Showing 71 - 80 of 287 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

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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Remedies

Ledger, Kate

Last Updated: Apr-30-2012

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Simon Bear is a hard-charging physician; his wife Emily is a successful public relations executive, now a senior partner in her firm. Although they have a lavish house, a teen-aged daughter, and much wealth, their marriage is troubled, in large part because they have never fully mourned the death of their baby Caleb.

The title “Remedies” fits well with the long struggle for how to heal their grief. The remedies that clearly have not worked are obsessions with career, professionalism, rationalism, and the trappings of American materialism.

Simon has two obsessions about his practice. The first is that he is a rescuer, the perfect doctor who listens to his patients and gives them what they want. As a self-appointed expert on pain, he is free and easy about prescribing opiates. When his father-in-law feels no pain after a car accident, Simon is sure that a drug that the man is taking is, in fact, the Holy Grail of pain medications. Simon becomes obsessed with this “discovery,” promoting it to his patients, without a scientific study or consideration of ethical implications. When he flies to a national medical meeting to trumpet the news of this remedy, no one will listen to him.

While Simon is the point of view for Parts One, Three, and Five, Emily—structurally separated—is the voice and focus of Parts Two and Four. She is troubled by her distance from Simon and, increasingly, her 13-year-old daughter, who is sullen and rebellious. When she meets Will, a former lover, she seeks another kind of remedy in an affair with him, even prospects of marriage. Contrasting with her strategic, rational approach to life, Will is an open, easy-going man, conveniently separated from his wife.

A series of crises rock Emily, then Simon. Emily begins to understand her anger; she has a breakthrough with her daughter. Simon has several setbacks, including humiliations, but he is not crushed. Although ordinarily a secular Jew, Simon attends the Kol Nidre service the evening service before Yom Kippur, the Day of Atonement. In a powerful and moving passage, he finds healing, relief, and a new direction for his life—a true remedy.   

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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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This is an anthology of poetry by poets who have disabilities. The book's sections are ordered more or less chronologically, although the editors have identified other groupings as well: "The Disability Poetics Movement," "Lyricism of the Body," and "Towards a New Language of Embodiment." Also included is a well organized preface by editor Jennifer Bartlett and an informative "Short History of American Disability Poetry" by editor Michael Northen. An essay by or about each poet prefaces that poet's work. The book makes no pretense at being comprehensive but offers a large selection of poets with a variety of physical impairments (e.g. cerebral palsy, rheumatoid arthritis, dystonia, blindness, deafness, Parkinson's disease, multiple sclerosis, stroke). It presents important figures who have contributed to current thinking about the disabled body and social and physical constraints imposed on it, as well as poets who do not/did not identify themselves as disabled in their work.

The first section, "Early Voices" presents poets no longer alive who wrote in the mid to late 20th century and rarely forefronted their disability (Larry Eigner, Vassar Miller, Robert Fagan, Josephine Miles-- and  Tom Andrews, who DID write about his hemophilia). Their work took place mostly during a time when disability was stigmatized and kept hidden. Michael Davidson's essay on Larry Eigner's work is particularly informative, showing how the poet's severe cerebral palsy, which kept him housebound, pervaded his work although he made no overt reference to his condition.

"The Disability Poetics Movement" highlights poets ("crip poets") who openly celebrate their unusual bodies. These are poets who emerged shortly after passage of the Americans With Disabilities Act in 1992. Some, such as Jim FerrisKenny Fries, Petra Kuppers became disability rights advocates and educators in the field of disability studies. Editor Michael Northen speculates that Fries "may be the single most powerful representative of this group" because he rejects both the medical and social models of disability and is "asking instead for a redefinition of beauty and of the way that disability is perceived" (20-21). Other poets in this section are Daniel Simpson, Laura Hershey, Jillian Weise, Kathi Wolfe, and John Lee Clark.

