J’ai passé un peu de temps pour mettre le pdf en texte ici (en OCR car ce sont des images du livre de mauvaise qualité), de manière à ce qu’il puisse être lu par les non anglophones. J’ai corrigé les premières pages, si j’ai le courage je ferais la suite au fur et à mesure.
Dans tous les cas, ce texte méritait d’être diffusé, j’espère que l’auteur sera d’accord.
I don’t blame people for not knowing how to engage with a person with cancer.
How would they? Heck, I hadn’t either. Despite the fact that each
year 70,000 Americans between the ages of ﬁfteen and forty are diagnosed
with the disease and that incidence in this age group has doubled in the last
thirty years, many of my friends in their thirties have never had to deal with
it on a personal level.
I remember when my cousin Elise was undergoing chemotherapy treatment while in her early thirties. When I met her I couldn’t even mention it,
couldn’t (or wouldn’t, or didn’t) say that I was sorry or ask her how it was
going---even though it was so obviously the thing that was going on. I was
thirty-ﬁve for God’s sake, a grown—up, a professional, a parent, and cancer
was so unthinkable that I couldn’t even acknowledge her disease. When my
former partner’s sister showed up at our house all bald after her chemotherapy, my only remark was, “Hey, you could totally be a lesbian.” I was terrified,
or in denial. More likely I had picked up the culture of stigma and this disabled me from giving genuine acknowledgment. But whatever sympathetic spin you want to put on it, I sucked in all the ways that I had to learn how to deal with later. Indeed, an assumption of exceptionalism was only the flip side of my own shame.
Fantasies of agency steep both sides of diagnosis. On the “previvor” side,
images continually tell us that cancer can be avoided if you eat right, avoid
Teflon and smoking, and come from strong stock. Alternatively, tropes of
hope, survivorship, battling, and positive attitude are fed to people post-
diagnosis as if they were at the helm of a ship in known waters, not along
stormy and uncharted shores. And yet, so little of cancer science, patient
experience, or survival statistics seems to provide backing for the ubiquitous
calls for hope in the popular culture of cancer. After all, who would celebrate
a survivor who did not stand amid at least a few poor SOBs who fell?
Everyone who has "battled,” “been touched by,” “survived,” been “made
into a shadow of a former self,” or has been called to inhabit the myriad can-
car cliches has been asked to live in a caricature. As poets say in rendering
their craft, clichés serve to shut down meaning. Clichés allow us not to think
about What we are describing or hearing about: we know roses are red. People
with cancer are called to live in and through—even if recalcitrantly—these
hegemonic clichés by news articles, TV shows, detection campaigns, patient
pamphlets, high—tech protocol—driven treatments, hospital organizations and
smells, and everyday social interactions. Such cultural venues as marches
for hope, research funding and direction, pharmaceutical interests, survivor
rhetoric, and hospital ads constitute not distinct cultural phenomena, but
overlap to form a broader hegemony of ways that cancer is talked about and
that in turn control and diminish the ways that cancer culture can be inhab-
ited and spoken about. Cancer exceeds the biology of multiplying cells. But
the paradoxes of cancer culture can also be used to reflect on broader Ameri—
can understandings of health and the mismatch of normative assumptions
with the ways people actually live and die. "lhe restricted languages of cancer
are not innocent.
For an example of how individuated agency is used in cancer, one might
look to the massive literature and movement spurred by Bernard Siegel,
which is based in the moral complex of cancer and what he describes as the
“exceptional patient.” In Love, Medicine, and Miracles: Lessons Learned about
Self—Healing from a Surgeon’s Experience with Exceptional Patients, Siegel
writes about having the right attitude to survive cancer(1). In Siegel’s View and
its variants, surviving cancer becomes a moral calling, as if dying indicates
some personal failure. Siegel—style literature offers another form of torture
to people with cancer: Did my mind declare war on my body? Am I a cold,
repressed person? (Okay, don’t answer that.) This huge and punishing industry preys on fear as much as any in the cancer complex and adds guilt to the mix.
As one woman with metastatic colon cancer said on a retreat I attended,
“Maybe I haven’t laughed enough. But then I looked around the room and
some of you laugh a lot more than I do and you’re still here.” She died a year
later, though she laughed plenty at the retreat.
It’s no wonder that shame is such a common response to diagnosis. The
dictionary helps with a description of shame: “The painful emotion arising
from the consciousness of something dishonoring, ridiculous, or indecorous in one’s own conduct or circumstances, or of being in a situation which
offends one’s sense of modesty or decency.(2)” Indeed, cancer does offend. People in treatment are often advised to wear wigs and other disguises, to joke
with colleagues; they are given tips on how to make others feel more at ease.
One does want to present decency, to seem upbeat. And so do others. A quick
“you look good,” with a response of “oh, thanks,” offers a Welcome segue to
the next discussion topic and enables a certain propriety to circumscribe the
confusion of proper responses to illness, to the stigma embodied by the possibility of a short life and a painful death. One person with metastatic disease
calls herself, semi-facetiously, “everyone’s worst nightmare.” Others Speak
about how hard it is to see the celebration of survivors while knowing that
they themselves are being killed by the disease.
Social grace is a good thing. But given the scope of the disease --- half of all
Americans die of it and many more go through treatment --- one might wonder what or whom such an astonishing cultural oversight serves. After all how can cancer, a predictable result of an environment drowning in indus:
trial and military toxicity, be dishonoring or indecorous ? I don’t mean its
side effects; the physical breakdown of the body is perhaps deﬁnitive of the
word “indecorousf” But these pre- and post-diagnosis calls to disavowal can
help illuminate the ugly underside of American’s constant will to health, its
normative assumptions about health and the social) individual, and generational traumas that it propagates. Expectations and assumptions about life span and their discriminatory and generational effects offer but one of many venues for such an exploration.
Survivorship in America
Perhaps it’s a class issue, but I didn’t really think about survival until I was
called to consider being in the position of the one who might be survived.
I was just tootling along until I was invited by diagnosis to inhabit this category, to attend retreats, camps, and support groups, to share an infusion
room—to do all kinds of things with many people who have not, in fact,
survived cancer—and thus to survive them at their memorial services, the
garage sales of their things> and in the constructing and reading of memorial
Websites and obituaries.
To be sure, cancer survivorship (as opposed to either cancer death or
just plain survival) comes with its beneﬁts. I got a free kayak, albeit with a
leak. When things are going really wrong I think about how my life insur-
ance could pay for some cool things for my kids, or that maybe I don’t have
to worry about saving for a down payment since in order for a home to be
, a good investment you should really plan to live in it for ﬁve years. Some-
times,when you ﬁnd yourself buying into those cancer mantras of living in
the moment, you can look around from a superior place at all the people
scurrying around on projects you have determined do not matter—and then
go and do the laundry or shop for groceries, just like