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This gripping narrative traces the history of the efforts to eradicate smallpox in the 1970s, the top-level decisions to keep a few vials of it for emergency purposes in American and Soviet freezers, and the reemergence of smallpox not only as a health threat, but as a potential bioweapon of unequaled destructive power. Preston details maverick natural cases that surfaced after worldwide eradication efforts, how it was discovered that undocumented reserves of smallpox were not only being kept, but researched and possibly "weaponized," and how hotly, in the US, teams of scientists and military intelligence personnel debated funding new smallpox research in the US with a view to developing a new vaccine as a defense.
The ethical issues in those debates are unprecedented in the scope of the possible public health threat and the variables that might make traditional vaccination ineffective against the weaponized virus. As in his previous books on biological threats, The Hot Zone and The Cobra Event (see annotation), Preston follows the work and lives of several key scientists and includes scenes from interviews with a variety of persons involved in confronting the political, ethical, and medical dilemmas posed by smallpox research and efforts to track and control it.
The subtitle of this memoir is "Meditations upon Returning." Richard John Neuhaus is a Catholic priest and scholar, director of the Institute on Religion in Contemporary Life in New York City and described on the book cover as "one of the foremost authorities on religion in the contemporary world." The book is a meditation on his near-brush with death as a result of colon cancer.
As Fr. Neuhaus describes it, he underwent two colonoscopies to ascertain the cause of persistent abdominal symptoms, but in both cases his colon was pronounced completely normal. However, shortly thereafter, he developed extreme abdominal pain and was taken to the hospital, where emergency surgery was performed and a colon cancer the size of a "big apple" was removed. During the first procedure, the surgeon nicked his patient’s spleen, so a second emergent procedure was required to control hemorrhaging.
The two procedures left Fr. Neuhaus very near death, but he gradually recovered over a period of several months. When introducing the story of his illness, the author comments, "several lawyers have told me my case would make a terrific malpractice suit." (p. 79) But he says he won’t sue, because it would "somehow sully my gratitude for being returned from the jaws of death." (p. 80) In fact, he has considerable praise for his surgeon.
The narrative of Fr. Neuhaus’s illness occupies a relatively small proportion of this memoir. The first three of seven chapters consist of the author’s reflections on the meaning of suffering and death, and especially the existential question of "Why me, now?" (His answer is "Why not?) In chapter five Fr. Neuhaus describes a near-death experience that changed his life, a scene in which he heard two "presences" tell him, "Everything is ready now." In much of the rest of the book, the author examines and rejects the possibility that the experience was a dream or an hallucination. He is convinced that he witnessed the "door" to a more glorious life after death, and this has, in some sense, profoundly changed his present life.
When literature and cultural studies professor Michael Bérubé's son James was born in 1991, he was diagnosed with Down Syndrome. Negotiating various medical, social, and educational environments and the identities each assigns their son, Bérubé and Janet Lyon (his wife, a literature professor and former cardiac-ICU nurse), become effective advocates for Jamie and embark on a course of questions about the social systems that produce disabled identities and administer to those human differences termed significant ones. Bérubé engages these questions with a mixture of family experience (his own, and that of other families with disabilities), historical research, critical theory, and sophisticated critical analysis.
This masterful collection of essays was written by Gawande while he was a general surgery resident. The book consists of fourteen essays divided into three sections: Fallibility, Mystery, and Uncertainty. Although some of the essays fall clearly within the boundaries of the section title (such as "When Doctors Make Mistakes" and "When Good Doctors Go Bad" in the Fallibility section), others cross boundaries or don’t fall as squarely in these general themes ("Nine Thousand Surgeons," an anthropological essay on the cult and culture of a major surgical convention, is also located in the Fallibility section). Nevertheless, the many pleasures of the individual essays, the range of topics explored in depth, and the accuracy of the medicine portrayed are the true strengths of this work.
The book begins Dragnet-style with an Author’s Note: "The stories here are true." (p. 1) And it is this attention to fidelity that makes the essays so compelling. Because even when the truths are hard--the terrible acknowledgment by the medical neophyte about lack of skill and knowledge, the mistakes in judgment at all levels of doctoring, the nature of power relations and their effects on medical pedagogy and on the doctor-patient relationship, the gnawing uncertainties about so many medical decisions--the author confronts the issues head on with refreshing rigor, grace and honesty.
