Summary:

The French writer Alphonse Daudet (1840-1897) developed the form of tertiary syphilis called tabes dorsalis in the early 1880’s. Tabes progressively destroys the structures of the dorsal column of the spinal cord, leading at first to lower extremity ataxia and neuropathic pain, and eventually to paralysis of the legs associated with intractable pain. Daudet sought treatment from the leading neurologists of his time, including J. M. Charcot and C. E. Brown-Séquard, but the disease progressed relentlessly.

At some point Daudet began making notes for a book about his illness. He spoke to several of his contemporaries about this project, but the book never became more than a collection of brief notes, which were collected and published posthumously as "La Doulou" (Provencal for "pain"). This short book, translated here by Julian Barnes, consists of "fifty or so pages of notes on his symptoms and sufferings, his fears and reflections, and on the strange social life of patients at shower-bath and spa." (p. xiii)

The notes are generally in chronological order, beginning with short comments like "Torture walking back from the baths via the Champs-Elysées" (p. 4) and "Also from that time onwards pins and needles in the feet, burning feelings, hypersensitivity." (p. 6) In a long section toward the end Daudet comments on his experience at Lamalou, a thermal spa that he visited annually from 1885 to 1893. "I’ve passed the stage where illness brings any advantage or helps you understand things; also the stage where it sours your life, puts a harshness in your voice, makes every cogwheel shriek." (p. 65)

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The author introduces his book by saying, "I should like to write a book to help people cope with inexplicable pain and suffering." He is "profoundly suspicious" of the genre of books that attempt to explain why a good and all-powerful God allows us "to undergo suffering for seemingly no reason." Thus, he distinguishes his investigation from theodicy in the traditional sense (an explanation of why God allows suffering); rather, Hauerwas wishes to explore why human beings believe it is so important for us to ask why God allows suffering.

The narrative backbone of this book is provided by fictional and non-fictional texts about the suffering and death of children. The prime fictional example is The Blood of the Lamb, Peter De Vries's 1961 novel about an 11-year old girl who dies of leukemia and the anguish of her father. This fiction, however, was based on De Vries's personal experience. [See annotation in this database.] Hauerwas also explores several non-fictional accounts of dying children, especially Where Is God When a Child Suffers? by Penny Giesbrecht, The Private World of Dying Children by Myra Bluebond-Langner, and Lament for a Son by Nicholas Wolterstorff.

Traditionally, suffering and death were interpreted in the context of religious meaning (e.g. part of God's plan, punishment for sin, etc.) Yet, the fact that God allows evil--in the form of suffering--to occur poses a problem, if God is both all compassionate and all-powerful. Modern medicine dispenses with the meaning of illness--disease and suffering are pointless and should be eliminated, if possible. Likewise, in modern society our preferred death is sudden like a bolt of lightning (no suffering), while in the past people looked for a "good death," which might involved a period of suffering during which the person could become reconciled to family, friends, and God.

Nonetheless, even if we adopt a scientific point of view, as human beings we can't help attributing narrative meaning to our illnesses. Thus, when adults suffer, we place their suffering in the context of a life story that may include a number of layers and dimensions. We "dilute" the suffering in the context of story. However, childhood suffering and death appear to truncate narratives, sometimes even to abolish them. Therefore, the suffering seems particularly meaningless, and it feels more "evil" and more devastating.

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In this novel, with the help of some friends, Gregor Samsa has survived his seeming death at the end of Kafka’s The Metamorphosis and joined a freak show in Vienna. A little man named Amadeus Hoffnung, who suffers from Werner’s syndrome (premature aging), runs this Chamber of Wonders. The human sized cockroach proves to be a big hit with the public and a good friend for his assorted colleagues, who come to admire his optimism, compassion, and sense of social responsibility. Gregor thrives, except for the festering wound in his carapace (back) that will not heal--the wound made when his father threw an apple at him during his traumatic early life in "Metamorphosis" as a human-turned-insect.

In 1923, as a result of an life-changing encounter with Ludwig Wittgenstein, and in the context of growing anti-Semitism in Central Europe, Gregor flies (literally) to New York, where he takes up residence and soon runs into Mr. Charles Ives, the composer and insurance executive, who gives him a job as an actuary. The novel describes Gregor’s subsequent adventures over the next 20 years--as a surprise witness at the Scopes trial, as the subject of Ives’s famous "Insect" Piano Sonata, and finally as the confidant of Franklin Delano Roosevelt and member of his "brain trust." Along the way, Gregor contributes greatly to the science of risk analysis and management.

