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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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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A thirty-five year old English professor (and brilliant writer) diagnosed with ALS (Amyotrophic lateral sclerosis, Lou Gehrig’s disease) is told he has less than five years to live. Nine years later he publishes a series of 12 personal essays that chronicle his remarkable journey from diagnosis ("Getting Up in the Morning") to being mindful, "cultivating the eternal present" ("Living at the Edge"). He shares with us the interim of conundrums, spirituality, and the quotidian by reflecting on his New Hampshire life: Unfinished Houses, Wild Things, Mud Season, Winter Mind.

In almost every essay Simmons reflects on the rewards of "mystical seeing". We all have "within us this capacity for wonder, this ability to break the bonds of ordinary awareness and sense that though our lives are fleeting and transitory, we are part of something larger, eternal and unchanging." (p. 152) "Most of us have found that a line of poetry or scripture, a passage of music, the turning of a leaf in sunlight, or the sight of a child splashing in a stream can suddenly become a doorway through which, as William James writes, ’the mystery of fact, the wildness and the pang of life, steals into our hearts and thrills them.’" (p. 101)

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Shay, a psychiatrist who specializes in post-traumatic stress disorder (PTSD), juxtaposes the narrated memories of his patients who are Vietnam veterans to the story of Achilles in Homer's Iliad. He finds that the roots of their illness, like that of the ancient hero, lie in betrayal of duty by senior officers who failed to do "what's right," in the repression of grief, and in the social limitations imposed on expressions of love between men.

These stressors lead to guilt, wrongful substitution, and dangerous rage, called the "berserk" state. The mental pathology is fostered by an equally wrongful failure to honor the enemy; return to "normal" is never possible. The book concludes medically with recommendations for prevention.

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A son’s story of his father’s illness, treatment, and resultant destruction by the "psychic-driving" experiments of Dr. Ewen Cameron at Montreal’s Allan Memorial Institute in the 1950’s. The effect of the father’s illness on the family is recounted, as is the son’s gradual realization, only when he is himself about to become a psychiatrist, that something abnormal must have taken place during those long hospitalizations. Weinstein tells other patient stories in some detail as he recounts the legal fight for compensation awarded finally in October, 1988.

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On 15 March 1977, the acclaimed Quebec writer, Hubert Aquin (HA) born 1929, blew out his brains on the grounds of Montreal's Villa Maria, a convent girls' school, where his first wife had been educated and only steps from the Westmount home that he shared with his psychiatrist partner, Andrée Yanacopoulu (herself now a writer of medical history) and their nine-year old son, Emmanuel. Yanacopoulo had known of the suicide plan well in advance and, as part of a pact, had agreed not to stop it.

Through a series of interviews with family, ex-family, friends, lovers, colleagues, secretaries, students, and cleaning ladies, mostly between 1977 and 1983, Sheppard conducts an "investigation" to determine why Aquin ended his life at that time and in that way; and why his partner allowed it. Only a single interview seems to have been conducted after 1985. Each chapter is preceded by an extensive citation from one of Aquin's four novels, followed by stage direction notes for music, sound effects, and mood, and comprised of situated testimony written as dialogue for a film script.

Just as many explanations for Aquin's suicide emerge from this inquiry as there are witnesses. The causes range from the political, through the physical, psychological, social, symbolic, and emotional, to the spiritual. For each witness, they are the truth. They include 1. the failure of the recently elected separatist government to declare Quebec to be a sovereign nation; 2. Aquin's much publicized dismissal from a newspaper job, which he had counted on for a prominent editorial opportunity; 3. the failure of one (or several) love affair(s); 4. the collapse of two marriages; 5. estrangement from the two sons of his first marriage; 6. chronic ill health due to alcoholic epilepsy; 7. unresolved conflicts with his parents; 8. the result of his own writing which displayed a longstanding fascination with sex, death, violence, and suicide; 9. the result of writer's block; 10. a "classic" capitulation of a "québécois" male to the tyranny of women, either a "québécoise" mother or--(take your choice)-- a non-québécoise lover; 11. a covenant with 9 year-old boys crossing several generations; 12. the destiny of a man with a death wish, a chronic predisposition to self killing, who, according to one engaging friend (Jacques Languirand), had probably already committed suicide in a previous life as a late Antique Roman, and would likely do again--perhaps already has.

Sheppard dedicates his book to more than one hundred suicides from Sappho to Kurt Cobain. He shapes the responses of his subjects by his pointed questions and the juxtaposition of their answers to advance his overriding theory that Aquin's suicide was his finest work of art. All the varying explanations co-exist peacefully within Aquin's immortality, which resides in the minds of those who remember and grieve for him. No single interpretation is more plausible than another. Sheppard explicitly links these multiple "truths" to the early film work of Kurosawa; we are also reminded of Iain Pears's An Instance of the Fingerpost and The Dream of Scipio (see this database).

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In September 1796, 32-year-old Mary Lamb (1764-1847), stabbed her mother to death with a carving knife during an incoherent frenzy. Almost immediately, she became calm and was sent to a madhouse, remaining away from home for months until her grieving and unforgiving father had died. Mary was released into the care of her much younger brother, Charles (1775-1834), soon to be known for his poetry and essays. She never went to prison, but would return to the madhouse many times over the next fifty years. As a result, this life is an interesting exploration of chronic mental disturbance in the early nineteenth century.

Neither Charles nor Mary ever married; they always lived together and professed to be each other's dearest friend. Obliged to eke out a middle class income--she (until her crime) at dressmaking, he in an office--they turned to writing, often together. The Lambs' famous Tales from Shakespear [sic] was written mostly by Mary, but their friend William Godwin under Charles's name as sole author first published it. Mary's other books, edifying texts for young female readers, were published anonymously.

Letters to their many friends reveal Mary's vexation with Charles's drinking and smoking and his concerns over her multiple relapses, which were triggered by being obliged to move house. Charles predeceased his older sister by ten years and she spent the rest of her life in chronic care of a private couple, visiting his grave almost every day.

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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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