Giving Voice to Mayling's Story
Arbore, Patrick, Aging Today
Mayling, a Chinese woman who had been diagnosed with stomach cancer 17 years earlier, taught me a great deal about suffering. She had bouts of intense physical pain that were being treated by a palliative care nurse specialist. As the director of the Center for Elderly Suicide Prevention and Grief Related Services at the Institute on Aging in San Francisco, I was asked to see Mayling.
Even though Mayling's physical pain was being treated with a variety of medications, she still seemed to be suffering. She told me, "I can't even sit. Is this a way to live? Is this what people call quality of life? I don't see any meaning, so why go on? There is no logic, no explanation, no understanding. . . . Fighting this disease is a solitary experience now. Regardless of how many people are around me, I am still the only one who has to experience the pain and live with the fear."
I learned that Mayling was very worried about what would happen to her husband when she died. Her suffering was certainly related to her physical pain, but it also was caused by the real, human dilemmas that surfaced in the process of her living and dying. As a helping professional, I needed to be very skillful in exploring and addressing the psychosocial issues that were causing distress in Mayling's life.
When I called her nurse and physician for additional pain medications, I secretly hoped the medication would be an easy answer. In. fact, it would not have been the answer at all, but rather a way to alleviate my own uncomfortable, helpless feelings. Instead, it would have been a displacement of my own anxiety into a concrete, supposedly practical attempt to alleviate Mayling's suffering.
At one point, when Mayling was tearful and despairing, I asked her, "What are you mourning right now?" She said through her tears, "I never imagined that my life could turn out like this. I used to be quite proud of myself, especially the way I managed pain. But now the pain seems beyond me. I have absolutely no control over what I can do. Everything is about niy body and how it can handle food or medications or pain."
I realized that I needed to support Mayling in mourning her loss of identity as a strong person who had control. She also needed to mourn that the whole focus of her life had become the management of her symptoms at the expense of all joys, other efforts and interests. To determine how I could best support her in her mourning, I first examined my own responses: I needed to see Mayling as someone who was not only in the process of dying, but also as someone with a full life apart from her illness. So I asked her about her life: how she came to the United States; how she met her husband; what she had learned; what her life passions were.
To help Mayling give voice to her lament, I asked her to describe the pain, where it originated and how it changed. I validated the ineffectual quality of language to describe certain experiences and encouraged her use of metaphors, images and analogies. Mayling responded, "The tumors are pushing against the liver. …