Showing 211 - 220 of 637 annotations tagged with the keyword "Disease and Health"
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.
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.
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.
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").
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."
This slim chapbook contains eleven poems that tell the story of a mother and her alcoholic son--how she suspects and then discovers his addiction, how she vacillates between fear and denial, despair and hope. The place in between these extremes of emotion is the Hurricane Zone, and these poems--written by "Anonymous" to protect the son's identity--are hard-edged, starkly moving, and ultimately redeeming.
In "Birthday," the narrator looks back thirty-eight years to her son's arrival, "his mashed, chinless face / dented forehead /breaking its way out of me." The next several poems ("Foreshadowing," "Denial," "Shikker," "Postcard") address denial, how a parent can suspect their child is slipping into the abyss of alcohol or drugs and still wish to create a different story from the available details.
Finding help in Alanon, the narrator begins to work her program. In "Late Lilies" and "Detachment," she finds where a mother and son's boundaries begin and end: "he isn't me, / he isn't mine." In "Give Us This Day" (referring to the group's recitation of The Lord's Prayer at meeting's end) the mother, "lone Jew, lone atheist," learns detachment, that "cloud shadows of startling darkness / moving over the water are not the water."
"Ferryboat" and "Hope" reveal the narrator's painful longing to protect her son as well as her own obsession: a series of affairs early in her marriage when this son was a teenager. That memory, one both cherished and regretted, offers a thin moment of hope: "Anyone who wants to can change." But even when the son is good--able to work on a second novel--there is uncertainty and near-miss communication.
In "Hurricane Zone," the final poem, there is no easy resolution. The victory comes in addressing the topic of alcoholism straight on and making these poems available for others who may be struggling along the same journey.
This short novel tells the story of Renee and Michael Talbott and their son Evan, a young man "admitted to the hospital as a voluntary patient when he was no longer able to survive in the outside world." Evan's schizophrenia and recurrent institutionalizations, described from his mother's point of view, devastate his family and drive a wedge of guilt and resentment between his mother and step father.
The novel, although written in simple, straight-forward prose, suggests a Dickens-like expose' of social ills, human entanglement, and (perceived) medical mistakes. At the book's conclusion, Renee, sensitized to the fate of all who suffer from mental illness, finds no resolution even when Evan is, for a time, stable and independent.
Louis Drax is a nine-year-old boy living in France with his stay at home mother and Air France pilot father. Such an apparently normal family description is the merest tissue of appearances. The father is probably an alcoholic and unfaithful; the son is "accident-prone" (a nearly fatal episode of SIDS at two weeks of age, a near fatal electrocution at age 6 after falling on the tracks of the métro in Lyon; salmonella, tetanus, botulism, meningitis, etc. [or, as Louis is fond of saying, "blah, blah, blah."]) and the mother has issues that only emerge as one becomes more deeply involved in what is a mystery story.
Like Gabriel Garcia Marquez’s A Chronicle of a Death Foretold, or Janet Lewis’s superb The Trial of Søren Qvist, one knows the ending early on (page 16 in Louis Drax), but not the details. The why and the how are the stuff of the novelist’s art in all three books.
With premonition of more danger, Louis goes on a family picnic (see below for the author’s biographical basis for this tale) and winds up at the bottom of a ravine, dead. Drowned and dead. A few hours later, in the morgue, he is found to be alive. Comatose and in a persistent vegetative state but alive. He is therefore transferred to the care of a neurologist specializing in comatose patients at the Clinique de l’Horizon (formerly l’Hôpital des Incurables).
It is here that the mystery unfolds. The questions are: How did Louis end up at the bottom of the ravine? Did his father, now missing, push him as his distraught mother alleges? What role does the clearly neurotic mother play in this tragedy? And who exactly is Louis Drax? Lastly, how do the mysterious letters allegedly from him, written while still in a coma, come to be?
In 1997, the author’s 14-year-old son, Ike, began a puzzling, progressive degenerative illness. Slowly, this undiagnosed disease claimed Ike’s ability to walk, to study, to participate in normal adolescent activities and, finally, to reason. Going from physician to physician, seeking if not a cure than at least a working diagnosis, the author became a self-taught expert in all things neurological.
As her son’s condition worsened, she also became an expert in grief and despair. In Blue Peninsula, her first book, McKeithen relates how she became, as well, a poetry addict--reading, devouring, tearing poems out of journals, buying volumes that she could carry to office or hospital, hiding poems in her purse or pocket. Using poems or pieces of poems--sometimes she could not bear to read a final stanza, one that perhaps ended in death or unrelenting despair--she cobbled together a survival plan.
Indeed, in this small book of short, to-the-point chapters (with titles such as "Crying in the Car," Open to It," Acquiring Losses," Sifting Questions," "Naming," "Shipwreck," and "Shelving Selves"), she reveals how she used poems to grieve, to question, to celebrate, to maintain, to curse, and to endure. The story of Ike’s illness, treatment and slow decline are interwoven with these poems and the author’s often surprising commentary on how she mined the poet’s metaphors. If a poem could put suffering into words, the author suggests, she needed that poem to survive.
The author’s choice of poems and poets is far-reaching, and her interpretations of what they mean and how they helped her along the path of her son’s illness are intimate, gritty and insightful. A brief listing of poets includes Emily Dickinson (whose poem "Blue Peninsula" supplied the book’s title), Billy Collins, Elizabeth Bishop, Diane Ackerman, Zbiginew Herbert, The Rolling Stones, Paul Celan, Molly Peacock, David Whyte and many others, known and lesser known.