Summary:

Sunita Puri, a palliative care attending physician, educates and illuminates the reader about how conversations about end of life goals can improve quality of life, not just quality of dying, in her memoir, That Good Night: Life and Medicine in the Eleventh Hour. Thirteen chapters are grouped in three parts: Between Two Dark Skies, The Unlearning and Infinity in a Seashell. The arc of the book follows Puri as she is raised by her anesthesiologist mother and engineer father – both immigrants from India – Puri’s decision to enter medical school, her choice of internal medicine residency followed by a palliative care fellowship in northern California and her return to practice in southern California where her parents and brother live. Besides learning about the process of becoming a palliative care physician, the reader also learns of Puri’s family’s deep ties to spirituality and faith, the importance of family and extended family, and her family’s cultural practices.

Puri writes extensively about patients and their families, as well as her mentors and colleagues. She plans and rehearses the difficult conversations she will have with patients in the same way a proceduralist plans and prepares for an intervention. She provides extensive quotes from conversations and analyzes where conversations go awry and how she decides whether to proceed down a planned path or improvise based on the language and body language of her patients and their family members. We visit patients in clinic, in hospital, and at home, and at all stages of Puri’s training and initial practice. Some of the most charged conversations are with colleagues, who, for example, ask for a palliative care consultation but want to limit that conversation to a single focus, such as pain management. We also learn of the differences between palliative care and hospice, and the particularly fraught associations many have with the latter term. She feels insulted when patients or families vent by calling her names such as “Grim Reaper” or “human killer” (p. 232), but understands that such words mean that more education is needed to help people understand what a palliative care physician can do. 

As a mediator of extremely difficult conversations, where emotions such as shame, guilt, fear, helplessness and anger can swirl with love and gratitude, Puri finds the grace to acknowledge that all such emotions are part of the feelings of loss and impending grief, and to beautifully render her reflections on these intimacies: “Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.” (p. 206) Having met many dying people she notes: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.” (pp 221-2) 

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The author, an experienced surgeon, believes that we will be less frightened by the prospect of death if we understand it as a normal biologic process. He points out that 80 percent of deaths in this country now occur in hospitals and are therefore "sanitized," hidden from view, and from public comprehension. He describes the death process for six major killers: heart disease, stroke, AIDS, cancer, accidents/suicide, and Alzheimer's disease.But the power of the book is in its intensely personal depiction of these events and in the lessons which Nuland draws from his experiences. The message is twofold: very few will "die with dignity" so that (1) it behooves us to lead a productive LIFE of dignity, (2) physicians, patients, and families should behave appropriately to allow nature to take its course instead of treating death as the enemy to be staved off at any cost. Only then will it be possible for us to die in the "best" possible way--in relative comfort, in the company of those we love/who love us.

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The author poetically describes the neurological deficits left by his patient’s third stroke. Her misshapen words are "small stones and loose particles of meaning "as he attempts to understand her. Her husband, however, states that "her gulps don’t make no sense," emphasizing his perception of the hopelessness of the situation.

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A bicycling, bee-keeping, British neurosurgeon approaching the end of his professional career recalls some distinctive patients, surgical triumphs as well as notable failures, difficult decisions, and mistakes. Nearly thirty years of a busy neurosurgical practice are distilled into a collection of linked stories throbbing with drama - both the flamboyant kind and the softly simmering type.

Most chapters are titled after a medical condition (exceptions are "Hubris" and "Melodrama"). Some of the headings are familiar - Trauma, Infarct, Aneurysm, Meningioma. Other chapter titles flaunt delicious medical terminology that mingles the mysterious and the poetic with nomenclature such as Angor animi, Neurotmesis, Photopsia, and Anaesthesia dolorosa.

