Summary:

When Jamie Heywood, the eldest of three brothers in a tight New England family of engineers, learns that his middle brother Stephen (they all are in their 20’s at the outset of this drama which begins, for them, in early 1998) has amyotrophic lateral sclerosis (ALS), he has just assumed the position of entrepreneur in technology transfer at Gerald Edelman’s Neurosciences Institute, the prestigious think tank of the 1972 Nobel Laureate in Physiology and Medicine, in La Jolla, California.

Jamie quickly announces his resignation and simultaneously his decision to devote his life to helping his brother in the only way he can--as manager, CEO, COO and staff of, initially, a loosely organized team effort to develop a cure for ALS, an insidious wasting disease of the nervous system that progressively leaves the person with the merest remnants of voluntary motor function.

Jamie’s resignation and his move from the West to East coast is but the mildest of changes in the weather for what becomes a perfect storm of technology recruiting, fund-raising, career-rebuilding and the emotional equivalents of El Niño, profoundly affecting at least four families, three of them Heywoods: Stephen Heywood, the strapping carpenter/house-restorer with ALS, and his wife, Wendy; Jamie, and Melinda, his belly-dancing wife with a PhD in medieval French literature; the brothers’ mother, Peggy, and father, John; and, lastly, the author and his father, Jerome, and mother, Ponnie (a Polish diminutive).

Concomitant with Stephen’s development of ALS, Ponnie begins to evidence the dementia of Steele-Richardson-Olszewski syndrome, also known as progressive supranuclear palsy, a form of brain decay uncannily similar to ALS. (Fortunately for the Heywoods, ALS involves only the motor nerves, not the cognitive apparatus.)

The author’s decision to include his family’s ordeal is wise, generous and instructive. The Heywoods and Weiners are both engineering families with an academic engineer as the pater familias and both are trying their best to cope with a deteriorating illness that dismantles the center of all cerebral engineering activity, the brain. The comparison of the diseases and the responses of all the players involved are culturally and psychologically dissected with the author’s trademark precision and kindness. But this book, as the title indicates, is more about the keeper than the brother.

Within minutes of his learning of Stephen’s diagnosis, Jamie becomes a man possessed. He moves quickly, as though by intuition and almost a fated skill, from technology transfer to technology-bricolage; genetic therapy on the fly; and people-, funding- and support-transfer. In fact, when there is no transfer involved, Jamie creates in order to transfer.

Like Gregor Samsa, in the short story by Franz Kafk, from whom Weiner also deftly borrows another parable, "An Imperial Message," (to illustrate, metaphorically, the pathophysiology of ALS as a disease in which neural messages, like the Imperial Message, go awry), Jamie undergoes a metamorphosis, albeit admittedly much less drastic than Gregor’s. He molts his undergraduate degree in engineering at MIT to emerge as a self-appointed manager of any and all ALS research and gene therapy in the U.S. that might help retard the progress of his brother’s illness.

Recruiting, petitioning, nourishing, cajoling, funding, and courting researchers and clinicians alike, Jamie meets, entertains, enlists and co-ordinates the efforts of gene therapy researchers and other medical scientists. He becomes a fund-raiser with the help of Melinda and her family of belly dancers, raising $240,000 as a result of the First Annual Belly Dance Extravaganza. His efforts involve the Heywood and Weiner family members, as epicentric waves of activity inevitably affect them all.

We watch, through Weiner’s eyes (and the diaries of Wendy and Melinda, whom he cites with permission), as the four families experience the predictable mood shifts that accompany a devastating illness and the great adventure of a risky attempt to work a miracle (a miracle that Jerome E. Groopman grumpily and stuffily bemoans in a cited Wall Street Journal editorial): excitement when a genetically engineered ALS mouse outlives its cohorts and money starts to flow; and disillusionment, when Stephen’s disease relentlessly progresses, Jamie’s marriage dissolves for a lack of boundaries, as Melinda, Jamie’s wife, records in her diary, and the author’s mother slips deeper into a dementia that Lucretius, Weiner’s authorial inspiration of the book, would easily recognize as part of the world explored in his famous treatise De Rerum Natura.

