Summary:

Oscar, the narrator of this fresh fictional gem, is ten years old. Because his form of leukemia has not responded to treatment, he has been living in a French hospital for a very long time. His parents, who bring him gifts and surely love him, are uncomfortable during their infrequent visits. Dr. Dusseldorf and the nurses are kind, but indirect and distant in their communications with him. Because no one talks to him about his illness or what is likely to happen, he feels isolated, alone, and miserable.

When Mamie-Rose, a very elderly hospital "pink lady" (hospital volunteer) with an exotic past, enters Oscar's life, she brings honesty, warmth, and comfort to the lost child known as Bald Egg. Guided by this incredible person--a blunt-spoken, irreverent woman who touches him, kisses him, and tells him wondrous stories of her wrestling feats--the boy grows stronger. Who wouldn't under the influence of the Strangler of Languedoc?

Of course Oscar is going to die. In addition to her generous companionship and her introductions of him to other children in the hospital, Mamie-Rose suggests letters to God as a way of feeling less lonely. "So God, on the occasion of this first letter I've shown you a little of what my life in the hospital is like here, where they now see me as an obstacle to medicine, and I'd like to ask you for clarification on one point: Am I going to get better? Just answer yes or no. It's not very complicated. Yes or no. All you have to do is cross out the wrong answer. More tomorrow, kisses. P.S. I don't have your address: what do I do" (65).

With Mamie-Rose treating him like a real kid, "move your but . . . we're not ambling along like snails" and Oscar scripting very candid letters to God, the first-person story about loneliness, love, and compassion is presented with spirited imagination. Oscar's story is quite extraordinary--and unforgettable.

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Dr. Paul Brand, who grew up son of English missionaries to South India, achieved world renown for his research on leprosy and related research on the dynamics of pain. This book, one of several of his reflections on physiology, combines autobiography, stories of research, and reflections on pain and pain management. The three topics roughly correspond to three discrete sections.

It opens with a story of the early death of a child with a rare neurological dysfunction that made her insensitive to pain. Brand's long work with victims of leprosy in India and then in Carville, Louisiana, gave him wide exposure to the consequences of life without adequate pain. Having spent 27 years in India, 25 years in England, and 27 years in the U.S. before writing this retrospective, many of his reflections include observations about cultural variables in perception of pain, how pain is communicated and managed, and how people deal philosophically with the problem of pain.

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Like her earlier collection, Words Like Fate and Pain (see this database), the thread of connection among these exquisite poems is the experience of chronic suffering. However the poems vary widely in focus and content, including those that touch on the intimacies of love found and lost, family relationships, musings on the road, political events, philosophical ideas, and qualities of words themselves. All open doors to an inner life deeply examined and thoughtfully lived. The poems deal frankly not only with the experiences of various kinds of pain, but with pain remembered and feared, with the mental detachment that enables one in pain not only to endure, but even at times to be playful about the business of living life in spite of ongoing suffering.

One is aware of the speaker in these poems as not only a patient, but as a writer who loves words, a woman who enters wholeheartedly into the relationships life puts in her path, and an observer with a wry wit and sharp sense of irony. Poem titles include "Cripple Time," "Trauerarbeit," "Phantom Life," "The Mind, That Ocean," "Pain as Metaphor," "Sleeping in My Notebook," "One, With Egg Roll," and "Waltzing the Gorilla."

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Diagnosed in 1985 with myalgic encephalomyelitis/chronic fatigue syndrome, Susan Wendell's reflections address her struggle first with illness and then with the lasting "social and psycho-ethical" conflicts illness and disability generate in contemporary Western culture. Her specific focus on feminist theory comes from her increasing awareness that "knowledge people with disabilities have about living with bodily suffering and limitation and how their cultures treat rejected aspects of bodily life . . . did not inform theorizing about the body by non-disabled feminists and that feminist theory was consequently both incomplete and skewed toward healthy, non-disabled experience"(p.5).

A chapter on "Who is Disabled?" engages current definitions of disability, who produces them, for what purposes, and to what effect. This chapter addresses the cases of illness and aging and explores the political and other values of the category, "people with disabilities." Other chapters discuss the social construction of disability, disability and illness as stigmatized states that might be re-envisioned as "difference," the enculturation of myths about bodily control and independence, medical authority's inflection of embodiment, the importance of disability perspectives to feminist ethics, and perspectives on transcending the body.

