Summary:

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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A woman's profile occupies the foreground of this computer-generated image. She is depicted from the base of her neck up to near the top of her head. A blue device protrudes from her neck, and a small section of a ridged tube, presumably connected to the blue device, occupies the bottom right-hand corner of the image. The device is a tracheal breathing tube, shown in the online photograph of the artist that accompanies the image. Worsham suffers from amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease.

The lady in the artwork wears a polka dot blouse and a vibrantly patterned hat. Her eyes look directly forward, as though oblivious to the onlookers in the image's background, and her mouth hangs agape. She wears lipstick, eye shadow, and rouge.

A young boy's face with big eyes, rosy cheeks, and brown hair looks impudently at the woman from the lower right half of the image; his mouth holds a slightly upturned grin. Behind the boy and occupying the background stands a woman whose green eyes stare at the disabled lady's profile. The staring lady has long light brown hair and she wears lipstick, makeup, a purple kerchief, and a green dress. Partially separating the boy and the woman from the disabled lady is a thin band of blue background - presumably sky - that cuts down through the center, albeit the background, of the image.

A dull green border of blocks frames the scene. Each corner is decorated with a red heart, the points of which angle into the center of the image. Big block letters inscribe the artwork's title: the top of the frame reads "HEAD," the bottom reads "TURNER."

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Aging, Jewish-Canadian gum-shoe, Benny Cooperman, awakes in hospital from a coma to discover that he has forgotten many things about himself and his recent past. He has also lost the ability to read, although he still can write: alexia sine agraphia. The therapists give him a memory book as an aide to functional recovery; he must record vital information for later deciphering. He learns that he was found unconscious in a dumpster with a blow to the head; beside him lay the corpse of a woman professor.

Leaving the hospital only once (without permission), Cooperman uses dogged determination and ingenuity to unravel the complex academic homicide. Adapting to his own disability proves just as demanding to Cooperman as solving the murder. Without giving away the ending, this "whodunit" involves premonitory dreams, pretty students, rogue professors, a crusty underworld, and drugs. Engel's trademark light touch and vignettes of Toronto and its University colleges and hospitals add humor and credibility to the vivid yarn.

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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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The story of a woman artist's slow decline into dementia and death as told through the eyes, words, and reflections of her philosophy professor son. Through his memories of their 1950s life together, he reconstructs a speculative analysis of her early married life with his soil-scientist, Russian-immigrant father.

The one older brother becomes a neuropathologist who investigates the very disease that slowly strips their mother of herself. Their father tends to her growing needs at the family farm, but he dies suddenly and she must be placed in an institution where one nurse alone seems to respect her dignity.

The brothers' rivalries and misunderstandings are recapitulated in their different responses to their father's death and their mother's illness: the physician retreats to scientific explanations of the "scar tissue" in her brain; the philosopher looks for evidence of personhood and for reassurance that death should not be feared. His obsession with his mother's condition stems from a deeply felt sense of guilt; it destroys his marriage and condemns him to depression, hypochondria, and shame as he creates and diagnoses the same illness in himself, long before it can be detected by doctors.

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In dire financial straits, the physician-researcher, Dr. Malcolm Sayres (Robin Williams), accepts a clinical job for which he is decidedly unsuited: staff physician in a chronic-care hospital. His charges include the severely damaged, rigid, and inarticulate victims of an epidemic of encephalitis lethargica. Sayres makes a connection between their symptoms and Parkinson’s disease. With the hard-won blessing of his skeptical supervisor, he conducts a therapeutic trial using the new anti-Parkinson drug, L-Dopa.

The first patient to "awaken" is Leonard Lowe (Robert De Niro) who, despite being "away" for many years, proves to be a natural leader, with a philosophical mind of his own. Other patients soon display marked improvement and their stories are told in an aura of fund-raising celebration marked by happy excursions.

Gradually, however, problems develop: patients have trouble adapting to the radical changes in themselves and the world; Leonard grows angry with the imperfection of his rehabilitation; the horrifying side effects of L-Dopa appear; and Leonard’s mother (Ruth Nelson), initially happy for her son’s recovery, is later alienated by the concomitant arousal of his individuality, sexuality, and independence. The film ends with "closure of the therapeutic window" and marked regression in some patients, but not before they have awakened clinical commitment and a new ability to express feelings in their shy doctor.

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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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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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During the opening credits, the camera slowly pans over the myriad medications for Marvin (Hume Cronyn), the elderly, bedridden invalid cared for round-the-clock by his daughter, Bessie (Diane Keaton). The film opens with Bessie visiting Dr. Wally (Robert DeNiro), a pathologist cum primary care physician, for diagnostic tests which show that she has leukemia.

Bessie also takes care of her Aunt Ruth, whose electric unit for pain relief and penchant for soap operas provide comic relief in this bittersweet drama about families and responsibilities. Because Bessie's best chance for survival is a bone marrow transplant, she contacts her sister, Lee (Meryl Streep), estranged since their father's first stroke and Lee's decision not to help care for him.

Lee's oldest son, Hank (Leonardo DiCaprio), is a troubled seventeen-year-old who sets fire to their home and is hospitalized in a mental institution. Released for this special trip to visit his Aunt Bessie, Hank continues his rebellion by refusing to be tested as a possible donor. Lee is a dysfunctional mother: she does not respond to her son's apology regarding the arson, she has her younger son light cigarettes, and she confuses discipline with control.

The family unites in and around Marvin's room. Reunions are never as smooth as planned, and tensions, stored bitterness, and anger erupt. The sisters confront each other in their failures as sisters--Bessie had never contacted her nephews in any way and Lee had never looked back. But through it all, love and caring emerge: the sisters come to a new understanding, Bessie's reaching out to rebellious Hank is reciprocated, and Lee even learns to communicate caring to her son.

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Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.

The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.

The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.

For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.

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