This is my Zulu Family, From Top left Carrie (Yale), Mantombi (mama), Tayna (Yale) Me“Don’t feel sorry for me, I don’t want anyone to feel sorry for me. I’m here and I’m alive. Cancer didn’t beat me, I beat this cancer, if people feel for sorry for me they are concentrating on my cancer, and not on our friendship, love, or the conversation.” These are amazing words of wisdom spoken by a women with bladder cancer. This week I’m working at Chatsworth Hospice in greater Durban. For the last two days I’ve been going on home visits with two of the sisters at the hospice.
I am continually amazed at the “life lessons” and new perspective these patients have taught me. One is the healing power of Denial. It’s strange to think of Denial as helpful, but it allows us to take in information slowly, at a pace we can control. For this patient it is “denying the disease’s ability to control my life” and focuses one’s attention on things they can control. Control is a big word when your faced with a diagnosis and prognosis that is completely out of your control. One patient stated, “I don’t concentrate on the cancer, I concentrate on me. If I concentrate on the cancer I can’t stay positive and I miss out on what’s important, my friends and family because I am focused inward. What I need right now is my friends and family, my tea, and my garden. It’s a different attitude on life than I had before. When I get a pain here (pointing at back pain secondary to metastasis to her lumbar vertebrae), I say to it, damn pain! Get out…. It helps, its mind over matter.”
According to the sisters, many of the patients go through a transition of inward perspective to an outward perspective. At first many are overwhelmed by their prognosis and the concurrent change in life plans, goals, and hopes. Patients become detached from the world and sometimes isolate themselves from their support. The family also doesn’t know how to react, and will pull away from their loved one. Does any of us really know HOW to react to a poor prognosis? Of course, we just do whatever comes out of us, and that is exactly what we need to do at that time, and exactly what is right for us to do. Our job as compassionate witnesses for our dying friends or family is to be there for them with our ears and some actions and recognize what is healthy grief and what is not healthy grief.
Here are some normal and abnormal reactions:
Adaptive: Humor, Denial, Abstract anger, Anger against the disease, Crying, Fear, Realistic Hope, Sexual Drive, Bargaining
Non-Adaptive: Guilt, Pathological denial, Prolonged Rage, Anger against helpers, The “Impossible Quest,” Unrealistic Hope, Seduction, Manipulation
Adaptive behavior moves the inward perspective to and outward perspective. Outward perspective examples include finding meaning through reflection activities, pursuing relationships with family and friends, and on growing personal interests. I just wish that these patients and myself could incorporate this into our lives without having to experience a terrible diagnosis
As a doctor in training, I am use to focusing on the disease. Is it not a physician’s traditional purpose? That is, figure out what the etiology of the illness is and treat it. There is however a growing appreciation for holistic medicine, medicine that focuses on the whole persons health, including not only their physical health but also emotional, spiritual and social health. This may be why I am so attracted to hospice and palliative medicine. The focus is not on the disease, it’s on the person and helping them on the journey we all must go on… dying. But, its not about dying, its about living, putting life in perspective, controlling pain, maintaining dignity in our most vulnerable state, and supporting the family.
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