Introduction

1

Each woman responds to the crisis that breast cancer brings to her life out of a whole pattern, which is the design of who she is and how her life has been lived. The weave of her every day existence is the training ground for how she handles crisis. Some women obscure their painful feelings surrounding mastectomy with a blanket of business-as-usual, thus keeping those feelings forever under cover, but expressed elsewhere. For some women, in a valiant effort not to be seen as merely victims, this means an insistence that no such feelings exist and that nothing much has occurred. For some women it means the warrior’s painstaking examination of yet another weapon, unwanted but useful.

I am a post-mastectomy woman who believes our feelings need voice in order to be recognized, respected, and of use.

I do not wish my anger and pain and fear about cancer to fossilize into yet another silence, nor to rob me of whatever strength can lie at the core of this experience, openly acknowledged and examined. For other women of all ages, colors, and sexual identities who recognize that imposed silence about any area of our lives is a tool for separation and powerlessness, and for myself, I have tried to voice some of my feelings and thoughts about the travesty of prosthesis, the pain of amputation, the function of cancer in a profit economy, my confrontation with mortality, the strength of women loving, and the power and rewards of self-conscious living.

Breast cancer and mastectomy are not unique experiences, but ones shared by thousands of american women. Each of these women has a particular voice to be raised in what must become a female outcry against all preventable cancers, as well as against the secret fears that allow those cancers to flourish. May these words serve as encouragement for other women to speak and to act out of our experiences with cancer and with other threats of death, for silence has never brought us anything of worth. Most of all, may these words underline the possibilities of self-healing and the richness of living for all women.

There is a commonality of isolation and painful reassessment which is shared by all women with breast cancer, whether this commonality is recognized or not. It is not my intention to judge the woman who has chosen the path of prosthesis, of silence and invisibility, the woman who wishes to be ‘the same as before.’ She has survived on another kind of courage, and she is not alone. Each of us struggles daily with the pressures of conformity and the loneliness of difference from which those choices seem to offer escape. I only know that those choices do not work for me, nor for other women who, not without fear, have survived cancer by scrutinizing its meaning within our lives, and by attempting to integrate this crisis into useful strengths for change.

2

These selected journal entries, which begin 6 months after my modified radical mastectomy for breast cancer and extend beyond the completion of the essays in this book, exemplify the process of integrating this crisis into my life.

1/26/79

I’m not feeling very hopeful these days, about selfhood or anything else. I handle the outward motions of each day while pain fills me like a puspocket and every touch threatens to breach the taut membrane that keeps it from flowing through and poisoning my whole existence. Sometimes despair sweeps across my consciousness like luna winds across a barren moonscape. Ironshod horses rage back and forth over every nerve. Oh Seboulisa ma, help me remember what I have paid so much to learn. I could die of difference, or live—myriad selves.

2/5/79

The terrible thing is that nothing goes past me these days, nothing. Each horror remains like a steel vise in my flesh, another magnet to the flame. Buster has joined the rolecall of useless wasteful deaths of young Black people; in the gallery today everywhere ugly images of women offering up distorted bodies for whatever fantasy passes in the name of male art. Gargoyles of pleasure. Beautiful laughing Buster, shot down in a hallway for ninety cents. Shall I unlearn that tongue in which my curse is written?

3/1/79

It is such an effort to find decent food in this place, not to just give up and eat the old poison. But I must tend my body with at least as much care as I tend the compost, particularly now when it seems so beside the point. Is this pain and despair that surround me a result of cancer, or has it just been released by cancer? I feel so unequal to what I always handled before, the abominations outside that echo the pain within. And yes I am completely self referenced right now because it is the only translation I can trust, and I do believe not until every woman traces her weave back strand by bloody self-referenced strand, will we begin to alter the whole pattern.

4/16/79

The enormity of our task, to turn the world around. It feels like turning my life around, inside out. If I can look directly at my life and my death without flinching I know there is nothing they can ever do to me again. I must be content to see how really little I can do and still do it with an open heart. I can never accept this, like I can’t accept that turning my life around is so hard, eating differently, sleeping differently, moving differently, being differently. Like Martha said, I want the old me, bad as before.

