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Attending Others

Volck, Brian

Last Updated: Apr-11-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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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Annotated by:
Glass, Guy

Primary Category: Literature / Plays

Genre: Essay

Summary:

This is a collection of essays by (mostly British) artists, performers, and academics on the intersection between medicine and theater.  It appears in a series entitled “Performance and Science: Interdisciplinary Dialogues” put out by Bloomsbury Methuen Drama.  The introduction makes it clear there are many points of convergence beyond the scope of this volume, such as how medicine is depicted in plays and therapeutic uses of theater (e.g. drama therapy).  The focus here, then, is on “the ways in which the body is understood, displayed and represented in performance” (p. 11).  And the “medical body” of the title refers to one that is ’acted upon’ by illness or disability and/or by the diagnostic and therapeutic activities of the medical profession” (Ibid).  

The book is divided into three sections: “Performing the Medical,” “Performing Patients,” and “Performing Body Parts.”  The first section includes an essay by Roger Kneebone, a surgeon, who explores the parallels between his field and theatrical performance.  Kneebone has devised simulations that enable laypersons to get a sense of what it is like to participate in surgery.  In his view, this encourages cross-fertilization of ideas.  For example, his collaboration with a jazz pianist has demonstrated to him that musical improvisation, in its spontaneity, is somewhat like emergency surgery.  And his work with a choreographer led to the development of a dance piece depicting the movements of a surgical team during a procedure.   
 

In the second section we read about Brian Lobel, a theater artist who has used his experience with testicular cancer to create a solo performance piece entitled “BALL.”  This not only allowed Lobel to “regain a sense of mastery over the illness experience” (p. 88), but has also earned him a niche within the theater community.  Lobel now works with other cancer sufferers helping them develop their own narratives in a project called “Fun with Cancer Patients.”  

The final section of the book includes a description of “Under Glass,” a forty-minute performance piece consisting of eight specimen jars each containing a solo performer, said to be “at once museum exhibit, gallery and medical laboratory” (p. 141), which also provides the book's front cover image. "Under Glass" was devised by Clod Ensemble, whose Performing Medicine project is known for its teaching programs in numerous London medical schools.  Meant to provoke discourse about the public display of specimens, it brings to mind the Victorian “freak show” as well as the more recent controversial touring Body Worlds exhibition of plastinated cadavers and body parts.

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The Last Days of Ptolemy Grey

Mosley, Walter

Last Updated: Mar-07-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Walter Mosley writes in various genres but is probably best known for his mysteries. His 2010 novel, The Last Days of Ptolemy Grey, could be considered another one of his mysteries, but the mystery plot takes a secondary role. Featured more prominently is the struggle the main character, Ptolemy Grey, has with dementia.   

The reader first encounters Ptolemy Grey when he is 91 years old and living alone in an apartment he has inhabited in South Central LA for more than 60 years. Both he and the apartment are in appalling shape. The apartment is cluttered, disorganized, and dysfunctional—as is his aging brain. He knows his mind is failing and seems to him as if it “had fallen in on itself like an old barn left unmended and untended through too many seasons.” (p.153)

Throughout the novel, Mosley presents aspects of dementia and some of its oddities. For example, while Ptolemy is riding on a bus through his town, certain sights trigger clear memories from his childhood 80 years before. At the same time he is unsure where he is going or why. Mosley also shows how people can possibly realize they are slipping into dementia, for example, when Ptolemy stops talking to a friend once “he could see in her eyes he wasn’t making sense.” (p. 122)

Ptolemy’s great-grandnephew Reggie provides him with the assistance he needs to barely maintain his lonely existence in squalid conditions. When Reggie dies, a new person comes into his life. Robyn, a 17-year-old orphan living with Ptolemy’s grandniece, begins to straighten out his apartment and then his mind.    

As Robyn gets Ptolemy’s apartment more organized and functional, Ptolemy’s mind starts to get more organized and functional as well, but only a bit more. Unsatisfied with his progress, Robyn takes Ptolemy to a physician who has an experimental drug for dementia. Ptolemy is told that if he takes the drug he will regain his mental acuity but probably not live more than a few weeks, or months, at best. Without hesitation he takes the drug—“I wanna make it so I could think good for just a couple a mont’s, Doc” (p. 126)—and rapidly regains many memories and mental capacities. During the time he has with his newfound mental agility, Ptolemy is able to make good on a commitment from his childhood and to solve the mystery of Reggie’s death. While the experimental drug enables Ptolemy to wrap up his business, it also produces a rather violent end to his life.

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When Breath Becomes Air

Kalanithi, Paul

Last Updated: Feb-18-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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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Annotated by:
Lerner, Barron

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Perhaps no topic in the history of medicine has been explored as much as the lobotomy.  Psychiatrists, historians and journalists have weighed in on this controversial topic, and the procedure has been featured in a number of Hollywood films.