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Margaret Hale is raised in fashionable Harley Street along with her cousin Edith, but when Edith marries, Margaret returns to Hampshire County in the South of England to live with her mother and her father, a country clergyman. The pastoral life she has imagined is quickly disrupted by her father's confession that he is no longer able to remain true to the Church of England and will leave his position to become a tutor of adult learners in the northern manufacturing town of Milton. The traumatic relocation is exacerbated by Mrs. Hale's diagnosis with a "deadly disease" (probably cancer) soon after the move.

Margaret takes charge of most of the practical aspects of the move and then assumes charge of her mother's illness, acting as an intermediary between the doctor and her parents. As well as learning more about her own family's servant, Dixon, who has been with her mother since her girlhood, Margaret becomes friendly with textile worker Nicholas Higgins and his daughter Bessy, who is dying of consumption (tuberculosis) from inhaling textile dust. The Milton workers' activism and independence appeal to Margaret; she rethinks both class and labor relations as a result, including charitable relationships. Her strong opinions and actions bring her into conflict with the family of John Thornton, a factory owner and self-made man who is also one of her father's students.

When Margaret shields John from a stone thrown by a striking worker, however, he avows his love for her. A series of obstacles to the relationship include Margaret's initial rebuff of John and her dishonesty about her exiled brother's secret return to his mother's deathbed. Before the ending brings John and Margaret back together--as well as calming the tension between workers and factory owners--Margaret experiences not only the deaths of almost everyone she loves, but also the suicide of one of the striking workers.

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This scholarly study examines "what it meant to ’talk of diseases’ in the second half of the nineteenth century" (2) and how discourses of health and illness were a vehicle for exploring individual and social identities, including gendered, racialized, and national identities. Narratives of physical illness are not simply artifacts of Victorian medical culture, Vrettos argues, but offer examples of the pervasive "master narratives" that shaped Victorian middle-class culture.

Individual chapters focus on the ill female body as an expressive text with variable legibility (and on nurses as privileged readers of ill bodies); "nervous illness" and the role of narrative in reconstructing the self; "neuromimesis" or neurotic imitation of disease; and the "politics of fitness and its relation to imperialist ideology." Vrettos discusses fictional works by Louisa May Alcott, (Hospital Sketches; see this database) Charlotte Bronte, George Eliot (Middlemarch; see this database), H. Rider Haggard, Henry James, Bram Stoker, and Harriet Beecher Stowe.

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Claire, Rachel, and Allison Barber share the trauma of having lost both parents in a strange and sudden accident. The youngest, Claire, and the oldest, Rachel, also share their late mother's migraine headaches. The novel's focus is Rachel's disappearance and Claire's search for her through North America, Europe, and Mexico. By herself and eventually with the help of Rachel's friend and sometime lover, a massage therapist named Brad Arnarson, Claire traces the steps of Rachel's professional (as a freelance science journalist) and personal meetings with researchers and health practitioners who work on migraines.

Initially, Claire's search is motivated by concern for Rachel and intensified by fears that Rachel's worsening migraines may have caused her to take desperate action. Her need to find Rachel is inevitably intertwined, however, with her own migraine experiences and with her drive to individuate within her family and her longterm relationship with her partner Stefan.

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The story opens with the death of the protagonist’s beloved mother, with whom she lives. Ines, a dictionary researcher, is soon jolted from her grief by the excruciating pain of a “twisted and gangrenous gut” (112). After a hospital stay and emergency surgery, she returns home to recuperate from the physical trauma and revisit her mourning. On the day when she can remove the wound dressings, Ines discovers a surprising change in her body: it seems to be turning to stone. Her incision has become a “raised shape, like a starfish, like the whirling arms of a nebula in the heavens” that gradually spreads to the rest of her body, forming "ruddy veins" across her belly and "greenish-white crystals sprouting in her armpits" (119).