4/22/79

I must let this pain flow through me and pass on. If I resist or try to stop it, it will detonate inside me, shatter me, splatter my pieces against every wall and person that I touch.

5/1/79

Spring comes, and still I feel despair like a pale cloud waiting to consume me, engulf me like another cancer, swallow me into immobility, metabolize me into cells of itself; my body, a barometer. I need to remind myself of the joy, the lightness, the laughter so vital to my living and my health. Otherwise, the other will always be waiting to eat me up into despair again. And that means destruction. I don’t know how, but it does.

9/79

There is no room around me in which to be still, to examine and explore what pain is mine alone—no device to separate my struggle within from my fury at the outside world’s viciousness, the stupid brutal lack of consciousness or concern that passes for the way things are. The arrogant blindness of comfortable white women. What is this work all for? What does it matter whether I ever speak again or not? I try. The blood of black women sloshes from coast to coast and Daly says race is of no concern to women. So that means we are either immortal or born to die and no note taken, un-women.

10/3/79

I don’t feel like being strong, but do I have a choice? It hurts when even my sisters look at me in the street with cold and silent eyes. I am defined as other in every group I’m a part of. The outsider, both strength and weakness. Yet without community there is certainly no liberation, no future, only the most vulnerable and temporary armistice between me and my oppression.

11/19/79

I want to write rage but all that comes is sadness. We have been sad long enough to make this earth either weep or grow fertile. I am an anachronism, a sport, like the bee that was never meant to fly. Science said so. I am not supposed to exist. I carry death around in my body like a condemnation. But I do live. The bee flies. There must be some way to integrate death into living, neither ignoring it nor giving in to it.

1/1/80

Faith is the last day of Kwanza, and the name of the war against despair, the battle I fight daily. I become better at it. I want to write about that battle, the skirmishes, the losses, the small yet so important victories that make the sweetness of my life.

1/20/80

The novel is finished at last. It has been a lifeline. I do not have to win in order to know my dreams are valid, I only have to believe in a process of which I am a part. My work kept me alive this past year, my work and the love of women. They are inseparable from each other. In the recognition of the existence of love lies the answer to despair. Work is that recognition given voice and name.

2/18/80

I am 46 years living today and very pleased to be alive, very glad and very happy. Fear and pain and despair do not disappear. They only become slowly less and less important. Although sometimes I still long for a simple orderly life with a hunger sharp as that sudden vegetarian hunger for meat.

4/6/80

Somedays, if bitterness were a whetstone, I could be sharp as grief.

5/30/80

Last spring was another piece of the fall and winter before, a progression from all the pain and sadness of that time, ruminated over. But somehow this summer which is almost upon me feels like a part of my future. Like a brand new time, and I’m pleased to know it, wherever it leads. I feel like another woman, de-chrysalised and become a broader, stretched-out me, strong and excited, a muscle flexed and honed for action.

6/20/80

I do not forget cancer for very long, ever. That keeps me armed and on my toes, but also with a slight background noise of fear. Carl Simonton’s book, Getting Well Again, has been really helpful to me, even though his smugness infuriates me sometimes. The visualizations and deep relaxing techniques that I learned from it help make me a less anxious person, which seems strange, because in other ways, I live with the constant fear of recurrence of another cancer. But fear and anxiety are not the same at all. One is an appropriate response to a real situation which I can accept and learn to work through just as I work through semi-blindness. But the other, anxiety, is an immobilizing yield to things that go bump in the night, a surrender to namelessness, formlessness, voicelessness, and silence.