By the end of the book, there is an air of exhaustion yet surprising calm--perhaps the calm after the storm--as we witness the normalcy of Stephen, in his motorized wheelchair, playing with his son. As Stephen repeatedly affirms to Weiner, now a family friend and no longer merely a reporter, "I’m fine."

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This is a collection of Elizabeth Layton's work, organized chronologically from 1977-1991. Contents include a biography and epilogue by a 27-year-old reporter (Don Lampert) who discovered, promoted, and became a dear friend of "a depressed grandmother with a handful of drawings under the bed."

Layton discovered contour drawing when she was age 68 and claims to have drawn herself out of mental illness. Her subject matter is self-portraiture, marriage, aging, depression, grandmothering, dieting, and political commentary (nuclear holocaust, capital punishment, mythology and hospital death).

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A Place Called Canterbury by social historian Dudley Clendinen, former New York Times national correspondent and editorial writer, provides readers with an intimate and revealing account of aging in a particular place at a particular time--Canterbury Tower in Tampa, Florida. The story about the author's mother, Bobbie--and so many others--begins in 1994, a few years after the death of James Clendinen, Bobbie's husband of 48 years, and known to the community as the progressive editor of the Tampa Tribune. Although she had been "falling apart, a piece here, a piece there...collapsing vertebrae...bent, frail, and crooked...subject to spells and little strokes...." (p. xii),

Bobbie Clendinen was in reasonably good health. Nevertheless, her grown son and daughter did what most children their age do--they worried. When she finally agreed to move from the home where she had lived for twenty-nine years to Canterbury Towers, room 502, two bedrooms, two baths ($88,000 in cash, $1505 each month), Clendinen and his sister were relieved. She would be cared for and safe in "the small, cream colored, obsessively well-run geriatric apartment tower and nursing wing...across a broad boulevard from an arm of Tampa Bay" (see book cover).  And, so many of her old friends were already established residents!

Clendinen was fascinated by his mother's new circumstance and by what he came to regard as the new old age. As a writer, he could not resist the opportunity before him. Although he lived in Baltimore, he could come and go, but over the twelve-year period of his mother's residence--three in the Towers and nine years in the hospital wing--he spent more than 400 days as a live-in visitor, observer, listener, interpreter. This unusual arrangement provided Clendinen with a close-up view of a 21st Century phenomenon, the comings and goings of aging people in the final setting of their lives.

Canterbury is a well-run camp and life there is a soap opera. Between his exchanges with the witty rabbi and the former jitterbug champs, the enthusiasm generated by a nudity calendar proposal (declined) and the geriatric bib enterprise (thriving), the inhabitants provided Clendinen with an abundance of riches. Whether at lunch in the dining room overlooking the Bay, over daily drinks at 5pm, or in bed in the health center, everyone of this Greatest Generation had a story to tell. This ethnographic page-turner, with its cohort of named characters--the Southern Belle, the Rabbi who escaped the Holocaust, Emyfish, the ageless New Yorker, Lucile, the warm-hearted Fundamentalist, the raunchy Atheist, the crusty Yankee, the horny widower, and the maddeningly muddled Wilber--reads like fiction. Whether rich or poor, married or widowed, Clendinen listened as they spoke and in doing so became a trusted friend and chronicler of small and great events in their collective lives: childhood, Depression, World War II, medical advancements, healthcare costs, 9/11. Because Bobbie Clendinen spent so many years in the hospital wing, much of the story describes the kind of care and staff standards that we would hope for all--including ourselves. Mrs. Clendinen died at age 91.

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Lenny Savage (Philip Bosco) lives in the Sun City retirement community in Arizona with Doris, his companion of 20 years. When Doris dies, her children sell their home and Lenny's son and daughter, both in their late 30's, become responsible for his care. Wendy (Laura Linney) is a playwright in New York City. Jon (Philip Seymour Hoffman) is a theater professor in Buffalo. Niether has seen Lenny for many years. He had been an abusive and violent father. The mother is absent, apparently having abandoned the family when the children were young. Both Wendy and Jon seem lost. Wendy is having an unsatisfying affair with a married man and Jon's partner, Kasia, is about to return to Poland because her visa has expired and he is not ready to marry her. Reaquainting themselves with their father forces them to confront the danger of letting unhappy childhood haunt them, and makes them recognize their difficulties being adult (they have Peter Pan names).

