My walking and balance have grown considerably worse over time, but I do not fall regularly. And since I have been treated by a naturopath, Dr. Ember Carianna, and by Susan Trider (both in Florida), precisely to counteract the effects of radiation and chemotherapy, I have been walking better. Susan teaches a visualization in which the patient superimposes the figure 8 on the part of the body that is troubled. She has an original theory about this figure, about which she is preparing a thesis. The figure 8, which is of course the symbol for infinity and the shape of the Möbius strip, is also a “natural” motion: if one closes one’s eyes while standing up, the body automatically moves in a figure 8 pattern. I imagine it whirling through my cerebellum, my spinal disks, my bladder, and other hurt parts of my body. Imagining it swirling around me as I walk down halls seems to keep me straighter. One of Susan’s patients, a paraplegic, began to move after a long period of doing this visualization. Susan has for several years given me craniosacral treatments when I am in Florida. The rest of the therapy—visualization of 8s, and Dr. Carianna’s herbal and homeopathic remedies—is too recent for me to be able to say much beyond the fact that it has helped me in only a couple of months.
My present state is merely my present state—it may change tomorrow, and probably for the worse. Indeed, my urinary problems did worsen during a trip to England this past June, and when I returned, I called Edie to ask her to prescribe a medication that had helped a professional woman golfer with interstitial cystitis. Instead she sent me to Dr. Suzanne Frye, a urologist, who expects to relieve my symptoms through a hospital procedure that will not require an overnight stay. I trust her because she performed a cystoscopy on me in her office, which I barely felt; the same procedure, performed by my last urologist, had me screaming on the table. Disgusted, he told me the problem was that I was too small. But the problem was his ignorance of female bodies. I think male urologists should hang out shingles reading “Practice Limited to Men Only”; they should not treat patients whose bodies they do not comprehend, charging money, causing pain, and leaving them dangling. Since I wrote this paragraph, Dr. Frye has given me a series of treatments which have much alleviated my symptoms. I now waken only twice or three times a night, and hope for even more improvement in the future. In addition, acupuncture has increased the sensation in my feet.
I was recently diagnosed with diabetes. Since I am not overweight, do not often eat sweets, and have no diabetes in my family line, I am bewildered by this. I must limit even further my already limited diet and stick needles into myself twice a day every other day to keep track of my blood sugar. Other than that, the diabetes is of no concern. It was just one more blow to a being nearly numb to them.
Just about every system in my body has been damaged to some degree by chemotherapy or radiation. I take fourteen prescription medications every day of my life, some twice a day; and five more on occasion. I spend over a thousand dollars a month on medications, not covered by insurance. I spend more than half that amount each month on physical therapy, which I will probably need for the rest of my life. Nor is this covered by insurance. The natural remedies are cheaper: I take six of these at present. The only problem is that I take medications all day long.
I look like someone who has been sick. I aged greatly during my illness: my skin wrinkled when I lost weight and from the drying out of my body by chemotherapy; some of this faded, but some lasts. Strangers seem to recognize simply by glancing at me that I am in some way impaired; they often reach out a hand to help me. This is both gratifying and upsetting. It always makes me happy when people act helpful, kind, altruistic; but on the other hand, I dislike being continually reminded of how disabled I appear. When walking, I like to rest my arm on another’s arm, for the support, not of strength, but of steadiness. I know I walk straighter if I walk with someone else. But often the people holding my arm warn me about a step coming up, and I want to snarl (like my grouchy mother in her old age), “I’m dizzy and unstable, not blind!” Sometimes I do.
It has been rumored that chemotherapy destroys one’s sexual drive, and certainly that seems to be the case with me. I had already passed the time of life in which desire is fierce, most compelling (which is the best reason I know for acting on desire when you feel it: it is not a permanent part of the somatopsychic complex). But I feel it not at all anymore. Of course, nothing has provoked it recently—and at my age, it takes something powerful to provoke desire. So I can’t be sure. But I am glad I let myself experience sex widely and richly while I could.
It is fortunate that I was always a sedentary person, that the activities I love are sedentary. I like to write, read, paint, play the piano, talk to friends—all of which are done sitting down. Suppose I’d been a professional golfer? Or a mountain climber? But if I had been, my leg muscles would be stronger, and different things would be wrong with me now. I’m convinced of this: what goes first in illness are the systems that were weak before. My walk was always unsteady, even when I was healthy, because I exercised my legs insufficiently as a child; kidney problems are congenital in my maternal family.
Despite everything, I retain a kind of vigor, an enthusiasm and a passion that do not diminish, even when I wonder where it is bubbling up from. This means I can have fun. I look forward to and enjoy almost everything I do in the course of a day. The things I find unpleasant (most doctors’ visits—but not those to Edie Langner—waiting in a doctor’s office or hospital lab, being caught in New York City traffic jams, for example) are unavoidable and happen to people who are not sick. But my years of trekking in the elephant dung have mostly ended.
