“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.