Dr. Stephen J. Gould was an internationally-renowned paleontologist and evolutionary biologist who lived a healthy and productive twenty years after he was diagnosed with
peritoneal mesothelioma in 1982. When Dr. Gould died in
2002, he died from an entirely unrelated form of cancer. In 1985 he wrote the following essay about his diagnosis and experience with the disease.
It is a wonderful essay about his determination
to not let simple statistics determine his response to
mesothelioma. Many cancer patients, not just those diagnosed
with mesothelioma, have been inspired by Dr. Gould’s
life and words.
My life has recently intersected, in a most personal
way, two of Mark Twain’s famous quips. One I shall defer
to the end of this essay. The other (sometimes
attributed to Disraeli), identifies three species of
mendacity, each worse than the one before—lies, damned
lies, and statistics.
Consider the standard example of stretching the truth
with numbers - a case quite relevant to my story.
Statistics recognizes different measures of an
“average” or central tendency. The mean is our
usual concept of an overall average - add up the items
and divide them by the number of sharers (100 candy bars
collected for five kids next Halloween will yield 20 for
each in a just world). The median, a different
measure of central tendency, is the half-way point. If I
line up five kids by height, the median child is shorter
than two and taller than the other two (who might have
trouble getting their mean share of the candy). A
politician in power might say with pride, “The mean
income of our citizens is $15,000 per year.” The leader
of the opposition might retort, “But half our citizens
make less than $10,000 per year.” Both are right, but
neither cites a statistic with impassive objectivity.
The first invokes a mean, the second a median. (Means
are higher than medians in such cases because one
millionaire may outweigh hundreds of poor people in
setting a mean; but he can balance only one mendicant in
calculating a median).
The larger issue that creates a common distrust or
contempt for statistics is more troubling. Many people
make an unfortunate and invalid separation between heart
and mind, or feeling and intellect. In some contemporary
traditions, abetted by attitudes stereotypically
centered on Southern California, feelings are exalted as
more “real” and the only proper basis for action—if it
feels good, do it—while intellect gets short shrift as
a hang-up of outmoded elitism. Statistics, in this
absurd dichotomy, often become the symbol of the enemy.
As Hilaire Belloc wrote, “Statistics are the triumph of
the quantitative method, and the quantitative method is
the victory of sterility and death.”
This is a personal story of statistics, properly
interpreted, as profoundly nurturant and life-giving. It
declares holy war on the downgrading of intellect by
telling a small 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 was suffering from
abdominal mesothelioma, a rare and serious cancer
usually associated with exposure to asbestos. When I
revived after surgery, I asked my first question of my
doctor and chemotherapist: “What is the best technical
literature about mesothelioma?” She 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 an intellectual away from
literature works about as well as recommending chastity
to Homo sapiens, the sexiest primate of all. As
soon as I could walk, I made a beeline for Harvard’s
Countway medical library and punched mesothelioma into
the computer’s bibliographic search program. An hour
later, surrounded by the latest literature on abdominal
mesothelioma, I realized with a gulp why my doctor had
offered that humane advice. The literature couldn’t have
been more brutally clear: mesothelioma is incurable,
with a median mortality of only eight months after
discovery. I sat stunned for about fifteen minutes, then
smiled and said to myself: so that’s why they didn't
give me anything to read. Then my mind started to work
again, thank goodness.
If a little learning could ever be a dangerous thing,
I had encountered a classic example. Attitude clearly
matters in fighting cancer. We don’t know why (from my
old-style materialistic perspective, I suspect that
mental states feed back upon the immune system). But
match people with the same cancer for age, class,
health, socioeconomic status, and, in general, those
with positive attitudes, with a strong will and purpose
for living, with commitment to struggle, with an active
response to aiding their own treatment and not just a
passive acceptance of anything doctors say, tend to live
longer. A few months later I asked Sir Peter Medawar, my
personal scientific guru and a Nobelist in immunology,
what the best prescription for success against cancer
might be. “A sanguine personality,” he replied.
Fortunately (since one can’t reconstruct oneself at
short notice and for a definite purpose), I am, if
anything, even-tempered and confident in just this
manner.
Hence the dilemma for humane doctors: since attitude
matters so critically, should such a sombre conclusion
be advertised, especially since few people have
sufficient understanding of statistics to evaluate what
the statements really mean? From years of experience
with the small-scale evolution of Bahamian land snails
treated quantitatively, I have developed this technical
knowledge - and I am convinced that it played a major
role in saving my life. Knowledge is indeed power, in
Bacon’s proverb.