Included are riveting accounts of both mundane and seemingly miraculous patient outcomes. One success story involves a pregnant woman losing her sight due to a brain tumor that compresses the optic nerves. Her vision is restored with an operation performed by the author. Her baby is born healthy too. But tales of failure and loss - malignant glioblastomas that are invulnerable to any treatment, operative calamities including bleeding of the brain, paralysis, and stroke - are tragically common. The author describes his humanitarian work in the Ukraine. He admits his aggravation with hospital bureaucracy and is frequently frustrated by England's National Health Service.

Sometimes the shoe falls on the other foot, and the doctor learns what it is to be a patient. He suffers a retinal detachment. He falls down some stairs and fractures his leg. His mother succumbs to metastatic breast cancer. His three month old son requires surgery for a benign brain tumor.

As his career winds down, the author grows increasingly philosophical. He acknowledges his diminishing professional detachment, his fading fear of failure, and his less-hardened self. He becomes a sort of vessel for patients to empty their misery into. He is cognizant of the painful privilege it is to be a doctor.

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This anthology is a sequel to Pulse: The First Year (2010). Both anthologies are comprised of postings to the website “Pulse: voices from the heart of medicine,” an online publication that sends out short poems and prose pieces every Friday. As the website subtitle suggests, the topics are from the medical world, the writing is personal (not scientific), and the writers give voice to feelings and perceptions from their direct experience as care-givers, patients, or family members of patients. All the pieces are short (typically one to five pages), usually with a tight subject focus. For example, in "Touched," Karen Myers reports how massage has helped her muscular dystrophy. 

The postings in the second anthology originally appeared from April 2009 through December of 2010. Because the 87 pieces appear in the order they were published, they don’t have linear coherence. Therefore the editors of have thoughtfully provided four indices in the back of the book: by author, by title with summaries, by healthcare role, and by subject/theme.

Prose pieces vary widely in style and technique. The poems are almost all free verse, although some poets have used regular stanzas. “Depression Session,” (p. 157) is an 18-line poem by a physician about a difficult mental patient. Many of the pieces explore the intensity of medical subjects with impacts on doctor, patient, and/or family. Some of them show limits of medicine. “Pearls before swine” (p. 191) relates the experience of a third-year medical student in a rotation at the office of a racist and sexist physician. “Babel: the Voice of Medical Trauma” (p. 158) dramatically tells the story of a poorly handled birth at a hospital.  

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This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom.  Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences. 

Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself.  While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses.  Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy. 

Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time.  In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance.   When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected.  In retrospect she is more adult, more mature than most young women might be in each of these situations.  She is a remarkable young woman with a spirited edge.

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This is an anthology of poetry by poets who have disabilities. The book's sections are ordered more or less chronologically, although the editors have identified other groupings as well: "The Disability Poetics Movement," "Lyricism of the Body," and "Towards a New Language of Embodiment." Also included is a well organized preface by editor Jennifer Bartlett and an informative "Short History of American Disability Poetry" by editor Michael Northen. An essay by or about each poet prefaces that poet's work. The book makes no pretense at being comprehensive but offers a large selection of poets with a variety of physical impairments (e.g. cerebral palsy, rheumatoid arthritis, dystonia, blindness, deafness, Parkinson's disease, multiple sclerosis, stroke). It presents important figures who have contributed to current thinking about the disabled body and social and physical constraints imposed on it, as well as poets who do not/did not identify themselves as disabled in their work.

The first section, "Early Voices" presents poets no longer alive who wrote in the mid to late 20th century and rarely forefronted their disability (Larry Eigner, Vassar Miller, Robert Fagan, Josephine Miles-- and  Tom Andrews, who DID write about his hemophilia). Their work took place mostly during a time when disability was stigmatized and kept hidden. Michael Davidson's essay on Larry Eigner's work is particularly informative, showing how the poet's severe cerebral palsy, which kept him housebound, pervaded his work although he made no overt reference to his condition.

