Showing 131 - 140 of 846 annotations tagged with the keyword "Caregivers"

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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Summary:

Split into two parts after a dream-like prelude, Melancholia tells the story of a pair of sisters, Justine (Kirsten Dunst) and Claire (Charlotte Gainsbourg), as they await the end of the earth.  The first half, titled 'Justine', shows us Justine's wedding party at her sister's mansion, a halting, uncomfortable affair marked by bitter family tensions, awkward reticence, abrupt proclamations of spite, and moments of tenderness and forgiveness, not necessarily entirely unlike typical weddings, although perhaps, in Lars Von Triers' hands, the unhappiness and hopelessness is nearer the surface.  The second half, 'Claire', revisits the mansion some time later as Claire, her husband John, and her young son Leo, ponder what John assures them will be the near-miss of the planet Melancholia.  According to John, an amateur astronomer, Melancholia will not hit the earth but which will swoop around it, although Claire is not so sure.  Justine, ragged and exhausted with depression, comes to stay with them to recuperate, and they watch Melancholia and await their fate.

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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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The Art of Racing in the Rain

Stein, Garth

Last Updated: Jan-06-2012
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The story of race-car driver Denny Swift, as told by his appealing dog, Enzo, is his death-basket memoir. Denny’s tale of woe seems endless. His wife, Eve, dies of a brain tumour and he is in a struggle with her parents for custody of his daughter Zoë. Making matters worse, he is falsely accused of raping a minor by a 15 year-old who has a crush on him.

Enzo would love to intervene. However, he is frustrated by his inability to speak and his lack of opposable thumbs—but he sees clearly the worth of his master and the need for careful perseverance—like racing in the rain.

 

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Blue Nights

Didion, Joan

Last Updated: Dec-22-2011
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Joan Didion's memoir, The Year of Magical Thinking, chronicled the overlap of two catastrophes: the critical illness of her adopted daughter Quintana Roo and the sudden death of her husband of forty years, John Dunne. Between the writing of that memoir and its publication in 2005, Quintana died at age 39. She had suffered a 20 month illness which started as a flu, advanced to pneumonia and sepsis, with intracranial hemorrhage and other complications necessitating 5 surgeries and extended intensive care unit stays. Blue Nights is a meditation on Quintana, and her mother's consuming sense of loss over the tragedy of her only child.

Blue nights refer to the quality of the light during evenings around summer solstice, a time of year which the author feels starts the whole cycle of diminishment and death. The memoir begins with a reminiscence of Quintana's wedding in July 2003 (the same year she falls ill and Dunne dies), as seen 7 years on by Didion. Throughout the description of the wedding are particulars of dress, flowers, design choices and locale which are not only precise, but also hold tremendous meaning to Didion. The branding of clothing, furniture, dishware, hotels etc, is dominant in many parts of the book - the Didion-Dunnes' family life was filled with movie stars, glamorous restaurants, and the hard work of writing. We see Didion on book tours and backstage during the Vanessa Redgrave one woman show of A Year of Magical Thinking.

Although Quintana's death and dying are prominent in the book, her whole life is explored. Issues of her adoption, her mental illness(es), her precociousness and talents, and above all, her relationship with her mother are intimately explored. The reader is given her childhood poems and descriptions of her nightmares and toys.

Another prominent theme is aging. The author was born in 1934, the same year, she notes, as Sophia Loren. Didion experiences neuromuscular problems and describes a particularly frightening episode of loss of consciousness and bleeding. She fears the deterioration of her cognitive abilities and laments she is unable to gain weight. She has a supportive and loving family and network of friends, but ultimately she ponders her aloneness, the lack of someone's name to write down on hospital forms as her emergency contact.  

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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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Summary:

Candice Millard portrays several figures in the 19th century whose lives came together to change history: newly-elected President of the U.S. James Garfield; the insane would-be assassin Charles Guiteau; Doctor Bliss, the arrogant physician who claimed control of Garfield's care; Alexander Graham Bell, who invented a device to find the bullet; and major political figures of the time. Ironically, Garfield attended the Centennial Exhibition in Philadelphia in 1876 where Joseph Lister was displaying his germ theory of infection and Alexander Graham Bell demonstrated his telephone. But when Guiteau shot Garfield in 1881, the bullets did not kill him.  What killed him after months of suffering was the massive infections caused by the doctors' probing without clean hands or clean instruments. At the autopsy, the doctors saw evidence of massive infections, but the bullet was encysted and harmless. All the probing by the doctors created a tunnel, but it was not the path of the bullet.  "Gentlemen, we have made a mistake," said the doctor.

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Wings

Kopit, Arthur

Last Updated: Nov-17-2011
Annotated by:
Kohn, Martin

Primary Category: Literature / Plays

Genre: Play

Summary:

In the well-written preface, Arthur Kopit describes how he came to write Wings, a play about stroke and language disorder. And he explains there how his fictional account of strokes and their aftermath, "is a work of speculation informed by fact." One fact important to Kopit was that his father suffered a major stroke seven months before Kopit was commissioned by National Public Radio to write an original radio play.

Wings, (which has been sucessfully staged as well) however, is not based on Kopit's father, but on the life of a character, Emily Stilson, who is an amalgam of people, both stroke victims and their stroke-recovered caregivers, from the rehab center caring for Kopit's father. The title of the play refers to an early career of Emily Stilson--she was an airplane wingwalker. Kopit deftly employs the sounds of an airplane in the scenes in which Emily is experiencing a stroke. In fact, the sounds and sights inside and outside of Emily as well as her private dialogue are combined masterfully by Kopit to bring about a high degree of verisimilitude to the chaos produced by stroke.

