Saturday, March 3, 2012

On the Nature of Afflictions

"The affliction is the doorway; it is not the thing itself. The afflicted one is being asked to make an offering for the community." Thus, began Deena Metzger this past Saturday in a workshop which I co-facilitated with her in Topanga Canyon, California. Deena is a writer, a novelist and essayist, perhaps best known for her personal and inspirational writing about her own breast cancer experience. We sat together with a room full of people on top of a mountain next to the largest "inside city limits" park in the world, the Topanga Canyon Preserve which lies entirely within the city of Los Angeles. Coyotes intermittently howled their agreements and disagreements with our discourse from close quarters inside the canyon. Large ground squirrels (as large as our Vermont woodchucks) scampered from boulder to boulder outside the window. The vast expanse of Los Angeles lay nearby but out of sight from this panoramic vista. Within contemporary medicine and psychology, we have invented "things" to have. We have bipolar. We have attention deficit. We have PTSD. People want to know what they have. Rarely do the come to the consultation room acknowledging that they have been invited to enter a doorway to explore the nature of the universe. Yesterday I sat in my office with a woman who "had" leukemia. She had come to the understanding that she had never permitted herself the indulgence of exploring her own life until she was diagnosed with leukemia. Then she had something sufficiently serious as to justify her adventures into inner space. As her leukemia improved (co-incident with her inner journey), she wondered if she would reach a time when the severity of her condition no longer justified the indulgence of exploring the world of her mind and relationships to others. "So," I said, "in order for us to continue our work, will your leukemia have to relapse?" That comment shocked an awareness in her that she could continue for the sheer joy of exploring without the excuse of having a potentially life-threatening illness. Leukemia had invited her to open a door, but she could remain in the dimensions of the mind long after the invitation had expired. In 1976, Deena wrote that "cancer is silence". She was describing women who went "crazy", had nervous breakdowns, got heavily drugged, and then got cancer. She was determined to speak whatever had been silenced in her. Of course, I don't think cancer is always silence, but I do think cancer, as well as other illnesses, emerge interactively as meaning-making opportunities for those who have them. The meaning of the illness can sometimes be transformed into the meaning of the healing. Deena was describing an experiential phenomenon of her time -- the silencing of wild and crazy women through drugs and the emergence of that energy in other ways. She reminded me of the insanity of the changes in our small brook that happened during Hurricane Irene. So much water fell from the sky that nothing could contain it. Dams burst. The rise in water level was measured in meters. We can appreciate that still when we see refrigerators wrapped around the top of trees or car hoods nestled in branches far too high to reach. Deena believed that telling her story would be healing. For her, and for a generation of women, it was. The radical departure of this brand of narrative medicine from the biomedical model lies in the awareness of the embeddedness of illness in the entire context of a life story, even if the affliction is a mysterious visitor, even if it remains silent and cannot be made to speak. However shrouded in mystery it remains, it is a being with ontological validity. Within the medical model, illness is isolated, fragmented, and silenced. Its existence is denied. Its presence as a being is avoided. I believe illness has a story to tell. Visitor, friend, enemy, obstacle, antagonist, helper, or villain -- whatever it may be (and it can be all simultaneously), our affliction stands before us ready for discourse, no longer silent. The transition from positivist to narrative medicine gives illness back its voice and is fundamentally reanimating to the world. In medieval times, illness spoke. Ingmar Bergman's famous movie, The Seventh Seal, reveals the voice of the Black Plague in the being of Death itself who plays chess with the knight, returning from the crusades, expecting to lose, but with the intent of saving the lives of others with whom he is traveling. However, assuming that illness necessarily has a message is also positivist. The message may be the one that interactively arises through the dialogue with affliction. We co-create the message with the illness. What emerges may not have been present at the moment of affliction. A member of the workshop speaks up about using narrative methods with women who have received violence from a romantic partner. She now approaches them with genuine curiosity, with what Harlene Anderson and Harry Goolishian of the Houston-Galveston Family Center called a "not knowing" stance. She learned she could ask legitimately about the ways in which the women recipients of violence still loved their partners. In her old model, victims were not allowed to love perpetrators. Through narrative means, she could embrace the rich complexity of relationship in which love and violence can co-exist She shared how this awareness removed her from the frustration of being a social worker who was angry at women who returned to men who beat them. She could be less judgmental. She could be curious about how they would do this and the value of love over battery. She came to understand violence as a visitor into a situational relationship which deserved query. A part of us hates the violence. A part of us is angry at the person who is violent. A part of us still loves this person. How can these