Summary:

As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
 
Of the ten essays, four concern personal or familial experience of illness. These four cover a vast range: literature and disability specialist Kristin Lindgren describes her story of the elusive diagnosis of chronic fatigue syndrome and her coping skills; medical humanities and medical ethics expert Carol Schilling offers a poignant narrative of her experience as a mother of a previously healthy, athletic son who suffers a cervical spine injury from a skiing accident; Gayle Whittier places the story of her daughter's disability amongst a trio of nonfictional and fictional narratives of disability and illness; and renowned poet Tess Gallagher explores her relationship with and caring of her mother who has Alzheimer's disease. These essays, written as they are by women steeped in literature and writing, are not merely chronicles; rather they are infused with commentary on story and the meaning of life as story, journey and relationship.
 
The other six essays are likewise diverse and range from cultural/political studies from the Navajo to the Irish (which includes literary analysis of works by poets Eavan Boland and Nuala Ní Dhomhnaill), to insightful critiques of literary works such as  Hjalmar Soderberg 's Doctor Glas, Lauren Slater's Lying: A Metaphorical Memoir, Brian Clark's Whose Life Is It Anyway?, Alejandros Amenabar's film The Sea Inside (Mar Adentro), and George (Marian Evans) Eliot's Janet's Repentance.

Consistent with the nature of medical humanities, the essays cross boundaries. For example, Whittier weaves her experiences as a mother of a disabled child with reflections on embodiment and literary critique. Gallagher compares the notions of time in poem-making with the necessity to live in the moment when caring for a loved one with Alzheimer's. She notes: "Of the written arts, poetry is most responsive to the moment and so coincides with the condensed time frame of those with Alzheimer's - which oscillates between the distant past and the present moment." (p. 71) Schilling tenderly writes of her family (for an illness strikes not just the patient): "We live the best lives we can, folding each of our stories into one another's." (p. 40) Diedrich explores not just the (at times infuriating) play with deceit in Lying, but also examines the ways in which patients lie and medical language obfuscates illness. She further explores, with great insight, expectations: of literary reviewers, patients and physicians.

 

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Attorney Rebecka Martinsson returns to her northern Swedish home to recover from a traumatic experience. She becomes involved in the investigation of the murder of Mildred, a woman priest who was found hanging from a beam in her own church. The investigating police office, Anna Maria Mella, meets opposition, especially from the local organization of hunters, who clearly resented Mildred for having offered shelter on the church lands to a stray wolf. 

It is clear that Nalle, a large, mentally challenged boy, was close to the dead priest, and that his single parent father Lars-Gunnar did not appreciate their friendship. Nalle begins to trust Rebecka, as he trusted Mildred, and he appears to know something. But Anna Maria learns that Mildred had another enemy in her jealous, male colleague; moreover, some of the women in town resented her freedoms.

The many historical and personal ways in which the members of this isolated community are entwined becomes part of the investigation, but before it is complete Mella is confronted with two more murders and two suicides.

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Garland-Thomson, an important figure in disability studies scholarship and activism, analyzes the social phenomenon of staring, particularly staring at people with distinctive bodies. After exploring why we stare and what staring is, i.e., "a physical response...a cultural history...a social relationship...[and] knowledge-gathering," the book analyzes the dynamics of staring, including the learned prohibition against staring and the dynamic power relationship between starers and the objects of their stares, whom Garland-Thomson terms "starees."

She illustrates and analyzes four key "scenes of staring": staring at faces, hands, breasts, and bodies.  The book proposes a new "ethics of looking" in which starees offer starers a collaborative relationship that produces "[s]taring as beholding...a way to bring visual presence to another person, to see them as they need to be seen" (194). Garland-Thomson positions her argument in relation to key works of cultural criticism and sociology including Susan Sontag's Regarding the Pain of Others (see annotation), Erving Goffman's Stigma, Elaine Scarry's On Beauty and Being Just, and the ideas of historian Michel Foucault. Her evidence includes  auto/biographical narratives of scenes of staring, summaries of key historical contexts, examples from visual art (photography, painting, film, and cartoon), and literature, and auto/biographical narratives.

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The narrator of this novel, fifteen-year-old Christopher Boone, is autistic (or, more accurately, probably, has Asperger's Syndrome). He lives with his father and believes his mother died two years before. Christopher is extremely good at mathematics, seems to have a photographic memory, but does not like novels (other than detective stories, which are about observation and logic), because he cannot empathize with human emotions or make sense of the indirect or figurative. For Christopher, metaphors, like fictions, are lies. He is very fond of dogs, and hates to be touched by people.