Many of the essays reference scientific and medical research (historical and current) as part of the exploration of the topic. This information is imbedded within the essay, hence avoiding a dry recitation of statistical evidence. Typically, the reader’s interest in an essay is immediately piqued by a story about a particular patient. For example, the story of an airway emergency in a trauma patient, her oxygen saturation decreasing by the second as Gawande and the emergency room attending struggle to secure an airway, surgical or otherwise, sets the scene for "When Doctors Make Mistakes."
This leads to a meditation on not only the culture of the Morbidity and Mortality Conference, with its strange mix of third-person case narrative and personal acceptance of responsibility by the attending physician (see Bosk, Charles, Forgive and Remember: Managing Medical Failure, U. Chicago Press, 1981 for an in depth analysis of this culture), but also a positive examination of the leadership role that anesthesiologists have played in improving patient safety via research, simulator training and systems improvement.
Gawande’s journalistic verve takes him beyond the confines of his own hospital and training to interview patients and physicians on topics as diverse as incapacitating blushing ("Crimson Tide"), chronic pain ("The Pain Perplex"), malpractice and incompetence ("When Good Doctors Go Bad") and herniorraphy ("The Computer and the Hernia Factory"). In addition, he visits his own post-operative patients at home ("The Man Who Couldn’t Stop Eating" and "The Case of the Red Leg") which gives a longer view of postoperative recovery and a broader exposure to patients’ perspectives.
Some of the most telling moments come with the introduction of his children’s medical problems into the text. These range from the relatively straightforward (a broken arm, but a chance to comment on detection of child abuse in the emergency room) to the downright parental nightmare scary (severe congenital cardiac defect in their oldest child and a life-threatening respiratory infection in their prematurely born youngest).
These last two experiences are introduced to provide an angle on issues of choice. Choice of a fully trained, attending physician rather than a fellow to provide follow-up cardiac care for their oldest, and the choice to opt out of the decision-making process for whether to intubate the trachea of the youngest and hence leave the medical decisions up to the care team.
Born in Newnan, Georgia, and raised in Jackson, Florida, Cary Henderson was the first member of his family to go to college. He eventually earned a Ph.D. from Duke University and with his family, settled into an academic career as a history professor at James Madison University. In 1985, at the age of fifty-five, he was diagnosed with Alzheimer's disease.
As his ability to read and write deteriorated, Henderson began using a pocket recorder to tape what he called "the anecdotal career of an Alzheimer's patient" in order to help others "understand the world that they are now forced to live in" (4). His recorded journal spans the fall of 1991 to the summer of 1992. His wife and daughter began the long process of editing his tapes and were ultimately joined in the project by Nancy Andrews, award-winning photographer from The Washington Post, who provided images of Henderson to accompany his words.
This book's title is from a Goethe poem, "The Holy Longing," translated from German in its entirety by Robert Bly: "And so long as you haven't experienced / this: to die and so to grow, / you are only a troubled guest / on the dark earth." Ten intensely personal essays tell of the suffering and everyday presence of pain of a severely disabled writer who has advancing multiple sclerosis, and of how, "in a very real sense, and entirely without design, death has become [her] life's work." (p. 13)
Beginning with her father's sudden death when she was a child, the essays describe her aging mother's expected death and the family's decision to take her off life support; her caretaker husband's diagnosis of metastatic cancer with uncertain prognosis; her own attempted suicide; death of friends, pets, including her beloved dog; and a young pen-pal executed on death row. If that weren't enough, a coda, her foster son's murder and again the decision to remove life-support, provides "[t]he end. For now." (p. 191)
Another Dimension is an occasional feature of the journal, Emerging Infectious Diseases, published by The Centers for Disease Control and Prevention (CDC). These essays (and occasionally poems or stories) focus on human and philosophical issues related to medical practice, scientific research, and public health. The intention of this feature is to bring a new perspective to the journal’s coverage of medical science and public health. Some of the essays include a painting or other image that draws attention to the subject matter of the essay.
