Showing 1 - 10 of 18 annotations contributed by Schilling, Carol

Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video — Secondary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The opening of the documentary Fixed: The Science/Fiction of Human Enhancement is meant to startle. A young woman (disabled performance artist Sue Austin) in a motorized wheelchair fitted with transparent plastic fins gracefully glides underwater around seascapes of coral and populations of tropical fish. The scene dislodges expectations about what wheelchairs can do and where they belong. It creates what for many are unlikely associations among disability, wonder, joy, freedom, and beauty. Watching Austin incites questions about what this languid and dreamy scene might have to do with human enhancement, which more predictably brings to mind dazzling mechanical, chemical, or genetic interventions that surpass the ordinariness of a wheelchair and extend human capacities. But this gentle scene opens the way for the film’s conversations about the ethics and meanings of human enhancement that emphasize perspectives by people with disabilities.  

Regan Brashear’s film features interviews with and footage of people living with disabilities as they move in varied ways through their environments—home, workplace, airport, therapy lab, city street. Photographs, news footage, and performances by mixed-ability dance companies complement their stories. We also hear from a transhumanist, academicians, and activists. Together they express a wider range of views about human enhancement than seems possible in an hour-long film.  

Often contrastive views are paired or clustered. For instance, double amputee Hugh Herr, Director of MIT’s Biomechtronics Group, brags that his carbon-fiber and other prosthetic legs will outperform the biological legs of aging peers. His lab develops robotic limbs controlled by biofeedback, and he intends to end disability through mechanical technologies. Gregor Wolbring, a biochemist and bioethics scholar who was born without legs, regards himself as a version of normal and rejects being fixed. “I’m happy the way I am!” he exuberantly proclaims. Rather than strive for normalcy through restorative technology, Wolbring urges acceptance of imperfection.  

Altogether, the interviewees raise questions about how to respond to differences among human bodies: focus on corrections toward achieving a concept of “normal”? accept diversity? extend human potential? The interviews call out underlying assumptions about disability that influence our answers. Do we assume that disability is an aberration that should be erased? A condition located in individual bodies? A condition brought about by unaccommodating social and built environments? Or, as disabled journalist John Hockenberry proposes, “a part of the human story”?

Fixed
also asks what the social and ethical consequences of pursuing enhancements might be. Do they equalize opportunity? Do they misplace priorities by channeling attention and resources away from basic health care and ordinary, essential technologies, such as reliable, affordable wheelchairs? Are biological, chemical, and mechanical enhancements indispensible opportunities to extend human experience, as transhumanist James Hughes claims? Do we have an ethical responsibility to enhance, whether to correct or extend?
                                                                                              
Hockenberry mentions that we already enhance. Think of eyeglasses, telescopes, hearing aids. People with disabilities, he points out, are typically the first adopters of technologies, such as computer-brain interfaces, that are destined for wider use. Archival film footage of warfare during this discussion reminds us what many of those uses have been. Should we worry, he asks, about using people with disabilities as research subjects? Or should we say with recently paralyzed Fernanda Castelo, who tests an exoskeleton that braces her body as it moves her forward: “Why not”?  

Considering whether we should trust technology to create equality or treat each other equally in the presence of our differences, disability rights attorney Silvia Yee poses the film’s most vital question: “Which is the world you want to live in?” While Fixed gives a fair hearing to disparate answers, the closing image is suggestive. A woman in a motorized wheelchair offers a lift to someone struggling to push a manual chair uphill. She invites him to grasp the back of hers and they roll forward together.

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself.  Or of other care-giving families.

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Summary:

Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.

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Immortal Bird: A Family Memoir

Weber, Doron

Last Updated: Feb-10-2014
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

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.

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Annotated by:
Schilling, Carol

Primary Category: Literature / Fiction

Genre: Novel

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.    

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Illness as Narrative

Jurecic, Ann

Last Updated: Jul-03-2012
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Criticism

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 illnessand their inclusion in medical school and other humanities coursesmultiplied from the later decades of the 20th 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 ageStephen Greenblatt, Michel Foucault, Judith Butlerthey 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).

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Criticism

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 ApartLauren 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).  

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Biography

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.)        

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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.     

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Chronic Progressive

Cohen, Marion

Last Updated: Jul-29-2010
Annotated by:
Schilling, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

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).

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