Showing 51 - 60 of 271 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

This Far and No More

Malcolm, Andrew

Last Updated: Sep-12-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Emily Bauer, mother of two small children, psychotherapist and teacher, social, smart, athletic, and strong-willed, finds, after a curious series of falls and other accidents, that she has ALS, "Lou Gehrig's Disease," a disease that involves slow atrophy of all muscular control, leading to complete paralysis and then death.  The disease is relentless, and treatments palliative at best. 

First in handwriting and later by means of a tape on which she can type, letter by letter, by moving her head to press a button as a cursor cruises through the alphabet, she keeps a diary up until just days before her death.  The diary, a remarkable record of her physical and emotional fluctuations, includes stories she laboriously writes for her daughters that gently mirror the confusions they encounter coming to see a profoundly disabled mother who can no longer hold them or speak to them.  The story culminates in Emily's plea for someone to turn off the ventilator that is keeping her alive, and the efforts her husband makes with the help of a meticulous and sympathetic lawyer and a courageous doctor to arrange for a voluntary death.  

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The Dark Light

Newth, Mette

Last Updated: Aug-30-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Tora lived happily on a mountain farm in Norway until her beloved mother's death  and her own subsequent diagnosis with leprosy, an illness common in early 19th-century Norway and one that drove her mother to suicide.  Upon diagnosis (at the age of 13) she is taken to the leprosarium in Bergen, from which very few emerge.  Most are left there by families whose fear of the disease leads them to abandon even much-loved children, parents, and spouses.  There, despite the misery of living among many who consider themselves the living dead, she finds a friend in Marthe, the chief cook and general caregiver, a woman of almost boundless kindness; and the "Benefactor," a pastor who is remarkably unafraid of the disease from which most flee, and who befriends Tora as she grows into an unpromising early adulthood.  Another unlikely friend is a noblewoman who has languished, embittered, behind a closed door with a trunk full of her old gowns and several cherished books, including the Bible, The Divine ComedyGulliver's Travels, and a popular Norwegian epic about the adventures of Niels Klim at the center of the earth.  She gradually softens toward Tora, who cares for her tenderly as the older woman teaches her to read.  Reading becomes not only Tora's consolation, but that of many of her fellow inmates.  Near the end of her own short, but surprisingly rich life, Tora's father shows up after years of neglect.  Forgiving him, almost against her will, she reaches a new level of acceptance of her own mysterious fate.  The book includes a short afterword about the actual leprosarium in which the story is situated and about Gerhard Armauer Hansen who in 1873 discovered the bacillus responsible for leprosy, the first bacterium proved to be the cause of a chronic human disease.

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For the Love of Babies

Last Updated: Aug-30-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Collection (Case Studies)

Summary:

In this collection of "clinical tales," to use Oliver Sacks' term, Sue Hall, an experienced neonatologist who spent some years as a social worker before medical school, tells a remarkable range of stories about newborns in the NICU and their parents.  As memoir, the stories record moments in a life full of other people's traumas, disappointments, anxieties, and hard-won triumphs where her job has been to hold steady, find a balance point between professionalism and empathy as young parents go through one of the hardest kinds of loss.  Each story is told with clarity and grace, sketching the characters deftly and offering useful medical information along the way on the assumption that many who read the book will do so because they are facing similar challenges and decisions.  Each story is followed by a two- to three-page "Note" giving more precise medical background and offering further resources for those who have particular interest in the kind of case it was. 

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This remarkable memoir/natural history chronicles the author's observation of a snail that occupies the flower pot at her bedside during a long immobilization due to chronic fatigue syndrome.  For months of relative isolation, she observes the habits of the snail and begins to research the lives, habits, species, and idiosyncrasies of snails by way of getting to know this one in greater specificity.  As she puts it, "When the body is rendered useless, the mind still runs like a bloodhound...," (p. 5) and her mind certainly does.  Peering into poetry and story as well as biology, she discovers both facts and lore about the lives of snails to complement her intimate curiosity about the life of this snail.  Along the way, and very much by the way, she reflects on the nature of her own complex illness, the likely brevity of life she has now to expect, and how to learn from another species how to live in time differently. 

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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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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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Summary:

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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