Like more and more cancer patients today, I have outlived several prognoses and am still hanging around, in a diminished life, trying to outlive the latest. Sooner or later, all of us get swept up into one or another of the collectively available cancer story lines in the culture.
Like more and more cancer patients today, I have outlived several prognoses and am still hanging around, in a diminished life, trying to outlive the latest. Sooner or later, all of us get swept up into one or another of the collectively available cancer story lines in the culture. The following reflections come from more than 5 years of telling myself such stories, listening to fellow patients tell me theirs, having friends or doctors tell me one of these stories about myself (eg, “You’re a fighter!” [not really] . . . “You have such a great attitude” [no] . . . “You must have learned so much about yourself” [yes and no], etc).
Often, when I try my hardest to honestly relate what has happened or is happening to me, I find that people hear me selectively, tending to mold my story into 1 of the 2 basic stories I’ve identified. At other times I’ve caught myself inwardly trying to create one of these narratives, sometimes for months on end. Life gets hard without a script. My own up-and-down course increasingly refuses to fit into a coherent story line the longer it goes on. (The longer any of us survive, the more this tends to be the case.)
I aim here not to relate yet another cancer autobiography but to use my experience (1) to break down some of the limiting boundaries of story itself that may isolate cancer patients and their loved ones, each from the other, knowing surely that my readership includes both groups, and (2) to show how any story one tells one’s self may foreclose possibilities both for living life fully and for treatment and survival.
Each of these stories, by the way, can be done with or without God and with or without actually dying. The 2 stories are as follows.
This story is about overcoming. It is the typical willpower/mastery, American Dream, up-by-the-bootstraps, Norman Vincent Peale–type narrative (“You’re a fighter!”), in which the patient never gives up, never says die, stays “positive” in word and deed, never lies in bed despairing when he/she could possibly get up and get some exercise . . . you get the idea. It conforms with mainstream America’s denial of all unpleasant things that are not preludes to more “riches” of some sort-even if said riches are not recovery but the proverbial “good,” inspiring, exemplary death (“He was a fighter to the end; he never lost his good attitude,” etc). You see this a lot in obituary columns, which people in my situation tend to read, and to which they feel inadequate by comparison. The medical system especially is often geared to seeing people this way and wanting them to be this way. When one is doing well, one often gets the you’re-a-fighter/ what-an-attitude comments from doctors. Nurses are who you want to see first when things have gone wrong.
The Hero’s Journey
This “alternative” narrative is about spiritual refinement or maturation of the personality through a series of drastic losses and perilous tests. It derives, often in distorted and oversimplified form, from sources such as the Odyssey, the Book of Job, Jung, and Joseph Campbell. And it finally turns out to be less of an alternative than it seems on the surface. People from my neck of the psychometric woods, the more “sensitive” and/or less denial-capable types (patients and loved ones) are attracted to this story line because at least it permits despair and loss of faith as real, valid experiences that one can live through and even learn from. In the first story line, of course, despair is a weakness, or worse, a sin in the God version.
The ever more mainstream, “alternative” culture supports this second, spiritual-journey tale in the form of numerous memoirs and self-help books and in the attitudes of various health practitioners and well-meaning “spiritual” friends (which is not to say, fortunately, that all such books and spiritual friends thoroughly fall for it). As a narrative, its underlying connection with the first is that it, too, requires denial: denial of the randomness, the disproportionate nature and (in the God version) downright cruelty of the suffering endured, or inflicted upon, patients, even if they die in some more enlightened, loving and forgiving state-again, the promised “riches”-which is not always the case!
