Showing 61 - 70 of 274 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
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 Ferris, Kenny 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.
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.
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.
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.
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.
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.
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.
Summary:As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
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).
Summary:This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease. It does just that. Brilliantly.