Summary and Conclusion - Pain, Caring and Transformation

6. 6. Summary and Conclusion
   Pain is at once both the most general and universal of human experiences, and at the same time the most particular, private experience each of us endures.  It is unique among the senses, because while we can all see the same mountain, smell the same flower, even taste the same cup of tea, we each experience our own unique pain inside our own body.  While it is easy to empathize with another’s pain, and in fact recent studies have shown that the nervous system responds in similar ways when we see someone pricking their hand with a pin as we do when our own hand is pricked (Singer, 2004) and that mammals as seemingly different from us as mice experience empathy for their cage-mates (Langford, 2006) it is also easy to doubt another’s experience of pain as “an exaggeration” or “all in the mind.”  The history of Western medicine has shown that male doctors are particularly prone to doubting a woman’s reports of pain, or attributing it to a mysterious anatomical difference (the wandering womb of hysteria).  This doubting of what to another person is incontrovertible is itself wounding, as shown by Scarry’s thoughtful descriptions of torture.  Pain is at some level the thing that binds us to our individuality, and to reality itself, as when the dreamer pinches himself to ascertain that his experiences are real, that he is really himself.  It is [contradictorily] the ultimate proof that we are in the moment inhabiting a shared reality with others rather than a dream world of our own creation.  Not surprisingly, pain is experienced in a rich cultural context that includes our knowledge of our body’s interior, the cultural implications of pain as a symptom of possible illness, with all its life-threatening manifestations, and the meanings and understanding around communicating that pain to others. 
   In her book, The Myth of Women’s Masochism, Paula Caplan writes: “Society tells women to starve, paint, pinch, put and otherwise distort our bodies in order to be thin, colorful, busty, hippy, and firm – but not too thin, colorful, busty, hippy and firm…  We are also told that women are supposed to have babies, but soon after giving birth we are to return to our slender, youthful appearance, despite the major physical upheavals of pregnancy and delivery and despite the much-interrupted sleep that goes with having a newborn and exhausts most new mothers.  We also learn early that old women are neither attractive nor dignified in the eyes of men, even old men.”
   One of my first patients as a Clinical Psychology Practicum student was a woman in her 60’s whom I visited weekly at her home.  She was obese, and a hoarder, in her own words a ‘pack rat’.  She suffered from chronic fatigue and aches and pains all over her body, and had at one time or another been diagnosed with lupus, cancer, Lyme’s disease, fibromyalgia, arthritis, chronic obstructive pulmonary disease (COPD), diabetes and numerous other serious chronic illnesses and conditions.  Before going to see her I was warned that there would be nowhere for me to sit.  In fact, she had cleared about four inches off the corner of a couch opposite her wheelchair from the clutter, as I discovered when finally she let me in (not on my first or even second attempt).  Eventually she positioned a folding stool, and then a director’s chair, for me, slowly inching closer to her own seat as the year went by.  She owned two guns (although she didn’t know where they were, in the clutter) and constantly fantasized about taking herself out with her doctors.  Because of the guns, I had to call my supervisor each week before I entered and after I left, and as time went by and she let me into her confidence it became increasingly hard for me to ‘hold the frame’ and exit after the 50 minute hour, which made me feel ashamed because I had to make that call late.  Her home was littered with well-thumbed books, among other things, but her eyesight had deteriorated such that she was no longer able to finish a novel.  So, on her birthday, I gave her a humorous book on tape, although therapists don’t customarily give gifts to their patients.  She desperately wanted someone to connect with her intelligence.  Instead, she had been in a series of abusive relationships, starting with her adoptive parents or perhaps even earlier than that.  She believed that the doctors had put her on a bad list, since she was so often ill.  She said that if she could, she would invent a poison to spray on everyone in the world except for the Bushmen.  When I asked if that included me too, she was willing to spare me along with the Bushmen.  She saw as her soulmate a pet dog from childhood that still appeared in her dreams.  After our last session she gave me an unopened bottle of women’s vitamins, the same brand she took herself, and I thanked her for wanting to take care of me.
   Since then, I have often thought about this woman in my prayers, and I wonder now after writing this literature review if she might have had a different experience had she encountered a more caring healthcare environment.  She was by no means an easy person to get along with, and I am not certain how much she changed during our time together.  With hindsight, I wish that I had the tools then that I have now.
