This essay was written in April 2021 while resting from the second Covid Vaccination. It speaks of the thinking and events that led to ReVisioning Medicine and the nature and meaning of Story as it guides us in diagnosis, understanding the nature of the affliction, and in treatment, finding the path we are called to walk for healing.
I had breast cancer in 1977. I was lucky; I was a writer who had been teaching at the Center for the Healing Arts in Santa Monica, the first center in the country for ancillary ways to meet cancer. The psychiatrist, Jaquelyn McCandless who had co-founded the center with Hal Stone recommended me to the one who had been her surgical attendant, saying he was kind and had a fine stitch as he was a pediatric surgeon. This pleased me as my oncologist clearly had no interest in treating me having befriended the primary care doc who was my ex-husband. The oncologist had sneered at my desire to have a mammogram to check out a tiny mass in my breast in July 76– which, yes, was cancer, in February 77 and had answered when I asked about radiation and chemotherapy that I was the one to decide. It was only the second year when lumpectomies with radiation were being considered and I had been curious about them. His responses led me to throw in my lot fully with the surgeon who, on meeting me asked “What shall I call you?”
I answered, “I can call you Dr. Gans and you can call me Dr. Metzger, or I can call you Steve and you can call me Deena.”
“Ok, Deena,” he said and a bond was formed.
It was easy to decide on a full mastectomy as my childhood pediatrician had died of stomach cancer because, in my understanding, he had died of his love affair with the fluoroscopy machine. It was possible that this was also the cause of the breast cancer as he loved to place me before it and have me peek over and view my inner organs which took a very long time each visit. Or was it due to the birth control pills I was able to sample as a Dr.’s wife, at first at very high doses, 10 mg, then 5 then 2.5, until the IUD was designed. Or was it something else? Also something else?
I was so undone by having breast cancer I gave all my attention to healing it and when the surgeon, as a matter of routine, sent me to his friend, a plastic surgeon, I thought nothing of it, even when I felt the absurdity of his showing me photos of possible breasts I could choose. “Just reproduce the old one,” I said, “don’t think of ‘fixing’ both,” determined not to be distracted from my concern about healing.
From the first moment I was diagnosed with cancer, when the mass the physician had neglected to concern himself with was viewed, I knew I was, as I have said and taught for the forty-four years since, ‘in a Story.’ Most want to know the nature and details of the cancer, but I wanted to find out the nature and details of the story for I had earlier begun to understand that illness is a Story. I was already developing a series of questions not directed at pathology:
What story is the illness telling and how does the story reveal we can heal and live? I was beginning to understand, but not as I understand it now after working with this way for so long with patients, physicians and therapists, that the investigation of the Story can yield both a diagnosis and treatment, that the explicit medical understanding is insufficient when not aligned with the individual understanding and experience. There is a medical story and a personal story and both must be known. And the personal story is not the province of a therapist, it is not about what is wrong.
In 1977, I said, the surgeon will cut out the cancer in my breast but I will have to cut out the inner cancer. His action, like cure, was simple, quick, precise. Mine like healing is on-going. Forty-four years later after a mastectomy and no other medical treatment I am very, very well.
What follows about Story developed into the teachings of ReVisioning Medicine which I founded in 2004 at the request of physicians who had attended the Keynote address I gave at the American Holistic Medical Association (followed by other Keynotes at the annual meetings of the American Academy of Environmental Medicine and the American Osteopathic Association.)
A Story is not simply a narrative of events, of what happened to one, or how one is feeling, or a review of one’s personal life. A Story, that is a healing story, is the perception of aligned events, storied histories of all sorts – personal, family, cultural, political social, land-based and environmental, of dreams and perceptions, experiences, emotions, intuitions, memories, and ideas one has about healing, and finally spiritual wisdom beliefs and understandings in particular – which cohere to reveal a possible foundation for the illness and also relevant and pragmatic ways to meet it: Why did this illness, in particular, occur to this person, in particular, at this time in particular?
Statistics, measures, tests, pathology reports are only a small part of the Story although they are often very useful metaphorically:
Why did a Native American woman get leukemia? Yes, she played in the uranium tailings on the 4 Corners Reservation – an essential part of the Story. But also, in her particular case, her mixed blood heritage and her response to it indicated that the White cells and her heritage were dominating the Red cells and heritage. This was an essential understanding that led to healing after her kidneys gave out from chemotherapy.
