Summary:

Damon Weber's proud father, Doron, has written a searing memoir that enfolds a story of parental love and loss into a medical exposé. By the time Damon turned four, he had two open-heart surgeries to correct a congenital malformation that affected circulation to his lungs. His parents were led to believe that after the surgeries, their effervescent, sociable, academically and artistically talented son was set for life. However, as Damon turned 12, they became concerned about what his father calls "his unsprung height," his shortness of breath, and a strange protrusion in his abdomen (40). Returning to his attending physician, they were surprised that she withheld information from them about a condition known as PLE (protein-losing entropy), which can manifest months or years after the kind of surgery (Fontan) their son underwent. PLE enlarges the liver and allows proteins to leak from the intestines. Without adequate protein, Damon's body could not grow. His father worried that they might have passed the established window of opportunity to treat the complication.

The memoir, which reads like an extended eulogy to a beloved son, fuses scenes of family life with difficult medical decisions aimed at reversing the effects of PLE. However, none of the interventions succeed, leaving a heart transplant as Damon's last hope. As Weber recounts each decision leading to the transplant, he exposes flaws in the way hospital systems operate, in the way families are treated, and in the care provided by the medical team that lobbied to perform the transplant. Damon died after his transplant physician made herself scarce after misdiagnosing a post-operative complication, and an inattentive hospital staff ignored his parents' justifiable alerts to ominous symptoms. Scenes of the hospital staff waiting impatiently at the door to Damon's room to remove the machines sustaining and monitoring him, as his distraught parents say good-bye, are disturbing. When the Webers initiate a lawsuit, the transplant physician cannot locate Damon's medical records. The narrative fully absorbs Weber's sorrow and anger.

View full annotation

Summary:

Open Wound is a novel crafted from the extensive documents of an unsettling, little-known, yet remarkable episode in the history of medicine.

In the summer of 1822, Dr. William Beaumont was practicing medicine at a rugged military outpost on Mackinac Island in Lake Huron, part of the Michigan territory.  His assignment as Assistant Surgeon, US Army represented about the best circumstances he could expect from his training as a medical apprentice without a university education.  In addition to soldiers and officers, Beaumont sometimes attended patients from the American Fur Company, whose warehouses shared the island's harbor.  On June 6, an accidentally discharged gunshot cratered the abdomen of an indentured, French-speaking Canadian trapper.  Fortunately for him, Beaumont served during the War of 1812 and knew how to care for devastating wounds.   With the surgeon's medical attention and willingness to house and feed the hapless trapper, Alexis St. Martin's body unexpectedly survived the assault.  But his wound didn't fully heal.  As a result, it left an opening in his flesh and ribs that allowed access to his damaged stomach.  Through the fistula, Beaumont dangled bits of food, collected "gastric liquor," and made unprecedented observations about the process of digestion.  

His clever and meticulously documented experiments, conducted on the captive St. Martin over several years, corrected prevailing assumptions about digestion.  Once thought to depend on grinding and putrification, normal digestion, Beaumont observed, was a healthy chemical process.  Any signs of putrification or fermentation indicated pathology.  In 1833 Beaumont published his thesis on the chemistry of digestion in Experiments and Observations of the Gastric Juice and the Physiology of Digestion.  Shortly before completing the book, he received a temporary leave from his military service to restart his research in Washington.  But to carry on his project, Beaumont had to persuade St. Martin-who entered and exited his physician-researcher's life several times before-to leave his growing family in Canada and once again become a research subject.  St. Martin does return, with pay, and briefly accepts his role.  But he also confronts Beaumont about whether the long confinement on Mackinac Island was more necessary for the patient's survival or the doctor's research agenda.  Or for the doctor's subsequently improved station in life. 

Although some of Beaumont's academically trained colleagues found fault with his methodologies, the farmer's son and frontier doctor did achieve a gratifying level of professional accomplishment and wealth.  To enjoy them, he had to set aside humiliations he experienced along the way, accept his lot after military service as an ordinary practitioner in St. Louis,  and weather an unforeseen turn near the end of life.    

