Highly recommended. (10 b&w photos)
Moving account of raising a son with Duchenne muscular dystrophy, a progressive degenerative disease that first cripples and then kills its young victims.
Wolfson, whose articles about her son Ansel and issues related to raising a disabled child have appeared in the Atlantic Monthly, the New York Times, and other magazines, here combines a personal memoir about the impact of muscular dystrophy on a family with an informative portrait of the disease itself, including its history and the genetic research currently being done. As the author explains, the Duchenne gene is located on the X chromosome, meaning that women who are carriers have a 50-50 chance of passing it on to their children. Genetic analysis showed that Wolfson, one of her sisters, and their mother all had the defective gene, putting any daughters they might bear at risk of being carriers and any sons victims of the lethal disease. Perhaps the most poignant portion of the book deals with the mental anguish of the author’s third pregnancy (Ansel was the first, a daughter came second). Now knowing she is a carrier, she undergoes prenatal testing that reveals first that the fetus is male and only later that it does not have the defective gene. Wolfson can be intensely personal, quoting frequently from her dream journal and showing openly her pride, her anger, and her sadness. At other times, she is the diligent reporter, exploring the world of genetic research, interviewing scientists, trying to clarify for herself and for the reader the work of geneticists that may someday lead to a treatment for Duchenne muscular dystrophy. She opens her narrative months before Ansel’s birth, as she and her husband admire a print of Ansel Adams’s hauntingly beautiful photograph Moonrise, Hernandez, New Mexico, 1941; she closes with Ansel 15 years old and wheelchair-bound, herself gazing up at a three-quarters moon, uncertain whether it is rising or setting.
Highly recommended. (10 b&w photos)Pub Date: March 1, 2003
ISBN: 0-312-28908-1
Page Count: 256
Publisher: St. Martin's
Review Posted Online: June 24, 2010
Kirkus Reviews Issue: Jan. 1, 2003
The author's youthfulness helps to assure the inevitable comparison with the Anne Frank diary although over and above the...
Elie Wiesel spent his early years in a small Transylvanian town as one of four children.
He was the only one of the family to survive what Francois Maurois, in his introduction, calls the "human holocaust" of the persecution of the Jews, which began with the restrictions, the singularization of the yellow star, the enclosure within the ghetto, and went on to the mass deportations to the ovens of Auschwitz and Buchenwald. There are unforgettable and horrifying scenes here in this spare and sombre memoir of this experience of the hanging of a child, of his first farewell with his father who leaves him an inheritance of a knife and a spoon, and of his last goodbye at Buchenwald his father's corpse is already cold let alone the long months of survival under unconscionable conditions.
Pub Date: Jan. 16, 2006
ISBN: 0374500010
Page Count: 120
Publisher: Hill & Wang
Review Posted Online: Oct. 7, 2011
Kirkus Reviews Issue: Jan. 15, 2006
A moving meditation on mortality by a gifted writer whose dual perspectives of physician and patient provide a singular...
A neurosurgeon with a passion for literature tragically finds his perfect subject after his diagnosis of terminal lung cancer.
Writing isn’t brain surgery, but it’s rare when someone adept at the latter is also so accomplished at the former. Searching for meaning and purpose in his life, Kalanithi pursued a doctorate in literature and had felt certain that he wouldn’t enter the field of medicine, in which his father and other members of his family excelled. “But I couldn’t let go of the question,” he writes, after realizing that his goals “didn’t quite fit in an English department.” “Where did biology, morality, literature and philosophy intersect?” So he decided to set aside his doctoral dissertation and belatedly prepare for medical school, which “would allow me a chance to find answers that are not in books, to find a different sort of sublime, to forge relationships with the suffering, and to keep following the question of what makes human life meaningful, even in the face of death and decay.” The author’s empathy undoubtedly made him an exceptional doctor, and the precision of his prose—as well as the moral purpose underscoring it—suggests that he could have written a good book on any subject he chose. Part of what makes this book so essential is the fact that it was written under a death sentence following the diagnosis that upended his life, just as he was preparing to end his residency and attract offers at the top of his profession. Kalanithi learned he might have 10 years to live or perhaps five. Should he return to neurosurgery (he could and did), or should he write (he also did)? Should he and his wife have a baby? They did, eight months before he died, which was less than two years after the original diagnosis. “The fact of death is unsettling,” he understates. “Yet there is no other way to live.”
A moving meditation on mortality by a gifted writer whose dual perspectives of physician and patient provide a singular clarity.Pub Date: Jan. 19, 2016
ISBN: 978-0-8129-8840-6
Page Count: 248
Publisher: Random House
Review Posted Online: Sept. 29, 2015
Kirkus Reviews Issue: Oct. 15, 2015
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