Books in Canada
We are soon told that the affliction is Duchenne’s muscular dystrophy, and that the brothers, Eric, Paul, and Neil, are not the author’s relations-at least not by birth. They are the siblings of Terpstra’s college girlfriend, Mary Ann, and initially encountered by the author in a scene that truly encapsulates the brothers’ irrepressible spiritedness. At the tense moment of introductions during a holiday visit, the young and able Terpstra clumsily stumbles over the threshold of Mary Ann’s New Jersey home, and falls before the wheelchair-bound boys, then teenagers. The brothers’ responses are good-natured: “A bit wobbly there,” one observes, while the others chime in with “Johnny’s (you don’t mind if we call you Johnny, do you?) too light on his feet,” and with “Trying to impress us?” Terpstra then finds himself being irrevocably brought into their world with a surprising game of makeshift indoor hockey. And so Terpstra settles on a narrative entry-point that is practical, but by no means restrictive. He tells us that the book’s title picks up on the way in which outsiders typically referred to the three brothers, though it would be a mistake to assume that by using it here, the author distances himself from the family’s experiences: his segue into their lives occurs by virtue of his marriage to Mary Ann, the “electrician’s daughter”. But as Terpstra affirms repeatedly, Eric, Paul, and Neil come to be as much his brothers as they are his wife’s.
Terpstra recognises the limitations of his own perspective, however, and attempts to compensate by combining other kinds of evidence-both real and extrapolated-with his own memories. He includes, for instance, passages taken from his wife’s journals and poetry, with the intent of filling in some of the gaps in his knowledge of what it means to grow up healthy in an atmosphere of illness. As it turns out, it doesn’t mean living with fear, but with inspiration: “But even in dying,” one of Mary Ann’s high school poems read,
the living
will never fade,
because i’ll remember
that you
were never waiting.
Terpstra also devotes attention to the brothers’ parents, known affectionately as Mumphy and Boss. Here he draws from actions more than words, given the couple’s reluctance to openly express their emotions. Mumphy is offered as the uncompromising house manager whose fatigue becomes increasingly apparent as her sons enter the last years of their illness. Even when Terpstra and Mary Ann reside with the family for a time to lighten her duties and give her a social life again, Mumphy cannot separate her concerns from her children’s: “She works eighteen-hour days nursing her three sons,” Terpstra says, “who are diminishing under her hands. She cannot turn off, cannot readjust her focus.” Boss’s devotion to his sons constantly does battle with the pain of seeing them suffer-or so his son-in-law shows us through Boss’s continuous modifications of the house to render it more suited to the brothers’ physical needs, even as he employs various escape tactics. A phrase the author discovers scribbled absentmindedly on a scrap of paper by Mumphy perhaps best defines her and her husband’s outlook: “Their hearts were light,” she writes of her sons, “and we tried to live as normal a life as possible.”
Not surprisingly, each of the young men is also given the opportunity to speak. In Terpstra’s rendering, “the boys” become three vivacious individuals, even while existing in what others might see as a condition of confinement and hopelessness. Included is Eric’s amusing biography of his alter-ego, “Ike White” (the tale is one of stupendous academic and athletic achievements, as dictated to the attending Terpstra in the aftermath of the first of the brothers’ deaths), along with Paul’s meticulously maintained logs of daily events: “10. 1:50 to 2:10 M.A. trimmed John’s beautiful locks of hair 11. Had my treatment from 2:05 to 2:35. I had it longer because of extra phlegm.” Neil, as the eldest of the three, is supposed to show what will soon happen to the younger two; it is one of the book’s-one of life’s-curious twists that he endures longer than the others, and is put in the same unnatural position as that of Boss and Mumphy, of the parent outliving the child.
It is important to note that Terpstra does not allow his book to be filled with romanticisations. Just as he protests against strangers’ simplistic summations of the family situation as being tragic or a “shame”, so too does he refuse to render his characters caricatures by treading too delicately and superficially on the past. The brothers’ separate foibles are laid bare, as are their parents’; guilt, we are told, was felt by both the ailing and the caregiver (categories that blur as the narrative progresses). Terpstra does not spare himself from criticism, either, admitting that only now, more than two decades after their deaths, can he begin The Boys, a project that he still doubts can even come “near to describing their experience.” The reader is not so persuaded of his shortcomings. Terpstra draws on his acclaimed abilities as poet (his last book of poetry, Disarmament, was a finalist for the 2004 Governor General’s Literary Awards) to present a multifaceted story that operates like memory itself-a series of linked, image-rich passages with enduring potency. For this reader, one such souvenir is a vision of the brothers at the centre of-and playfully orchestrating-a complex hive of communal activity. By making his story one of survival more than of death, Terpstra succeeds in honouring his brothers:
“There was nothing lovely in their disease . . .
