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Being the monster: women’s narratives of body and self after treatment for breast cancer
  1. L Rosenblatt
  1. Correspondence to:
 L Rosenblatt
 Harvard Medical School, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 44 Binney St SW 411, Boston, MA 02115, USA; Laurie_Rosenblatt{at}dfci.harvard.edu; larosenbl{at}yahoo.com

Abstract

Serious illness and its treatment frequently changes a woman’s sense of herself and her body. Narrative medicine posits that individuals permitted to tell their stories regain control over the plotline of the illness, reclaim the central role as protagonist, and thus diminish the sense of helplessness, marginalisation, and isolation that are inevitable aspects of serious disease. The women presented here speak about losses that occur during treatment for advanced cancer. These losses include: loss of the former body; loss of one or both breasts; loss of hair; loss of fertility, and changes in weight, energy, and sexuality. This paper will not review the medical literature on the psychological aspects of change in appearance secondary to disease and/or treatment. As a way of broadening our understanding of what women attempt to communicate to their care providers about who they are and who they are becoming through the experience of illness, this paper will present brief excerpts from the interviews of four women talking about issues of identity and bodily change, using concepts of feminine identity developed by the French psychoanalytic theorist Hélène Cixous in her essay, The laugh of the Medusa.

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When a person undergoing self (body) changing illness and treatment is permitted to tell her story, it allows her to regain control over the plot of the illness, to reclaim the central role as protagonist, and thus to diminish the sense of helplessness and marginalisation that are inevitable aspects of serious disease.

Hélène Cixous focuses on the general alienation from their bodies of women (even healthy women) in her essay, The laugh of the Medusa, Helen Cixous focuses on the general alienation of women from their bodies:

Where is the ebullient, infinite woman who, immersed as she was in her naivete, kept in the dark about herself, led into self-distain by the great arm of parental-conjugal phallocentrism, hasn’t been ashamed of her strength? Who…hasn’t accused herself of being a monster?1

With this in mind, my colleague, Victoria Alexander, and I interviewed 11 women with advanced breast cancer who had been treated with chemotherapy, radiation therapy, and mastectomy at the Dana-Farber Cancer Institute in Boston.i In order to allow the women the greatest freedom in recounting their thoughts and experiences, we chose an unstructured approach to these audiotaped interviews. Using methods outlined by Reissmann,2 we examined and reported elsewhere on structure and thematic content of their stories as a way of trying to understand how these women make sense of and accommodate the physical and psychic losses associated with treatment.3

There is a large literature on the subjective experience of illness. Autobiographies describe the ways in which serious illness alters one’s life and identity.4–8 In addition, these alterations have been addressed in a professional literature that connects the disciplines of anthropology, medical sociology, and psychology.9–16 Literary theory has recently been brought to bear on this subject as well.17–20

Disruption between the body and the self is a major theme in the stories women tell. They speak about loss of the former body; loss of one or both breasts; loss of hair; loss of fertility; and the changes in weight, energy, and sexuality. This paper will not review the medical literature on the psychological aspects of changes in appearance secondary to disease and/or treatment. Here I will discuss brief excerpts from the interviews of four women talking about issues representative of our sample.3 I will also use some of Cixous’s concepts of feminine identity in her essay, The Laugh of the Medusa, as a way of broadening our understanding of what women tell us as they attempt to communicate with their care providers about who they are and who they are becoming through the experience of illness.1 The excerpts from the interviews are not paraphrased, but are direct transcriptions of women speaking.

Hélène Cixous’s writings evolve from poststructuralist psychoanalytic feminist theory1,21 to her own practice of écriture feminine22 with its associational and poetic style. For Cixous “Masculine” and “ Feminine” is not about woman or man, rather it is about “woman” or “man”, the Feminine or Masculine as subject position from which we experience and write about the world. Therefore, a biological woman can write, speak, and experience in the masculine style at different times or for certain purposes (as I am doing here). Likewise, a biologically male person can oscillate between “Masculine” and “Feminine” modes of being. An example of a man practising écriture feminine might be Paul Monette in his poem, Current Status 1/22/87:

…to put it quite simply I’M DOING FINEor as we say in California DOING GREATholding a shiv to the listener’s throat as ifto dare contradiction the test-giversbald numerologists and milligram chemistsall my tribe of shamans and not a one knowsthe iron tests I watched you suffer the sixspinals three broncs your bone marrow sipped bya ten-inch needle till you had enough numbersto stump an algebra class pyramided likea Mayan calendar exact to the second fora thousand years by which time the last Mayansstared out of stone eyes at the blue monkeys…23

In this example, Monette writes in a poetic, associational (irrational), relatively non-hierarchic (non-phallic) style characterised by limited punctuation, inconsistent use of capitalisation, and non-standard syntax. Or, as Cixous describes the practitioners of écriture feminine: “They…take pleasure in jumbling the order of space, in disorienting it, in changing around the furniture, dislocating things and values, breaking them all up, emptying structures…1

