Dr Stephen J. Gould internationally renowned paleontologist and evolutionary biologist who live a healthy and productive twenty years after he was diagnosed with peritoneal mesothelioma in 1982. When Dr. Gould died in 2002, he died from a form that completely unrelated cancer. In 1985 he wrote the following essay about the diagnosis and experience with the disease.
This is a beautiful essay about her determination to not let the simple statistics to determine the response mesothelioma. Many cancer patients, not just those who are diagnosed with mesothelioma, has been inspired by Dr. Gould's life and words.
"The Median Is not The Message"
My life has recently intersected, in a most personal way, two famous Mark Twain joke. One I will postpone until the end of this essay. The other (sometimes attributed to Disraeli), identifies three kinds of lies, each worse than the previous-lies, damned lies and statistics.
Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics acknowledged the steps that differ from an "average" or central tendency. The mean is our usual concept of average as a whole - add items and share them with the number of sharers (100 candy collected for five kids next Halloween will yield 20 to each in a just world). Median, a different measure central tendency, is the halfway point. If I line up five kids by height, the average child shorter than two and taller than the other two (who might have trouble getting the means of their candy). A politician in power might say with pride, "the average income of our citizens is $ 15,000 per year." Opposition leader would probably reply, "But half our citizens make less than $ 10,000 per year." Both are correct, but does not mention a statistic with a calm objectivity. First call mean, median two. (That's higher than the median in such cases because one millionaire may exceed hundreds of poor people in determining the average, but he can only balance a single beggar in calculating the average).
Larger problem of creating a common distrust or contempt for statistics is more troubling. Many people make profitable and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, supported by stereotypical attitudes based in Southern California, feelings are exalted as more "real" and the only proper basis for action if it feels good, do-while the intellect has received little attention as a hang-up obsolete elitism . Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics victory quantitative methods, and quantitative methods is the victory of sterility and death."
This is a personal story of statistics, properly interpreted, as a highly nurturant and life-giving. He declared holy war on the humble intellect by telling a little story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.
In July 1982, I learned that I suffered from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I returned after the operation, the first question I asked my doctor and I chemotherapist: "What is the best technical literature about mesothelioma?" He replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.
Of course, trying to keep the intellectual and literary works about the sanctity of recommending to Homo sapiens, the sexiest primate of all. As soon as I can walk, I went straight to Harvard's Countway medical library and punched mesothelioma into the computer search program bibliography. One hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. Literature can not be more brutally clear: mesothelioma is incurable, with a mortality rate on average only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they did not give me anything to read. Then my mind started working again, thank goodness.
If a little learning can be a dangerous thing, I've found a classic example. Attitude clearly matters in fighting cancer. We do not know why (from the old-style materialistic perspective, I suspect that the mental state feedback on the immune system). But right at the people with cancer to age, class, health, socioeconomic status, and, in general, those with a positive attitude, with a strong will and purpose for living, with commitment to struggle, with active response to help medical their own and not just passively accept what the doctor says, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and Nobelist in immunology, what the best recipe for success against cancer might be. "An optimistic personality," he said. Fortunately (since one can not reconstruct themselves in a short time and for specific purposes), I, if any, even-tempered and confident in just this way.
Hence the dilemma for humane doctors: since the problem was so critical attitude, must like the sombre conclusion be advertised, especially since only a few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I believe that this plays an important role in saving my life. Knowledge is indeed power, in Bacon's proverb.
The problem may be briefly stated: What does "death of an average of eight months' shows in our area? I suspect that most people, without training in statistics, would read statements like "I'll probably die within eight months," which is the conclusion to be avoided, because it is not so, and because so many attitude problems.
I do not, of course, delighted, but I do not read this statement in good ways. Technical training I ordered a different perspective on "the death of an average of eight months." The point is subtle, but profound, as manifest in the typical way of thinking of my own field of evolutionary biology and natural history.
While still carrying the burden of the history of a Platonic heritage that sharp looking and the essence of certain limits. (Thus we hope to find a clear "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with emphasis on the obvious differences and eternal entities separated, leads us to view statistics measure of central tendency, is contrary to the appropriate interpretation in our real world variations, shadows, and continua. In short, we see the facilities and the median as the hard "realities," and variations that allow the calculation of them as a set of temporary measures and imperfect of this hidden essence. If the median is the reality and variation around the median just the device for calculation, that "maybe I will die in eight months" may pass as a reasonable interpretation.
But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures of central tendency for. Facility and the median is the abstraction. Therefore, I see the mesothelioma statistics quite different - and not just because I am an optimist who tends to see the donut not the hole, but mainly because I know that variation itself is reality. I had to put myself in the middle of variation.
When I learned about an average of eight months, my first intellectual reaction was: fine, half of the people will live longer; now what I may be in that half. I read to be angry and nervous hour and concluded, with relief: very good. I have every one of the characteristics the probability of living to negotiate again: I was young; my illness has been recognized in a relatively early stage, I will receive the best medical care, I have a world to live, I know how to read the data properly and not despair .
Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month average will almost certainly become statistician so-called "right side." (In a symmetrical distribution, the profile variation on the left of the central tendency is a mirror image to the right variation. On the distribution side, the variation to one side of central tendency is more stretched - the left side if extended to the left, right, if lying on your right.) Distribution of variation must be right side, I reasoned. After all, on the left contains the distribution can not be withdrawn under the limit of zero (since mesothelioma can only be identified at the time of death or before). Thus, there is not much room for distribution to lower (or left) half of it had to curl up in between zero and eight months. But the upper (or right) half can extend out over the years, even if nobody ultimately survive. The distribution must be right side, and I need to know how long the extended tail ran - for I have concluded that my favorable profile made me a good candidate for the curve.
Distribution really, really right side, with a long tail (though small) that extended for several years on the average of eight months. I do not see why I should not be in a small tail, and I breathed a long sigh of relief. My technical knowledge had helped. I have read the graph correctly. I have asked the right questions and find answers. I have obtained, in all likelihood, the most precious of all possible gifts in the situation - a lot of time. I do not have to stop and immediately follow the command of Isaiah to Hezekiah, set your house so that you are dead, and not live. I'll have time to think, plan, and to fight.
One final point about statistical distributions. They only apply to a prescribed set of circumstances - in this case for survival with mesothelioma under conventional treatment. If things change, the distribution may change. I was placed on trial treatment protocols and, if luck holds, will be in the first group of new distribution with high average and a right tail extending to death by natural causes in old age.
Has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die, and when I finished skein I hope to face the end calmly and in my own way. Situations for most, however, I prefer the more martial view that death is the ultimate enemy, and I find nothing reproachable in those who rage mightily against the dying of the light.
A lot of sword fighting, and there is no more effective than humor. My death was announced at the meeting of my colleagues in Scotland, and I almost had a delicious pleasure to read an obituary written by one of my friends (the so-and-so suspicious and checked, he also was a statistician, and do not expect to find me so far on the right tail). However, the incident provided my first laugh after the diagnosis. Imagine, I'm almost there to repeat Mark Twain's most famous of all: the report my death is greatly exaggerated.
