beware the grieving warrior

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by Larry Hicock

t's said that writers don't choose their stories. I can't say if this is true of all writers, and I don't believe it applies to all stories, but I can vouch for at least one case in point: This story chose me. The idea for this book came long after I'd met John and Brenda Lewis. It built up gradually as John began describing some of the experiences he and his family had been through and still were enduring. Some of his accounts were heartbreaking; others were infuriating. Some were intensely personal; others felt universal. Each incident seemed more compelling than the last. For me, the turning point came in February 2003, when John told me about something that was not only shocking but also downright astonishing (see chapter n). "You couldn't make this up if you tried," I remember telling him. "No, you couldn't," he said. "Nobody would believe you." The seed had been planted, and now it was firmly rooted: This was a story that needed to be written. I didn't think John could do it, but I knew that I could.AC0F613C-4633-4327-950C-1F6A4DC482E4

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BEWARE T H E G R I E V I N G W A R R I O R

, On Monday, October 15*, 2001, I returned to my home in Hamilton about seven o'clock after spending a long day in Toronto. I was barely in the door when my wife, Irene, told me that our thirteen-year-old daughter, Delaney, had come home from school that day with the saddest news she'd ever heard. Jesse Lewis, her classmate and close friend, had lost her little sister. Eleven-year-old Claire Lewis had gone into the hospital for surgery, but, as Delaney's teacher had told the class, something had gone terribly wrong, and Claire had died that morning. The same day, after school, Jesse had called Delaney. She'd told her about the funeral and asked if she would go to the first visitation, the next evening. I had met Jesse's parents only a few times, either at their house, when I went to collect Delaney after a party or sleepover, or at ours, when one of them came to pick up Jesse. And I had never met Claire, or even seen her, until that night at the funeral home. I wish I could say that I found something comforting to say to them, but I didn't. I stuttered and stammered and barely spoke two words. I don't think it really hit me until that moment, seeing the expression on their faces, how I would have felt if it had been my little girl lying there. Would I have been able to stand there, greeting people, acknowledging their heartfelt but awkward words and gestures, while she lay just steps away? I could not imagine getting through it. Irene and I did not see John and Brenda until four months later, at a parent meeting at one of the high schools we were

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FOREWORD

considering for our daughters for the coming year. We nodded hello in the hallway as we made our way into the auditorium, and after the meeting we exchanged a few brief words. We agreed that night that the four of us would get together. Over the next few weeks, I saw John a couple of times, again when I went to collect Delaney. "We should do something," I would say. "Yeah," he'd say, "we should." "Let me know," I would say. "Yeah, I will," he'd answer. I felt that he was sincere, that he did want to meet with us, but it was obvious that they simply weren't ready. We finally got a phone call from them in June. The school's closing ceremonies were coming up, and Brenda invited us to go out with them for dinner. We saw them a month later, once again at a restaurant, and this time, after dinner, they invited us back to their home for tea. One of the things we heard about that night was Revolution Hope, a trust fund set up in Claire's honour to raise money to support arts programs for underprivileged children. Not long after this visit, John invited us to attend one of the group's meetings, after which I became a member of the organizing committee. It felt good to do something that would enrich the lives of other children. I extended this line of thinking toward the business end of what I thought Revolution Hope needed to do in order to be successful. I emphasized that the most effective fund-raising campaigns focused on a positive, uplifting message. John agreed, but he seemed to be unable to separate Revolution Hope's goals from his own desire to effect change in the health care system. This could turn into

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BEWARE T H E G R I E V I N G WARRIOR

an unhealthy dichotomy, I argued: You can't raise money certainly not from big corporate donors and sponsors while at the same time expounding a controversial and emotionally charged social, legal, and political agenda. John conceded the point. He made a genuine and concerted effort to "stay on message" (a crass and mercenary phrase he picked up from me), but he simply couldn't do it. Ironically enough, neither could I. It was through those discussions how to pursue Revolution Hope's marketing goals while at the same time holding in check John's desire for radical, system-wide change that his sense of moral conviction won me over. I'd been affected by what I saw of the Lewis family's ordeal, but this was different: The more John related his experience to the larger picture, the more I came to appreciate the significance of his advocacy. Ultimately, that agenda John's mission would take priority over fund-raising. Revolution Hope would have to wait. Something had to be done to draw more attention to the cause of personal and organizational responsibility, not only for Claire's case but for all preventable deaths. Part of getting that message out changing the system, changing the attitudes of health care professionals, making people aware of the scale and urgency of medical errors would involve telling this family's sad and frightful tale. And that was the beginning of this story choosing me.

This book began as a solo project, but that plan broke down

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FOREWORD

the first time I met with John to record our first interview. He was forthright, articulate, and expressive not only intellectually but also emotionally. The same day he also gave me copies of his records letters, e-mails, medical documents, research papers together with some of his personal writing. The official material was impressive, but it was his own writing his poetry, his eulogy for Claire, and his journal that resonated. It was raw, unfiltered, straight from the heart. It was obvious that John's role in the book had to be larger, so John got another proposal from me: He would be not only a principal subject in the book but also a collaborator. From that point on, we worked as partners. Over the next two months, we recorded roughly fifteen more hours of conversation. In July, my family and I moved to Montreal, after which John and I remained in contact by phone and e-mail. When the book was commissioned and the writing proceeded in earnest, we corresponded and talked several times a week. That dialogue, together with excerpts from John's journals, forms the heart of this book, both literally and figuratively. I interviewed Brenda just after I started working with John and on two more occasions during the final stages of the writing. In the interim, we also corresponded frequently by e-mail. Brenda was less involved than John, but when we did talk she was every bit as candid; her perceptive comments and observations have been invaluable. Jesse also agreed to an interview. Like her parents, she too was honest and forthright, even in discussing her own emotional problems. Many others have contributed greatly to this story. Dr. Philip Hebert discussed his own dealings with John, pointed

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