The problem may be briefly stated: What does “median
mortality of eight months” signify in our vernacular? I
suspect that most people, without training in
statistics, would read such a statement as “I will
probably be dead in eight months”—the very conclusion
that must be avoided, since it isn’t so, and since
attitude matters so much.
I was not, of course, overjoyed, but I didn’t read
the statement in this vernacular way either. My
technical training enjoined a different perspective on
“eight months median mortality.” The point is a subtle
one, but profound—for it embodies the distinctive way
of thinking in my own field of evolutionary biology and
natural history.
We still carry the historical baggage of a Platonic
heritage that seeks sharp essences and definite
boundaries. (Thus we hope to find an unambiguous
“beginning of life” or “definition of death,” although
nature often comes to us as irreducible continua.) This
Platonic heritage, with its emphasis in clear
distinctions and separated immutable entities, leads us
to view statistical measures of central tendency
wrongly, indeed opposite to the appropriate
interpretation in our actual world of variation,
shadings, and continua. In short, we view means and
medians as the hard “realities,” and the variation that
permits their calculation as a set of transient and
imperfect measurements of this hidden essence. If the
median is the reality and variation around the median
just a device for its calculation, the “I will probably
be dead 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 for
a central tendency. Means and medians are the
abstractions. Therefore, I looked at the mesothelioma
statistics quite differently - and not only because I am
an optimist who tends to see the doughnut instead of the
hole, but primarily because I know that variation itself
is the reality. I had to place myself amidst the
variation.
When I learned about the eight-month median, my first
intellectual reaction was: fine, half the people will
live longer; now what are my chances of being in that
half. I read for a furious and nervous hour and
concluded, with relief: damned good. I possessed every
one of the characteristics conferring a probability of
longer life: I was young; my disease had been recognized
in a relatively early stage; I would receive the
nation’s best medical treatment; I had the world to live
for; I knew 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 median would almost
surely be what statisticians call “right skewed.” (In a
symmetrical distribution, the profile of variation to
the left of the central tendency is a mirror image of
variation to the right. In skewed distributions,
variation to one side of the central tendency is more
stretched out - left skewed if extended to the left,
right skewed if stretched out to the right.) The
distribution of variation had to be right skewed, I
reasoned. After all, the left of the distribution
contains an irrevocable lower boundary of zero (since
mesothelioma can only be identified at death or before).
Thus, there isn’t much room for the distribution’s lower
(or left) half—it must be scrunched up between zero
and eight months. But the upper (or right) half can
extend out for years and years, even if nobody
ultimately survives. The distribution must be right
skewed, and I needed to know how long the extended tail
ran - for I had already concluded that my favorable
profile made me a good candidate for that part of the
curve.
The distribution was indeed, strongly right skewed,
with a long tail (however small) that extended for
several years above the eight month median. I saw no
reason why I shouldn’t be in that small tail, and I
breathed a very long sigh of relief. My technical
knowledge had helped. I had read the graph correctly. I
had asked the right question and found the answers. I
had obtained, in all probability, the most precious of
all possible gifts in the circumstances - substantial
time. I didn’t have to stop and immediately follow
Isaiah’s injunction to Hezekiah—set thine house in
order for thou shalt die, and not live. I would have
time to think, to plan, and to fight.
One final point about statistical distributions. They
apply only to a prescribed set of circumstances - in
this case to survival with mesothelioma under
conventional modes of treatment. If circumstances
change, the distribution may alter. I was placed on an
experimental protocol of treatment and, if fortune
holds, will be in the first cohort of a new distribution
with high median and a right tail extending to death by
natural causes at advanced old age.
It 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 my skein runs out I hope to face the
end calmly and in my own way. For most situations,
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.
The swords of battle are numerous, and none more
effective than humor. My death was announced at a
meeting of my colleagues in Scotland, and I almost
experienced the delicious pleasure of reading my
obituary penned by one of my best friends (the so-and-so
got suspicious and checked; he too is a statistician,
and didn’t expect to find me so far out on the right
tail). Still, the incident provided my first good laugh
after the diagnosis. Just think, I almost got to repeat
Mark Twain’s most famous line of all: the reports of my
death are greatly exaggerated.