In the years between 1970 and 1977, I taught, often simultaneously, in three different institutions of higher learning, California Institute for the Arts, Valley Community College, and the Writing program I had founded at the Feminist Studio Workshop, a two year program for women in the arts and social change. The demographics were very different and yet in each a startling number of women, mostly young but not all, had breast cancer. I had been a physician’s wife, separating in 1969, and would have been aware of what seemed like a plague, if people were talking about it rather than hiding. Concerned and curious, I began investigating, speaking to the students and recording what I discovered in what became a novel-in-progress, The Book of Hags, produced as a radio play by KPFK Pacifica, in 1976. The core question of the literary work was: Why do so many women have cancer, why now and why so young?
In almost each woman’s response, there was a reference to having had a breakdown in earlier years. And this experience was echoed again and again in the responses to the talks I began after I had cancer. Further, the women, each in their own ways, indicated that the response to their breakdown was containment, whether by pharmaceuticals, electric shock or other means. The women consistently implied that there were profound causes for the breakdown that were never considered and certainly not respected. They alleged that if they had been met in different ways, they might not have gotten cancer. They rarely thought cancer was a physiological event. They had originally looked to therapy for insight not relief or control and did so, similarly after having had cancer, with similar disappointment. I quickly realized that their inner understanding, the Story they put together, would not be accessed, and so not considered, in an intake interview, and yet this knowledge became essential to them and so to me.
I had an important dream in July 1976 when I first became aware of the small mass. The dream was central to the radio play and to the plague of cancer in younger women. In the dream, after being arrested by the DINA(!) the Chilean secret police, and stripped so my breasts were exposed, I was to be tortured by a Nazi matron who had worked at Dachau. Her first words to me were, “Sveig,” meanng, ‘Don’t speak. Be silent.”
When I finished the draft of the novel in early January 1977, I understood a great deal about cancer. And when I discovered I had cancer some weeks later, I had, from my own observation, research and writing, a Story, to guide me through treatment and into healing. At the core of my understanding, was the possibility that the silences imposed on women could be a significant factor in illness. My response was to bring my typewriter to the hospital. It was a colossal IBM Selectric which made access to what was called the “make-up” or “cosmetic” table impossible, a symbolic replacement I appreciated.
While in the hospital, which at that time consisted of a week for a biopsy and various tests and then a week for the mastectomy and reconstruction, I kept two journals. One in which I could express myself without any inhibition and another which was almost the same but moderated and thoughtful and which became the memoir Tree, the fourth edition titled Tree: Essays and Pieces, North Atlantic Books.
There was another essential factor in the developing Story that has guided me and helped to maintain healing through scrutiny and fidelity, all these years. As I said, I had not thought about reconstruction but followed Dr. Gan’s recommendation. It was not, as it is today, part of one procedure. During the reconstruction, however, there was a freak lightning storm in Los Angeles and the electricity went out in Cedars-Sinai hospital. Though there was emergency back-up, the autoclaves weren’t operative and the implant could not be sterilized. When I awakened and understood, I assumed they would try the next day, BUT, I had had major anesthesia three times, I had to wait a year. This was very distressing.
That summer, I went away for several weeks to write and a woman at the Lodge where I was staying showed me an arrow tattoo on her shoulder. Later, she introduced me to the tattooist. Together we designed my chest, as I liked to say then, “with the care given to a medieval manuscript.” When Tree was first published in 1981, I also published a poster and then postcards of my tattooed chest. The poster, that became known as the Warrior Poster or Amazon poster, with the penultimate paragraph of Tree on it, sold individually, but also went round the world from the covers of medical societies, to covers of books on healing in Germany and Japan, and too numerous to count reproductions in hundreds of magazines, journals, publications, newsletters, and then on the web when that form of communication came to be. What I did not know then were the terrible consequences of reconstruction because of the materials, (silicon) which affected both cancer patients and women altering their bodies for vanity’s sake. To this day the poster, with its extremely positive image, remains an important means to encourage women to refuse reconstruction as each new negative side-effect develops. I could not then have imagined how many lives would be saved by that image.
