offers a mutually welcome segue to the next discussion topic and enables propriety to mask the confusion about how disease should be acknowledged. It saves us from getting snot on a work shirt or accidently oversharing an existential crisis with a mere acquaintance. Still, the awkwardness—no, the devastating denial—contained in these conversations offers a window into the larger social confusion about how illness fits in with the broader economic and political infrastructures that contour American ideas, even ideologies, of a lifespan.
It’s no wonder shame is such a common response to diagnosis. As usual, the Oxford English Dictionary helps—shame: “the painful emotion arising from the consciousness of something dishonouring, 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.” We know cancer will happen, yet when it does, it seems dishonoring or indecorous. I don’t refer to its side-effects here; the physical breakdown of the body virtually epitomizes “indecorousness.” Judgments about proper decorum (be a survivor, wear a wig, look good!) can help illuminate the ugly downside of America’s will to health.
My economic class, my age, and certainly my nationality buffered me from thinking about survival until I was suddenly the one who might be survived. Diagnosis beckoned me to attend retreats, camps, and support groups. Diagnosis made me share an infusion room—do all kinds of things, really—with many people who didn’t live for much longer. Diagnosis accompanied me in reading their obituaries, attending their memorial services, going to the garage sales of their things, writing on their memorial websites.
To be sure, diagnosis (as opposed to death or just plain old life) comes with its benefits. I got a kayak, albeit with a leak, as well as two weeks of adventure camp where I learned how to use it, all for free thanks to a group that offers young adult cancer “fighters” an experience designed to empower them to “climb, paddle, and surf beyond their diagnoses, defy their cancer, reclaim their lives and connect with others doing the same thing.”1 Even so, things can go bad. During down moments, I think about how at least my life insurance could pay for some cool things for my kids, or that maybe I don’t have to worry about saving for a down payment for a house, since in order for a home to be a good investment one should really plan to live in it for five years. I can look down from a superior place at all the people scurrying around on projects I have determined do not matter—and then go and do the laundry or shop for groceries just as everyone else does. Like Bette Davis’s character dying of a brain tumor in the 1939 movie Dark Victory, one can consider oneself the lucky one, not having to survive the deaths of those one loves.
(Sometimes one can’t help but devolve into a self-centered, unremitting fear. To ground myself in my ordinariness, I like to keep in mind what a driver once told me when I asked him what it was like to chauffeur celebrities such as Oprah Winfrey around New York. He fingered the St. Christopher amulet hanging from his rearview mirror and declared, “They like to think they are important. But after every funeral I’ve been to, people do the saaaaame thing. They eat.”)
The child survives the parent, the doctor survives the patient, the healthy survive the sick. But how have we come to take this mode of lifespan and survivorship for granted, as something to which we are entitled? Even a century ago, some—heck, many—of us would have died youngish, in childbirth or of some illness. Devastating though it may have been, people weren’t shocked. Even in the present, we don’t exactly live in medical nirvana. The United States is not in the top ten for the longevity of its population. According to some studies, it’s not even in the top forty.2 Yet despite such statistics, the United States spends more on healthcare than any other nation. Part of Americans’ dismal life expectancy results from the broad lack of access to healthcare as well as documented discrimination against the usual suspects: African Americans, women, younger people, and queers (not to mention those groups that remain not so well documented). Other factors affect even those with excellent access to excellent care: high levels of toxins in the environment, and in turn in human and animal bodies; cigarettes; guns; and little safety oversight of food, automobiles, and other products. Physician Peter Pronovost lists medical error after heart disease and cancer as the third largest killer in the United States.3
In short, despite the insistent rhetoric, American economies simply do not prioritize health. No particular logic demands that a population’s general health should trump other national concerns. So what do we get when we notice that it doesn’t?
The anxious dissonance between the bleak median state of health in America and the upper and middle classes’ general sense of entitlement to health and longevity plays out in the different, even contradictory, modes of time in which we each must live. On the one hand, lives correlate to a greater and lesser extent with a standardized, assumed timeline: birth; marriage; children; working, saving, paying taxes; kids’ college bills; retiring; dying. On the other hand, we have various links with immortal systems. The state, for example, underpins our expectations of a lifespan by helping some of us if we die early through various forms of financial aid to those it understands as legitimate dependents. In this sense, the immortal state (or an employer) can take the part of linking our “survivors” to the immortal timeline of capital. Still, enough people drop out of line with this standard story that a pervasive insecurity shores up a uniquely American security state.
Unpacking the dissonance offers insights into how notions of health are shored up and made to seem like an entitlement, when health is in fact the unspoken tenet of a lifespan, one that is often cast aside as an externality. No one feels this more baldly or sees it more starkly than those who have slipped off the bandwagon at the peak of the party onto the cold, hard cement.
CANCER BURDEN
If the organ that first harbors a cancer provides one way to chalk up numbers, age offers another vector through which to analyze the social dimensions of the disease. One of the most delightful characteristics of youth—that you are indestructible (until you’re not)—is one of its greatest risk factors, as well. Cancer is the largest disease killer of adults under forty. One in forty-nine young American women and one in sixty-nine young men are diagnosed with invasive cancers.4 The numbers are far from insignificant, especially given the social costs of the number of years of life (read, productivity) lost. Yet until about five years ago virtually no oncological attention was given to this demographic.
While cancer survival rates have steadily, if haphazardly, improved for children and older adults, they remain historically static for young adults. Adults under forty don’t undergo regular screening, and as students or temporary employees, they often don’t have access to regular healthcare. In cases where they do seek out care, younger adults have little experience advocating for a definitive diagnosis. Furthermore, doctors often work under the misguided assumption that cancer is a disease of older people, leading to an immorally high number of delayed diagnoses and, in turn, the large proportion of late-stage cancers. This misinterpretation of cancer carries enormous financial and personal costs, costs that are more often dismissed as individual misfortune—an act of God, perhaps—than as problems with the diagnostic process and access to healthcare.
Alison, age forty-one, spoke before she died of her months of being misdiagnosed by a pulmonologist at University of California, San Francisco, who claimed that she must have asthma rather than a metastasis to the lung of a cancer that she had been treated for three years prior. Afterward, she was confounded by her doctor’s “lack of curiosity,” but she said she didn’t advocate too hard because she didn’t want to hear that she had a metastasis.5 Petra initially went to her ob-gyn to have a hard spot checked out when she was thirty-six. The doctor thought it was nothing but promised to keep tabs on it. The next year she went to the office again, though the original doctor was not available. The new doctor ordered a mammogram, ultrasound, and core biopsies; the ultrasound found nothing, and the day after a core biopsy located an eight-centimeter malignant tumor, the mammogram results came in: negative.6
Gene,