Ines assumes that this process is fatal and that she will "observe [death's] approach in a new fantastic form" (121). Deciding to write a record for those who will find her after her demise, she studies the names and nature of minerals in order to understand and describe her metamorphosis. From her new, mineralizing perspective, she realizes that stones can be dynamic and living as well as fixed and dead; minerals are memorials to the relationships and reciprocities between living creatures and dead ones.

Unable to write the record of her transformation, Ines finds herself passionate to be outdoors. She explores the city, looking for "a place to stand in the weather before she became immobile" (127). In an old graveyard, she meets and gradually forms a bond with Thorsteinn, an old Icelandic stonecutter who may also be mourning the death (apparently of a child). The Ines shares the secret of her metamorphosis with the stonecutter and eventually travels with him to his homeland, a geologically young country, where stones are alive and myths tell of “striding stone women.” Thorsteinn sketches here in this landscape and creates a standing stone image of Ines that reflects his ability to see her as she is and find her beautiful: "Petra faction saw that she existed, in there" (150).

Ines's metamorphosis culminates in her inability to see or speak as a human and her ability to perceive a whole new realm of living creatures, "earth bubbles and earth monsters" (151) and other stone people who are "flinging their great arms wide in invitation" (156). She joins their wild dance.

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This DVD, a documentary of a medical student retreat to a museum, illustrates an approach to cultivating empathic understanding in medical students and residents by using the visual arts.  Florence Gelo, D.Min, created the arts program and the video. She is Behavioral Science Coordinator, Family Medicine Residency, Drexyl University College of Medicine. Students observe closely four paintings and are encouraged to experience their feelings about what they are seeing, and to express those feelings. The paintings are Prometheus Bound (Peter Paul Rubens 1618), Massacre of the Innocents (Pacecco de Rosa 1640), Rachel Weeping (Charles Wilson Peale 1618), and The Agnew Clinic (Thomas Eakins 1889; see annotation in this database).

Prometheus Bound is a disturbing scene of an eagle ripping the liver out of Prometheus. Students comment on the nakedness. the vulnerable position and the helpless expression on the face of this strong man, and on the eye contact between the eagle and Prometheus. In Massacre of the Innocents Dr. Gelo calls our attention to the faces of the mothers, helpless to save their children from the swords. In Rachel Weeping Gelo asks the students if they noticed the vials of medicine before the days of allopathic medicine.  Did they notice the one tear dropping from Rachel's face? (Peale added the medicine vials and his wife weeping to the original portrait of his infant daughter Margaret who died of smallpox.)

Two physician speakers, Horace DeLisser, and Rhonda Soricelli provide additional commentary about how engagement with a painting is similar to engaging with a patient, and how learning technology-focusing on the scientific and the medical- detracts students from learning to look at the big picture and the humanistic side of medicine.  Traditional medical education does not teach doctors to be present to patients, to sit by their sides, to listen and invite dialogue of suffering and to not deny those aspects of what it means to be ill.  Dr. DeLisser further acknowledged his personal struggles with feelings of frustration, anger and grief when patients died in the ICU.  The importance of talking about the vulnerability of physicians, the concerns about what else they might have done, propelled him to develop Grieving Rounds.

A cancer survivor contrasts a "callous" physician's response to her care with  another physician who exemplified someone who has the expertise not only around the disease, but  has the ability to acknowledge the whole person and offer his companionship to be there to the very end: "...what we're going to do is....We'll take this step by step."

 

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The Island is a collection of three stories sharing a similar setting (Italy) and populated by several characters who are outcasts. In the title story, the relationship between residents of an island and its medieval monastery, the Certosa, decays over time. When a talented stonemason is accidentally injured, his damaged senses are replaced by pain and suffering. His struggle and sacrifice, however, ultimately result in redemption for all those who inhabit "The Island."

In the eighteenth century, a 20 year old leper is condemned to live the remainder of his life in a tower fittingly known as the Tower of Fright. Although befriended by a stranger, the occupant of "The Tower" must nevertheless endure solitude, and he does so with the patience and grace of a saint. With the backdrop of a plague, "The Second Coming" is a medieval tale that recounts the torture of a doubting priest, an unknown pilgrim’s participation in a miracle, and the death of a pope.

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