Lives lived
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《加拿大医疗协会学报》
The boys, or, Waiting for the electrician's daughter John Terpstra, Kentville, NS: Gaspereau Press; 2005 Unpaginated. $25.95. ISBN 1-55447-011-0 Smyth-sewn paperback, card binding, letterpress-printed jacket.
Every family has a "geography," as poet and writer John Terpstra terms it. Families arrange themselves like maps. Each member shares similarities with the others, but has defining characteristics of his or her own. In this outstanding memoir, Terpstra guides us through the geography of an extraordinary family.
More than 30 years ago, Terpstra met and married Mary Ann, a writer and the daughter of an electrician. He also met "the boys": Neil, Paul and Eric, Mary Ann's three younger brothers, only a few years apart in age and each afflicted with Duchenne muscular dystrophy.
In a style that combines economy with beauty, Terpstra recounts the events of a pivotal year, the last in the life of the boys. He plots out their social relationships, including those with a spectrum of medical staff and caregivers who became crucial to their well-being.
And they do enjoy well-being, despite their disease. Their limited physical capacity cannot constrain their active imaginations or their lively personalities. At the outset of the story they are able to play a form of road hockey adapted to their bodies, but as their disease progresses they concentrate on fiction-writing, role-playing (as sports stars and broadcasters), board games, conversation and prayer. The verbal exchanges that Terpstra presents between the boys and a constant stream of visitors and medical professionals shines with intelligence and humour.
Terpstra also conveys, in a clear-eyed, unembarrassed way, the uniqueness of their physicality — how their bodies express their disease, and all the improvisations of medical instruments and equipment required. He relates their therapeutic needs, every step of the "ratcheted-up" demands that the boys' condition places on them, their family and medical professionals, without melodrama but with plenty of emotional investment. In one of the longer descriptive passages in the book, readers watch as the author helps one of the boys get fitted for a "custom brace." Terpstra details the meticulous care and physical exertion required as the attendants apply the "sodden gauze" and plaster.
With the death of grandparents and the departure of more distant relatives from their New Jersey town, the familial geography begins to shift. Rather than capturing these shifts in long-form prose and sequential narrative, Terpstra structures his book like a prose-poem, broken up into short, numbered passages reminiscent of the Epistles. (Terpstra is a practising Catholic, as were the boys and their family.) This allows the author to change tone, style and import as quickly and often as the story requires. In passage 32, a textbook definition of Duchenne's unique manifestations speaks for itself, setting out how the disease "begins insidiously, between ages 3 and 5" and progresses to "muscular deterioration" and finally "progressive weakening of the cardiac muscle." This stark passage is followed by the moment when Mary Ann, watching comedian Jerry Lewis's inaugural telethon for children with muscular dystrophy, "realized for the first time that her brothers were going to die."
And yet there is much living still for the boys to do. In this compelling book, shortlisted for the 2006 Charles Taylor Prize for Literary Non-Fiction, Terpstra celebrates the victory of three fiercely imaginative and mindful lives.(Sean Flinn)
Every family has a "geography," as poet and writer John Terpstra terms it. Families arrange themselves like maps. Each member shares similarities with the others, but has defining characteristics of his or her own. In this outstanding memoir, Terpstra guides us through the geography of an extraordinary family.
More than 30 years ago, Terpstra met and married Mary Ann, a writer and the daughter of an electrician. He also met "the boys": Neil, Paul and Eric, Mary Ann's three younger brothers, only a few years apart in age and each afflicted with Duchenne muscular dystrophy.
In a style that combines economy with beauty, Terpstra recounts the events of a pivotal year, the last in the life of the boys. He plots out their social relationships, including those with a spectrum of medical staff and caregivers who became crucial to their well-being.
And they do enjoy well-being, despite their disease. Their limited physical capacity cannot constrain their active imaginations or their lively personalities. At the outset of the story they are able to play a form of road hockey adapted to their bodies, but as their disease progresses they concentrate on fiction-writing, role-playing (as sports stars and broadcasters), board games, conversation and prayer. The verbal exchanges that Terpstra presents between the boys and a constant stream of visitors and medical professionals shines with intelligence and humour.
Terpstra also conveys, in a clear-eyed, unembarrassed way, the uniqueness of their physicality — how their bodies express their disease, and all the improvisations of medical instruments and equipment required. He relates their therapeutic needs, every step of the "ratcheted-up" demands that the boys' condition places on them, their family and medical professionals, without melodrama but with plenty of emotional investment. In one of the longer descriptive passages in the book, readers watch as the author helps one of the boys get fitted for a "custom brace." Terpstra details the meticulous care and physical exertion required as the attendants apply the "sodden gauze" and plaster.
With the death of grandparents and the departure of more distant relatives from their New Jersey town, the familial geography begins to shift. Rather than capturing these shifts in long-form prose and sequential narrative, Terpstra structures his book like a prose-poem, broken up into short, numbered passages reminiscent of the Epistles. (Terpstra is a practising Catholic, as were the boys and their family.) This allows the author to change tone, style and import as quickly and often as the story requires. In passage 32, a textbook definition of Duchenne's unique manifestations speaks for itself, setting out how the disease "begins insidiously, between ages 3 and 5" and progresses to "muscular deterioration" and finally "progressive weakening of the cardiac muscle." This stark passage is followed by the moment when Mary Ann, watching comedian Jerry Lewis's inaugural telethon for children with muscular dystrophy, "realized for the first time that her brothers were going to die."
And yet there is much living still for the boys to do. In this compelling book, shortlisted for the 2006 Charles Taylor Prize for Literary Non-Fiction, Terpstra celebrates the victory of three fiercely imaginative and mindful lives.(Sean Flinn)