   Another patient came to see me who actually listed as a medical condition the ‘pain in the shoulder’ of Japanese menopause for which in the West we have no name.  She believed that her condition was due to arthritis, or to a no-injury car accident she had suffered 10 years earlier, although there was no medical evidence for either of these things.  Again, it took weeks and much patience on my part before her weekly attendance at sessions became regular – she kept calling in sick - but once we got to this point she became one of my most faithful patients.  For many months, she complained about having to see me at all, saying that I was too young to understand, that we did not have the right connection, or that she only wanted medication.  Eventually, she revealed that after being abused by a man in her teens she felt that she had been abandoned by God, that she was no longer a good person.  I saw her for over a year, when she had to end the therapy because her insurance changed.  In our penultimate session, she told me a dream she had some years earlier, in which she met God.  It was a powerful dream that had left her elated for weeks, and we both teared up when she talked about it.  During the time she saw me, she made many changes in her life and went through a number of transitions that included accepting and adjusting to her chronic illness, and learning to spend time alone.
   As the history of pain relief clearly indicates, medicine, even scientific medicine, is a cultural artifact.  In the words of Oliver Wendell Holmes (1891), “The truth is, that medicine, professedly founded on observation, is as sensitive to outside influences, political, religious, philosophical, imaginative, as is the barometer to the changes of atmospheric density. Theoretically it ought to go on its own straightforward inductive path, without regard to changes of government or to fluctuations of public opinion. But look a moment while I clash a few facts together, and see if some sparks do not reveal by their light a closer relation between the Medical Sciences and the conditions of Society and the general thought of the time, than would at first be suspected.”  We are now going through a tide change in attitudes toward the mind-body relation.  Physiological studies conclusively demonstrate, as Patrick Wall writes in his book Pain: the Science of Suffering, that empirical facts do not support this Cartesian distinction so embedded in Western culture.  Increasingly, not only is the brain seen as the seat of the soul, with the advent of new drugs for every kind of emotional pain, but also the mind has been proven again and again to lay the ground for the experience of physical pain, and be capable of reducing it, as shown by the many examples in Jon Kabat-Zinn’s book, Full Catastrophe Living.  What remains is for the second half of this equation to trickle down into common practice and folklore.
   The problem is that this becomes stuck against the age-old conundrum of male doctors doubting the reality of female patients’ suffering.  Women experience a lot more stress-related conditions in our society because women experience a lot more stress.  Regardless of the changes brought about by feminism, women still earn less, work harder (both in the workplace and the home), end up holding the baby, and are devalued by society, including other women, as soon as they show signs of aging.  Women are far likelier than men to experience sexual abuse and molestation, experiences that often lead to chronic illness and pain in later life.  Medical science has been successful in the treatment of acute conditions, but not so chronic illness.  For this reason, medical professionals often shun patients (commonly women) who fail to get better.  Society has an unrealistic model in which death is seen as a medical error, and the poor health that still often accompanies aging as a sign of insufficient fortitude and self-care.
   By contrast, care and compassion from others are perhaps the most necessary requirements for healing.  The trainer who led me to Jon Kabat-Zinn’s book had attended one of his courses, and said to me that he was one of the most compassionate people he had ever met.  In a room filled with over 30 participants, he made every single one feel heard and personally understood during the course of the first few sessions.
   I had the privilege of leading a stress management group based on Jon Kabat-Zinn’s program, and it was one of my most memorable training experiences.  In the course of leading the group, I re-read the book, and realized for the first time the importance of transformation, change to the self – whether one’s personality or worldview – as an essential element in healing.  In the last session of the 8-week group, I asked the patients for feedback about their experiences.  One woman said, “It’s not that I’ve learned to relax, it’s like I’ve discovered a switch in my head that turns on more calm.  It’s always been there, but I never knew it before.”  She and another patient both said that practicing the meditation made them feel closer to nature, an expansive transcendent experience that had never been discussed explicitly either in the group or in the readings.
   Working individually with this same patient, I was able to communicate caring with her to help establish a strong bond between us that, I think, helped her recover.  She came to see me for posttraumatic stress disorder after she had been brutally assaulted and robbed in her home.  The first session, she told me that she was not someone who easily talked about their own problems, it was against her upbringing.  Instead she liked caring for others.  As she sat earthily on the couch and recounted her experience, I noticed that she was still sweating and shaking when she talked about it.  I told her it was very brave to talk about it this way, and I offered to get her a glass of water to help her calm down, which she accepted.  I think it was this caring communication that both cemented our relationship and eventually facilitated the patient getting over her trauma and beginning to make new friends in the city she had moved to, although I am not sure if she still experiences the neck and shoulder pains that came after the attack.