Yet there is nothing like a narrative of a specific lobotomy patient to draw us into the subject anew.  And that is why Kate Clifford Larson’s new book, Rosemary: The Forgotten Kennedy Daughter, is so compelling—even if we already know the sad outcome of Rosemary Kennedy’s life.

Originally devised in 1935 by the Portuguese neurologist Egas Moniz, the lobotomy involved drilling holes in the skull and using a blade to sever nerve fibers running from the frontal lobes to the rest of the brain.  Moniz believed that psychiatric symptoms were caused by longstanding faulty nerve connections.  Severing them, and allowing new connections to form, he postulated, would help treat patients with intractable mental illness, such as schizophrenia and its paranoid delusions.

America’s chief proponent of lobotomy was Washington, D.C. neurologist Walter J. Freeman who, working with neurosurgeon James W. Watts, reported in 1937 that 13 of 20 patients undergoing the operation had improved.  Freeman would later devise his own procedure, the transorbital lobotomy, in which he actually used a mallet to pound an ice pick through the patient’s eye socket into the brain, then moved the pick around blindly to cut the nerve fibers.

Among the first histories of lobotomy was psychologist Elliot S. Valenstein’s  Great and Desperate Cures (1986), which strongly criticized Freeman and his contemporaries as overzealous physicians who did far more harm than good, creating docile and apathetic individuals no longer capable of caring for themselves.  Physician-historian Joel Braslow’s Mental Ills and Bodily Cures (1997) argued convincingly that a main motivation for the popularity of lobotomies—roughly 40,000 would be performed in the United States by the 1960s—was to enable staff members to maintain order in crowded, understaffed institutions.   In Last Resort (1998), historian Jack D. Pressman made the provocative claim that lobotomy represented the best science of the day and that, at least in some cases, it allowed patients to return home with fewer psychiatric symptoms.

Rosemary Kennedy was born in 1918, the third of what would eventually be nine children of Joseph and Rose Kennedy.  Joe was a successful businessman and investor who later entered politics, first as chairman of the Securities and Exchange Commission from 1932 to 1935 and then as U.S. Ambassador to Britain from 1938 to 1940.  At an early age, it was clear that Rosemary was not as mentally sharp as her two older brothers, Joe Jr. and John.  Larson hypothesizes that Rosemary’s “intellectual disability” occurred at birth, when a nurse forcibly kept her in her mother’s womb—perhaps without adequate oxygenation—while waiting for the doctor to arrive.

It was Rosemary’s blessing and curse to be born into the high-powered and prominent Kennedy family.  Her parents left no stone unturned in trying to help their daughter, sending her to special schools and programs around the world.  But they simply could not tolerate her lack of improvement.  Rosemary was a terrible speller and writer, socially awkward and at times unruly.  Joe Sr., in particular, worried about the negative ramifications to his sons’ possible political careers if word got out about their “retarded” sister.

Reading about Rosemary’s first two decades, and knowing that her lobotomy is approaching, is truly heartbreaking.  Writing letters home from her various placements, she was so eager to please.  “I would do anything to make you happy,” she told her father in 1934 at the age of 16.  “I hate to Disppoint [sic] you in anyway.”

When the Kennedys first arrived in England in 1938, Rosemary, her mother Rose and her younger sister Kathleen were presented to the king and queen.  For once, the circumstances tilted in Rosemary’s favor.  The event was smashing.  Photographs show Rosemary, who had become a very attractive young woman, resplendent in a “picture dress of white tulle.”  She felt, she said, like Cinderella.

But when the family returned to the United States in 1940, with war approaching in Europe, the situation was no different than it had always been.  Plus, now in her early twenties, Rosemary’s moodiness and emotional outbursts were becoming more frequent.

Lobotomy had gotten a lot of press in 1941, particularly in a May article in the Saturday Evening Post that highlighted the work of Freeman and Watts.  And while this piece warned about the dangers of the procedure, it mostly praised its ability to make people with mental illness into “useful members of society.”  At some point, Joe Kennedy met with Freeman and decided that Rosemary should undergo the operation.  Larson does not unearth exactly how the decision was reached—or what Rosemary was told.  But it seems to mostly have been Joe’s doing.

The problem, of course, was that lobotomy was not meant for what Rosemary had—essentially a low IQ.  But Joseph Kennedy, in conjunction with her doctors, had convinced himself she had an “agitated depression,” and thus was a candidate.  That Freeman was a zealot for the operation, as is well documented in journalist Jack El-Hai’s The Lobotomist (2005), did not help.  Most tragically, when Rosemary underwent her lobotomy some time in November 1941, something went “horribly awry.”  Patients were kept awake during the procedure and asked to talk or sing to help guide the surgeon’s scalpel.  But in Rosemary’s case, when Watts made his final cut of brain tissue, she became incoherent.  “The operation,” Larson writes, “destroyed a crucial part of Rosemary’s brain and erased years of emotional, physical and intellectual development, leaving her completely incapable of taking care of herself.”