"The Disability Poetics Movement" highlights poets ("crip poets") who openly celebrate their unusual bodies. These are poets who emerged shortly after passage of the Americans With Disabilities Act in 1992. Some, such as Jim Ferris, Kenny Fries, Petra Kuppers became disability rights advocates and educators in the field of disability studies. Editor Michael Northen speculates that Fries "may be the single most powerful representative of this group" because he rejects both the medical and social models of disability and is "asking instead for a redefinition of beauty and of the way that disability is perceived" (20-21). Other poets in this section are Daniel Simpson, Laura Hershey, Jillian Weise, Kathi Wolfe, and John Lee Clark.

Ten poets contribute to the section, "Lyricism of the Body," most of them unknown to me (Alex Lemon, Laurie Clements Lambeth, Brian Teare, Ona Gritz, Stephen Kuusisto, Sheila Black, Raymond Luczak, Anne Kaier, Hal Sirowitz, Lisa Gill). Their prefatory essays are particularly helpful in providing context for their work. The final section, "Towards a New Language of Embodiment," is more experimental than the rest of the collection. "Rather than explaining an individual story, bodily condition is manifested through the form" (17). Poets are Norma Cole, C. S. Giscombe, Amber DiPietra, Ellen McGrath Smith, Denise Leto, Jennifer Bartlett, Cynthia Hogue, Danielle Pafunda, Rusty Morrison, David Wolach, Kars Dorris, Gretchen E. Henderson, Bernadette Mayer.

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In the well-written preface, Arthur Kopit describes how he came to write Wings, a play about stroke and language disorder. And he explains there how his fictional account of strokes and their aftermath, "is a work of speculation informed by fact." One fact important to Kopit was that his father suffered a major stroke seven months before Kopit was commissioned by National Public Radio to write an original radio play.

Wings, (which has been sucessfully staged as well) however, is not based on Kopit's father, but on the life of a character, Emily Stilson, who is an amalgam of people, both stroke victims and their stroke-recovered caregivers, from the rehab center caring for Kopit's father. The title of the play refers to an early career of Emily Stilson--she was an airplane wingwalker. Kopit deftly employs the sounds of an airplane in the scenes in which Emily is experiencing a stroke. In fact, the sounds and sights inside and outside of Emily as well as her private dialogue are combined masterfully by Kopit to bring about a high degree of verisimilitude to the chaos produced by stroke.

The play is divided into four sections: "Prelude," the moments before her first stroke; "Catastrophe," her trip to and stay in an institution; "Awakening," a longer section dealing primarily with her struggle to reorient and regain language skills; and "Explorations," where further therapy, including group therapy, and her eventual demise are portrayed.

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This short, gripping book describes Taylor's massive stroke, a burst blood vessel in the left side of her brain. Ironically, she was at 37, a neuroanatomist at Harvard, well versed in the anatomy and function of the brain. Her knowledge allowed her to understand from the inside her rapid loss of mental function and, with treatment, her very long (some eight years) recovery to health and, once again, professional activity.

Taylor presents an overview of brain structure and function, emphasizing the different roles of the left and right hemispheres. Since her left hemisphere was damaged and needed to be "rebuilt," in her term (learning to read, to dress herself, to drive a car, to think), she had plenty of time to explore her right brain and understand its wisdom and peace. This is her insight: our culture prizes the admirable but often frantic work of the left brain, putting us in stressed, competitive modes of thinking and acting, often aggressive and argumentative. "My stroke of insight," she writes, "is that at the core of my right hemisphere consciousness is a character that is directly connected to my feeling of deep inner peace" (page 133). Both sides of the brain have their strengths and uses, but she especially enjoys the spiritual and humane aspects of the right brain and, by extension, invites her readers to consider these resources for themselves and for the larger society.

Taylor credits her mother's care for much of the recovery, although it is clear between the lines that Taylor herself worked hard with various therapists (speech, massage, acupuncture). Despite the severity of her injury and the surgery, she appears to have returned to professional work at a high level, fully recovered and very grateful.

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In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.

The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.

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