Showing 211 - 220 of 675 annotations tagged with the keyword "Illness and the Family"
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 little volume of poetry and photos is a narrative of the life and death of a small boy with leukemia and the connection this creates with his mother, his father, and his stepfather. The poems are created by the child’s mother (the author) during the illness and after the death of her son in his early childhood; photos are done by the author’s brother. The author creates the scenario in her brief introduction to the collection of poems and photos.
In a stuttering fashion, the reader is guided through mother’s grief as she holds her son through multiple chemotherapy sessions, reevaluations, disappointments, and finally, the terminal events. The entire poetic experience is calmly reflective, but the deep grief of mother bubbles to the surface--in a controlled manner that makes the reader feel her pain, and also accept her acceptance.
The poems themselves are compelling in their simplicity: after Sam dies, the author writes, of a note of condolence received by a friend, "Now that I have a child of my own, / a friend writes, "I understand your loss." / "No," I think, "now you understand / what I had."
The author, as she adapts to the absence of her firstborn, has a second son. She reflects on the joy that she feels, but the impossibility of replacing a first love. The event of Sam’s death is so ethereal that it cannot be dated. It is a universal experience for those left behind. And Hutner leaves the reader with this sense of timelessness with her poetry, and with her own death from breast cancer in 2002.
Summary:In Dirty Details, Marion Deutsche Cohen writes about the unrelenting labor entailed in caring for her husband Jeffrey at home as multiple sclerosis turns his symptoms from "mere inconveniences" (11) to extraordinary demands, which can disturb her sleep as frequently as twenty times a night. The premise of her unsparing narrative is that "we have got to spill the dirty details" (26) of such arrangements before the endurance-draining responsibilities of home care such as hers can be understood and redressed. In a culture that favors narratives of seemingly heroic individual effort, Cohen's brutally forthright descriptions of the effects of Jeff's needs on her life can be mistaken for a self-pitying complaint, rather than an urgent, revelatory, political call to action. Like her husband, a well-published physicist at the University of Pennsylvania when diagnosed with MS at age 36 in 1977, Cohen is an accomplished professional. With a PhD in mathematics, Cohen teaches college students as well as publishes poetry and prose. She and her husband also shared, with increasing asymmetry, the parenting of their four children.
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.
Banishing Verona concerns a 22-year-old house painter living in London. One soon realizes that Zeke Cafarelli is not normal. He has had a nervous breakdown a few years earlier; collects clocks--he has nine at the beginning of the novel and adds two more by novel's end--which he takes apart and restores; he has basic questions about interpersonal relations that, were it not for his illness, mentioned once, briefly and vaguely (24), one would describe as childlike naiveté.
For example, he wonders why people lie. Or, why is it so easy to identify vegetables (his parents are greengrocers) but not people each time one encounters them in even slightly different settings? Several times the author describes Zeke's mother or father (whom Zeke calls Gwen and Don, respectively) while their son is trying to confirm their identity as his parents.
Quite early in the narrative, like a dea ex machina, Verona MacIntyre enters Zeke's life. Or perhaps Venus on the half shell would be a more specific identification of the dea, since Verona is pregnant, and soon becomes as naked as Venus in the famous painting by Botticelli, to whose paintings Zeke is likened with his angelic appearance and lustrous hair. The two become oceanic--if not star-crossed--lovers-at-first-sight since Verona has to traipse off to Boston to help bail her sociopathic brother out of yet another financial and amorous mess of his own making. Despite the appearances of Jigger (Verona and Henry's grandfather in the persona of a long letter to Verona), and Toby (a mutual lover-friend of Verona and Henry), and Maurice (Gwen's lover), the plot does not seem unwieldy.
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?
This chapbook of 26 poems traces the author's interactions with her mother, a woman lost in the morass of Alzheimer's disease. In the first poem, "The Loss" (1), the author takes us into her mother's home--a disorganized mess of stained thrift shop clothes folded and refolded into piles. The daughter tricks her mother into moving in with her "for a trial" which becomes permanent.
In the last poem, "At Least This" (26), the poet stoops "to pull the diaper / up around my mother's / waist, my temple / near her breasts." As the daughter leans into this task, the mother caresses her hair, embraces her. This hug, beautifully and simply portrayed, is the poet's fragile reward for all the struggles, mercies and difficult moments examined in the poems between.
These poems are both beautiful and unfailingly honest, addressing with humor and charity the difficulties of caring for a parent with this disease. In one poem, "The Battle" (5), the mother slathers herself with Vaseline. In another poem, "The Bath" (7), the mother lies in the bathtub, her flaccid skin smoothed by water's illusion, her body suddenly as lovely as Bonnard's painting of a woman bathing. "This is the mother I battled / when young: the mother / who beat my defiance; / the one I hit back," the poet writes in "A Late Blessing" (6), and in another poem, "Intellectual Opiate" (10), she speaks of her mother's love for words she no longer understands.
But these poems are more than poignant narratives about a daughter's relationship with a once-difficult, now dependent mother. They address the "seeds of her disease" (11), exposing the flaws of this relationship without dishonor or blame. In these poems, Slatkin's mother appears vibrant and whole, not ravaged by disease. Rarely have the difficulties and possibilities of Alzheimer's disease been presented in poetry with such insight and respect.