The rest of Rosemary discusses her life after the lobotomy until her death in 2005.  She spent most of these years at a Catholic residential institution in Wisconsin.  Most cruelly, family members rarely visited, trying to render invisible what had happened.  To the Kennedys’ credit, in later years they corrected this error and brought Rosemary for visits to Hyannis Post and other family outposts.  There are only a few photographs in the book from this later era, but they help to humanize the woman who suffered for so long.

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The Death of Cancer

DeVita, Vincent

Last Updated: Feb-04-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The book offers a detailed account by one of the nation’s leading cancer researchers of developments in chemotherapy over the past several decades, as well as the recent history of surgical and radiation treatments in the “war on cancer”—a term he resisted at first but finally embraced with full understanding of its implications.  The narrative touches on many of the writer’s own struggles over economic, political, and moral implications of what a NYT reviewer described as a “take-no-prisoners” approach to cure.  He also includes stories about disagreements with other researchers that give some insight into the acrimony that is part of high-stakes science.  At the NIH and later as head of the National Cancer Institute, DeVita faced many decisions about distribution of resources, how much to put patients at risk, and whom to include in clinical trials.  He provides his own point of view on those controversies frankly.  Not much mention is made of the causes of cancer, of nutritional or other complementary approaches, or the environmental factors in the spread of cancer. The strong focus on the book is on the development of chemotherapeutic treatments that have succeeded in raising survival rates, though few current statistics are cited.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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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the lost baby poem

Clifton, Lucille

Last Updated: Feb-01-2016
Annotated by:
Aull, Felice
Chen, Irene

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

A woman reminisces about and with a child she chose not to have. It would have been born in winter, in a time of financial hardship, perhaps to have been given up for adoption. Sorrow for the child that never was causes the woman to swear devotion to her living children, yet she does not seem to regret her decision.

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Dr. Mütter's Marvels

O'Keefe, Cristin

Last Updated: Jan-25-2016
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction — Secondary Category: Literature / Nonfiction

Genre: Biography

Summary:

Those who are familiar with the Mütter Museum of the College of Physicians of Philadelphia, best known for its anatomical oddities, may have wondered about the institution’s namesake.  The author of this book, a poet and native of Philadelphia, endeavors to place Thomas Dent Mütter within the context of 19th-century American medicine.  

We learn here that notwithstanding being “medicated” with wine, surgical patients emitted such agonized screams that observers were known to vomit and pass out in their seats. We learn that Philadelphia was a cesspool of infectious disease for which there was no effective treatment.  We learn too of the rivalry (including behavior that would be considered unprofessional today) between the well-established school of medicine at the University of Pennsylvania (Mütter’s alma mater) and upstart Jefferson (whose faculty Mütter would join).  

In an era before the germ theory of disease became widely accepted, there was of course no concept of sterile technique.  To suggest that a surgeon should wash his hands was to imply he was not a gentleman because “all gentlemen were clean” (page 104).  Resistance to anesthesia was based not so much on concerns about potential danger but on the notion, when it came to obstetrics, that pain was a punishment for the sins of Eve.  Doctors could be downright sadistic to their patients, to the point of beating them like livestock.  That there was no concept of surgical aftercare meant that patients would be sent home immediately following an amputation. Victims of grotesque tumors and disfiguring accidents were considered “monsters” who lived lives of unimaginable misery.  

Enter Mütter, whose importation of plastic surgery from Paris to America brought hope to thousands of incurables.  He had an intuitive sense of the role of cleanliness in reducing morbidity and mortality.  He was a passionate advocate for anesthesia when it was seen as little more than a fad.  He abandoned traditional teaching methods that held a professor should be distant and unapproachable, and became beloved by generations of Jefferson students.  
 

In short, Mütter emerges as not just a likeable guy, but the forerunner of a whole new concept of what a good doctor should be, a sort of cross between P.T. Barnum and Mother Teresa.    

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Annotated by:
Kohn, Martin

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Brian Dolan has done a great service for the field of medical humanities through his efforts in putting together this volume. Its 19 reprinted articles cover the spectrum of disciplines/fields/methodologies that anchor our work:  history, literature, film, theater, arts, narrative, storytelling, critical (disability) studies, human values, and professionalism. His opening essay, “One Hundred Years of Medical Humanities: A Thematic Overview” very pertinently and extremely ably sets the stage for the remainder of the book. Quite helpfully, authors of “recently published articles,” in this instance from 1987 on, were asked “to reflect on their piece and add introductory comments that would help frame it, or enable them to address issues raised since its original publication” (p.167).  To the reader’s benefit, almost all of those contemporary authors did so.  As cited on the book’s  back cover, the work of some of our field’s most important educators are in this volume, including contributions from Erwin Ackernecht, Gretchen Case, Rita Charon, Jack Coulehan, Thomas Couser, Lester Friedman, Kathryn Montgomery Hunter, Paul Ulhaus Macneill, Guy Micco, Martha Montello, Edmund Pellegrino, Suzanne Poirier, Johanna Shapiro, Abraham Verghese, and Delese Wear. 

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