In 1943, at the president’s request, Gregor joins the atomic bomb project in Los Alamos, New Mexico, where he serves as risk analyst and all-around moral questioner during the bomb’s development. Finally, Gregor Samsa, having survived 30 years as an insect, becomes physically ill as the old apple-infection turns to septicemia; and he becomes existentially ill, as he confronts the implications of nuclear warfare. He decides to commit suicide by placing himself among the instruments at Ground Zero of Trinity site, vaporizing in the explosion of the first atomic bomb; indeed, "Gregor’s was the most expensive assisted suicide in history." (p. 458)

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Dr. Thomas Graboys is an eminent Boston cardiologist who developed Parkinson's disease in his late 50s. Shortly after his wife died in 1998, Graboys noticed unusual fatigue and mental sluggishness. He attributed these symptoms to grief, but they continued and he later experienced episodes of stumbling, falling, and syncope. During 2003 Graboys confided to his diary that it was "increasingly difficult to express concepts." ( p. 30) He also noticed tremor, problems with dictation, and frequent loss of his train of thought, symptoms "typical of Parkinson's." (p. 24)

While Graboys recorded these concerns in his diary, outwardly he denied that anything was wrong, even to family and close friends.  In fact, his denial continued until the day in 2003 when a neurologist friend accosted him in the parking lot and pointedly asked, "Tom, who is taking care of your Parkinson's?" (p. 27) Dr. Graboys faced an even more difficult challenge in 2004 when he developed the vivid, violent dreams and memory lapses that led to a diagnosis of Lewy body dementia, a form of progressive dementia sometimes associated with Parkinson's disease. With the cat out of the bag at last, the author finally began to confront the issue of professional impairment. In mid-2005 Graboys's colleagues seized the initiative and told him that "it was the unanimous opinion of my colleagues that I was no longer fit to practice medicine." (p. 36)

Writing now with the assistance of journalist Peter Zheutlin, Graboys reviews these events with unblinking honesty. He confronts his anger and denial, but also reveals the thoughtful, generous and passionate side of his character. "What will become of me?' This is the question that now lies at the center of Dr. Graboys' personal world. He knows that his loss of mental and physical control will worsen. With almost superhuman effort and his family's strong support, the author has been able to adapt to his limitations and maintain a sense of meaning in his life. Will that continue? In a chapter entitled "End Game," he addresses the question of suicide. Reflecting on his condition, especially the dementia, Graboys asks, "Will I lose myself, my very essence, to this disease?" (p. 161)

In the last chapter, Graboys acknowledges that he has no "simple prescription that will help you or someone you love live a life beyond illness, or tell you how to tap the hope that lives within." (p. 181)  However, he then goes on to make several suggestions of the advice-manual variety: "Use your family and friends as motivation to live life with as much grace as you can muster." "Find a safe place... to unburden yourself of anger." "Acceptance is key to defusing anger, stress, and self-pity."  "Use your faith in God, if you believe in God."  (pp. 181-182)

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Dr. Hojat's comprehensive survey of empathy in medicine is subtitled "Antecedents, Developments, Measurement, and Outcomes." He begins by carefully distinguishing empathy from related concepts or qualities, like sympathy and compassion; and by clarifying the cognitive, as opposed to affective, nature of empathy. Essentially, empathy creates our sense of connectedness with other human beings and, to a limited extent, with some animals. After sketching its evolutionaly and neurological substrates, Hojat then summarizes research in measuring empathy, with particular emphasis on empathy in the clinical setting.

The Jefferson Scale of Physician Empathy (JSPE), developed by Hojat, is among the most useful and well-validated self-report survey instruments. This scale is also available in a form to be completed by patients, the Jefferson Scale of Patient's Perception of Physician Empathy (JSPPPE). Hojat presents the results of numerous studies using the JSPE and other instruments to asses medical student and physician empathy. For example, some evidence suggests that female physicians are more empathic than male physicians, that students with higher empathy scores are more likely to engage in prosocial behavior, and that primary care attracts medical students who score higher in empathy. There is also a considerable body of evidence showing that empathic engagement with patients by physicians leads to better health outcomes.

The chapter on enhancement of empathy is especially important for medical education. Hojat reviews various methods for enhancing clinical empathy, including, for example, communication skills training, systematic "shadowing," teaching narrative skills, and study of literature and the arts. He concludes "research shows that empathy can be enhanced effectively by dedicated educational programs," although such programs face many obstacles in the current context of medical education.

