WITNESSING WOMEN’S STORIES OF BREAST CANCER
As a narrative therapist, I have long been drawn to the stories people share with me. Of particular interest to me are the stories of women. Perhaps not very surprising as I am, by virtue of biology and gender identity, a woman. Also, because I strongly identify with the many roles and experiences of being ‘woman’ in the world at this time in history. I am continually moved by, and celebrative of the ways women overcome challenges. So, it was to some of these women that I turned to in 2011-2012 to explore the stories of breast cancer. This would become a Master’s degree dissertation.
When I embarked on this journey, breast cancer seemed to be very present in my own circle of friends and colleagues. I was aware of my own wonderings about how breast cancer might try to influence femininity, sexuality, body image, life-giving relationships and experiences of faith and spirituality.
Fast forward to January 2021 and I would become an intimate witness to my mother’s own journey with breast cancer.
Ronnie Kaye, in her book Spinning Straw into Gold (1991:17), compiled some thoughts after working with women’s journeys of breast cancer for five years. The first thread of thoughts is that of her understanding of the issues that surround having breast cancer. These include death, body image, sexuality, differentness, communication, self-worth, recurrence, femininity, isolation, fatigue, treatment concerns, side-effects, and relationship problems. The second thread of thoughts is what Kaye discovered to be common feelings that may be part of a woman’s response to breast cancer. These include fear, grief, depression, envy, powerlessness, vulnerability, guilt, betrayal, self-hate, anxiety, anger, sadness, loneliness, shame, resentment (Kaye 1991:17). Illness, in general, involves the body’s fragility and this, for Michel Foucault, (1984:83) introduces the idea of the body as a site of power struggles. Susan Bordo (1989:13-33) also suggests that culturally mediated messages and behaviours create unhappiness with the body. I used these ideas to inform the questions I would ask.
I am drawn to Narrative Therapy’s intention to present a less ‘pathologizing’ view of the world by shifting focus from what is wrong in people to what is strong in people. And so, I invited a group of women, who would become my co-researchers, on a journey of individual and collective story sharing. The following is a summary of some of our findings.
EXTERNALISING LANGUAGE
A central idea of narrative therapy is that of separating the person from the problem – in this case the breast cancer - through the process of externalisation. Externalisation characterises the way the problem speaks, tactics of power it uses, and strategies employed by the problem in order to establish dominance. Michael White (2007:28-29) writes that externalizing has the effect of “reducing power” of the problem. Externalizing conversations, therefore, assists people with giving “expression to a range of experiences of life that they previously had not had the opportunity to express”.
The introduction of externalising language invited each co-researcher to consider breast cancer as an illness separate from themselves. In this way, a greater understanding of the strategies it used in their lives was discovered. Morgan (2000:24) suggests that by doing this the “problem no longer speaks to them of their identity or the ‘truth’ about who they are” and it opened a safe space for the co-researchers to begin to take action, or recognise action already taken, against breast cancer in various ways. The women were encouraged to name their own experiences of breast cancer and metaphors such as ‘uninvited visitor’ and ‘assailant’ were named.
Freeman, Epston and Lobovits (1997:3) ask two questions that I considered over the course of this journey. Firstly, “do we dare to be playfully creative in the face of worrisome problems? Secondly, “What happens when we engage our imagination, humour and resourcefulness in opposition to the deadly seriousness of problems?”
They suggest that expressive arts therapy have things in common with narrative therapy and that “similar benefits result from artistic expression of a problem as from the practice of externalisation”.
The personality of breast cancer
The idea that breast cancer might have a personality was brought to light by remembering conversations the women had had with doctors, one doctor in particular – Dr Carol-Ann Benn, who I would have the honour to meet in person in 2021. I therefore wondered what inviting the co-researchers to draw breast cancer would be like. The words of Carl Jung, in his autobiography ‘Memories, Dreams, Reflections’ (1961:223) helped forge the idea - “Words and paper, however, did not seem real enough to me; something more was needed. I had to achieve a kind of representation in stone of my innermost thoughts and the knowledge I had acquired”. The creative exercise was embraced by the women, and through drawings breast cancer became a Pac Man eating healthy cells, an Octopus with long tentacles, a red thread in a pastel life tapestry and an invasive alien.
