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Of Dragons and Garden Peas — A Cancer Patient Talks to Doctors

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WHEN I first realized that I might have cancer, I felt immediately that I had entered a special place, a place I came to call “The Land of the Sick People.” The most disconcerting thing, however, was not that I found that place terrifying and unfamiliar, but that I found it so ordinary, so banal. I didn’t feel different, didn’t feel that my life had radically changed at the moment the word cancer became attached to it. The same rules still held. What had changed, however, was other people’s perceptions of me. Unconsciously, even with a certain amount of kindness, everyone — with the single rather extraordinary exception of my husband — regarded me as someone who had been altered irrevocably. I don’t want to exaggerate my feeling of alienation or to give the impression that it was in any way dramatic. I have no horror stories of the kind I read a few years ago in the New York Times; people didn’t move their desks away from me at the office or refuse to let their children play with my children at school because they thought that cancer was catching. My friends are all too sophisticated and too sensitive for that kind of behavior. Their distance from me was marked most of all by their inability to understand the ordinariness, the banality of what was happening to me. They marveled at how well I was “coping with cancer.” I had become special, no longer like them. Their genuine concern for what had happened to me, and their complete separateness from it, expressed exactly what I had felt all my life about anyone I had ever known who had experienced tragedy.

When asked to speak to a group of doctors and medical students about what it was like to be a cancer patient, I worried for a long time about what I should say. It was a perfect opportunity — every patient’s fantasy — to complain about doctors’ insensitivity, nurses who couldn’t draw blood properly, and perhaps even the awful food in hospitals. Or, instead, I could present myself as the good patient, full of uplifting thoughts about how much I had learned from having cancer. But, unlike many people, I had had very good experiences with doctors and hospitals. And the role of the brave patient troubled me, because I was afraid that all the brave things I said might no longer hold if I got sick again. I had to think about this a great deal during the first two years after my operation as I watched my best friend live out my own worst nightmares. She discovered that she had cancer several months after I did. Several months after that, she discovered that it had metastasized; she underwent eight operations during the next year and a half before she died. All my brave talk was tested by her illness as it has not yet been tested by mine.

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And so I decided not to talk about the things that separate those of us who have cancer from those who do not. I decided that the only relevant thing for me to talk about was the one thing that we all have most in common. We are all afraid of dying.

Our fear of death makes it essential to maintain a distance between ourselves and anyone who is threatened by death. Denying our connection to the precariousness of others’ lives is a way of pretending that we are immortal. We need this deception — it is one of the ways we stay sane — but we also need to be prepared for the times when it doesn’t work. For doctors, who confront death when they go to work in the morning as routinely as other people deal with balance sheets and computer printouts, and for me, to whom a chest x-ray or a blood test will never again be a simple, routine procedure, it is particularly important to face the fact of death squarely, to talk about it with one another.

Cancer connects us to one another because having cancer is an embodiment of the existential paradox that we all experience: we feel that we are immortal, yet we know that we will die. To Tolstoy’s Ivan Ilyich, the syllogism he had learned as a child, “‘Caius is a man, men are mortal, therefore Caius is mortal,’ had always seemed… correct as applied to Caius but certainly not as applied to himself.” Like Ivan Ilyich, we all construct an elaborate set of defense mechanisms to separate ourselves from Caius. To anyone who has had cancer, these defense mechanisms become talismans that we invest with a kind of magic. These talismans are essential to our sanity, and yet they need to be examined.

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First of all, we believe in the magic of doctors and medicine. The purpose of a talisman is to give us control over the things we are afraid of. Doctors and patients are accomplices in staging a kind of drama in which we pretend that doctors have the power to keep us well. The very best doctors — and I have had the very best — share their power with their patients and try to give us the information that we need to control our own treatment. Whenever I am threatened by panic, my doctor sits me down and tells me something concrete. He draws a picture of my lung, or my lymph nodes; he explains as well as he can how cancer cells work and what might be happening in my body. Together, we approach my disease intelligently and rationally, as a problem to be solved, an exercise in logic to be worked out. Of course, through knowledge, through medicine, through intelligence, we do have some control. But at best this control is limited, and there is always the danger that the disease I have won’t behave rationally and respond to the intelligent argument we have constructed. Cancer cells, more than anything else in nature, are likely to behave irrationally. If we think that doctors and medicine can always protect us, we are in danger of losing faith in doctors and medicine when their magic doesn’t work. The physician who fails to keep us well is like an unsuccessful witch doctor; we have to drive him out of the tribe and look for a more powerful kind of magic.