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Doctors in Fiction. Lessons from Literature is an interesting collection of short essays about fictional physicians by Borys Surawicz and Beverly Jacobson. The authors, one a cardiologist (Surawicz) and the other a freelance writer, discuss more than 30 physicians drawn from novels, short stories, and drama, and representing a fictional time frame from the late 12^th to the early 21^st century.  In each chapter the authors present one or more of these physicians in context, briefly introducing the work, the writer, and a précis of social context.

Dr. Andrew Manson in A. J. Cronin's The Citadel and Dr. Martin Arrowsmith in Sinclair Lewis's Arrowsmith appear in the section entitled "Idealistic Doctors." Other examples of "good" physicians include Tertius Lydgate (Middlemarch), Bernard Rieux (The Plague), and Thomas Stockman (An Enemy of the People).  At the other end of the spectrum are failures and burnt-out cases, like alcoholic psychiatrist Dick Diver in F. Scott Fitzgerald's Tender Is the Night and the debauched abortionist Dr. Harry Wilbourne in Faulkner's The Wild Palms.   

Some of the best examples of fallen doctors appear in Anton Chekhov's stories and plays. Chekhov, a practicing physician himself, well understood the triumphs and tragedies of the medical experience. Surawicz and Jacobson single out Dr. Andrei Ragin, the dispirited medical director of Chekhov's Ward 6 for special attention. They also touch briefly on Dymov, an idealistic physician who dies as a result of diphtheria he contracted from a patient (The Grasshopper); Korolyov, a young doctor who develops an empathic bond with a woman who suffers from chronic anxiety ("A Doctor's Visit"); Startsev, a practitioner who grows to love money more than his patients' welfare("Ionych"); and Astrov, the dedicated proto-environmentalist physician in Uncle Vanya.

Two of the most striking figures in Doctors in Fiction arise from contemporary popular novels, although their fictional lives take place in an earlier time. The first is Dr. Adelia Aguilar, the protagonist of several mystery novels by Ariana Franklin. Aguilar is a graduate of the University of Salerno and serves as a forensic consultant to King Henry II of England in the 1170s. The other is Dr. Stephen Maturin, well known to millions of readers as the particular friend of Captain Jack Aubrey in  Patrick O'Brian's series of novels about the British navy during the Napoleonic Wars. Maturin is not only a famous physician and naturalist, but also a British undercover intelligence agent.

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The idea for this anthology of poetry and prose about Alzheimer's disease patients and their caregivers arose from the editor's own experience writing about her mother. Encouraged by Tess Gallagher, Edward Hirsch, and others, Holly Hughes invited writers to contribute poems and short prose pieces that witnessed to the human experience of Alzheimer's disease. The resulting anthology includes about 120 pieces chosen from over 500 submitted. The editor has arranged these in a series of thematic sections, one of which, "Missing Pieces," contains the nine prose contributions to this primarily-poetry anthology. At the end of each work, the author has provided the reader with a brief (two or three sentence) comment on the circumstances that led he or she to write it.  Tess Gallagher's Foreword describes her experience living with, and caring for, her mother who suffered from Alzheimer's disease, two "widows together" (p. xv), during the months and years after Raymond Carver's death (Gallagher was married to Carver).

The works address an array of closely related themes in a wonderful variety of voices. A major focus is the Alzheimer's patient's slipping away, withdrawing, changing, whether it be toward dissolution, or into a different country. Sometimes the change reveals "your true life: / the bright unruffled water, / a sudden lift of wings," as in Linda Alexander's "Your True Life" (p. 23). Sometimes life has fled elsewhere, as in "No Destination" by Penny Harter (p. 67), or gradually dissolved ("Verbal Charms" by Melanie Martin, p. 41). Other poems evoke the unexpected and sometimes humorous antics of the demented. Witness, for example, Len Roberts' "My Uncle Chauncey Drove My Aunt Eleanor" (p. 36) and "Early Alzheimer's" by Sheryl L. Neims (p. 55). Another theme is the loving commitment of spouses who are taking care of a demented partner so many years after saying "I do" "This is what you signed on for / in such bodily earnest before the distractible / justice of the peace 64 runaway years ago" (E. A. Axelberg, p. 79). Parent-child relationships also take on new meaning, as in the touching poems "Bath" by Holly Hughes (p. 119) and "Pacific Sunset" by Arthur Ginsberg (p. 127). Finally, the inevitable themes of death and mourning pervade the anthology's last section entitled, appropriately, "Still Life."