View full annotation

Summary:

In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illness—and their inclusion in medical school and other humanities courses—multiplied from the later decades of the 20^th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers age—Stephen Greenblatt, Michel Foucault, Judith Butler—they have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

View full annotation

Summary:

Margaret Price, a university professor with expertise in disability studies and rhetoric, alerts us to rhetorical and institutional strategies that marginalize or exclude from academic life people regarded as mentally disabled.  Her term "mental disability" subsumes an array of cognitive and psychological conditions--autism, attention deficit disorder, depression, post-traumatic stress disorder, difficulties processing spoken language or speaking in a group, among others--that are generally identified as falling outside definitions of normative cognitive or psychological functioning.  Whether a student or a teacher, manifesting such conditions can label one unfit for school.  Price asks us (1) to consider whether such conditions rightly disqualify one from academic life, (2) to question the validity of some assumed criteria for academic success, and (3) to design institutional infrastructures that accommodate neurodiversity. 

Price's analysis and her insights into forms of exclusion point to an underappreciated relationship between academia and medicine, which after all generates diagnoses of mental illness or fitness and the presumed teachability of students.  Price's book thereby engages the wider culture, which can deem the "unteachable" unfit for society.       

Probably the most startling chapter, titled "Assaults on the Ivory Tower: Representations of Madness in the Discourse of U.S. School Shootings," analyzes the rhetoric of the stories told within academia and throughout print and televised media about two campus shootings: the ones at Virginia Polytechnic and Northern Illinois Universities in 2007 and 2008.  The chapter uncovers the easy acceptance of stereotypes about mental disability and of the presumed, but unsubstantiated link between mental disability and violence that these stories insistently repeat.             

Three chapters have direct bearing on pedagogic and professional practices and assumptions.  Chapter 2 scrutinizes typical classroom practices and Chapter 3 questions criteria for professional excellence in academia, such as collegiality and productivity, from a disability perspective.  Both chapters uncover the often hidden problems that those with mental disabilities have meeting what Price views as a limited range of academic expectations and practices.  Together the chapters propose ways that academia can become more accommodating and ask what it might lose by not doing so.  In Chapter 6 Price interviews disabled independent scholars Cal Montgomery, Tynan Power, and Leah (Phinnia) Merridith.  Questioning the "rhetoric of ‘choice'" that infuses discussions of the institutionally unaffiliated or marginally affiliated, Price asks to what extent disabled scholars become independent by default.  By interviewing people she knows and who share her experience of living with a mental disability, Price also challenges models of research that assume that disengagement with its subjects generates the most valid knowledge.    

Another chapter examines three examples of autobiographical writing about mental disability:  Susanne Antonetta's A Mind Apart,  Lauren Slater's Lying , and Wendy Thompson's essay "Her Reckoning."  Price finds "transgressive power" in autopathographies written by those "who are not (conventionally) ‘articulate'" (178).  Part of that power, Price proposes, arises from the narrators' unconventional use of pronouns (Who is "I"?) and ways of "refiguring the rational" (195).  

View full annotation

Summary:

Rosalind Franklin: The Dark Lady of DNA is the biography of the scientist whose research James Watson and Francis Crick needed to elucidate the structure of the DNA molecule.  Even though the discovery has had profound implications for modern medicine, Franklin's contribution to it almost remained obscure.

In 1968 Rosalind Franklin (1920-1958) became visible to the world beyond a small circle of scientists when Watson published The Double Helix (1968), his "personal account" of puzzling out DNA.  If not for Watson's self-incriminating candor about stealing glances at Franklin's research, we might not know how crucial her lucid x-ray diffractions of hydrated DNA were to him and Francis Crick.  However, the account that indirectly acknowledged Franklin's contribution to their work represented her in a patronizing caricature.  Since ovarian cancer took her life a decade before Watson's memoir appeared, others have been left to respond to his version of the DNA story and representation of his female colleague.  Among Franklin's defenders, Brenda Maddox offers the most complete and insightful restoration of the scientist, her research, and her life. 

Maddox's biography draws from not only the many scientific archives and personal papers of scientists Franklin worked with in England, Europe, and America, but also from previously undisclosed letters written by Franklin, her friends, and her family.  Maddox also interviewed Franklin's relatives.  Doing so allowed her to position Franklin's life within the history of her close, extended Anglo-Jewish family, generations of wealthy London publishers and bankers who experienced discrimination.  This history does more than belie some of Watson's hasty assumptions about Franklin's background.  It creates a biography of a complex woman who negotiated biases as a citizen and a scientist.     