Lenny has dementia, probably Parkinson's. Wendy and Jon find him in restraints in a hospital bed. He is hostile from the outset. They take him from the bright light in Arizona to dark sleet in upstate New York, and they put him in a nursing home. Wendy stays with Jon as their father "settles in." She feels guilty but does all the wrong things in trying to make up, while Jon is pragmatic and resentful. Brother and sister get to know each other better. As they bicker, their father seems to watch from a distance with an opacity that is also a kind of dignity. His condition deteriorates and he dies in the nursing home. Wendy returns to New York.

Six months later, Wendy's play about their childhood ("Wake Me up when it's Over") is being produced in New York, and Jon is on his way to give a conference paper ("No Laughing Matter: Dark Comedy in the Plays of Brecht") in Poland where he plans to be reunited with Kasia.

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George Hall has recently retired when he discovers a lesion on his hip which he takes to be skin cancer. Even though his doctor tells him that it is simply eczema, George is not reassured for long. His worry gradually becomes panic. He learns that his wife, Jean, is having an affair with an old friend of his, that his daughter, divorced single mother Katie, is going to marry a man he disapproves of, and that his son, Jamie, intends to bring his gay lover to the wedding. At this point his hypochondria becomes distinctly pathological. He attempts to excise the lesion himself with kitchen scissors and ends up in hospital.

With the help of antidepressants and psychotherapy, he begins to recover, and then, finding other marks on his skin, relapses. Things come to a climax at Katie's chaotic and (for the reader) very funny wedding, where George, on a risky mixture of valium and alcohol, makes an overly confessional speech and then physically attacks his wife's lover. Order is restored with the help of Jamie and Ray, the groom, who turns out to be heroically kind and efficient (and whose working-class status is then forgiven by George and Jean), and the novel ends with happy reconcilations. George's health anxiety has not, though, entirely disappeared and the novel ends with a clear sense of the mental effort required, especially as we age, not to give in to our fears of disease and death.

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This is a collection of approximately 45 pathographies-essays, memoirs, biography, autobiography, poems, and reflections on illness experiences -grouped loosely into four categories of related subject matter. These categories are: Illness and Identity: Dynamics of Self and Family; Concealing Illness, Performing Health; Agency and Advocacy; Medicine at the Margins. The majority of the pieces are written by non-health care academics about their experiences with a wide variety of illnesses. A few have been written by or with health care professionals.

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In the Arctic, winter goes on for ten months every year. The cold temperatures penetrate every aspect of human life. Existence is a struggle. In the Canadian community of Rankin Inlet, an Inuit woman finds personal tragedy as abundant as the snow. Victoria is diagnosed with tuberculosis (puvaluq) as a child and sent to a sanatorium far south of home. Following treatment with medication and a thoracoplasty, she returns to her town years later. Victoria's experience has changed her view of the world but she quickly discovers that in her absence, the people and locale have transformed too.

She marries an outsider, John Robertson, who is a British businessman. His success and local influence allow him to arrange for a foreign-owned diamond mine to open in the area, and with it, a new hospital for the territory. The couple have three children - a son, Pauloosie, along with two daughters, Justine and Marie.

Victoria seems a magnet for misfortune. At age 16, she has a miscarriage. A fourth child dies during a complicated delivery. Her marriage is increasingly strained beyond repair. Victoria's father suffers a stroke and becomes demented. Her mother dies of lung cancer. Husband John is murdered - someone slits his throat. Marie commits suicide. Pauloosie leaves home and sails to the South Pacific.

The Robertson family frequently interacts with the American primary care physician stationed in the isolated region. Dr. Keith Balthazar is a middle-aged atheist who has toiled in the Arctic for more than 20 years and abuses morphine. He keeps a journal of his experiences and meditations and commiserates with the local priest, Father Bernard.

Escape appears to be the best chance at happiness. For Victoria and most everyone else living in this harsh and beautiful land, survival - both physical and emotional - is hard. Personal choices are confusing. Nature doesn't seem to care one way or another.