Cixous is interested in positing the Feminine in binary opposition to the Masculine, and examining then deconstructing other binaries that reinforce and uphold that opposition: presence/absence, rational/irrational, moral/immoral, light/dark, life/death, good/evil, etc.24 Western culture, in Cixous’s view, sets out to suppress and exclude the Feminine denominator (irrational, dark, death, lack, absence, spending) positing them as disruptive or destructive of the Masculine order. Hence “woman” and the “feminine” are constituted as otherness, as non-being, as something outside of consciousness and rationality, and dangerous to those categories. The masculine defines the feminine as monstrous: non-linear, intuitive, messy, and poetic. After unpacking the bag of the “monstrous”, Cixous finds that in Medusa (with her capacity to harden men) resides a symbol of feminine power—a fearful familiarity with the unsaid and the imperfect. Cixous then suggests that women acknowledge this power within themselves, embrace it and make Medusa’s grimace turn to a laugh. Cixous does not argue for a completely irrational approach to life, but rather notes that exclusion of the Feminine severely limits our capacity fully to function within the world.

NARRATIVE 1

Beatrice, a mother of three in her late fifties, tells this narrative about a vacation she took in Cannes with her husband and children:

Cannes was just as beautiful as ever. I was just happy. I went for a walk with my husband. My husband was tremendously good and nice to me during the whole ordeal. You know that in Europe, women go topless still.—I did have a bikini, because at the time of my mastectomy, they put in a silicone implant. It was in me I hated it. It was a foreign object; it was hard.—So, we were walking down the beach, and he was holding my hand. I saw him looking at the young topless women. He did not want to look at them alone, because he felt that, for some reason, this would be an invasion. He thought if we were holding hands, he could look at them, but frankly, I wished he was looking at them and not telling me. But this is a man. He thinks he’s faithful to me. There are times when you just don’t want honesty. So I did not say anything, but I was really, really hurt. I felt my handicap. I felt my mutilation. I did not feel like a sexy woman. I don’t think, ever since my mastectomy, I felt very sexy. But anyway, that was the only painful part I remember, back in Cannes, but I just love that place.3

In Cannes, a place where Beatrice previously felt whole, she reaches for a sense of renewal, a return. But the structure of the story is telling. Beginning as a fairytale, this narrative quickly turns into a story about a spoiled Eden. Beatrice now feels mutilated and fallen. The concluding sentence is a jarring return to the idealised existence that the opening sentence had promised but the narrative did not deliver.

The embedded account of the breast implant is an eddy in the flow of the narrative. She says, They put in a silicone implant and I hated it. Although Beatrice invited the surgical modification, she feels betrayed by it. Beatrice hated the implant and felt [her] handicap; she is convinced of her inability to recapture sexual interest and feels unable to reclaim her body for herself—as herself. The mutilated body she imagines reflected in the eyes of others alienates her from her sexuality, from her desire, from her connection to her woman’s body. This eddy in the narrative stream foreshadows the sense of mutilation—the real punchline—as she struggles to accommodate the failure of medical care to deliver restitution, and searches for other sources of intactness in the face of profound bodily changes brought about by both the disease and its treatment.

Later in the interview she spoke more about the implant:

…later, I had the whole thing out [and had a reconstruction]. But although I had a huge scar on my back, suddenly I had the shape of a woman, and that gave me– I don’t think I have too much vanity, but for me, it’s very important that I feel my self. I don’t have a good self image now, because I don’t have eyebrows, eyelashes. I hate this wig. But the minute I come back to feel and look what I’m supposed to look, or think I’m supposed to look, I gain back a lot of self confidence. And that plastic surgeon was a very, very nice man. I liked to go to him. He offered—There were a couple of things. He also said I could have a double mastectomy, because he always knew that the biggest threat was cancer. But for me, fighting cancer was also wanting breasts, wanting my whole self back.3

Beatrice begins to reclaim her body and through her body, to reclaim herself. She struggles to redefine herself as a woman, in Cixous’s words, “capable of losing a part of herself without losing her integrity”.1 She notes that she cannot feel herself without her eyebrows, eyelashes, and the shape of a woman. And she draws the line before the statistics and techniques that suggest it would be safest to remove both breasts. Beatrice takes the initial steps that will dissect her expectations that the female body be a fetish for others away from her self identity as a woman in this scarred body. She begins to resist the command: “Hold still, we’re going to do your portrait, so that you can begin looking like it right away”.