When a neighbour's dog is killed, he decides to investigate and, with the encouragement of his teacher, to write a book about his investigation. He quickly makes some very disturbing discoveries. He learns that his mother is not dead after all, but living in London with the husband of the dead dog's owner. The fact that his father has lied to him devastates Christopher. He runs away to London to find his mother, and his courage and tenacity allow him to solve not only the mystery of the dog's death but that of his family's past and future.

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In Chronic Progressive, a collection of 151 short poems divided into three parts, Marion Deutsche Cohen, a well spouse, continues her startlingly candid account of caring for her husband Jeff that began in her previous collection, Epsilon Country (1995, see annotation).  Part I of Chronic Progressive describes Cohen's frustrations during the last of the 16 years that she cared for Jeff at home, as multiple sclerosis left him almost completely dependent on her.  Mother of four, a prolific writer, a poet, and a mathematician, Cohen describes unrelenting stress when family services and insurance providers fail her, when she feels she must protect the sanctity of her home as health care aides and agencies treat it like a hospital or nursing home, or when she's exhausted, which is most of the time.  "It's a state, a / chronic state, a chronic progressive incurable state," she writes (55).

The middle section, the longest, follows Cohen during the ten years Jeff resides in Inglis House, a Philadelphia care facility.  These poems mix reflections on the past with working out the rhythms of life without Jeff in the house, but still unshakably on her mind.  In this section, she also writes "The Last Love Poem for Jeff" and anticipates his death in "A New Vow": "I will give you the best deathbed anyone ever had" (108).  In Part III, Cohen experiences relief and begins life with a new spouse after Jeff's death.  She recalls herself as ". . . the one he began with, the one he'll end with / the one who's been too much in the middle" (162).  But she quickly turns to "Wedding Preparations Former Well Spouse Style" and the "Love Poem for Her New Love."

Taken altogether, the poems reveal a profound effort to sustain vitality and remake ways of living-with integrity-at the edge of human endurance.  "Yes, how readily we reclaim our territories," Cohen observes near the end of her book (180).

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This story is told from the perspective of Emily, a forty-year-old spinster and former high school English teacher, who tends bar in a Massachusetts town. Emily has built a "disciplined" life, seeking to protect herself from the emotional pain of earlier failed romantic attachments, and from the cynicism that propelled her out of teaching--a cynicism born out of the apathy with which the students responded to her own passionate love of poetry. She has held herself aloof from the cautious social overtures of Jeff, the bar manager.

One night, a white man in a wheelchair and his black male attendant drive up to the bar. The arrival of this pair leads Emily to examine and re-assess her life. "Emily had worked [t]here for over seven years, had never had a customer in a wheelchair, and had never wondered why the front entrance had a ramp instead of steps." The disabled man, Drew, is quadriplegic (the result of diving into a wave at age 21, as Emily later finds out). But he and his attendant, Alvin, seem to be comfortable in the bar and with each other, and Emily relaxes.

As she observes Drew and watches how Alvin helps him, she tries to imagine their lives. "She thought of Drew . . . learning each movement he could perform alone, and each one he could not; learning what someone else had to help him do, and what someone had to do for him . . . So, was anyone boundless? Most of the time, you could avoid what disgusted you. But if you always needed someone to help you simply to live . . . you would . . . become disgusted by yourself."

Emily also imagines Jeff's life as a divorced father, and she can even empathize with Jeff's former wife, who left him. Jeff, she learns, had had a friend who became quadriplegic, the victim of a land mine during the war in Vietnam--hence the ramp entrance to the bar. As the story ends, Emily agrees to let Jeff cook lunch for her.

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Letters to a stranger is a slim volume of poems by Thomas James ((1946 - 1974) posthumously collected and published in 2008 by an admiring reader/ critic, Lucy Brock-Broido. James died by suicide in 1974.

There are 54 poems in all. Forty-one of them were first published in 1973 as James's only published book of verse, Letters to a Stranger. Ms Brock-Broido has collected 13 more from various small magazines. Most have a faint formalistic ring to them with rhymed triplets (a-x-a) predominating.   Preceding the poems is an introduction by Ms Brock-Broido, an introduction that can only be called unusually confessional. (In his characteristically succinct diction, series editor Mark Doty calls it "a love letter, a biography and exorcism all at once".) For subjects, the bulk of the poems have, as we call a type of educational conference in medicine, morbidity and mortality. Indeed, the book might perhaps have been more appropriately entitled "Intimations of morbidity and mortality". Many of the poems are graphic.