When visiting Dr Benn with my mother, she would speak about a ‘very lazy tumour’. When I later asked my mother how she would visualise it she saw it as a little worm, curled up and snoring.
This personification of breast cancer has grown the awareness that ‘breast cancer’ is not a ‘one-size-fits-all’ grouping of abnormal cells.
SOCIALLY CONSTRUCTED DISCOURSES
Narrative Therapy seeks to make visible some of society’s taken-for-granted assumptions. Society views the physical body in various ways: the practice of medicine, images of beauty, definitions of gender, norms of sexual practice and the habit of elevating a woman’s appearance as a surface to be decorated and a currency to buy love, acceptance, and success.
Vivien Burr (1995:48) describes these assumptions or socially constructed discourse as “a set of meanings, metaphors, representations, images, stories, statements and so on that in some way together produce a particular version of events. It refers to a particular picture that is painted of an event”. One such common myth about breast cancer, as with most cancers, is that the diagnosis is equivalent to a death sentence. It emerged during our conversations that:
· ‘People are afraid of cancer and often they are not sure what to do with you. The cancer issue doesn’t figure in conversation. In many ways it is a solitary journey’.
· ‘Some people don’t want to be around you. They distance themselves. You learn who your true friends are’.
· ‘It speaks of the kind of silence that surrounds cancer and the fear. People speak about it by not speaking about it.
At times a discourse had been introduced to the women by an outsider and appeared to marginalise or hamper the experience and the meaning-making process of breast cancer for them. An example of this was one of the women being told by a colleague that she was being punished by God. It was also clear that discourse was able to facilitate meaning-making by providing a secure frame for the creation of subjective meaning and, at times appeared to thicken the alternative story of illness. An example of this was a couple of the women being told they ‘reap what you sow’ which, after provoking feelings of unfounded guilt, became a reminder of the choices they were able to make in living a meaningful life despite the presence of cancer. Discourse, in this way, facilitated the thickening of stories of courage, determination and hope.
THE EFFECT OF BREAST CANCER ON LIFE-GIVING RELATIONSHIPS
I brought to this research an assumption that as the co-researchers do not live in isolation, the experience and stories of breast cancer would have an influence on all of their life-giving relationships.
The family and friends
General assumptions present in the word ‘cancer’ meant that each co-researcher was aware of the reactions of those around them. Reactions varied from avoidance and loss of friendships to strangers providing support, care, and very practical assistance. There was a clear distinction for the co-researchers between the relationships which were not able to survive the presence of breast cancer and those that had developed despite its presence. It was a shared understanding that people were afraid of breast cancer and that often, through lack of knowledge, friends chose to avoid the co-researchers rather than become part of the support team. For some, this had included the loss of important relationships. There were also times where the presence of breast cancer had invited new or unexpected people to come forward and offer life-giving support and assistance.
Self, body image, femininity
My own assumptions were that breast cancer might affect a socially constructed image of sexuality, femininity, womanhood, and health. Denise Ackerman’s (1998:87) suggestion that “all perceived reality and all knowledge is mediated through our bodies… We are our bodies. Our bodies defined whether we were stigmatized or advantaged” seemed applicable to the co-researchers’ experiences of themselves through the treatment part of their journey. This collective research highlighted that no two women shared the same experiences. What was shared was the notion that their femininity was only partly constructed by body image and breasts. Reconstruction was not imperative to all of them. Only one co-researcher had required a complete mastectomy and she had chosen reconstruction. She saw the reconstruction of her breasts as more important to her physical relationship with her husband than necessary for her to define her femininity. Each woman expressed varying levels of discomfort with their new body image. One woman, who had been divorced for many years, felt very out of touch with her changed body and expressed concern over the appeal her body would have to any new relationships. Another regarded the surgery as a mutilation of her body that was hard to accept. One expressed the changing shape of her already small breasts as not noticeable and, for another, who also considered herself as small breasted; the changes to one of her breasts didn’t evoke any anxiety.
