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The story of how this book came to be written is tied up with the loss of story and of voice—my own, my mother’s, and that of the mothers living with cancer whose stories fill the book.

Every life has a theme, a characteristic melody that runs through the years and etches into them its individual pattern, style and perspective. The abiding theme and passion of both my professional and personal life has been mothering—its value and meaning, challenge and opportunity in contemporary culture.

For twenty years I was a researcher, writer and consultant specializing in family health. My particular interest was in maternal mental health, especially in how to provide care for the caregiver who, in most families, is still a woman. I had worked on behalf of pregnant and postpartum mothers, mothers who abuse children, mothers who abuse themselves with substances, mothers who were economically and nutritionally impoverished. I was especially drawn to difficult issues that were stigmatized, silenced.

Theoretically, it was not a great stretch from mental health challenges to medical ones like cancer, or from the wonder of birth to the mystery of death. But most of us do not go willingly into the land of the ill and the dying, and I was no exception.

I did not have a life-threatening illness while raising my daughter, but when she was 17 years old, I developed a condition that threatened my way of life and sense of myself. An inoperable back injury led to three years of disability and uncertainty about whether I would walk again. During that time I lost my employment, my mother died, and my daughter graduated high school and left home. My world collapsed along with my spine. For consolation and inspiration I turned to the stories of others who had lived through serious illness. And I began to reconstruct my own narrative.

Sometimes I think that writing this book began when I was a child, trying to understand why my mother was so sad and so sick, why no one talked about it, least of all she. My mother had been ill and depressed through much of my life. Fearing I would become like her, I put as much distance as possible between the two of us. I never asked her the questions that would have allowed me to understand her—and myself. My mother died before I could know her story or see her as a full human being. It was the hardest part of my grief.

Sometimes I think this book began twenty years ago, when I was writing a different book about the self-development of mothers while raising my own small child. When my daughter was eight, a difficult divorce left me wounded and impotent in my mothering and rendered me, a writer, voiceless. Forced to surrender to the economic and emotional realities of single parenthood, I buried my book, along with my dreams of being a writer. Although I slowly built back my life, I continued to live with deep grief and guilt. The wounds stayed hidden until my body rebelled, the same year my daughter was poised for college, no longer needing me in the same way.

And sometimes I think the book began with my back injury, which led to the development of the Mothers’ Living Stories Project. Before, I had avoided the ill and disabled, fearing their shadow world of limitation and invisibility. Illness changed me. I saw what living in chronic pain and isolation can do to a person, how terrifying dependency is. But I also learned how a life-altering illness can catalyze positive life changes.

Confined to home and often to bed, it is still possible to travel vertically, up into spirit life, down into soul life. Forced to slow down, I saw how stale my work as a researcher had become. I had been living the wrong life but didn’t know how to alter it. Slowly, I started listening to my inner voice, my dreams. Without realizing what I was doing, I conducted a life review that allowed me to recognize and reclaim my natural gifts and deepest longings. I began to develop a side of myself that had been clamoring for attention.

The sages tell us that spirit can be crushed but the soul is indestructible. I had long since put away my dancing shoes, paint brushes and song charts but was never without pen and paper. When I was able to stand or recline without pain, I reinstated my writing practice. Every day I would pray for healing, promising that if I was fortunate enough to walk again, I would devote a period of my life to bring healing to others.

As I lay in bed questioning everything, I began to wonder what it must be like for women with younger children and far more serious diseases like cancer. If, as Joan Didion writes, “We tell ourselves stories in order to live,” I wanted to understand what stories these mothers were telling themselves. How do women in the prime of life go on living and loving with broken hearts and shattered illusions? How do they reconstruct and heal their lives after trauma?

I fully expected to find academic studies, popular books, resources and services, but what I found was a vacuum and the silence of mothers’ voices. How strange, I thought. I knew that children would be the most relevant factor in their mothers’ treatment decisions and could have a profound effect on their will to live and medical outcomes. I could hardly imagine any group more in need of attention and support than seriously ill mothers struggling to raise their children.

