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Requiem for My Brother – Q&A

We three 1988
Your brother was not a famous man; why would we find his story compelling?
This is a story about the relationships of siblings and how our lifelong connections to one another are shaped when we are children. I was very lucky to have a strong relationship with my brother and sister, one that was still resilient and affectionate as adults. We enjoyed one another's company, had the same sense of humour, and although in some ways Dave and I were very different, we were able to connect on the important things.

So this is the story of a family, and everyone has a family. It's also a story about growing up in northern Canada and the power of landscape in memory. These are matters with which will resonate with readers.

We three 1998Why "a requiem?"
A requiem mass is part of several liturgies, usually sung first on the day of burial, to honor the person who has died and to ease the release of the soul. My family is not religious in the sense of being churchgoers, and my brother was emphatically not, but we all experience a profound and spiritual connection with the northern landscape.

The book is shaped by what we still call "Dave's Day," when my sister and I and our children traveled to Lake Beaverhouse, an important lake in our childhood, with Dave's ashes. So his burial day, and a meditation on that landscape and a celebration of his life.a secular requiem perhaps.

Is it a very sad story, something that readers would find unpleasant or difficult?
Oh, I hope not! It is sad, of course, because my brother really struggled with the infuriating disease that is MS, and he died and my sister and I miss him. But the book is also about the power of love and about the healing that landscape can effect. And for me the writing of the book was very much a restorative process, especially when I returned to northern Ontario, where the story began. The book follows the trajectory of a life and death, and ends on a higher or lighter note emotionally than where it begins.

I would say it is an intimate, personal story that invites readers to reflect on their own stories and feelings.

You say in the book that you dislike being described as Dave's "caregiver." Why don't you like that word; it sounds like a good thing!
I just wanted to be his sister, not his "caregiver." The word institutionalizes and upsets the balance in a sibling relationship. Dave was fiercely independent and the notion of being helpless, requiring someone to give care, was very difficult for him to accept and I wished to honour and respect his sense of himself.

During his interactions with the health care system, there were so many things that seemed inadequate or wrong and being a "caregiver" gave me an almost bureaucratic function in a system that I considered unsupportive. It was a code or a shortcut, a label that satisfied the hierarchical demands of health-care providers.

It's possible that my feeling about that word is a little irrational; I still feel strongly about it, five years after Dave's death.

In your "author's note" you talk about making your brother, who was in a wheelchair for the last four years of his life "visible." What do you mean by that?
I spent almost ten years helping Dave negotiate various pieces of the Canadian/Ontario healthcare system, everything from MS clinics to ERs, homecare, Wheeltrans and finally into cancer treatment and palliative care. Under any circumstances, this is a challenge, but everything is much, much harder for a man in a wheelchair. Hospitals are not well set up to deal with someone who has more than one healthcare issue, and there is a tendency to treat symptoms, not the whole person. Health care professionals often don't talk directly to people in wheelchairs. The simplest things do not happen simply for any ill person and all of the small difficulties are exacerbated for someone in a wheelchair. Sara and I felt we had to become rotweillers on his behalf.

But also outside the healthcare system, in daily life, on the street, in a bank or airport or on a ship, people do not see or hear disabled people. They are an invisible minority.

Did you have discomfort about writing in such great detail about a disabled person, when you yourself are not disabled?
Yes, I did. I am very conscious that my perspective is that of an outsider, in that I did not feel what my brother felt. I wrote about what I saw and felt and how Dave and I and our sister Sara worked together as he became increasingly disabled.

It's too easy for able-bodied people to not see the reality of other people's lives or to be ashamed of or disgusted by the loss of some bodily functions. Surely that goes part way to explain apathy in public policy on things like access, and the horrendous cost of essentials like wheelchairs and why it's often so difficult to find the small things that make the lives of people easier, and most importantly give them independence.

If some shoe manufacturer reads my book and decides to create a line of shoes and boots that are really easy for disabled people to put on and take off, I will feel vindicated!

There have been a number of books recently about death and dying, the Tuesday with Morley stories, Joan Didion's book about the death of her husband (The Year of Magical Thinking). Why has this become such a subject of interest?
A generation or so ago, most people died of old age in their own homes. In our lifetime, the end of life has become a highly medicated, technologically managed, institutionalized event. Because it is possible to keep people alive in ways that were unimaginable a few decades ago, individuals and families are required to make very difficult ethical choices. And at the same time, ironically, it seems that more and more people are dying before the end of what we might consider a natural life span, from impossibly complex diseases.

So death has become very much part of life for the babyboomer generation and instinctively, I think, we want to reclaim it, humanize it, and to do so, we must understand it-death itself, what precedes it, and the grief that follows.

But we still do not talk easily about death. We fear the event itself and the feelings we might experience when it happens. Memoirs like Requiem for My Brother, or The Year of Magical Thinking speak directly about some of the most profound and intimate moments in life.

Why did you use a couple of lines of from Neil Young's Helpless at the beginning of your book?
Dave loved Neil Young. Like most people who grew up in the 60s and come from northern Ontario, we believed absolutely that his town in north Ontario was our town. Well, we thought it was Swastika, on the other side of Kirkland Lake from Dobie, where we grew up. And yes, all of our changes were there.

Those lines say everything to me about the things that we loved together-granite, lakes and rivers, the bush-and how those elements hold the memories of our childhood and turn sorrow into serenity, even joy.

Where to buy the book