NARRATIVE 2

Susannah, an architect in her 40s, addresses the question of wholeness in a different way. As she talks about losing her breast, she says:

It was very painful, and it was sad. It was sad to lose a piece of your body—a piece of my body, and it wasn’t just because it was a breast, but it was a part of my body. A lot of people would say, “Well, it’s just your breast.” What kind of cockamamie comment that is, I don’t know. I would just think about, oh, it was there, now it’s not. Like, where did it go? I called up my surgeon and said, “What did you do with it?” She said, “Well, we froze it.” And I said, “Oh, well, if you were going to throw it away, I’d want it.” I was thinking I would have a little burial for it in the backyard. But I just wanted to make sure that they didn’t throw it away. I’m still sad about it.3

For Susannah, the mastectomy is at once an experience of loss and of locating herself in her body. Frank writes about this as the question of “body relatedness”—in essence asking, “Do I have a body, or am I a body?”25 Susannah switches pronouns—from “your body” to “my body”—reflecting the empathic/loosely boundaried position of women in the field of self, body, and sexuality. Is it my breast or her breast we speak of at this moment in the interview? As we talk sitting face to face, the loss of her breast is also the potential loss of my breast. The lost breast becomes, in Cixous’s words, “the uncanny stranger on display”—objectified and disowned, passed like a hot potato between us. Susannah begins to overcome alienation from her single breasted body by claiming her lost breast as, “a piece of my body”. Thus, she struggles to reclaim her body while acknowledging its changed status. Susannah articulates the internalised phallic voice when she says: “Well, it’s just your breast”. She then argues against that voice and claims her loss, rage, and sadness along with a continued connection to, and identification with, her severed breast.

She goes on to reflect:

I think the first time I really felt that I was all one piece was after I had my mastectomy. I realised that I’m in my body, that I am my body, it was the weirdest—I had to sit down. I was like, holy shit! I think I felt that more and more over time in this whole situation, but that was really the first time I ever felt that, that I realised my body had more of a say than maybe I wanted to give it credit for.3

Physical and emotional loss brings Susannah to an identification of her body with herself. The mastectomy activates a question about the nature of self in relation to body. Is she the person she was before she was sick, or is she just parts of a body? In what ways does the amputation feel imposed and in what ways chosen? Susannah speaks of the paradox of women’s bodies. Always belonging to others (lovers, doctors, children) the body fragments into parts desired, admired, admonished—assessed by others. So, paradoxically, when healthy and whole, Susannah has no body, its parts pulled apart by the demands, desires, and claims of others. She has been “turned away from her body”. For Susannah, a woman may only claim her body in a damaged condition, one that no longer attracts.

The stories that Beatrice and Susannah tell show how profound are the repercussions of bodily transformation for the sense of self. Laura, a 55 year old writer, reveals a woman’s ambivalence toward the masculine gaze. She describes the ways in which that gaze can provide hope, solace, and healing as she talks about a letter she receives that activates the complex interplay between the truth of her mirror and the mirror of her lover.

He wrote to me and said that pretty soon my hair will return. He said he pictures me on the sailboat, and my hair will be blowing in the wind like the spinnaker. I had to smile at that, but, it’s so amazing, I’ve been going back to that image, because he gave it to me and I like to dream his dream. That’s not me now, but it’s really me. This comes from a man who has seen me at my worst—hairless, everything gone. I’ve lost all my…image, my womanness, my humanity…my everything. He was the one who reached out for me.I started to write about this image of myself, on the boat with the silly hair. But I figured it’s a more real place for me than my bathroom mirror. His image makes me strong. It makes me…vibrant. It makes me…light. It makes me young. And I was miserable and hairless and ugly, yet he would reach me and be able to make me feel like a woman….And for me this is more real than this glass mirror, because here I get weak, here I get weepy, here there are times when I just get down.It’s not reality, but it’s stronger than reality…It’s real between us. I guess we are flesh, and we are also spirit and soul. I don’t think my spirit and my psyche are aging. My body gets older, but I don’t necessarily think in time per se. The days are repeating themselves, my body’s changing and getting older, but my psyche is constantly growing—or going somewhere. Even though now it’s very fragile.3

CONCLUSION

Attention to the full range of suffering brought on by illness demands a clinical approach that makes room for stories patients tell as a fundamental aspect of medical care, particularly the care of people who have suffered bodily changes that challenge the integrated sense of self. By listening to the life story, not just the medical story, clinicians can gain insight into the particular network of connections between physical and psychological suffering that exists for each person. Using Cixous’s thoughts on the interplay of the Masculine and the Feminine as subject positions from which people experience and describe the world, I have looked at excerpts from interviews with women living with advanced breast cancer and attempted to hear their voices in a way that deepens the understanding of the effects of illness on the story of the self.

I shall finish with a summarising comment taken from an interview with Lillith, a 44 year old dancer:

I somehow want a way to begin a conversation with doctors, because I do not understand this relationship and I do not understand the expectations. There’s an enormous gap between the doctor and the patient, and there’s a world of misunderstanding going on in the middle. So in the beginning it wasn’t my world, and I didn’t enter. I went into the alternative world, because that was my world. I mean, dancers don’t use doctors. You go to a doctor and they tell you, “Just stop dancing”. Excuse me. That’s my life.3

Acknowledgments

I’d like to acknowledge Victoria Alexander for performing two of the excerpted interviews used in this paper. Support for the research project that served as the raw material for this paper was provided by The Gillette Center for Women’s Cancer at Dana-Farber Cancer Institute and by a gift from the Rokoff Family.

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Footnotes

  • iThe women in our study ranged in age from 37 to 76. The interval between the initial diagnosis and the interview ranged from two to 20 years.

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