Summary:

This suggestively titled collection of poems provides a lyric record of a physician’s way of seeing.  The situations to which the poems bear witness are not only medical, though many are.  Some are cityscapes into which are woven surprisingly astute observations of homeless people or hitchhikers or ducks in the park.  Some explore the geography of a body where memories are held in “neuron chains.”  Some articulate bits of personal history from the point of view of a woman who has spent years in medicine, caring for the elderly, seeing bodies with the double vision of a clinician and a person whose spirituality clearly informs all she sees.

Titles like “ER Alphabet of Hurt” or “Looking for God On the Radio” or “Hippocrates Voyeur” or simply “Scars” may give some sense of the range of focus.  Her vision and voice are strongly local; those who know Marin County, north of San Francisco, will recognize the places that become the poet’s personal geography.  Those who don’t will still see in these poems a sensibility shaped and refined by the knowledge that comes from deep habitation.  

View full annotation

Summary:

As the story opens, Sage Priestly, 17, is running for class president against Mona, whose popularity Sage finds both threatening, fascinating, and a matter that keeps her in a state of uncomfortable envy. In her efforts to "be Mona," Sage undertakes a drastic diet, changes her haircolor, and focuses all her leisure dream time on Roger--a boy she can't see is incipiently abusive, though her long-time friend, Vern, loves her in a healthy and faithful way--a love that is tested when Sage starts dating Roger and suffering actual physical abuse.  As we learn about her troubled social life, we also learn that at home Sage is a caregiver for her single mother whose bipolar disorder  and depression pose a huge and confusing challenge to the teenage daughter.  Vern's parents eventually intervene to help both Sage and her mother get appropriate care and oversight, and Sage begins to recognize in Vern (and his gay friend Walter, who has suffered his own social challenges) the kind of friend that will last.  The book includes an afterword in which the author provides a note from personal experience on bipolar disorder (one of her parents was bipolar) and abuse, and lists helpful resources. 

View full annotation

Summary:

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.

View full annotation

Summary:

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.

View full annotation

Summary:

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).

View full annotation

Summary:

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.      

View full annotation

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.

View full annotation

Summary:

In this novel medicine and  politics interface, with disastrous results. The time is the early 1950s, the place Leningrad, and the Soviet leader is Josef Stalin. Andrei Mikhailovich Alekseyev is a  conscientious young pediatrician in a city hospital.  Though Andrei has been warned to be careful, he chooses to take on Gorya, a patient with osteosarcoma, the only child of Volkov, an official high in the Ministry for State Security. Dr. Brodskaya, a Jewish woman surgeon, performs a biopsy and recommends amputation above the knee. Andrei recommends that she perform the surgery. But Gorya develops lung cancer. Brodskaya applies for a transfer to Yerevan, well aware that Volkov will take revenge if the boy doesn't improve, but Andrei decides to stay in Leningrad.

He lives a spartan existence with his wife, Anna, and Anna's younger brother, 16. They bicycle out to their country dacha to fish and  harvest fruits and vegetables. Suddenly, a phone call to his home tells Andrei he is suspended from his medical practice. The police arrest Brodskaya. Shortly thereafter, in the night, Andrei hears police  boots on the stairs. The officers raid Andrei's and Anna's home, breaking furniture, emptying pickle jars into the sink, and confiscating their English dictionary. They send Andrei to Lubyanka prison in Moscow, where he is tortured to get him to sign a confession. Andrei reflects on his situation: "If he dies here, he'll die alone. The last faces he will see will be the guards' faces. Outside, he would never have believed that three initials scratched into a piece of soap [from the shared lavatory] could be so precious. In here, to know that another prisoner has taken the risk of trying to communicate brings a kind of hope"(262). He forces himself not to think about his pregnant wife, instead naming the muscles of the hand, or bone after bone of the human skeleton.

Finally, he is confronted with Volkov who tells Andrei Comrade Stalin has begun a purge of doctors because doctors have been killing communist leaders: "We are uncovering an international conspiracy of Zionists working as tools of the Americans, who directed these criminal murderers and saboteurs" (277). Volkov tells Andrei the Jewish Dr. Brodskaya has ‘suffered a heart attack', that is, she has been executed. Volkov accuses Andrei of betraying his trust by amputating his boy's leg, an operation that did no good, as the boy is now dying of cancer. Volkov dismisses Andrei and goes to visit his son who is comatose. Then he shoots himself in a dark Moscow street. Andrei is sent to the Gulag for ten years.

Anna has moved to safety at their dacha with her brother, Kolya. There she gives birth to her daughter and names her Nadezhda. In March 1953, Stalin's death is announced. Beria, head of the NKVD, announces an amnesty of Gulag prisoners serving shorter sentences. Beria sets up an investigation into the Doctors' Plot and exonerates those doctors. In the following years, thousands of prisoners make their way back to the Soviet Union - one of them is Andrei.

View full annotation

Summary:

Tim Farnsworth is a well-regarded lawyer at a fancy, cutthroat midtown law firm in New York City, with a devoted, if occasionally uncertain, wife and a rebellious teenage daughter.  Their comfortable marriage has survived her bout with cancer and his earlier bout with a strange condition: he will suddenly be compelled to walk, setting out on foot regardless of where he is or what he is doing, unable to stop himself until he eventually curls up asleep, whatever the weather and conditions around him.  He is about to lead the defence of a prominent businessman charged in the slaying of his wife when the condition abruptly returns.

View full annotation

Summary:

The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life is divided into three parts. The first section, “Care Situations,” provides the cultural context of illness and disability and focuses on four common family care situations: cancer, HIV/AIDS, mental illness/chemical dependence, and dementia. The second section of the book, “Care Relationships,” highlights patterns of caregiving, including caring for children, sibling care, couple care, and parent care. The third section of the book contains well over 100 annotations of memoirs of caregiving, each approximately a half-page in length.

View full annotation