Yet a loveliness of spirit and flesh was upon them.
There was nothing desirable in what their disease did
to their lives.
Yet their lives attracted."
"And no matter what anyone may think, a household that revolves around the care and comfort of three young men in wheelchairs, in bed, is not a horror.”
Andrea Belcham (Books in Canada)
Review
“Terpstra offers no facile answers, but in his scrupulous description of the workings of the household, one that revolves around the constant care and comfort of the three boys in wheelchairs, he challenges our habitual ways of viewing terminal disease…. ‘It’s better this way’ is the predictable refrain, but now Terpstra has succeeded in making us feel the speciousness of the words. We have grown attached to the boys, (who are genuinely funny), and the sorrow of their passing is forcefully evoked.” Erik Rutherford, Quill & Quire
“…as much as anything, the book is what all writing that rises to the call of literature is – a sputtering, soaring, aching, confused and triumphant attempt to understand the operating instructions on how to be a human being.” Jeff Mahoney, The Hamilton Spectator
“…Terpstra creates a terse, tense, touching compression – very much the way he sees the brothers turning events over and over again in their conversation, like jewels. ‘The cut is always the same but the light it refracts may change.’” Keith Garebian, Globe & Mail
Product Description
“I would not have wanted not to know you exactly as you were. I would not like to lose even a moment of your slow decline.”
From acclaimed author John Terpstra comes the story of his wife’s family and the short lives of her three brothers, each of whom lived with muscular dystrophy until their early twenties. With humour, reverence and great love, Terpstra charts the experience of a family under unusual, but resoundingly human, circumstances. He recreates the daily life, the vitality and wit shared by the three boys, and his relationships with them as they entered the final stages of their illness. Above all, he underlines the privilege of spending time with each of them – Neil, Paul and Eric – coming to know their persistence as individuals, their collective brand of humour and the force field of their personalities in unison.
Terpstra recounts the habits, the gentle rituals and oddities of living in the boys’ realm: their shared passion for sports, their penchant for nicknames, their records and correspondence, and the steady flow of friends, family and caregivers who participated in their lives. Many times along the way, convictions are checked, challenged and rechecked, faith upended and restored, and perceptions of illness, disability and quality of life vigorously shaken.
The Boys honours the last year in the lives of three brothers whose days could never rightly be called wasted or tragic, but whose time on earth was all too brief. Terpstra celebrates life and challenges the brackets we place around lives characterized by illness. He centres the mechanics of the boys’ physical presence within the geography of their home and community. The Boys is also a gradual examination of storytelling, of the ownership of stories, of where stories effectively begin and whether they ever end.
“I have made a heap of all that I could find…” says Terpstra, “the stuff kept in trunks and boxes; loose photos and albums, a diary, keepsakes, the written notes. What remained, materially, of their lives. Can art be made from terminal disease? After all these years the narrative of their lives had distilled into key moments and events, I would like to say, but it was really in the putting-together and spelling out in words of insignificant and mundane moments and events that their various lights began to shine. I was also thinking about St. Augustine, and the brief, numbered chapters of his Confessions. I thought, at first, that each of the chapters should be addressed directly to God, as they are in that book, because then the big why of the family’s story could stay front and centre the whole time. It seemed appropriate. Except that the big why never dominated the story as it originally unfolded, and was not doing so as the story unfolded before me. Scrap St. Augustine. With their lives these brothers who had no future raised life high; in their daily routines, routine itself became holy. Can art be made from terminal disease? I took my cue from them.”
This book is a smyth-sewn paperback bound in card stock with a letterpress-printed jacket. The text was typeset by Andrew Steeves in Fred Smeijer’s Quadraat and Quadraat Sans, and printed offset on laid paper.
About the Author
John Terpstra has published seven books of poetry, the most recent of which, Disarmament (GP, 2003), was shortlisted for the Governor General’s Literary Award in 2004. He has also published two prose projects: Falling Into Place (GP, 2002), is a creative investigation of the Iroquois Bar – a giant glacial sandbar which lies beneath one of Canada’s busiest transportation corridors, The Boys (GP, 2005) tells the story of his wife’s three brothers, who lived with muscular dystrophy until their early twenties. John Terpstra lives in Hamilton, Ontario.