Managing editor, Polyxeni Potter, with the encouragement of Joseph E. McDade, founding editor of the journal, initiated and is guiding this feature (see also the annotation of Potter: Emerging Infectious Diseases cover art). Since this is a government site, its material is freely available on-line.
One 1970s summer, Madeleine L'Engle brings her mother to Crosswicks, the rambling country house where the extended family has spent extended vacations for many years. At ninety, the elder Madeleine is suffering from the ravages of the now vanished diagnosis, 'hardening of the arteries.' By times she is frightened, angry, or difficult; at night she cries out or tries to wander. Round-the-clock caregivers help with the strain, while the writer's own children and grandchildren figure in her journal with concern, affection, and wonder.
The presence of the dwindling old lady provokes detailed recollections--direct and indirect memories--of the lives of her mother, grandmother, and great-grandmother, all named Madeleine--bringing the span of this narrative to six generations. Despite the grandmother's slow mental decline, death comes suddenly, while L'Engle is away and her son is left to help.
In this short volume, Janet Malcolm frames a series of reflections on Chekhov's life and work with her pilgrimage to Chekhov-related sites in Russia and the Ukraine. The book begins with Malcolm's visit to Oreanda, a village on the Crimean coast near Yalta, which is the site where the fictional lovers in Chekhov's story The Lady with the Dog (1899, see annotation) sit quietly and look out at the sea on the morning after their first sexual encounter. While these lovers are fictional, their creator actually spent the last several years of his life as a respiratory cripple living amid the seascapes around Yalta.
The visit to Oreanda occurred near the end of Janet Malcolm's literary journey, but it provides a fulcrum or center of gravity for the book. From there, she constructs a narrative with three interweaving plots. One consists of her reminiscences of the last 10 days or so in St. Petersburg and Moscow, and her visit to Chekhov's estate (now a state museum) in the village of Melikhovo, south of Moscow. A second presents biographical material about Chekhov. Malcolm triangulates and interweaves these two with critical observations about the writer's stories and plays.
Lance Armstrong, (currently) four time Tour de France cycling champion, is a survivor of metastatic testicular cancer. This book is largely the story of how his life changed from the moment of his diagnosis (October 2, 1996) onwards. He had been a world class cyclist prior to cancer, but his experience with cancer gave him profound insight not only into his life as a cyclist and competitor, but into life itself.
It is this latter insight which he recognizes as ultimately the most important aspect of his cancer experience. Armstrong notes: "Odd as it sounds, I would rather have the title of cancer survivor than winner of the Tour, because of what it has done for me as a human being, a man, a husband, a son, and a father." (p. 259)
Written in a conversational, straightforward tone, the book chronicles Armstrong's childhood in Texas as the son of a strong, loving, supportive, financially struggling, young mother; his beatings at the hands of a step-father; and his early excellence at endurance athletics. Armstrong became a brash powerhouse cyclist and began to enjoy the material rewards of winning while ignoring the onset of symptoms. At the time of diagnosis, the cancer had spread to his abdomen, lungs and brain.
He documents his search for optimal care, sperm banking, lack of health insurance, surgeries, chemotherapy, self-education and interactions with doctors and nurses. Through it all he acknowledges the tremendous support of his mother and friends, as well as sponsors who stuck with him with no assurance that he would survive, let alone race.
Before he was even through the first year, he decided to start a charitable organization, The Lance Armstrong Foundation, dedicated to cancer research and support of cancer survivors. Through this effort he met his future wife, Kristin Richard (Kik), and her love and support helped him through the dark days of emotional soul-searching post-treatment. The book also details her struggles with successful in vitro fertilization (They currently have a son and twin daughters).
Chapter Nine, The Tour, is an in depth look at the 1999 Tour de France which Armstrong won with the help of his US Postal Service teammates, expert coaching, and his will. This race is brutal, dangerous, and as Armstrong notes, both "a contest of purposeless suffering" and "the most gallant athletic endeavor in the world." (p. 215) He details the maneuvering in the peloton, the strategies, the stages and personalities.
The book concludes with reflections on the birth of his son, the anniversary of his cancer diagnosis, the love of his wife, and his need to ride.