The need to know “why”
So, our 2 stories differ more in style than substance. There is a standard of judgment, there are the people who have supposedly aced one or the other narratives, and we read or hear and compare ourselves unfavorably to their stories. Who really knows the inner lives of these “heroes”? My years of sitting next to some of them in chemotherapy chairs from Birmingham, England, to Little Rock, Ark, as well as my own struggles with myself and with people’s “hero” projections onto me, tell of more complicated and individual inner situations. But one thing we all share. This is the dread of flunking out. It’s the same sort of reaction most of us have already had to the simple-minded “single solution” tales we heard at the time of first cancer diagnosis: so-and-so did a macrobiotic diet. So-and-so did watercolors every day, etc. I’m flunking, I’m flunking. . . . But somehow, either early in the course or later, it’s much harder to accept that “the race is not to the swift [my emphasis] . . . time and chance happeneth to them all,” as the author of Ecclesiastes wrote in the third century B.C.
Creating some quasi-parental judge in one’s mind or in Heaven, even if we ourselves don’t make the grade, is apparently easier to take than unpredictable, random loss. Martin Seligman’s famous monkeys needed a reliable warning, a knowledge of “when” to survive repeated electric shocks without developing posttraumatic stress disorder–like symptoms. I have often written that we humans, in comparable life situations, will do almost anything with our superior cognitive powers to invent a reliable “why.” One must assume that nature knows best and that these explanatory “why stories” have survival value, even healing potential. But this is only true up to a point for some of us who are blessed or cursed with insight into the process (and living long enough with cancer does tend to confer this dubious blessing). Sooner or later the stories let us down.
Telling myself a story-for example, a dramatic story No. 2 of a hero trying to stay exquisitely aware and honest, writing feverishly through long winter nights in England as I faced my own possible death-got to be a trap. What if I woke up and wanted to be unaware one day, or wanted to lie to myself, or do nothing but play guitar for the duration? Or, most important, what if I didn’t die, but just dragged along in some boring long-term illness. Or even: what if mundane, linear Western medical science progressed and I got totally better? But such was not the stuff of myth, I realized. One had to admit that either tragic-but-enlightened death or retreat to a Himalayan monastery made by far the better story! In the mythic story I would have to become fully, gloriously alive in some idealized way that does not correspond to the textures of real human liv-ing, manifesting through my written words, perhaps, a Bodhisattva! Some of my well-meaning correspondents seemed unconsciously to encourage my inspiring literary performance. I switched to guitar in the nick of time.
This personal example applies only to me, but I submit that all such stories, whether they fall into my rough No. 1 and No. 2 categories, can wield incredible yet subtle power over those of us who live and die with cancer. They create inward attitudes that become self-fulfilling prophecies. They foreclose possibilities for new endeavors, new relationships, and unexpected sources of healing or of solace. They may also lead us to ignore or minimize promising options for further medical treatment.
Returning to my own example, I also need, at the present moment, to be able to look at the reality of my quite possible early death without a myth in the way. If I die it will be a mess, not a heart-warming movie scene. There will be a lot of loose ends, hurts-never-apologized-for, poems half-written, songs never learned, events in my children’s lives not participated in, lovely years with my wife never lived, friends never seen again, great meals not eaten, etc. And getting there will be no fun either. I am a person of flickering but persistent faith, a faith based not on the promise of happy endings but instead on recurrent perceptions of an underlying connectedness in things. I have no particular belief in an individual afterlife in which I remain recognizably me. Something of me may go on but perhaps only the deepest part, of which I have been only occasionally, indirectly aware. The fact is that I love this ego-based life of being me as I know me, doing what I like to do. I do not want to leave it.
To conclude. Among my best allies against the tyranny of collective stories have been the kinds of simple solace that are unique for each of us: in my case, reading, traditional prayer, walking the dog, playing my instruments. Beyond those, I have found that starting new things is the best defense against the suffocating demons of “closure” and “tying up loose ends.” Make more loose ends! As long as you are really living, there will be loose ends! And the best allies of all remain the friends, family, and colleagues who have been able, through it all, to finally hear what I am really saying about my experience. I thank God for them. I also hope that these words may help some who find themselves telling a cancer story, or trapped in one, that does not fit and that saps the unpredictable force of even a seriously threatened life.