Ten poets contribute to the section, "Lyricism of the Body," most of them unknown to me (Alex Lemon, Laurie Clements Lambeth, Brian Teare, Ona Gritz, Stephen Kuusisto, Sheila Black, Raymond Luczak, Anne Kaier, Hal Sirowitz, Lisa Gill). Their prefatory essays are particularly helpful in providing context for their work. The final section, "Towards a New Language of Embodiment," is more experimental than the rest of the collection. "Rather than explaining an individual story, bodily condition is manifested through the form" (17). Poets are Norma Cole, C. S. Giscombe, Amber DiPietra, Ellen McGrath Smith, Denise Leto, Jennifer Bartlett, Cynthia Hogue, Danielle Pafunda, Rusty Morrison, David Wolach, Kars Dorris, Gretchen E. Henderson, Bernadette Mayer.

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In Another Country

Kenney, Susan

Last Updated: Jan-17-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In this series of six linked stories the narrator, Sara Boyd, weaves together stories of loss: her father's death when she was twelve, her husband's diagnosis of terminal kidney cancer, her mother's recurrent descent into mental illness, and even the death of a beloved dog. The stories merge in ways that reinforce the notion that new griefs bring up old ones, and that the trajectories of mourning are unpredictable and sometimes surprising in the conflicting currents of emotion they evoke. Sara doesn't present her life only in terms of losses, but the losses frame the story in such a way as to suggest that while key losses may not trump all other life-shaping events, they do organize and color them. The mother's mental illness is, in its way, a crueler loss than the death of Sara's beloved father, since hope of recovery keeps being dashed. Her siblings and children are marginal characters, but enter the stories enough to develop complex family contexts of caregiving.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This is a huge and wonderful book about cancer, the collection of diseases that sickens people all over the globe and kills many of them. An epigraph to the book states, “A quarter of all American deaths, and about 15 percent of all deaths worldwide, will be attributed to cancer,” but the book also describes medical advances that now heal, prevent, or palliate most forms of cancer.

Mukherjee, a cancer physician and researcher, has several strong themes. He sees cancer as an affliction with a long history, a story worthy of a biography; indeed recent discoveries show it to be rooted in our genes (although external factors such as viruses, asbestos, and tobacco smoke can cause genetic disruption). The story of cancer implies a surrounding triangle, the stories of sick people, treating physicians, and biological researchers, all of which Mukherjee artfully weaves across 472 pages. Cancer has Rohrschach blot qualities: depending on time, place, and role in life, humans have perceived different attributes of cancer. As the book ends, however, there is a coalescence of scientific understanding that is satisfying—although there is certainly more to be learned and we are all still vulnerable to genetic errors and, of course, we are intractably mortal.

Another strand is the nature of stories themselves, their twists and turns, presumed early solutions, and personal and social values embedded in them. Mukherjee threads throughout the book the case of a contemporary kindergarten teacher, Carla Reed, who has a leukemia. He bookends his text with ancient Persian Queen Atossa with (presumably) breast cancer. Reed, healed by the end of the book, was Mukherjee’s patient; Atossa was described by Herodotus: both suffered emotional turmoil because of their disease.  Mukherjee understands the affective dimensions of disease for patients and caregivers alike; literature represents these in various ways, and he quotes in his chapter epigraphs and in his prose many writers who describe human experience deeply: Aleksandr Solzhenitsyn, Susan Sontag, Charles Dickens, Thomas Mann, William Carlos Williams, Carlo Levi, and Italo Calvino, to name a few.

The primary story, however, is the interplay of cancer and a large cast of observers, investigators, doctors, scientists, activists, and government officials. Sidney Farber and Mary Lasker dominate the first 100 pages with their two-decade war against cancer. While surgery—historically dramatic and disfiguring—had been a mainstay for treatment of cancer, Farber pursued a biochemical route, which elaborated into chemotherapy, the second major approach of the late 20th century.

Mukherjee also explains ancient views, Hippocrates’, Galen’s humors, Vasealius’ anatomy, Hunter’s stages, Lister’s antisepsis, and Röntgen’s X-rays, which became the third major approach. By 1980, however, the American “War on Cancer” had not been won.