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In the Introduction the editors describe the "day of reckoning" they each experienced at one point--the sudden realization that they were "fat." Prior to this insight, they had identified fatness with negative characteristics, like being funny or undesirable; the breakthrough came when they were able to experience fatness as simply factual and not value-laden. This freed them to enjoy their lives without looking over their shoulders, so to speak, to see how other people reacted to them. Their liberating insight led to this anthology, which consists of "works of notable literary merit...that illustrate the range of ’fat’ experience." (p. xiii)

A number of the stories and poems in Who Are You Looking At? have individual entries elsewhere in this database. These include: Andre Dubus, The Fat Girl; Stephen Dunn, Power; Jack Coulehan, The Six Hundred Pound Man; J. L. Haddaway, When Fat Girls Dream; Patricia Goedicke, Weight Bearing; Rawdon Toimlinson, Fat People at the Amusement Park; Monica Wood, Disappearing; and Raymond Carver, Fat (annotated by Carol Donley and also by Felice Aull and Irene Chen).

One of the outstanding pieces in the anthology is a long story by Junot Diaz entitled "The Brief Wondrous Life of Oscar Wao" (42 pages). Oscar is a Dominican boy who is both fat and a nerd. He is obsessed with girls, but none will have anything to do with him, until he meets Ana who becomes his (platonic) "best friend" until her boyfriend Manny returns from the Army.

As narrated by Oscar’s sister’s boyfriend, things go from bad to worse until Oscar spends a summer in Santo Domingo and meets Yvon, an older woman whose former boyfriend, the Captain, is a cop. When Oscar pursues Yvon, he first gets beat up and later the Captain kills him, but before the end he actually makes love to Yvon. In his last letter to his sister, Oscar writes, "So this is what everybody’s always talking about! Diablo! If only I’d known. The beauty! The beauty!"

Editor's note (4/14/09): The Brief Wondrous Life of Oscar Wao was published as a full-length book in 2007 and won the Pulitzer Prize.

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The Human Stain is the third of Philip Roth's trilogy of novels that explore the relationship between public and private life in America during the second half of the 20th century. As in American Pastoral (1997) and I Married a Communist (1998), Nathan Zuckerman, Roth's favorite alter ego, serves as the narrator. After a prostate operation rendered him impotent, Zuckerman has retired from the world to become writer in residence at idyllic Athena College.

There he meets Coleman Silk, a former dean and classics professor who was forced to resign because of a supposed racial slur, in which he asked whether two students who had registered for his course but never attended a lecture were "spooks." They were African-Americans. Hence, political correctness dictated that Silk's academic career was history.

Zuckerman enters the scene a couple of years later, when the septuagenarian Silk is having an affair with an illiterate college janitor. This liaison has revitalized the old professor, whose wife died during the period of disgrace after his "racism" was exposed. However, Silk's enemies at the college, led by a bitterly proper young deconstructionist, have gone on the warpath again, this time condemning him for exploiting the young janitor.

The real story, though, lies deep in Coleman Silk's past. We eventually learn that Silk is a light skinned African-American who gradually drifted across the American racial divide and for 50 years has successfully passed as a white Jew. The irony in this situation is complex. A black man thought by the world to be Jewish is publicly disgraced for uttering the word "spook" in its correct denotation. (This is reminiscent of a case a few years ago in which a public official in the United States was chastised for using the word "niggardly" with reference to an inadequate budget allocation.)

The situation is doubly ironic because Silk has chosen to live his life as a white man, thereby in a sense establishing his own racism. Silk's original goal had been to live as an individual, and not as a representative of his race, but in choosing to deny his roots, perhaps Coleman Silk's guilt is deeper and more complex than his pursuers at Athena College realize.

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Dr. Lois Ramondetta was a fellow in gynecologic oncology at M. D. Anderson Hospital in 1998 when she met Deborah Rose Sills, a professor of comparative religion, who had undergone surgery for ovarian cancer the year before and was re-admitted for small bowel obstruction. Ramondetta and Sills "clicked," and their relationship developed over several years from doctor-and-patient to close friendship and eventually co-authorship of this memoir. The women tell separate stories (Sills's are in italics), which interact more and more as the relationship progresses. Ramondetta writes about marriage to a medical classmate, its rapid unraveling under the stresses of residency, her infant daughter, and the complexities of her life as a single mother. Sills' sections tell of a highly regarded professor accepting a life with cancer, but struggling against reinterpreting herself as sick. Some of their interactions take place at MD Anderson Hospital, as Sills returns for a bone marrow transplant and later for management of recurrences and complications.

Their friendship also blossoms at their respective homes in Houston and Santa Barbara. Among the stories they share is that of Ramondetta's courtship and marriage to a local disk jockey, and the rock-solid support of Sills's family.  In addition, they begin to collaborate, first on a lecture and then on an academic paper about spirituality and ovarian cancer. This dialogue eventually leads to the book itself, completed only after Sills's death in 2006.

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