The biography is divided into three parts.  The first narrates the story of Franklin's childhood, rigorous education, and successful career before accepting the fateful research post at King's College, London.  She's known for thinking skeptically and working mathematically.  Yet early on she showed an aptitude for three-dimensional thinking and for understanding crystalline structures.   As an undergraduate at Cambridge she speculated about a "'Geometrical basis for inheritance'" (56).

The second section concentrates on the 27 months at King's when she worked uneasily with Maurice Wilkins, who showed her revelatory x-rays of DNA to Watson.   This balanced account of a controversial episode in the history of science offers evidence that Franklin was close to drawing the same conclusion about the structure of DNA that Watson and Crick rushed into print.  This section also accessibly explains the molecular biology of her day and the painstaking physical and intellectual intricacies of making and interpreting x-rays of crystalline molecules. 

The third section reminds us that Franklin had a very productive, though short career after leaving DNA to others.  She directed research programs for the study of plant viruses, and she investigated the polio virus shortly before she died.  Respected scientists, including Crick, praised her research.   Many, unlike Wilkins, liked working with her.  More than 40 years after viewing what's known as Franklin's Photograph 51, Watson publicly acknowledged that seeing it "'was the key event'" in understanding the geometry of DNA (316).  (See the note on Photo 51 below.)        

View full annotation

Summary:

Creation tells the story of Charles Darwin (Paul Bettany) at home with his family in Down House during the last decade he researched and wrote, but hesitated to publish, The Origin of Species (1859).  The film represents the sorrow of those intellectually ripe years when he worked out his insights into the process of natural selection as his "radiant," beloved daughter Annie-Anne Elizabeth-(Martha West) became fatally ill.  These events were compounded by Darwin's own mysterious chronic illness, which he attempted to relieve through laudanum and trips to Great Malvern for Gulley's cold water cures.

In 1851 he took a very sick ten-year-old Annie with him to the waters and, inconsolable, left her to be buried in the local churchyard.  Through his physical and emotional suffering, he continued to dissect barnacles, breed and skeletonize pigeons, engage the village parson and local farmers alike, consult with supporters Thomas Hooker and Thomas Huxley, exchange hundreds of letters, and remain an affectionate father and husband. 

The loss of "the joy of the Household" strengthened his wife Emma's (Jennifer Connelly) religious beliefs, as it exhausted whatever might have existed of his. The story, artfully told in beautifully sequenced flashbacks, keeps the tensions and accommodations between Charles and Emma on the subject of religious faith in balance, emphasizing their loving partnership as spouses and parents.  Emma supported his work, read his manuscript, and understood its importance, even as she disagreed with its implications for her spiritual life.  Darwin contributed to the local parish church Emma attended.    

Some of the most compelling moments in the film occur during Darwin's joyous outings with his children when they suddenly witness the demise of woodland creatures.  In these scenes, the ineluctable struggles between life and death that Darwin's theory of natural selection eloquently describes resonate with his personal experience.  We see a fledgling fall from its nest near a sheep's skull and decay before our eyes.  We hear Annie explain to her horrified siblings that if the fox they encounter didn't kill the screeching rabbit in its jaws, its pups would die.

These scenes, along with the earlier view of the captive Fuegian child Boat Memory dying of small pox in an English hospital, suggest the fragility of the young that Annie's death makes devastatingly personal for Darwin.  The film simultaneously acknowledges Darwin's empirically derived logic of such deaths in his scientific treatise and his suffering from the brutal manifestations of that logic in the life of his family.  While scientific explanation fails to console him for the loss of Annie, the film suggests human affection as the best, though still potentially painful response.     

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:

As Audrey Young describes her process of becoming a compassionate internist in a besieged public hospital, she simultaneously argues for turning the hospital's patient care and financial practices into a model for improving health care in America.  Young, a compelling storyteller, first entered Seattle's Harborview Medical Center in 1996 as a third-year medical student on trauma surgery service.  She completed a residency there in general internal medicine and stayed on as an attending for six more years.  She stayed, she tells us, because she met physicians "committed to a vision of equality" who were "the sort of people I hoped to become" (xiii).   She also "fell in love" with "the story of a unique place" (xiii).  Young's stories of that often chaotic place, where ambulances regularly transport homeless, indigent, addicted, and mentally ill refugees from neighboring private hospitals, emphasizes the ways the Harborview staff manages to treat patients with dignity and to choose an ethic of hope in the face of dire circumstances.           