   Even in the psychoanalytic literature, there is now discussion of compassion, as a factor in psychotherapy.  However, I have chosen to review Carol Lepannen Montgomery’s book Healing Through Communication: the Practice of Caring because caring for patients with chronic illness and pain occurs almost invariably in the context of their experiences with medicalized healthcare, in spite of the fact they might seek psychotherapy because they also have depression or anxiety.  Additionally, although compassion and caring are almost synonymous, compassion is something that exists more within the experience of the caregiver and is given to the patient, whereas caring and its communication happen between the caregiver and patient, with the patient in the foreground of the relationship.
   Caring communication can, I think, bridge the gap between scientific awareness of mind-body effects and ways of actualizing this knowledge in the culture of patients without making them feel disbelieved or blamed for their pain.  This is not an easy task, and requires a great deal of skill.  I feel that I have learned a lot from reading Montgomery’s book that might have helped me in my practice if I had known it sooner.  One patient saw me wanting to join the stress management group, but instead she was only able to come to individual sessions because of her tiredness in the evenings.  After a long period of illness, she had finally been diagnosed with multiple sclerosis.  She lost her job, her home, and her marriage.  When she came to see me, I think she wanted hope that she could regain her old life.  She felt that her life had shrunk, like tunnel vision.  She complained that whenever she tried to go to therapy groups, the chairs were too hard.  She even felt that the soft sofa in the room where I saw her was like concrete against her delicate skin and bones.  I was not able to give her the hope that she wanted, and perhaps the couch was a metaphor for her wanting me to be softer.  In the end, she decided to see a nutritionist instead.
   In her book, Encounters with the Invisible, Dorothy Wall describes a moving scene in which her neighbor, a midwife, silently massages her feet, warming them with the heat of her body and allowing herself to be cooled at the same time.  This to me is a perfect exemplar of caring.  Similarly, the acupuncturist who silently listens to the flows of her pulse, and like the traditional Japanese doctor seeing the menopausal women with cold hands and feet and pain in the shoulder, listens to her multifarious symptoms and pains, without doubting that they are somehow connected within the person whose body and soul are entrusted to her care.
   This is my second doctoral dissertation.  When I was writing the first, my brother died of leukemia.  He died of pneumonia following a complication of his bone marrow transplant, and I sat by his side as he panicked, distressed and unable to breathe.  I had no idea what I was supposed to be doing.  Eventually we said a brief goodbye and he was intubated.  I sat by his side, holding his hand and not knowing what to do, while the ventilator pumped air into his lungs until his heart stopped beating.
   In the early stages of working toward my second doctorate, I had a chance to remediate that experience by being at my grandmother’s deathbed.  She was always a difficult woman, but she had lost the ability to speak, and in many ways this made things easier for her caregivers.  We knew it was serious and came when we heard she had punched the orderly in the face who was trying to feed her.  I took turns with my mother, sitting by her bedside, as my grandmother, like my brother, was dying of pneumonia.  This time, thankfully, there was no talk of adding a ventilator or heroic measures to keep her alive.  After two weeks, it was a Sunday when she was evidently about to pass away.  The nurse had ordered morphine, but in the UK a doctor had to be called from another hospital to sign for it (see chapter 1 for a discussion of the power of doctors over the dispensation of opiates).  My grandmother was evidently in a lot of pain, although she was unable to use her voice to communicate it, doubly silenced if Scarry is right about the difficulty of putting pain into language.  Finally, the doctor arrived, and I went to her, holding her hand and making eye-contact to comfort her, and said, “The doctor is here, he can give you something to help with the pain.”  I tucked her blanket and went to close the door, so she would not overhear the doctor and my mother talking in the corridor outside.  By the time I got back to the bed, my grandmother had lost consciousness and never regained it.  The doctor examined her and the morphine was added to her drip while my mother and I continued to sit with her, prayer book ready.  But it was the gentleness of that last caring communication with my grandmother which I felt transcended my ordinary experiences, in a way that informs my work with patients in pain.