In past times, it was customary for authors to beg pardon of the (usually) aristocratic patron-reader for taking up her or his time. Even a great poet like Edmund Spenser would apologize for his lack of skill, offering fervent assurances of his desire to please. Such disclaimers do not fall comfortably on twentieth-century ears, but as I finish this book, I feel a need to ask the reader’s indulgence for my long recital of personal ills. I feel uncomfortably like someone who obsessively subjects others to hours of description of her latest operation. Perhaps I feel this way because although I wrote this book in the hope that others might find it useful or interesting, I also needed to write it for personal reasons.
Over the past four years, when people asked what had happened to me, I would offer a brief explanation. If they were curious and probed, however, I found myself telling them the whole story. I told it over and over. It was not the telling that was a problem; it was my bewilderment about why I needed to tell it and how I could tell it over and over without tiring of it. Worst of all, I wondered why I felt a knot of tearfulness rising in my throat, especially when I spoke of events surrounding the coma. I wondered if I was suppressing some unfinished psychological business.
Judith Herman writes that “unassimilated traumatic experiences are stored in a special kind of ‘active memory,’ which has an ‘intrinsic tendency to repeat the representation of contents.’ The trauma is resolved only when the survivor develops a new mental ‘schema’ for understanding what has happened.”* She quotes Doris Lessing’s description, in Under My Skin, of her father’s stories of World War I, which “he told again and again, with the same words and gestures, in stereotyped phrases” (Herman, p. 38). Although I had not reached this point, I felt that if I was ever going to be able to lay the past to rest, I must in some systematic way deal with my memories and glean the memories of the people close to me. I feel this has happened through writing this book, by what magical means I don’t know.
Many people expect accounts by survivors of serious illness or accident to affirm some intuition of deity or purpose. I can offer neither of these. At no time in my illness or during my recovery did I believe that I was part of any larger purpose, a pawn in some god’s plan. Nor did I feel selected for a special ordeal, as people seem to who ask, “Why me?” When people insist—always with a knowing look, an assumption of superior knowledge—that I was saved for a reason, becau
se I am special, I think, but do not say: Does that mean that among the uncountable millions who died in Auschwitz, Hiroshima, Bhopal, or the most recent massacre by a madman with a repeating rifle, there was not one who was special? Only I am special? Only I, of all the people who develop esophageal cancer, mattered enough to save? The idea that one was saved because one is intended to accomplish something is offensive: it assumes that doing something in the world is of greater importance than simply being.
Some may protest that if there is no larger purpose to our lives, they have no meaning. But what is the meaning of statements that life has meaning, or hasn’t? Why should life have a meaning outside ourselves? Is it necessary, for our peace of mind, that we fit into a scheme larger than ourselves, in which we are each little cogs contributing to the sum of good or evil? We do not even know, really, what good and evil are: it seems to me this is the subject on which humans are most deluded. The demand that life have a purpose beyond itself diminishes life. We have enough purpose for our own lives: we want to feel alive, we want certain things—not just materialities, but experiences. We want to be important to at least one other person and loved by many people; we want to use our abilities, whatever they are. We want to contribute to our little—or larger—worlds and be respected within them. We judge our lives and ourselves by how closely we have come to achieving the things we desire, by how we feel about ourselves, and most of all by the quality of our daily lives. We do not need more. To imagine a deity who resembles a schoolmaster keeping a list of merits and demerits on each human soul seems to me infantile. What would be the point of that in a world in which evil and ugliness so far outmeasure virtue that we are amazed when we discover goodness?
When we die, all we are possessed of is our experience. It is one part of our lives that is largely in our own control. We have no control over where we are born, our sex, color, or size, our intelligence and talents; we have only limited ability to change our class or economic status; and no control at all over the twists of history, which with utter caprice and randomness can toss us into a death camp, a peaceful quiet period, an economic depression, or an exciting period of renaissance. Most of us spend much of our lives simply coming to terms with the inexorable conditions of our lives. But we ourselves choose the way we take, deal with, think and feel about, and respond to those conditions. This area of life, the experiential, is most completely ours; it is what defines us and the quality of our lives. It—not accomplishment, wealth, worldly power, or fame—is the only real measure of a life. And only we ourselves can assign our lives a “grade.” The richer, deeper, and more varied our thoughts and feelings, the wider and richer our interactions and connections, the richer our life. When we are old and look back, it is only this that matters. The rest is all props.
Surviving an illness or a disaster is largely a matter of luck. Although Americans in particular like to pretend that we can control our fates by not smoking, drinking alcohol, indulging in excessive sex (or the “wrong” kind)—if we exercise and eat properly, we can live forever—I find this idea superstitious. Good habits may help us live longer, if we don’t die in a plane crash or from a terrorist’s bomb. Yet my pre-illness habits were far from healthy, and I lived. No one knows why. The Sloan-Kettering doctors shrug off the question: they simply don’t know. A hospital newsletter described me as a “miracle” patient. I asked my oncologist if he would write up my case. “No,” he said. “I didn’t do anything different with you than with any other patient. I don’t know why you lived. I can’t take credit for it.”
I also reject the automatic assumption—almost universal—that life is always better than death. People cling to this belief unyieldingly and unthinkingly, but I have always questioned it, and when I was “dead,” as I felt it, I liked the incredible calm and quiet—a calm far deeper than any I felt in life. When I swam up from it, or tried to sink back in it (which happened frequently after I first woke up), I was eager to return to that velvet tranquillity. Death is a friend. I still feel this to be true.
