, Simon, brain-dead. A medical team proposes harvesting organs, and his parents, after some turmoil, agree. That’s the first half of the book, the provenance of this specific heart. The second half describes its delivery for transplantation. Administrators find recipients, one of them a woman in Paris. Simon’s heart is transported there by plane and sewn into her chest. All this in 24 hours.  
            
The narration is complex, with flashbacks, overlapping times, and literary art that is compelling. There are 28 sections to the story but without numbers or chapter headings, and these are often broken up into half a dozen shorter sections. We have an impression of stroboscopic flashes on the action, with high intensity focus. These create a mosaic that we assemble into dramatic pictures. Even major characters arrive without names, and we soon figure them out.    

Simon.  He’s called the donor, although he had no choice in the matter. At 19 years of age he’s trying to find a path in life.  A Maori tattoo is a symbol for that search. He has a girlfriend, Juliette. He fades away as a character (except in others’ memories) and his heart takes center stage.  

Marianne and Sean, Simon’s parents.  Her emotions, as we would expect, range widely, especially during discussion of whether Simon’s organs can be transplanted. Father Sean has a Polynesian origin and cultural heritage.

Pierre Révol, Thomas Rémige, and Cordélia Owl are respectively the ICU physician, nurse, and the transplant coordinator. These are vividly drawn, with unusual qualities. Skilled professionals, they are the team the supplies the heart.  

Marthe Carrare, Claire Méjan, and Virgilio Breva are a national administrator, the recipient, and a surgeon. Described in memorable language, they are the receiving team.              

The characters’ names give hints of de Kerangal’s range. Since the 1789 Revolution Marianne has been a well-known French national symbol for common people and democracy, but Virgilio Breva is from Italy and Cordélia (recalling King Lear) Owl (as in wise?) has a grandmother from Bristol, England. We learn of personal habits regarding tobacco, peyote, sex, and singing. Medicine is part of a larger world of people of many sorts.              

Even minor characters, such as Simon’s girlfriend Juliette and other medical personnel are touching and memorable.              

These characters animate the story with their passion, mystery, even heroism. While we don’t know the final outcome of the implanted heart, the text shows the professionalism of the medical team, the French national system that evidently works, sensitive care of patients and families, and in the last pages, rituals of affirmation for medical art and for patients.              

There is richness in de Kerangal’s style. At times it is direct, reflecting the thoughts of characters. At times it is ornate, even baroque. She uses many images and metaphors, often with large, epic qualities. A very long sentence about the over-wrought parents describes them as “alone in the world, and exhaustion breaks over them like a tidal wave” (p. 141).  The style uses many similes, often with dramatic and unexpected comparisons. There are references to geology, astronomy, even American TV hospital drama. The style is at times lyric…we might say “operatic.”  One page about Cordélia is very, very funny.         
  
In a different tone, the details of medicine, law, and ethics are carefully presented, and visual imagery puts us in the hospital rooms, the OR, and crowded streets around a soccer game. Throughout it appears that translator Sam Taylor has done an admirable job.               

The text invites us to consider large visions of wholeness. All the major characters seek some comprehensive unity to their lives, and they avoid orthodoxies such as religion, patriotism, and economic gain. Sean has his Polynesian heritage and boat-building passion, which he has shared with Simon. Cordélia, at 25, is an excellent nurse, wise beyond her years in some ways, but is as dazzled by a man as any teenaged girl. Nurse Rémige has his master’s in philosophy, loves the song of rare birds, and is, himself, a serious singer.  

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Jonathan Franzen tells the story of his father’s slow and inexorable decline from Alzheimer’s disease. His story is a familiar one, and one that millions of people can now tell: at first the initial odd behaviors and memory failures attributed to various causes other than dementia, then the diagnosis and medical interventions to stem the inevitable, and finally the inevitable. While Franzen also describes the toll his father’s dementia exacts on the immediate family—as well as some truths it uncovers about his parents’ marriage—he does not put a significant emphasis on family effects.  

Interwoven in Franzen’s recounting of his father’s plight are a few digressions on Alzheimer’s disease. In one he wonders, as many others have, about whether Alzheimer’s disease is more a medicalization of certain behaviors than the result of brain pathology, or otherwise just “ordinary mental illness being trendily misdiagnosed as Alzheimer’s.” (p. 19) In others, he briefly summarizes the well-known theory involving plaques and neurofibril tangles as a cause of Alzheimer’s, and thoughts on how memories form and work in the brain. In yet one other digression, Franzen reminds us that Alzheimer’s disease as originally described in 1906 was a rare type of dementia characterized by early onset in middle age and rapid progression. He further notes that it was not until the latter part of the 20th century when Alzheimer’s disease was tagged as the fifth leading cause of death and the disease of the century, and only through the efforts of a coalition comprising clinical scientists, politicians, and patient advocates. 

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This memoir of a life in medicine takes the writer from St. Louis to a Navajo reservation to Central America to the east coast and from urban hospitals to ill-equipped rural clinics. It offers a wide range of reflections on encounters with patients that widen and deepen his sense of calling and  understanding of what it means to do healing work.  He learns to listen to tribal elders, to what children communicate without words, to worried parents, and to his own intuition while calling on all the skills he acquired in a rigorous medical education.  Always drawn to writing, Volck takes his writing work (and play) as seriously as his medical practice, and muses on the role of writing in the medical life as he goes along.

