I never thought I'd be standing here as the show and tell cancer girl! Before ovarian cancer my life was based on the admittedly absurd and absolutely human assumption that I was immortal. During tx I operated on the equally absurd belief that my will to live could determine my fate. Currently in the ambiguity of remission, I frequent terra incognito la-la limbo-land where all bets are off. Surviving cancer is like learning a new dance it looks easier that it is and courage soon means being afraid and doing it anyway.
Gilda Radner once said "cancer is about the most unfunny thing in the world!" Feeling not safe in your body IS terrifying and certainly the wish to undo bad news is strong. Cancer is not just an uncontrollable proliferation of abnormal cells it happens not only in your cells but in your life. Cancer becomes a part of your biography.
I want to speak about some of my thoughts that continue to stand out due to my cancer experience. Samuel Johnson once dryly commented: "the prospect of death marvelously concentrates the mind". I think the important question is not why me? After all why anyone? Why not me?
As a modern society we have trouble dealing with cancer. Think of gonorrhea or AIDS as an illness they are fairly straightforward. But our society attaches a great deal of meaning and judgment to cancer as a sickness. Society has much more to say about those who contract it. An illness has medical and scientific dimensions, but as sickness it becomes a phenomenon loaded with cultural and social meaning. Because cancer as an illness is a disease about which very little is actually known it is therefore a sickness around which an enormous # of myths and stories have grown up. Because cancer is poorly understood as a sickness it has assumed awesome proportions in our society. We use cancer everyday as a cultural metaphor for something evil, out of control or mysterious. Recently I ONCE AGAIN read that "there is a cancer on the presidency" say what? Our relationship to cancer is stuck in a medieval worldview.
For example: the New Age self-help movement attempts to define the meaning of disease by prescribing a certain way the patient should think about cancer. What I found there was a rhetoric of individual responsibility. Eventually I found myself in an isolating prison of positive thinking. There is a sadness and irony in calling for people to heal themselves. We are here today because it takes much more than that. I once got a letter from a local fundamentalist Christian who wrote me that my illness was a punishment from god for some sin. This is not so different from the New Age's belief that illness is a lesson. There are those who say that if I have cancer I must have needed it in order to resolve some previous life issues rotting beneath the surface. Often the irrationality that "everything happens for a reason" swiftly follows. The implication that one's tumor is indicative of failure offends me down to my toes!! (It also gets all those polluting corporations off the hook. There are more self-help books espousing my responsibility for getting and curing cancer than there are books about corporate responsibility for putting carcinogens into the environment!) While regimens of self-management offer patients a sense of choice, autonomy and control at a time when they often feel taken over by disease or an alienating medical establishment, such an approach leaves those who do not triumph with a profound sense of failure. Those New Age views that make the sick individual solely responsible for healing assume a kind of fairness in the world: treat your body right, think positive thoughts and all will be well! Now I'm the first to say eat your tofu everyday! however, having the proper mental attitude only will not cure cancer. Positive thinking, visualization etc. are techniques that reduce stress and anxiety and helped me deal with tx side-effects, but they probably don't offer the edge we need to defeat cancer. Mind ALONE does not cause cancer and mind ALONE cannot cure it. We need more than Jiminy Cricket magical thinking and simplistic miracle cures that appeal to our desire for clear B/W answers that feed our illusory sense of control. Fear reduces one to wishful thinking. To tell people with cancer they need to think positive thoughts is to make them feel guilty if what they feel is fear or anger. What other disease prompts this suggestion!!!!! The last thing a cancer patient needs is to feel bad about feeling bad. I think having a life-threatening illness is difficult enough without having to achieve a pleasant attitude in the process!
My good friend Barbara sends me posts from the breast cancer listserv from time to time. I remember one woman with metastatic disease responding to a thread on "positive attitude" what does it mean? She wrote that death is integral to the way life is and some people are able to integrate this understanding and experience of reality into their life and self-image without sinking into depression. She stressed that ALL reality is meaningful and interesting however dark it may be. In fact, it is possible to achieve an intensity of living that becomes remarkable an adventure, albeit one in which moments of sheer terror or periods of deep sadness exist no less than times of deep satisfaction and joy. She wrote about a profound maturity of insight in this way of acceptance. It seems to me that it is easier to be impressed by this than unrelenting optimism that refuses to entertain the possibility that the disease will progress and eventually take my life. My breast cancer list sister wrote, "those whose optimism allows only belief that the disease can and will be overcome, do not or cannot consider and decisively select from the wide spectrum of possibilities for how one might spend the end period of one's life. From my perspective there is no doubt but that accepting that one's disease can't be conquered (if facts indicate this is the reality), can free one to POSITIVE possibilities that those who can't accept it will never understand, experience or yes, even enjoy".
Recently a patron came into the library asking for information to help her in supporting a friend recently dx with cancer. This made me re-think the difficulty people have finding a way to speak about cancer, serious illness or death. Sometimes the need of others to minimize my experience startles me. Sometimes the horror simply has to be stared down and cannot be changed into something unhorrible by smiling it away. I don't think darkness is something to turn away from it just increases the fear. Have you ever noticed the more you try not to think of something the bigger it becomes? I couldn't understand those who would say, "put the experience behind you". Not thinking about my body's suffering will not help me return to normalcy, and my life, the same as it ever was, has changed. Besides, recovering from cancer tx and living with cancer counts as a normal life. I don't ever want to forget this has happened to me. I want integration not repression.
As a society we need to get over the taboo that forbids us to speak about cancer. It's amazing how automatic words come out to protect us from reality. A cancer patient who may be fearing death often hears:
"don't think that way"
"just think how lucky you are fill-in-the-blank
"you never know"
I think fear of death must be looked at in the eye by those who think they are not dying. We are taught that when a person informs us: "I have cancer" or "I'm in deep shit here" we are to respond politely with, "Oh no..no you'll be fine". I want a different response. I want interest and curiosity. I want the same concern I'd get if I said that I had a broken leg. I want maybe "how awful" or "how are you doing" or "what's it like?" Acknowledgement of the disease is a good start.
Lastly, I would say don't feel compelled to compare. When a cancer patient responds to "how are you" with a serious answer don't say: "I too get tired or whatever". Sometimes cancer just has to speak for itself. It's not always necessary to attempt to FIX the emotions of the cancer patient. In addition, talking about everyone else's good prognosis story is not helpful to the metastatic patient. Sometimes all the cancer patient can do, like Blanche in Streetcar named Desire, is to rely on the kindness of strangers and you can be that helpful stranger. While volunteering for hospice, my sister found herself unable to verbally communicate with one of her patients. At a loss for a way to express her compassion she simply gave the woman a foot massage. Years ago as a scared and alone teenager entering a strange OR to give birth to a baby later adopted, a nurse held my hand. I will never forget her kindness. If you want to do something tender and tangible, hold that hand, rub those feet that are aching for a little sign that shows someone still cares enough about them to touch them. Don't hesitate, what is there to lose? There is only human warmth to gain.
TS Eliot claimed that human beings cannot stand too much reality. That reality states that 1 out 3 people will eventually get cancer. I say we drag cancer out of the closet acknowledge it and not cover it up with smiley faces and have a nice day non-conversations. Until we can successfully lobby the government to make research $ for the cancer cure a priority so that we can get beyond the medieval "cures" of the knife, poison and burn euphemistically called surgery, chemo and radiation. We need early detection and prevention. That is why we are here today Eleanor Roosevelt said "it's better to light a candle than curse the darkness" so lets get out the matches (so to speak) and make this a success!!!!!!!!!