Summary:

Damon Weber's proud father, Doron, has written a searing memoir that enfolds a story of parental love and loss into a medical exposé. By the time Damon turned four, he had two open-heart surgeries to correct a congenital malformation that affected circulation to his lungs. His parents were led to believe that after the surgeries, their effervescent, sociable, academically and artistically talented son was set for life. However, as Damon turned 12, they became concerned about what his father calls "his unsprung height," his shortness of breath, and a strange protrusion in his abdomen (40). Returning to his attending physician, they were surprised that she withheld information from them about a condition known as PLE (protein-losing entropy), which can manifest months or years after the kind of surgery (Fontan) their son underwent. PLE enlarges the liver and allows proteins to leak from the intestines. Without adequate protein, Damon's body could not grow. His father worried that they might have passed the established window of opportunity to treat the complication.

The memoir, which reads like an extended eulogy to a beloved son, fuses scenes of family life with difficult medical decisions aimed at reversing the effects of PLE. However, none of the interventions succeed, leaving a heart transplant as Damon's last hope. As Weber recounts each decision leading to the transplant, he exposes flaws in the way hospital systems operate, in the way families are treated, and in the care provided by the medical team that lobbied to perform the transplant. Damon died after his transplant physician made herself scarce after misdiagnosing a post-operative complication, and an inattentive hospital staff ignored his parents' justifiable alerts to ominous symptoms. Scenes of the hospital staff waiting impatiently at the door to Damon's room to remove the machines sustaining and monitoring him, as his distraught parents say good-bye, are disturbing. When the Webers initiate a lawsuit, the transplant physician cannot locate Damon's medical records. The narrative fully absorbs Weber's sorrow and anger.

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Summary:

The author of this long, compassionate and often startling treatise on identity interviewed over three hundred families to elicit stories about raising exceptional children, stories that also come from these exceptional children ('exceptional' is the term chosen to describe the children in the author's material about the book).

'Far From The Tree' explores the challenges children face in being raised in families where one prominent feature in their identity is forged by something out of their parents' control and generally not part of the family's experience until then. These identities are not 'vertical' (passed down from generations of parents to their children), but 'horizontal', springing up between those who share in that identity at any one time. Solomon begins by wondering about his own relationship with his parents when he was a child discovering his sexuality and ends with his own role as a father, 'the terrifying joy of unbearable responsibility' (702); between the two poles of his own experience, he meets parents and children who have experienced deafness, dwarfism, autism, schizophrenia, severe physical disabilities and diverse gender identities, prodigies, children who were concieved by rape and children who became criminal.  

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Eloy’s grandmother—his abuela—is dying of cancer.  She has been his faithful companion, teacher and refuge in a home where his parents often fight and his older brother seems to have lost interest in him.  He believes the only thing that will save her now is for him to make the annual pilgrimage on foot to the chapel at Chimayo, 17 miles from their New Mexico home, but his parents, both of who work full time, can’t go with him and won’t hear of his going alone.  Desperate for a miracle, and believing she can be saved by the blessed soil distributed at the chapel where many seem to have experienced miracles of healing, he sets out in secret early in the morning.  On the way a friendly dog begins to follow him and, despite Eloy’s efforts to get rid of him, travels the entire 17 miles with him, sharing the water Eloy reluctantly offers him from the canteen that once belonged to his grandfather.  Much of the story follows Eloy’s thoughts as he travels, and the small difficulties and surprises along the way.  As he finally sees the chapel in the distance, he hears his brother driving by slowly in his low-rider with tinted windows.  Angry at the brother who has given him no support so far and seems to be mocking him, Eloy flips him the finger.  Later, as he stands in line for the sacred soil, his brother enters the chapel with their abuela on his arm.  She explains to Eloy that she is indeed going to die, and that God has other ways of answering prayers.  She sees that Eloy has been sent a companion, and encourages him to bring the dog, whom he has now named, home with him.  His parents, who have steadily refused to let him have a dog, accept him, and Eloy comes to new terms with his grandmother’s approaching death.

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Matt leaves a swim meet, happy with his performance, to drive home on a snowy road with his mother and sister.  On the way their car is hit by a drunk driver who swerves out of his lane.  His mother is killed instantly, his sister badly injured.  When he has received treatment in the hospital for an injured shoulder, his best friend’s family comes to pick him up.  He isn’t allowed to see his sister for days, and when he finally does, she looks lifeless and unfamiliar, tubed up in the ICU.  At home with his friend Jamie, he remembers a time when he and his sister rescued a robin, only to see it die.  The story traces the days and weeks following Matt’s loss—his mother’s funeral, his friend’s family’s decision to adopt him, and eventually his sister’s death.  Despite his struggle with grief, anger, and bewilderment, Matt also has times of hope and pleasure in his new relationship to a family he already loved.  Readjusting to school is one of the many challenges he faces.  When he does return to school, he finds himself and his perspective changed, and realizes loss has grown him up in unexpected ways.

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The pediatrician-author of this autobiography was the first Jewish professor of medicine at the prestigious McGill University.

Born in Montreal in 1890, Alton was an only child whose immigrant father was an itinerant merchant with somewhat shady dealings. The shy boy developed hemoptysis and was sent away from home and family to the healthier air of Denver on the erroneous suspicion of tuberculosis.

He overcame shyness and found an ability to speak in acting and “declaiming” passages from Shakespeare. Literature remained a lifelong passion. Notwithstanding the quotas on Jewish students, he attended McGill medical school, followed by residency in the United States where he encountered many luminaries of twentieth-century pediatrics.  