We quickly learn that at Harborview compassion is expressed concretely as actions toward patients.  Michael Copass, known as "the mostly benign dictator of emergency operations," pronounced the core of these actions in what came to be known as his commandments:  "1. Work hard.  2. Be polite.  3. Treat the patient graciously, even if he is not the president of the United States" (9).  Politeness always meant asking "'How may I help you, sir?'" regardless of the patient's social status or addiction history.  Politeness sometimes meant finding a way to reach the patient who regularly threatened the staff.  Young finds ways and creates a therapeutic bond.  But working hard and treating patients considerately also took measurable forms, such as not allowing emergency patients to wait.  Facing a flurry of admissions, the Emergency Department (ED) staff interpreted a young Ethiopian's complaints about pain as a drug addict's ploy.  Because Young glanced at the admissions board and noticed that he remained unattended for three hours--far longer than Copass could tolerate--she jumped into action.  He suffered, she discovered, from a collapsed lung. 

However, Young moves her narrative beyond individual doctor and patient encounters and into the larger, interrelated social and financial structures in which medicine is practiced.  For instance, she links meager funding for drug and alcohol rehabilitation programs with expensive ED admissions and rising healthcare costs.  In the chapter "Bunks for Drunks," Young visits an experimental residence that houses homeless addicts in furnished studios with private baths and cooking appliances.  Although residents can keep alcohol in their rooms and elect not to participate in the home's social services, including counseling, alcohol consumption and ED admissions decrease.  While the chapter points out the cost savings of such arrangements, Young further urges readers to value the dignity residents experience there.

In "Black Friday," Young details the hospital's tense, but ingenious responses to a Mass Casualty Incident, the result of carbon monoxide poisoning, which almost depleted the resources of all of Seattle's medical centers.  The final chapter, "A Vision," outlines how Harborview has tried to succeed as both a charitable institution and a business, as a provider of both indigent and luxury care, with the hope that others will follow the medical center's example.  However, in presenting her recommendations for "health justice," Audrey Young also makes the case that "seemingly ordinary citizens" are implicated in healthcare reform (231).  To enable their informed participation in making changes, Young includes an appendix with further readings and another that lists strategies for effecting reform.  

View full annotation

Summary:

Spoiler alert: for educational purposes, this annotation reveals plot lines and may interfere with some viewers' enjoyment of the film. In the opening scene, Juliette (Kristin Scott Thomas), looking ashen, drawn, and nervous, sits in an airport as her much younger and radiant sister Léa (Elsa Zylberstein) rushes to meet her.  Léa brings an eager, if somewhat forced cheer to their halting conversations during this meeting and in their car ride to the home Léa shares with her husband, their two small adopted Vietnamese daughters, and her mute father-in-law.  From this awkward beginning, the sisters try to cross the chasm of a fifteen-year separation.  The cause and nature of the separation gradually unfold in small, slowly paced scenes of ordinary life at home, at work, in a café, during dinners with friends.  These scenes form the visible surface under which secrets and plangent, unacknowledged emotions lie, sometimes erupting into view, sometimes gently suggested.
    
The cause of the separation is the prison term Juliette has served in England.  We eventually learn that the sentence has to do with the death of her child, with her being a physician, with her child's suffering from cancer, and with the application of her medical knowledge to end his pain.  Following the court sentence, Juliette's parents refuse to acknowledge her, her husband divorces her, her sister buries memories of their childhood and chooses not to give birth, family and friends never visit her in prison.  We also learn that Juliette remained inexplicably silent throughout her trial.  She continues to say very little as she settles in with Lea's family and circle of friends, who are baffled by her sudden appearance in Lea's life.  But as Juliette's participation in her sister's circle increases in fitful starts, she becomes cautiously more communicative and brighter.

During a confrontation with Léa at the end of the film, Juliette reveals that, more than avoiding a shameful appraisal from others, she remains silent because there are no words to express her pain.  Being in prison made literal the isolating psychological state she inhabited.  "The worst prison is the death of one's child," she says.  "You never get out of it."  With these words, the film places the wound and the pain at the core of its main character in the inescapable vulnerability of motherhood.    

    

View full annotation