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Paul Kalanithi, diagnosed with stage IV metastatic lung cancer when he was a neurosurgery resident at Stanford University, was faced with a decision. Should he truncate his career in neurosurgery in order to become a writer - a career he had always envisioned for himself after completing a couple of decades of neurosurgery practice? Married to Lucy Kalanithi, an internist he had met in medical school, Paul’s career and future had looked bright and promising. But as he entered his final year of a seven-year residency, symptoms of excruciating back pain and significant weight loss began. Garbed in a hospital gown, he examines his own CT scan – this is how we meet Paul at the beginning of the Prologue. He then writes of the relatively brief period of misdiagnosis prior to the CT scan. With the initial negative plain x-rays, he is started on nonsteroidal anti-inflammatory drugs. But breakthrough pain and continued weight loss leads to the CT. Paul the physician understands the death sentence the images portend; Paul the patient is just beginning his journey. The diagnosis and treatment cause him to reassess his decisions about his life, to decide to father a child even though he knows he will never see the child grow up, and ultimately to write a memoir, essentially for his daughter.

Paul had graduated from Stanford with undergraduate and master’s degrees which reflected his dual love of literature and science. He combined these in a second master’s degree from Cambridge University in the history and philosophy of science and medicine before attending Yale for his medical degree. He and his wife return to California for residencies. The book is largely a blend of his dual interests: a deep and abiding love and faith in literature and how words can reveal truths, and a passion for the practice and science of neurosurgery. The rupture of fatal illness into his life interrupts his dogged trajectory towards an academic medical career, and, like all ruptures, confounds expectations and reorients priorities.

The book has five parts: a foreword by physician-writer Abraham Verghese, who notes the stunning prose Paul produced for an initial article in The New York Times and exhorts the reader to “Listen to Paul” (page xix); a brief prologue; two parts by Paul Kalanithi (Part I: In Perfect Health I Begin, and Part II: Cease Not till Death); and a stunning, heart-breaking epilogue by Lucy Kalanithi. In the epilogue, written with as many literary references and allusions as her husband’s writing includes, Lucy provides the reader with a gentle and loving portrait of her husband in his final days, reaffirms his joy in their daughter Cady, and chronicles how she kept her promise to her dying husband to shepherd his manuscript into print.

The bulk of the book is memoir – a childhood in Arizona and an aversion to pursuing a life in medicine due to his hard-working cardiologist-father, experiences at Stanford which eventually led him to reverse his decision to avoid a medical career, the stages of his medical career and caring for patients, and his devastating cancer. Though initially responsive to treatment—and indeed, the treatment enables him to complete his residency and decide to father a child with Lucy—the cancer is, as prognosticated from the diagnosis, fatal.

What makes this memoir so much more than an exercise in memory and a tribute to the herculean effort to write while sapped by cancer and its treatment, are the philosophical turns, the clear love of words and literature, and the poignancy of the writing. He begins reading fiction and nonfiction again: “I was searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again. The privilege of direct experience had led me away from literary and academic work, yet now I felt that to understand my own direct experiences, I would have to translate them back into language…I needed words to go forward.” (pp 148-9) Paul’s writing ends with what is arguably some of the most poetic prose ever written. He concludes by speaking directly to his infant daughter: “When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.” (p. 199)

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Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.            

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.            

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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Chaplain-poet Nancy Adams-Cogan's 3rd chapbook of poems complements her earlier work as "a receiver of stories" (p.1). The theme for this collection of 39 poems is dementia and the poems are smartly accompanied by a number of photos by Rod Stampe.  What comes through in these poems is the deep humanity of those who struggle with memory loss—both the individual experiencing it directly and the family members or caregivers accompanying them on their journey. Adams-Cogan captures well the "many faces" of dementia and how those faces "may vary day-by-day-by-day" (p.84). The poet also takes a close look at her aged and aging selves in the poems "Myself in Decline" and "Entanglements."

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At 16, Alice is diagnosed with leukemia, and is given a dire prognosis.  Assuming she has months to live, she undergoes chemotherapy with the support of her lifelong friend, Harvey, whose frank and deepening love she is uncertain about returning.  On days when she has enough energy and the nausea abates, she works on a "bucket list" with Harvey's sometimes reluctant help, since the list includes revenge on two classmates who have hurt and humiliated her.  When, months into treatment, she goes into unexpected full remission, Alice has to come to terms with the consequences of some of her revenge strategies and reassess the depth of a relationship with Harvey that may last far longer than she thought she had.  Given an opportunity to choose life on new terms, she considers those new terms in a more adult way, chastened, focused, and grateful for a chance to make new choices.

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Many are familiar with these stories from the author's practice as a midwife among the urban poor in London's East End in the 1950s.  Each piece stands alone as a story about a particular case. Many of them are rich with the drama of emergency interventions, birth in complicated families (most of them poor), home births in squalid conditions, and the efforts of midwives to improve public health services, sanitation, and pre- and post-natal care with limited resources in a city decimated by wartime bombings.  As a gallery of the different types of women in the Anglican religious order that housed the midwives and administered their services, and the different types of women who lived, survived, and even thrived in the most depressing part of London, the book provides a fascinating angle on social and medical history and women's studies.

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