Further advances in cellular biology and genetics would be needed to make targeted molecular therapy possible.  Mukherjee tells this complicated story clearly and engagingly, showing the human investigators to be personable and dogged in their pursuits.  

Another important approach is prevention. The biostatistical work of Doll and Hill, for example, showed the links between tobacco and lung cancer. Screening, such as Pap smears and mammograms, also saved lives, but the basic cellular understanding still eluded investigators.

The final 150 pages explain the search for and discovery of genetic factors, specifically oncogenes. Harold Varmus and J. Michael Bishop were the leaders, winning a Nobel Prize in 1989. Bert Vogelstein, Judah Folkman, Robert Weinberg and Douglas Hanahan took the work further, opening the doors for such drugs as Herceptin, Gleevec, and Avastin. 

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As the film opens, Gianni (Kim Rossi Stuart) prepares to meet for the first time the child he fathered 15 years earlier. The boy, Paolo (Andrea Rossi), was born with cerebral palsy and is of below average intelligence as well as being physically handicapped. Paolo's 19-year-old mother died when he was born, and Gianni could not bear to see the baby, or to have any subsequent contact with him. Paolo has been raised by his uncle, the dead woman's brother. Now Gianni, who lives in Milan with his wife and baby, prepares to take Paolo to a rehabilitation facility in Germany.

Paolo is trusting and does not question Gianni's long absence from his life. He manages to walk with the help of a cane, and tries to function as independently as he is physically capable of. When Gianni tries to feed him with a fork, Paolo responds by feeding Gianni instead. Many such small gestures that Paolo makes towards Gianni loosen Gianni's reserve, and each begins to respond to the other with affection.

In Germany, neither Gianni nor Paolo understand the language--in this they are equally disadvantaged. Gianni meets Nicole (Charlotte Rampling), mother to a teenage girl whose palsied speech impairment makes her unintelligible to anyone except Nicole. From the way that Gianni interacts with Paolo, Nicole senses that Gianni is Paolo's father, although Gianni at first denies it, claiming he is a friend of the family. When Gianni finally is truthful with Nicole, and worries about how Paolo will survive as an adult, she warns him that suffering is inevitable for the parent of an impaired child.

Gianni is horrified by the intensive physical therapy regimen to which Paolo is subjected in the German rehab facility, and removes the boy from therapy. He decides to bring Paolo home with him, but as they are driving back to Italy, Paolo "acts out" and Gianni realizes to his great sorrow that Paolo wishes to return to his uncle and live as he has for the first 15 years of his life. He has the keys to the house he grew up in and doesn't want to give them up.

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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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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

On July 5, 1998, physics Professor Alan Cromer suffered a heart attack on a plane, and survived after almost an hour of resuscitation efforts, but sustained brain injury from lack of oxygen.  In this chronicle of caregiving, his wife, a psychiatric nurse by training, gives a very personal, detailed account of the radical adaptations his disability required of both of them.  Her story includes reflection on his and her own emotional adjustments to loss of parity in communication and awareness, practical adjustments to physical limitations, and social adjustments to family, friends and professional colleagues.

Arduously, over time, Alan regained some ability to read and speak--indeed, he spoke to groups with Janet about their life together during the peak of his rehabilitation.  But the road to even partial recovery was bumpy, and the writer fully acknowledges the pain, grief, irritation, and deep frustrations that intersected moments of authentic pleasure, discovery, and mutual kindness.  Professor Cromer died September 3, 2005.

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

Perillo's essays offer a lively, variegated view from the wheelchair of a woman with multiple sclerosis who is also a naturalist, an outdoorswoman, a wife, and an award-winning writer.  Not all of them focus on her condition, though observations about living with the disease occur in most, and are thematic to some.  Most are also laced with wry humor.  One comes to see in these sketches from the Pacific Northwest how full and rich a life it is possible to live while also fully acknowledging and even lamenting the loss of mobility.  She invokes Thoreau several times, and her work may be easily situated in his tradition of personal, reflective essays on the natural world.  For her, the natural world extends to the world of the body, linked as it is with the bodies of all living things.

            

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