When my back recovered, I invited two colleagues to help me convene focus groups of mothers living with breast cancer around the San Francisco Bay Area. Holding the groups was life-altering, for the mothers and myself. As I had expected, the mothers had found neither services nor literature specific to their needs. Additionally they did not feel seen, and had found few opportunities to be heard, as mothers, whether by friends, physicians or representatives of organizations serving the ill. One mother said, “I just wish there were more people who would listen to us when we’re hurting inside.”

In 1995, I founded the Mothers’ Living Stories Project to address this need. First by myself, then with a group of volunteer listeners who I trained, we began to help mothers living with cancer to review their lives and audiorecord legacies for their children. Story is at the heart of our work because I am convinced of its healing power. “All suffering is bearable,” said Isak Dinesen, “if it is seen as part of a story.”

Listening to the mothers, it became evident that their stories were extraordinary and important, and not only for their children. The mothers themselves wanted to be acknowledged outside the cancer circle, to be seen as alive as long as they’re alive. They were passionate about offering their experiences to help other parents living with illness. And they wanted to have books that would speak to their needs: “I just want to read about other moms. Just to read about other moms honestly."

I found myself the appointed messenger, for the mothers’ sake and for my own. In a sense, the Project was my own narrative, one I had constructed to answer the profound questions of meaning, identity and purpose that had been raised during my illness. I felt that listening to the mothers and being a midwife to their stories was the most valuable gift I could give.

But knowing that we can do something does not mean that should do it. Why are we drawn to the work that takes up most of our waking life? Sometimes it’s obvious—money or ambition or ego or status. Sometimes it’s the need for connection or community. Sometimes we’re pulled in by family tradition. And sometimes we are drawn by a call to which we must attend even if we don’t know why.

When I started listening to mothers, I did not know that I needed to do this work because I was searching for the story line and voice I had lost years earlier, because there was something I needed. In the eloquent words of Notzge Shange, “I was missing something, a laying on of hands, the holiness of my soul released.” The irony is that all the while I thought I was bringing healing to the mothers, they were laying hands on me.

There is an old story that before we are born, we know everything about our purpose here on earth. But an angel comes and presses the flesh under our nose and we forget. The task of living is to remember what we knew, which is why we sometimes sit with one finger thoughtfully placed on the cleft above our lips. Each of us has a destiny, something to learn, something to give, something to leave behind.

As I understand it today, my life has been a long journey to remember what I came here to do. Raising my daughter, creating the Project and working with the mothers, and writing a book about their experience has all been part of my evolving understanding. The book is the completion of the first draft of my life, the focus of which has been on mothering and service. In finishing this book and delivering it to the community, I have healed my own wounds of losing voice and losing my mother’s story, as well as the wounds of many mothers whose voices had been silenced for other reasons. In presenting the legacies of other mothers, I am leaving my own.

At least this is the story I am telling myself. But maybe my agreement with the angel is completely different, something far more humble. After all, what is more noble than the life of a mother who feeds her children each morning before undergoing chemotherapy so she can stay alive for them one more day?

Looking back on my life and these years of listening to mothers at the edge of existence, I realize that I know very little. I have come to think that purpose is something that continues to evolve throughout a life. Perhaps we can only understand our stories, and our reason for being here, in hindsight, at the end of life, and sometimes not even then. I have known mothers to die with great clarity and peace, as well as with great confusion and disturbance.

We begin in mystery and we end in mystery and in between we are often puzzles to ourselves. We hear the still, small voice and then lose it, over and over again. We try to understand what we came here to do and who we are to love during our allotted time. And we tell ourselves stories in order to make sense and meaning of all we encounter.

Perhaps purpose is not an intentional or goal-oriented thing, but a secret waiting to be discovered. Perhaps like all constructs that give meaning and shape to our lives, it is only a story, like the angel story. But during our lives our stories propel us forward. And after we’re gone, they become gifts and lessons to those we leave behind.

A mother once said, “There are tragic deaths, there are tragic lives, but death itself is not tragic.” Perhaps what’s tragic is never knowing our own stories, never finding our voice, never believing that someone wants to listen, and leaving this life without sharing what we’ve learned.

Above my writing desk are the names and photos of the mothers whose stories fill the book and visit my dreams, and one sentence, “Let us make this offering together.” Many of the women have died. I tell them that their voices will live on.