What I hadn’t anticipated was the greater discomfort over what is often considered to be a woman’s crowning glory - her hair. Some experienced this as a traumatic and outward sign of the illness. It was evident from the conversations that not one of the co-researchers had allowed themselves to ‘look ill’ and each had made unique efforts to continue to look good through items of clothing such as scarves and hats as well as make-up.
UNIQUE OUTCOMES, ALTERNATIVE STORIES AND EXCEPTIONS TO THE
DOMINANT STORY OF BREAST CANCER
It was important that this research not only focus on the breast cancer-dominant stories but also provide a birthing space for acknowledging and giving voice to the ways in which the co-researchers had stood against breast cancer. One of the important contributions of narrative therapy is the emphasis on the alternative story. Narrative practices are always on the lookout for the often unnoticed, unspoken story of another’s survival, strength and practices which have enabled the fight back or the overcoming of a problem.
Discovering unique outcomes or pivotal moments thickens the alternative story. Morgan (2000:52) states that “unique outcomes are anything that the problem would not like”. They can be considered a plan, action, feeling, statement, quality, desire, dream, thought, belief, ability, or commitment. Several pivotal moments existed in this collective research. Each woman had made a conscious decision not to give breast cancer centre-stage in their lives. Along with this recognition was the element of choice, of purpose and of living despite breast cancer in a way which was life-giving in some way to each co-researcher. One woman chose to ‘stop waiting for life to happen and make it happen’.
In order to thicken the alternative stories, the research journey explored the strategies that the co-researchers had used against breast cancer and what some of the learning’s had been about themselves. Strategies such as humour, work, maintaining a family routine, celebrating the living, allowing themselves moments of emotional melt-down, and being in control were named by the co-researchers. One woman spoke of the choice she made to ‘marvel at the technological journey’ and to ‘celebrate and acknowledge the medical things that go on around cancer’ rather than remain in the story that cancer was living within her body.
The individual research conversations were brought together in a story-sharing group gathering. This was a way to celebrate the birth of new meaning and experiences for each one of us. I offered myself to be interviewed by a co-researcher from the group. This outsider witness practice invited the co-researchers to experience, in some small way, what their stories had taught me and what I had been privileged to witness in them.
We ritualised the end of the research through the creation of a collective poem. Each co-researcher, each woman, was invited to have the final say about their stories of breast cancer. This became the group’s statement of position. In their words:
Redefining Femininity
I define it...
& God is the only constant.
I have an invitation to find God in the secret & unexpected places.
A new lust for life,
I stop waiting for life to happen.
Femininity is resourceful -
It’s about my contributions
And an opportunity to be a role model
Because strength comes at a young age.
I am tenacity,
I am perseverance & determination,
I am comfortable in my different faces of ‘femininity’.
What’s internal is more significant than what’s external.
The mask comes off
And I accept who I am.
I don’t need to be beautiful,
Instead, I’m free to be me
and leave a legacy of what true femininity is -
Hope, faith, joy - LIFE
List of References
“I am a part of all I have read”
John Kieran
Ackerman, D.M. & Bons-Storm, R (Eds.) 1998. Liberating Faith Practices: Feminist
practical theologies in context. Leuven: Peeters
Bordo, S.R. 1989. The Body and reproduction of femininity: A feminist appropriation of Foucault. In A.M. Jagger and S.R. Bordo (Eds), Gender/body/knowledge: Feminist reconstruction of being and knowing, 13-33. New Brunswick: Rutgers University Press
Burr, V. 1995. An introduction to social constructionism. London: Routledge
Freeman, J., Epston, D. & Lobovits, D. 1997. Playful approaches to serious problems. Narrative therapy with children and their families. New York: W.W. Norton & Company
Jung, C.G. 1961. Memories, dreams, reflections. New York: Vintage books
Kaye, R. 1991. Spinning straw into gold: your emotional recovery from breast
cancer. New York: Simon & Schuster
Morgan, A. 2000. What is narrative therapy. Adelaide: Dulwich Centre Publications
White, M. 2007. Maps of narrative practice. New York: W.W. Norton & Company.