The play is divided into four sections: "Prelude," the moments before her first stroke; "Catastrophe," her trip to and stay in an institution; "Awakening," a longer section dealing primarily with her struggle to reorient and regain language skills; and "Explorations," where further therapy, including group therapy, and her eventual demise are portrayed.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This short, gripping book describes Taylor's massive stroke, a burst blood vessel in the left side of her brain. Ironically, she was at 37, a neuroanatomist at Harvard, well versed in the anatomy and function of the brain. Her knowledge allowed her to understand from the inside her rapid loss of mental function and, with treatment, her very long (some eight years) recovery to health and, once again, professional activity.

Taylor presents an overview of brain structure and function, emphasizing the different roles of the left and right hemispheres. Since her left hemisphere was damaged and needed to be "rebuilt," in her term (learning to read, to dress herself, to drive a car, to think), she had plenty of time to explore her right brain and understand its wisdom and peace. This is her insight: our culture prizes the admirable but often frantic work of the left brain, putting us in stressed, competitive modes of thinking and acting, often aggressive and argumentative. "My stroke of insight," she writes, "is that at the core of my right hemisphere consciousness is a character that is directly connected to my feeling of deep inner peace" (page 133). Both sides of the brain have their strengths and uses, but she especially enjoys the spiritual and humane aspects of the right brain and, by extension, invites her readers to consider these resources for themselves and for the larger society.

Taylor credits her mother's care for much of the recovery, although it is clear between the lines that Taylor herself worked hard with various therapists (speech, massage, acupuncture). Despite the severity of her injury and the surgery, she appears to have returned to professional work at a high level, fully recovered and very grateful.

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Summary:

Johanna Shapiro, Director of the Medical Humanities Program at University of California Irvine School of Medicine, brings her considerable skills and experience as medical educator, writer and literary critic to this unique volume of medical student poetry. Shapiro collected over 500 poems by medical students not only from her home institution but also from other US medical schools and performed a content and hermeneutic analysis. As Shapiro carefully details in her methodology section, she treats "poetry as a form of qualitative data, and [therefore] techniques of analysis developed for other sources of qualitative data (such as interviews, focus groups, and textual narratives) can be applied to an understanding of poetry." (p. 42)

Relying on the work of Arthur W. Frank (see The Wounded Storyteller), Shapiro devises a typology of student poems: chaos, restitution (and anti-restitution), journey, witnessing, and transcendence (this last category was not Frankian in origin). These categories are developed and explicated in Chapter 2: Functions of Writing for Medical Students. As the author notes, poems traverse the boundaries between types; nonetheless, the framework of the analysis rests with this typology. Further, Shapiro explores the metaphors of topography (illness as a foreign land) and quest (student on a heroic, however tentative or confused, journey) throughout her study.

The book contains many fully reproduced medical student poems, contextualized with academic theory on medical education. Hundreds of references, particularly in the fields of narratology and medical education, are cited. After three chapters of theory and methods, eight topics are explored using the outlined analytic tools: anatomy class, becoming a physician, patient experience, doctor-patient relationship, student-patient relationship, social and cultural issues, death and dying, love and life. Prefacing each of these topics is a scholarly essay providing historical and research foundations; every chapter concludes with a summation.

Within the chapters are examples of poems, not only organized by typology, but also by content. For instance in the patient experience chapter, the topics are: "patient pleas for empathy and compassion," "patient fears and suffering," "stigmatized voices," "vulnerability/courage of child patients," and "personal experiences of illness." Within each topic/subtopic, different poems are highlighted and fully analyzed. Additionally, other poems, not reproduced, are quoted as illustrative examples. Summary arguments are provided at the conclusion of each chapter as well as in the final chapter: "Strangers in a Strange Land: What Matters to Medical Students on Their Journey and How They Tell About It."

Although Shapiro states that her purpose "is not to address the literary and aesthetic attributes and value of the poems", she also notes "when students write authentically about their own experience, the results are uniformly moving, compelling and impossible to ignore." (pp 44-5) Indeed many of the poems are rewarding to read not only for content but also for word choice, word play, imagery and narrative line. For instance, in "Ode to the Peach" Brian McMichael explores the senses Neruda or Pollitt-like: "you invite me with / your voluptuous curves / your feminine little cleft". (p 236) Another example is the humorous, self-deprecating "Piriformis" by Curtis Nordstrom relating an early clinical experience by a medical student who hopes against hope that the patient's presenting complaint will require the student to demonstrate his acumen. Unfortunately the sum total of the student's knowledge base is limited to the location of the piriformis muscle; both the student and patient are "so screwed" when, "Alas, the patient presents with / an upper respiratory infection." (p. 16)

Shapiro's sensitivity and generosity of spirit vis-à-vis the medical student experience are evident throughout the volume. She concludes that "what may be most noteworthy about the analysis of these poems is that, amidst their own difficulties and fears, time and again these students reported engaging deeply with their patients." (p 259) She hopes that medical educators will be encouraged to support "in solidarity" the "idealism and high aspirations" expressed in these student poems. (p. 260)

In a postscript, Shapiro reveals her own experiences as a poet-patient. After noting that "[m]edical students are mostly annoyingly healthy, energetic, smart, and capable young adults who like order, structure, and control", (p 261) she also acknowledges how frequently students grapple with the topic of death and dying in their poems. That her poems emerged from advising a student creative writing group demonstrates how poetry can be renewing and vital not just to the student, but to the educator as well.

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