parts, these characters negotiate? How can you, the person who receives the violence, balance your anger, your love, and your desire to avoid being hit? How can we negotiate this? She told us how this approach was so much more effective than her previous black and white stance. When she allowed her clients to acknowledge the love, they could actually more successfully problem solve about how to avoid the violence. Narrative paradigms do not oppose biomedical therapies, only the blind reliance upon them. We realize that more levels can be considered beyond the merely biochemical. "What about athlete's foot?" one participant asked. "That can be quickly treated with an anti-fungal medication." "But there is a story there," I countered. "I have had this problem and it came from a story in which I was too busy to dry between my toes after showering at the gym. Going a little slower and doing self-care became an important theme that had manifestations in other areas of my life. I could take a narrative approach to athlete's foot by wondering about all the other areas in which bit of self-care could prevent a more serious problem from developing." Here I was proposing that everything that happens to and inside of our bodies involves story. Because our bodies are our lives, whatever happens to and in them has ongoing meaning and purpose, even if it didn't when it occurred. Illness takes place within a field that remains to be discovered and explored as potentially part of the healing process. This is also the message of Brian Broom, a professor of rheumatology at the University of Auckland Medical School in New Zealand, in his book, Meaning-full Illness. He writes how exploring the field of relationships, locales, and situations surrounding the illness can allow its meaning to appear and lead to its healing. Again, for him, illness serves as an invitation to enter into a dialogue. Even when illness appears to have no intrinsic meaning, we can seize the opportunity to construct meaning , to re-vision ourselves, to re-construct our lives. Brushes with mortality have that life-changing effect. Professor Hardy in the UK studies spiritual transformations and found a common antecedent to be near-death experiences. We humans have the unique capacity, as existentialists like Victor Frankl have written, to create meaning where none was before. This arises from our inherent, intrinsic capacity for storying, for applying our biologically primed narrative capacity to the physical world in which we are embedded. I'm happy to live in a storied world of magic and purpose more than a material world of randomness and meaninglessness. I'm happy to believe that my efforts at elucidating the field around an illness and identifying the characters who move in that field, matters. The rules of evidence also differ for me. I'm not as interested in mass produced, randomized, controlled trials, as I am in whether or not the people I see grow and change in meaningful and important ways which others can recognize. I use outcome measuring instruments like the MYMOP (My Medical Outcome Profile), Duncan and Miller's Outcome Rating Scale, and more. I do care if I'm effective or not. But I also listen to the stories I'm hearing and ask whether or not they're changing. The affliction, the label placed upon the suffering, gives us an excuse to sit and talk, to start a conversation in which change and transformation could occur. If it's early, for instance, in the course of metabolic syndrome, we could transform our lifestyle and loose the illness. If it's late, perhaps our goal is comfort and meaning, especially after the renal failure and blindness have occurred. In my experience, asthma also always responds to dialogue; less so, COPD. Cancer is its own unique set of complications. We can also develop strategies for interfacing with the remainder of the medical system. Recently a patient of mine had her second bypass surgery in 11 years. I knew it was coming because I could not get at the stories that kept her from controlling her blood glucose adequately. After it happened, however, the young specialists had a bevy of protocols on which to place her. If she took all their recommended medications, she would have been taking 12 different drugs each day, many of which interacted and all of which had side effects. We generated a plan of demanding end points from the specialists. What was the goal? Rather than take everything, she wanted to take only those medications which would clearly advance her capacity to walk extended distances and up and down stairs without shortness of breath. She proposed to the specialists to assess each drug individually for its contribution (or lack thereof) to her walking and climbing capacity. If it didn't make a difference, probably it was unnecessary, even though recommended by protocol. This was a new story for the specialists (but a common one to geriatricians who often joke about killing the patient to cure the illness). I was able to help this patient to negotiate with her specialists in a way in which she got what she wanted and they learned to respect her. We are still working to find meaning in the heart disease through co-authoring a story called "adventures of the heart". It is a work in progress but one that has already comforted her despite her limitations. Thus, illness or other afflictions present opportunities for meaning-making, through dialogue with the illness, through allowing it to speak and be heard, through querying it, through negotiating with it, through transcending it, through the myriad of relational opportunities available. Sometimes this allows the illness to calm itself, to depart, and sometimes it doesn't. Always the opportunity exists, however, to make more meaning than existed previously. This is the invitation that every affliction makes -- to co-create meaning and value.