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This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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Extraordinary Measures, based on events in the life of John Crowley and his family, dramatizes the father's quest to find a cure for Pompe disease, a relatively rare genetic condition that afflicts two of his three children.  The quest brings into play three powerful, often competing human motives:  a father's love for his children, a scientist's pursuit of knowledge and recognition, and a corporation's mandate for profits.  Crowley (Brendan Fraser), an energetic marketing executive, and his wife Aileen (Keri Russell) are told that their children Megan (Meredith Droeger), age eight, and Patrick (Diego Velazquez), age six, have reached the upper limits of their life expectancies.

When Megan, an affectionate, playful, and clear-sighted child, is rushed to the hospital with symptomatic heart and respiratory failure, a young physician empathically encourages the parents to think of their only daughter's immanent death as a "blessing" that will end her suffering.  However, Megan survives.  "So I guess you could say we dodged that blessing," Crowley echoes back to the doctor.  Seeing Megan's will to live reinforces John's wish to make her well, and he abruptly abandons his promising career to find a medical researcher who can reverse Pompe's effects. 

Immersing himself in medical journals and websites, John discovers the intriguing research of Robert Stonehill (Harrison Ford).  A cranky, renegade scientist who thinks to the beat of rock music blasting from a boom box, Stonehill has developed a cutting-edge theory about correcting the enzyme deficiency in the cells of people with Pompe, which gradually weakens skeletal, respiratory, and heart muscles.  However, to produce a treatment derived from his theory, he needs more funding.  John immediately creates a fund to support Pompe research, and he and Stonehill form a mutually exasperating partnership.  They lock horns with each other, venture capitalists, and finally a large genomic research corporation, Zymagen.

Despite the scientist's abrasive ways, Zymagen gives Stonehill a lab and creates employment for Crowley.  However, the two confront the company's culture of rigorous competition among its scientists and its focus on profit margins that ignore the fates of individual children.  When the Zymagen scientists develop a promising therapy, they decide to offer the treatment only to infants, who are most likely to experience benefits.  Disqualifying Crowley's children from the promising trials, this decision, combined with Crowley's obvious conflict of interest, creates the film's final obstacle.  Stonehill and the executives uncharacteristically collaborate to overcome it. 

This ending might seem implausibly neat, but it's consistent with the film's mostly evenhanded approach to the dilemmas of pursuing treatments for orphan diseases.  Toward the end, we witness even Crowley, albeit uncomfortably, reaching beyond his fatherly motives for the Pompe project and turning his argument for bringing the treatment to market from children to profits.  The longer the patients live, John assures the executives, the more treatments Zymagen will sell.  The film leaves space for viewers to ask to what extent Crowley's argument creates a fair compromise or opens an ethical quandary.  In a closing narration, the film moves beyond the fictionalized characters and plot to the real Crowley children and a tempered victory.  Yes, the Pompe treatment stopped the progression of the disease and improved Megan's and Patrick's hearts.  But it has not cured the Crowley children, and almost certainly it won't.   The treatments do, however, show more success when taken at the onset of symptoms.      

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Summary:

Sixty-year old Martha DeClerq cares for her mentally disabled sister, Pauline (Dora van der Groen), in a small town between Brussels and the seaside. Pauline cannot feed herself, tie her shoes, or speak in full sentences; she is stubborn, loving, occasionally mischievous, and particularly devoted to her sister, Paulette (Ann Petersen), who owns a small, tidy shop in town. Cecile (Rosemarie Bergmans), the youngest sister, lives in Brussels with a French intellectual, Albert, and has little contact with her siblings.

When Martha dies, her will stipulates that her estate be split equally between the three sisters, only if Paulette and Cecile care for Pauline themselves. They agree to share Pauline’s care. Although the sisters are fond of Pauline, their relationship with her is awkward and tentative. Initially, Paulette brings Pauline home, and they negotiate the new living arrangements with a mixture of embarrassment and kindness, frustration and delight. When the burden of caring for her sister becomes overwhelming, Pauline is deposited in Brussels at Cecile’s tiny, meticulously kept apartment. When these arrangements become unworkable, Pauline is eventually institutionalized.

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