7/10/80

I dreamt I had begun training to change my life, with a teacher who is very shadowy. I was not attending classes, but I was going to learn how to change my whole life, live differently, do everything in a new and different way. I didn’t really understand, but I trusted this shadowy teacher. Another young woman who was there told me she was taking a course in “language crazure,” the opposite of discrazure (the cracking and wearing away of rock). I thought it would be very exciting to study the formation and crack and composure of words, so I told my teacher I wanted to take that course. My teacher said okay, but it wasn’t going to help me any because I had to learn something else, and I wouldn’t get anything new from that class. I replied maybe not, but even though I knew all about rocks, for instance, I still liked studying their composition, and giving a name to the different ingredients of which they were made. It’s very exciting to think of me being all the people in this dream.

3

I have learned much in the 18 months since my mastectomy. My visions of a future I can create have been honed by the lessons of my limitations. Now I wish to give form with honesty and precision to the pain faith labor and loving which this period of my life has translated into strength for me.

Sometimes fear stalks me like another malignancy, sapping energy and power and attention from my work. A cold becomes sinister; a cough, lung cancer; a bruise, leukemia. Those fears are most powerful when they are not given voice, and close upon their heels comes the fury that I cannot shake them. I am learning to live beyond fear by living through it, and in the process learning to turn fury at my own limitations into some more creative energy. I realize that if I wait until I am no longer afraid to act, write, speak, be, I’ll be sending messages on a Ouija board, cryptic complaints from the other side. When 1 dare to be powerful, to use my strength in the service of my vision, then it becomes less important whether or not I am unafraid.

As women we were raised to fear. If I cannot banish fear completely, I can learn to count with it less. For then fear becomes not a tyrant against which I waste my energy fighting, but a companion, not particularly desirable, yet one whose knowledge can be useful.

I write so much here about fear because in shaping this introduction to The Cancer Journals, I found fear laid across my hands like a steel bar. When I tried to reexamine the 18 months since my mastectomy, some of what I touched was molten despair and waves of mourning—for my lost breast, for time, for the luxury of false power. Not only were these emotions difficult and painful to relive, but they were entwined with the terror that if I opened myself once again to scrutiny, to feeling the pain of loss, of despair, of victories too minor in my eyes to rejoice over, then I might also open myself again to disease. I had to remind myself that I had lived through it all, already. I had known the pain, and survived it. It only remained for me to give it voice, to share it for use, that the pain not be wasted.

Living a self-conscious life, under the pressure of time, I work with the consciousness of death at my shoulder, not constantly, but often enough to leave a mark upon all of my life’s decisions and actions. And it does not matter whether this death comes next week or thirty years from now; this consciousness gives my life another breadth. It helps shape the words I speak, the ways I love, my politic of action, the strength of my vision and purpose, the depth of my appreciation of living.

I would lie if I did not also speak of loss. Any amputation is a physical and psychic reality that must be integrated into a new sense of self. The absence of my breast is a recurrent sadness, but certainly not one that dominates my life. I miss it, sometimes piercingly. When other one-breasted women hide behind the mask of prosthesis or the dangerous fantasy of reconstruction, I find little support in the broader female environment for my rejection of what feels like a cosmetic sham. But I believe that socially sanctioned prosthesis is merely another way of keeping women with breast cancer silent and separate from each other. For instance, what would happen if an army of one-breasted women descended upon Congress and demanded that the use of carcinogenic, fat-stored hormones in beef-feed be outlawed?

The lessons of the past 18 months have been many: How do I provide myself with the best physical and psychic nourishment to repair past, and minimize future damage to my body? How do I give voice to my quests so that other women can take what they need from my experiences? How do my experiences with cancer fit into the larger tapestry of my work as a Black woman, into the history of all women? And most of all, how do I fight the despair born of fear and anger and powerlessness which is my greatest internal enemy?

I have found that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces aligned against us. It means teaching, surviving and fighting with the most important resource I have, myself, and taking joy in that battle. It means, for me, recognizing the enemy outside, and the enemy within, and knowing that my work is part of a continuum of women’s work, of reclaiming this earth and our power, and knowing that this work did not begin with my birth nor will it end with my death. And it means knowing that within this continuum, my life and my love and my work has particular power and meaning relative to others.

It means trout fishing on the Missisquoi River at dawn and tasting the green silence, and knowing that this beauty too is mine forever.

29 August 1980