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This is another wonderful book from Dr. Sacks. The subtitle, “Tales of Music and the Brain,” is accurate: we have a charming and informative mixture of stories of patients and the neurophysiology that interprets how music is processed and performed. The book is synthetic in combining cases from his practice, other clinical reports, letters from correspondents, references to medical literature, and even Sacks’s own personal experiences with music.

Sacks finds that humans have a “propensity to music,” something “innate” in human nature, perhaps like E. O. Wilson’s biophilia. “Our auditory systems, our nervous systems,” he writes, “are indeed exquisitely tuned for music” (xi). Although humans have been involved with music for millennia, it is only in the last few decades that medical imaging (functional MRI, PET) has shown what areas of the brain are active when music is heard.

While humans routinely enjoy music, the book emphasizes unusual events and neurological patients, in short, departures from the norm. Sacks—himself a lover of music—reports on his own experiences with hallucinatory music and anhedonia (loss of pleasure) in hearing music. He describes going to hear the great baritone Dietrich Fischer-Dieskau but finding that he could not, on that day, perceive the beauty of the music. Another condition “amusia,” or loss of musical ability, can be chronic, acquired, or temporary.

Some patients have had injuries or diseases of the brain that change how music is perceived. A man hit by lightning is suddenly obsessed with piano music. Another man (who survived a brain infection) has amnesia about many things but can still make and conduct music at a professional level. The concert pianist Leon Fleisher visits Sacks to discuss his dystonia, or loss of muscle function in one hand (with implications for the brain). Rolfing and Botox helped him heal and he returned to two-handed performances.

Sacks discusses other phenomena that involve brain structures, for example, perfect pitch; persons with this ability have “exaggerated asymmetry between the volumes of the right and left planum temporale” (128). People who experience synesthesia (perceiving notes as colors) have cross activation of neurons in different areas of the brain. Professional musicians (and patients with Tourette’s) demonstrate cortical plasticity, that is they have expanded areas of the brain for particular uses. Children with Williams syndrome have brains influenced by a microdeletion of genes on one chromosome; they have some cognitive deficits and also a great responsiveness to music. For some conditions, the brain determines all; for others, behavior components are also important.

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A beautiful elderly couple are forced to confront Fiona’s (Julie Christie) problems with memory. Always stylish and active, she begins to neglect her appearance and do odd things. She loses her way while cross-country skiing in a familiar terrain; at nightfall, Grant (Gordon Pinsent) finds her frightened and frozen. She decides that she must go into a nursing home, but Grant is horrified to learn that, in order for her to adapt, he may not visit for an entire month. When he finally returns, bearing a bouquet of flowers and hoping for her warm affection, he is stunned to find Fiona pleasant but indifferent to his presence. Instead, she is preoccupied, even infatuated with Aubrey (Michael Murphy), who silently occupies a wheelchair. Fiona is able to interpret Aubrey’s moods and desires.

At first, Grant is hurt and jealous, but gradually he accepts Fiona’s need to be important for someone. Haunted by guilt over an affair with a student years ago, Grant wonders if Fiona is somehow retaliating. When Aubrey’s wife Marian (Olympia Dukakis) brings Aubrey home because she cannot afford the care, Fiona is despondent. He approaches Marian about returning Aubrey to the center. Thrown together by their absent yet present spouses, Marian and Grant indulge in a half-hearted affair. By the time, Aubrey returns, Fiona may have forgotten him, but she still knows Grant and appears to recall his distant infidelity though so much else is lost. But he still loves her and together they can find reasons to laugh.

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This story is set in early nineteen-seventies Tokyo. The point of view is that of Akiko, a working wife and mother of a teenaged son. Her aged parents-in-law live in a cottage next door, but when her mother-in-law suddenly dies of a stroke, Akiko becomes the sole caregiver for her selfish father-in-law Shegezo. As he slides into senile dementia Akiko moves him into her own home, where she almost succumbs to exhaustion and the loss of her independence and career. Ariyoshi's message is clear: society needs to help middle-class families care for elderly relatives.

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