Summary:

Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.

The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.

The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.

For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.

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The lives of writer Cathy Crimmins, her lawyer husband Alan Forman, and their seven-year-old daughter were changed forever on July 1, 1996, at a lake near Kingston, Ontario. "Alan’s brain got run over by a speedboat. That last sentence reads like a bad country-western song lyric, but it’s true. It was a silly, horrible, stupid accident." (p. 5). While Alan steered a small boat back to dock at the end of their vacation, a teenager drove a speedboat literally over him, causing major traumatic brain injury (TBI) including seizures, coma, hemorrhage and paralysis.

Crimmins chronicles her husband’s remarkable recovery with a mix of humor, medical information, anger at HMO denial of benefits, and gratitude for the care of physicians, nurses, therapists, EMT, friends and family during this grueling, and in many ways, never-ending ordeal. Although Alan survived -- and is now capable of walking, speaking, reading, loving, working and driving -- he is a different person. The injury to his frontal lobes causes him to be disinhibited, erratic, angry, irrational, petulant, obsessive, devoted yet cruel to his daughter, and prone to severe "cognitive fatigue."

TBI is a bizarre, unpredictable illness. Crimmins notes that the degree of Alan’s recovery is atypical for the force of his trauma. In addition, TBI survivors say and do wacky things: "Where is the mango princess?" was one of Alan’s first utterances after emerging from his coma. Alan’s pre-accident sharp-edged humor was replaced by bland affability and a disturbingly vacant gaze. Yet some of what he says and does is heart wrenching and poignant.

The book clearly documents that the trauma is not limited to the patient. As Crimmins so eloquently and honestly recounts, she, her daughter, and all who knew Alan were traumatized by the accident and its aftermath.

Crimmins is an aggressive caregiver, thrust kicking and fighting into the caregiver role. Her advocacy for her husband, including research into the best rehabilitation facility, day hospital, vocational rehabilitation program, doctors, therapists, etc., was unwavering and crucial to his optimal care and outcome.

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The story opens two years into the writer's undiagnosed hematological disorder, focusing the narrative on the two most significant issues in this young woman's life--her first experience with a love relationship that is to result in a long-term commitment, and the disease that for years is to affect the way she lives her day-to-day life. Breslin describes in considerable detail her encounters with hospitals and health care professionals, none of whom are able to diagnosis nor prognosticate but continue to treat each new symptom as it arises.

In the midst of this uncertainty which pervades the memoir, are the subtexts of the love between the author and her husband and the relationship she maintains with her father. The reader, presumably like the author herself, never learns the name of the mysterious illness that informs the tale.

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Ott opens her treatment of the cultural, social and economic evolution of tuberculosis in the U.S in the mid-nineteenth century, although she refers back to antecedent historical events. The study follows how the evolving principles of bacteriology were applied to a syndrome the medical world did not recognize as having a single etiology. Tuberculosis did not fit the epidemiologic patterns of epidemic diseases as recognized by public health specialists.

Ott focuses heavily on the economics of the illness, as well as on its changing social status. Her final chapter examines the contemporary meaning of the disease as it once again is heralded as a public health problem in the U.S.

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In this study of a small group of children followed by an HIV clinic at an unidentified institution, the author describes in detail her experience with the children, their caregivers--sometimes biological family members, sometimes foster providers--and the medical staff responsible for the management of their viral infection. The writer, a humanities professor at a medical school, acknowledges the privilege she felt at having been in a position to develop a close personal contact over several years with the people about whom she writes.

The frame of the study is case-oriented. Each child is described and the medical and social histories of a total of nine are outlined and then fleshed out with personal interviews and home visits made by the writer. In addition to the histories, Hawkins includes a glossary of contemporary medical terms and common acronyms relevant to HIV, a bibliography, and a list of resources for those interested in looking further into this infection as it presents in children.

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This is the story of a child/young adult who had the misfortune of multiple health problems from the age of three until his death at 19. But even more than Jesse's story, this is the narrative of and by Jesse's father as he recalls the emotional rollercoaster accompanying the abbreviated span of his oldest son's life. The author kept detailed journals of his and his son's experiences with the health care professions, while also collecting the boy's artwork which appears to be Jesse's personal record of his own internal struggle.

Although not chronologically linear, the narrative allows the reader into the soul of the parents' agony, from the time of Jesse's initial diagnosis of hydrocephalus, through management of inflammatory bowel disease, and into the final chronicle of unsuccessful liver transplantations.

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The novel follows, in a roughly temporal manner with flashbacks, the evolution of the illness of a child afflicted with promyelocytic leukemia and her family's attempt to save her. At core is the issue of conceiving a child with the hope that she (Anna) will be able to provide what her older, ill sister (Kate) needs to survive. The initial need is met by cord blood transfusion, however, as time passes, Kate relapses, and technology makes new demands on the obligatory donor.

Eventually Anna, at age 13, requests emancipation from the health care control of her beleaguered parents. The reader is introduced to the dilemma as the adolescent donor seeks legal help. Over the course of the novel, which is structured with a revolving first person viewpoint, the reader becomes acquainted with the personal perspectives of many characters, but with no warning of the ultimate outcome of the family drama.

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The poet describes the suffering associated with a migraine headache.

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Summary:

This volume is divided into four parts, each containing powerful and fairly short poems--rarely longer than one page and often less than 30 lines--that share the author's experience of disability. The four sections unfold the struggle of coming-to-terms with disability organically, beginning with the body and concluding with the will to survive and transcend the physical.

Section One considers the role of fate or luck (The Short Song of What Befalls--see this database, "Words Like Fate and Pain"), the burden of chronic pain ("Night Shift," Pointing to the Place of the Pain--see this database, "Slow Freight"), the desire to escape physical limitations ("Not Down Here," "What Comes Next"), and the difficulty of adjusting to an altered self image ("What Happened to You?" "Protect Yourself From This").

The sections that follow offer poems that attempt to understand disability intellectually and viscerally ("Levels of Being," "Loving the Clay,"), to look beyond the suffering self to the suffering of others ("Beginning to Write," "The Word 'Class' Should Not Appear in the Poem"), and finally to love and accept what's given ("What Keeps Me Here," "Dreaming the Tree of Life").

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This long poem is divided into 48 segments, each a meditation on the narrator's struggle to live with emphysema. Some sections consist of only one line (10: "How alone can you get?"), others are more lengthy; for example, section 37 is a primer on inhalers, "puffers, " how to use them and what happens if you don't.

Every observation in this poem is from a literate poet's point of view, one here focused on emphysema, and so the breath, the body, and the daily rituals of living become primary. The whole world breathes--even the computer, which "sighs" when it is turned off (section 34)--but the poet cannot catch his breath. Reading the poem, even silently, the reader becomes short of breath too, physically aware of the patient's limitations.

In section 24, Carruth laments that he cannot even negotiate the 500 yards up hill to his son's house; in section 29, he writes that even the dog seems "reproachful" when his owner is unable "to play" and throw the blue ball. The accumulated limitations of these taken-for-granted actions makes the author both "pissed and sorry" for the dog, for the man, for the world.

In spite of the physical rebellion of the lungs, the narrator continues to smoke, as many patients with chronic obstructive pulmonary disease (COPD) do, adding another dimension to this poem. Even facing death, the patient's addiction to tobacco is overwhelming; in section 11, the narrator says, "Now I am dying. Now I am afraid. Please give me a cigarette." In section 45, Carruth laments this "nonsense of misery."

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