The reverse of this, of course, is that the patient becomes a kind of talisman for the doctor. Doctors defy death by keeping people alive. To a patient, it becomes immediately clear that the best way to please a doctor is to be healthy. If you can’t manage that, the next best thing is to be well-behaved. (Sometimes the difference between being healthy and being well-behaved becomes blurred in a hospital, so that it almost seems as if being sick were being badly behaved.) If we get well, we help our doctors succeed; if we are sick, we have failed. Patients often say that their doctors seem angry with them when they don’t respond to treatment. I think that this phenomenon is more than patients’ paranoia or the result of overdeveloped medical egos. It is the fear of death again. It is necessary for doctors to become a bit angry with patients who are dying, if only as a way of separating themselves from someone in whom they have invested a good bit of time and probably a good bit of caring. We all do this to people who are sick. I can remember being terribly angry with my mother, who was prematurely senile, for a long time. Somehow I needed to think that it was her fault that she was sick, because her illness frightened me so much. I was also angry with my friend who died of cancer. I felt that she had let me down, that perhaps she hadn’t fought hard enough. It was important for me to find reasons for her death, to find things that she might have done to cause it, as a way of separating myself from her and as a way of thinking that I would somehow have behaved differently, that I would somehow have been able to stay alive.

So, once we have recognized the limitations of the magic of doctors and medicine, where are we? We have to turn to our own magic, to our ability to “control” our bodies. For people who don’t have cancer, this often takes the form of jogging and exotic diets and transcendental meditation. For people who have cancer, it takes the form of conscious development of the will to live. For a long time after I found out that I had cancer, I loved hearing stories about people who had simply decided that they would not be sick. I remember one story about a man who had a lung tumor and a wife with breast cancer and several children to support; he said,”I simply can’t afford to be sick.” Somehow the tumor went away. I think I suspected that there was a missing part to this story when I heard it, but there was also something that sounded right to me. I knew what he meant. I also found the fact that I had cancer unacceptable; the thought that my children might grow up without me was as ridiculous as the thought that I might forget to make appointments for their dental checkups and polio shots. I simply had to be there. Of course, doctors give a lot of credence to the power of the will over illness, but I have always suspected that the stories in medical books about this power might also have missing parts. My friend who died wanted to live more than anyone I have ever known. The talisman of will didn’t work for her.

The need to exert some kind of control over the irrational forces that we imagine are loose in our bodies also results in what I have come to recognize as the “brave act” put on by people who have cancer. We all do it. The blood-count line at Memorial Hospital can be one of the cheeriest places in New York on certain mornings. It was on this line, during my first visit to Memorial, that a young leukemia patient in remission told me, “They treat lung cancer like the common cold around here.” (Believe me, that was the cheeriest thing anyone had said to me in months.) While waiting for blood counts, I have heard stories from people with lymphoma who were given up for dead in other hospitals and who are feeling terrific. The atmosphere in that line suggests a gathering of knights who have just slain a bunch of dragons. But there are always people in the line who don’t say anything at all, and I always wonder if they have at other times felt the exhilaration felt by those of us who are well. We all know, at least, that the dragons are never quite dead and might at any time be aroused, ready for another fight. But our brave act is important. It is one of the ways we stay alive, and it is the way that we convince those who live in “The Land of the Well People” that we aren’t all that different from them.

As much as I rely on the talisman of the will, I know that believing in it too much can lead to another kind of deception. There has been a great deal written (mostly by psychiatrists) about why people get cancer and which personality types are most likely to get it. Susan Sontag has pointed out that this explanation of cancer parallels the explanations for tuberculosis that were popular before the discovery of the tubercle bacillus. But it is reassuring to think that people get cancer because of their personalities, because that implies that we have some control over whether we get it. (On the other hand, if people won’t give up smoking to avoid cancer, I don’t see how they can be expected to change their personalities on the basis of far less compelling evidence.) The trouble with this explanation of cancer is the trouble with any talisman: it is only useful when its charms are working. If I get sick, does that mean that my will to live isn’t strong enough? Is being sick a moral and psychological failure? If I feel successful, as if I had slain a dragon, because I am well, should I feel guilty, as if I have failed, if I get sick?