The Story of the illness guided me in all ways. Deep inner knowledge guided me to change my life, an increasingly common response then to cancer and other life-threatening disease. In this instance, healing is privileged. Heal the life and the life will heal you, I prescribed for those fortunate enough to be able to make radical changes. In this instance, as in so many others, healing is a privilege. I also held that the values and patterns of the healed life would be communicated to others and ultimately would influence and protect everyone, those able to make radical changes and those whose lives would be altered by those changes that would become commonplace.
The thinking I did then is too complex to transmit here. Suffice it to say that I moved to a rural area, ultimately left academic teaching, and became a healer. I supported myself by teaching writing, training healers, and aligning physicians with the ways of healing. I lectured extensively on healing and healing stories for universities, medical schools, hospitals, medical associations, conferences, and individual events.
In 2004, ReVisioning Medicine was first conceived. Here is an excerpt from the first invitation:
Join ReVisioning Medicine for a week, learning its beautiful medicine ways from the inside through personal experience. During the week, ReVisioning will constitute itself as healing community – but that does not say it. It is an organic response to the brokenness of our lives and the need to recreate vital forms that re-establish healing within the context of spirit, kinship, reciprocity, compassion, inter-dependence, beauty, and loving-kindness. ReVisioning also recognizes ‘sacred illness’ and the healing paths that result from treating the life as well as the affliction. It is a way that allows us to diagnose and understand our condition in entirely different ways, though referencing, conventional medical understanding but within the questions: What Story is the disease telling and what is the healing Story? It is an opportunity for the training of the heart and a way to recognize the pathless path to which we are uniquely called, a way to step on to that path, a way to begin to live the authentic life and the healing that is implicit to it.
Cancer changed my life because, among other responses, I investigated and lived by the directions of the Story I perceived. Over the last seventeen years a significant group has formed around ReVisioning and we always include a Volunteer Informant, often a physician or mental health therapist who is also participating in the event but is suffering from a condition that remains mysterious and without resolution by conventional medical means. We also have a Clinic on the last day where we meet with three different patients for two hours each in what we call Indigenous Grand Rounds. What is revealed about the illness by listening for the Story can never be anticipated and most certainly the level of evidence based healing that has occurred is astonishing and again, entirely unpredicted. Sometimes it may be that the presenting disease is opportunistic when an underlying Story exists invisibly and can’t be accessed. Or that the afflicted ones can’t believe that the diagnosed condition can be healed until they feel they can approach and heal the personal story that seems intractable. At the least, we offer the informants at least two hours of deep and unbounded dialogue with a remarkable circle of medical, mental health practitioners and healers who listen to them sincerely.
We always seek informants who will teach us and whose condition is perplexing but relevant to what is occurring in the nation. For the most part, the diagnosis has not been difficult, but the treatment or outcome, despite the best medical care, has turned out to be inadequate. This was the case of the Arikara woman from the Navajo Reservation with Leukemia who finally experienced healing after ReVisioning and after her conventional treatment became insupportable. As surprising is that her understanding of illness, mirrored by ReVisioning, was so developed, that she began to assist the oncologist who had treated her in his relationships and hospital work with children with cancer. Such a development is not unusual with ReVisioning. We have worked with people with various cancers, neuromas, Lyme disease, Agent Orange syndromes, MS, diverticulitis, heart disease, extreme chemical sensitivities, undiagnosed and chronic physical pain from childhood, and more. The medical diagnoses and records give us a hint, but it is, ultimately, and consistently, the exploration of the Story, essentially unknown until that moment, from which the remarkable healing events have emerged.
In the past, we have a convening group of physicians, medical and mental health practitioners, story tellers and healers, Indigenous and Western, who have met once a year, on President’s weekend on land in Topanga, California and at least once a year elsewhere, including Prairie Care in Minneapolis and twice at Palo Alto University. This year, because of Covid we met virtually which allowed physicians who could not travel for such a long time, to attend. This October, Zoom will allow us to offer ReVisioning Medicine to the people in Curaçao led by a medical anthropologist, Muz, Richenel Ansano who is a Cultural Heritage expert working internationally with UNESCO, someone who has exactly the right training and understanding to meet the physical and mental anguish of the diverse population on the Island. One of our goals is for the ways of Story to become known so they can be skillfully practiced on behalf of healing in all modalities.