When I was about eighteen, I read André Malraux’s Man’s Fate, a novel about the Chinese Civil War that deeply impressed and moved me at the time. Of the many scenes that embedded themselves in my memory, one was of Kyo—the hero—in prison. A guard beats an old drunken man cruelly; Kyo, standing in his cage holding on to the bars, protests. The guard comes over to him and smacks his hand hard with the truncheon, or whatever he is using. It is horribly painful, but Kyo refuses to move his hands. Later, he is offered his life if he will betray his comrades. If he chooses death, he will be killed, like them, by being thrown in the tank of boiling water in a train steam engine—Chiang Kai-shek’s method of killing the Communists who in good faith surrendered to him in Shanghai. Kyo chooses death.
At the time I read this, I had never questioned that life was the ultimate good. I thought about it long and as deeply as an eighteen-year-old can; life did seem to me the highest good, and I questioned those who claimed honor, or faith to a deity or a fatherland, to supersede the value of life itself. On the other hand, there are terms of life that are not acceptable, terms so depraved that they would poison whatever life was saved by accepting them. I decided then to consider moot the question of ultimate good, and I have never been able to move beyond that.
Before I fell ill, I worked for over ten years on a history of women that covered the period from prehistory to the present. In many of the societies that I described, women’s lot was abominable; laws regarding women were stringent and cruel, and it seemed that so were women’s lives. I was wrenched and anguished as I read and wrote about these periods, and the thought often crossed my mind that death was a blessing: at least the poor souls were now at rest.
Ordinary people rarely encounter a situation like Kyo’s; ordinary people choose death for undramatic reasons that are not necessarily moral. To choose death when one is in terrible pain (physical or emotional), is old and helpless and dependent, or faces serious debilitation, cannot be labeled moral or immoral. It is a practical decision, made for practical reasons. The choice to die when one is in such circumstances is a moral decision only if suffering is considered a moral good—the suffering not only of the chooser but also of the people involved with her or him. And suffering is considered a good only within an authoritarian ethos, a belief that obedience to and fear of superiors, the state, or a god, is necessary. Such an ethos teaches that the individual should defer to the will of some higher power and die only when it decrees. It condemns as apostasy most efforts to take one’s life in one’s hands, to live by one’s own will. I have rejected this ethos ever since I could think—as a life choice, not a death choice.
Moreover, the fact is that most people cling to life tenaciously. However sick they may be, in whatever pain, people continue to regard life as precious. This is a profound and almost universal truth. People who are miserable and barely able to wrench out a smile grit their teeth and insist ferociously on going on living. There is a reason why the people in the death camps were heartened by the rare suicide: although life was not worth living for the internees, they went on passively doing so. Suicide was a heroic act. It is said that Moishe Feldenkrais, who invented the Feldenkrais method of physiotherapy, went on choosing life even though he was paralyzed almost completely at the end; and a recently translated book describes the life, clung to, of a man who could move only his eyelid. Comatose, my mother clung to life for five weeks, although her last experience in life was of humiliation, as she tried to stand up and found herself tied to a chair and cried out in terror to my father to take her home. Ruth McKechnie clung to life even after they removed her life supports.
We all know of cases in which doctors say that if they remove someone from a respirator, she or he will immediately die. After much agonizing, the family finally decides to do so, and yet the patient does not die but holds on for days or weeks, comatose yet willful, clinging to life. My father-in-law, Robert French, fell ill in his thirties. He was in agony, but no do
ctor or clinic was able to diagnose his disease. After years of serious illness (he was unable to work, unable even to move easily, in agony when he sat up, unable to eat), he went to the Mayo Clinic. They operated and found tuberculosis of the intestines; they surmised that in France during World War I, he had eaten meat exposed to poison gas, which rotted his innards. They removed most of his large intestine and sent him home to die. He lay in an upstairs bedroom for months. Every day, a local doctor visited him. Every day, the doctor, pitying his patient’s agony, said, “Bob, I’m leaving some extra morphine tablets here on the bedside table for you. If you need them, they’re there.” Bob never took them, no matter how terrible his pain. And one day, he rose from that bed to live for twenty years more.
I believe that most of us are like Bob French. I, having prepared myself for death, having in my rational mind accepted death, was gripped, each time I approached it, by something else, something deeper and grittier and more elemental. Some people call it will, an ambiguous term which, they say admiringly, I possess in great quantity. But I cannot take credit for something unconscious. I credit my survival of terminal cancer and a lethal coma to luck, my father’s family genes, and the love of my family and friends. But clearly I wanted to live, despite my frequent aspersions on the living state.
Since most people, even those in pain of body and mind, cling to life with something like desperation, we as a race take no risk in making a means of death accessible. When I was helpless after the coma, at my lowest, speaking to my friends of wanting to die, I know (and knew then) that if I had possessed the means of accomplishing my end, I would not have used it. I spoke of death daily but made no effort to kill myself. In fact, I was making a strong effort to get better. I was negotiating with life and death.
A Season in Hell Page 20