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One of the ways that all of us avoid thinking about death is by concentrating on the details of our daily lives. The work that we do every day and the people we love — the fabric of our lives — convince us that we are alive and that we will stay alive. William Saroyan said in a recent book, “Why am I writing this book? To save my life, to keep from dying, of course. That is why we get up in the morning.” Getting up in the morning seems particularly miraculous after having seriously considered the possibility that these mornings might be limited. A year after I had my lung removed, my doctors asked me what I cared about most. I was about to go to Nova Scotia, where we have a summer home, and where I had not been able to go the previous summer because I was having radiation treatments, and I told him that what was most important to me was garden peas. Not the peas themselves, of course, though they were particularly good that year. What was extraordinary to me after that year was that I could again think that peas were important, that I could concentrate on the details of when to plant them and how much mulch they would need instead of thinking about platelets and white cells. I cherished the privilege of thinking about trivia. Thinking about death can make the details of our lives seem unimportant, and so, paradoxically, they become a burden — too much trouble to think about. This is the real meaning of depression: feeling weighed down by the concrete, unable to make the effort to move objects around, overcome by ennui. It is the fear of death that causes that ennui, because the fear of death ties us too much to the physical. We think too much about our bodies, and our bodies become too concrete — machines not functioning properly.

The other difficulty with the talisman of the moment is that it is often the very preciousness of these moments that makes the thought of death so painful. As my friend got closer to death she became rather removed from those she loved the most. She seemed to have gone to some place where we couldn’t reach her — to have died what doctors sometimes call a “premature death.” I much preferred to think of her enjoying precious moments. I remembered the almost ritualistic way she had her hair cut and tied in satin ribbons before brain surgery, the funny, somehow joyful afternoon that we spent trying wigs on her newly shaved head. Those moments made it seem as if it wasn’t so bad to have cancer. But of course it was bad. It was unspeakably bad, and toward the end she couldn’t bear to speak about it or to be too close to the people she didn’t want to leave. The strength of my love for my children, my husband, my life, even my garden peas has probably been more important than anything else in keeping me alive. The intensity of this love is also what makes me so terrified of dying.

For many, of course, a response to the existential paradox is religion — Kierkegaard’s irrational leap toward faith. It is no coincidence that such a high number of conversions take place in cancer hospitals; there is even a group of Catholic nurses in New York who are referred to by other members of their hospital staff as “the death squad.” I don’t mean to belittle such conversions or any help that religion can give to anyone. I am at this point in my life simply unqualified to talk about the power of this particular talisman.

In considering some of the talismans we all use to deny death, I don’t mean to suggest that these talismans should be abandoned. However, their limits must be acknowledged. Ernest Becker, in The Denial of Death, says that “skepticism is a more radical experience, a more manly confrontation of potential meaninglessness than mysticism.” The most important thing I know now that I didn’t know four years ago is that this “potential meaninglessness” can in fact be confronted. As much as I rely on my talismans — my doctors, my will, my husband, my children, and my garden peas — I know that from time to time I will have to confront what Conrad described as “the horror.” I know that we can — all of us — confront that horror and not be destroyed by it, even, to some extent, be enhanced by it. To quote Becker again: “I think that taking life seriously means something such as this: that whatever man does on this planet has to be done in the lived truth of the terror of creation, of the grotesque, of the rumble of panic underneath everything. Otherwise it is false.”

It astonishes me that having faced the terror, we continue to live, even to live with a great deal of joy. It is commonplace for people who have cancer — particularly those who feel as well as I do — to talk about how much richer their lives are because they have confronted death. Yes, my life is very rich. I have even begun to understand that wonderful line in King Lear, “Ripeness is all.” I suppose that becoming ripe means finding out that none of the really important questions have answers. I wish that life had devised a less terrifying, less risky way of making me ripe. But I wasn’t given any choice about this.

William Saroyan said recently, “I’m growing old! I’m falling apart! And it’s VERY INTERESTING!” I’d be willing to bet that Mr. Saroyan, like me, would much rather be young and all in one piece. But some-how his longing for youth and wholeness doesn’t destroy him or stop him from getting up in the morning and writing, as he says, to save his life. We will never kill the dragon. But each morning we confront him. Then we give our children breakfast, perhaps put a bit more mulch on the peas, and hope that we can convince the dragon to stay away for a while longer.

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