Upon his return to Montreal, he confronted entrenched anti-semitism, but was instrumental in founding the Jewish General Hospital and a children’s hospital. He witnessed exciting medical discoveries and, like many other pediatricians, championed initiatives for child health that relied on social intervention.

The book closes with a few case histories of small patients, many of whom fell ill because of parental and societal ignorance.

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This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care.  Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.

The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.

In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”

When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.

In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.

On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women. 

The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.

Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135). 

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Elie Wiesel, 82-years-old, has pain that he thinks is in his stomach or esophagus, perhaps caused by his chronic acid reflux.  After tests, however, doctors diagnose cardiac illness and insist on immediate surgery. Reluctant to go to the hospital, Wiesel dawdles in his office. When he does go, doctors believe a stent will do the job. Instead, the intervention becomes a quintuple bypass.

This brief memoir—a scant 8,000 words—presents the “open heart” of a gifted writer as he contemplates his open-heart surgery, his past life, and the future. He asks himself basic, even primal questions about life, death, and the nature of God.            

Although a man with an extraordinary career—prizes, fame, honorary doctorates, friends in high places, professorships—Wiesel experiences and describes ordinary feelings of anxiety, pain, and doubts about his cardiac emergency and possible death. His stylistic gifts describe frankly and vividly a patient’s fears. As many have observed, patients with a serious disease have two difficulties, the disease itself and their emotional responses to that disease.  As Wiesel is wheeled into the OR, he looks back on his wife and son; he wonders whether he will ever see them again.            

He writes that his “thoughts jump wildly; I am disoriented.” He recalls a friend undergoing similar surgery; she died on the table. He says he can’t follow the jargon of physicians. The texture of the prose is rhapsodic, jumping from the present to memories, many of them about war, his past surgeries, or important family events. This short book has 26 “chapters,” some just half a page; they are like journal entries.

As he slowly recovers, he feels pain and has visions of hell, including the concept of ultimate judgment. “Evidently, I have prayed poorly…; otherwise why would the Lord, by definition just and merciful, punish me in this way?” (p. 38).  Because he has a “condemned body,” he feels he must search his soul. In the longest chapter of the book, he reviews several of his writings.

Wiesel asks some of the questions from his famous novel Night (La nuit, 1958).  If there is a God, why is there evil? Auschwitz, he says, is both a human tragedy and “a theological scandal” (p. 67). Nonetheless, he affirms, “Since God is, He is to be found in the questions as well as in the answers” (p. 69).

At the end, he still has some pain but feels much gratitude for his continuing active life and for his grandchildren.

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Entering a school as the first student with a serious disability (cerebral palsy) after starting his education in a "special" school, Christopher Nolan had to develop careful and clever strategies for developing friendships, allowing others their curiosity, and finding ways to use his considerable gifts against the odds of both the disease and the prejudice it bred.  One of his strategies is the inventive, cryptic, poetic, Joycean idiom in which he writes his story.  He did, in fact, succeed in a school where he was accepted as a kind of experiment, in an area of Ireland not known for its progressive attitudes.  In this narrative he moves back and forth between inner life, family life, and life at school, allowing readers to get to know him as a deeply reflective, adventurously social, and courageous human being, living with his debilitating condition with a degree of consciousness that took full account of the losses as well as finding avenues of expression that allowed him, intellectually, at least, full range of motion.  The narrative takes us through his school years where he distinguished himself as a poet and also as a human being for whom life with a disability shaped an extraordinary dexterity with language.

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In this collection of "clinical tales," to use Oliver Sacks' term, Sue Hall, an experienced neonatologist who spent some years as a social worker before medical school, tells a remarkable range of stories about newborns in the NICU and their parents.  As memoir, the stories record moments in a life full of other people's traumas, disappointments, anxieties, and hard-won triumphs where her job has been to hold steady, find a balance point between professionalism and empathy as young parents go through one of the hardest kinds of loss.  Each story is told with clarity and grace, sketching the characters deftly and offering useful medical information along the way on the assumption that many who read the book will do so because they are facing similar challenges and decisions.  Each story is followed by a two- to three-page "Note" giving more precise medical background and offering further resources for those who have particular interest in the kind of case it was. 

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It started with a faint. Javier Miranda, a generally healthy 69-year-old man living in Venezuela, attributes his episode of dizziness to the summer heat and humidity. His only child, Andres Miranda, is a physician whose intuition tells him something is seriously wrong with his father. The doctor obtains blood work and schedules a CT scan and MRI of the brain for Javier. The medical work-up reveals rapidly progressing lung cancer with metastases to the brain. Violating his credo of complete honesty with patients, Dr. Miranda lies to his father and reassures him instead. Dr. Miranda's mother died when he was just 10 years old. Now his father's remaining lifespan has dwindled to a couple of months. The doctor must find a way to break the bad news to his dad.

Meanwhile, Dr. Miranda receives multiple messages - phone calls, e-mails, and letters - from a difficult and persistent patient. Ernesto Duran suffers from dizzy spells and multiple other symptoms. It could be panic disorder or maybe Ernesto is a hypochondriac. Dr. Miranda instructs his office secretary, Karina, to deal with these communications and remind the patient that there is nothing more that can be done for him. When Ernesto admits he is stalking the doctor, Karina worries. Pretending to be Dr. Miranda, she begins corresponding with Ernesto via e-mail. Before long, Karina develops symptoms similar to Ernesto's and experiences empathy for him.

When his physician-son finally summons the courage to announce the terminal diagnosis, everything changes for Javier - his mood, personal relationships, and awareness of his body's metamorphosis. He perceives the smell of rot associated with his physical deterioration. Dr. Miranda's frame of mind also changes as he copes with his father's impending death. Javier's deathbed request is simply for his son to shatter the terrible silence by talking about the two of them.

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