On Being N.E.D.

This is an “On Being” essay. An “On Being” essay is an assignment I give my students: part personal narrative, part critical analysis. Narrative, because your lived experience matters; analytical, because to investigate and challenge that experience is to make it meaningful. I teach courses in the medical humanities, courses on health, illness, disability, and embodiment. I bring my training in literary and cultural analysis to the classroom. And I bring this training to my body, and my body to the classroom, too.

I was diagnosed with invasive breast cancer at the age of 24. When people learn this, they often ask something like: “But you’re okay now, right?” And most of the time I offer a nod of cheerful confidence, though I frequently re-frame the terms of assessment: “I’m okay for now,” I say.

Remission is tricky. In the case of many cancers, the five-year mark is commonly held as a significant milestone; five years sans recurrence, and your cancer can be considered in remission. But the research surrounding breast cancer survival rates points to the fallacy of fetishizing the oft-touted five-year all-clear. What’s more, this research mainly concerns postmenopausal women; no significant longitudinal data yet exists to assess the survival rates of women diagnosed in their twenties and thirties, whose cancers tend to be more aggressive, less responsive to treatment, and diagnosed at later stages. All that we know, then, is that you can never really know if you are over it. The possibility of recurrence and metastasis continues to linger ten, fifteen, even twenty years post-diagnosis. So you exist — persist — under receding, but nevertheless constant threat.

But no one wants to hear that.

Remission is polysemic. Etymologically, it signifies forgiveness; as a lapsed Catholic, I ought to know this. I have spent requisite Sundays affirming belief in the forgiveness of sins: remissiónem peccatórum. So from what or from whom are we cancer “survivors” meant to seek absolution? Most obviously, it would seem, from those white-coated ecclesiastics who serve as intermediaries between us and Science — those privileged custodians of knowledge who assume the responsibility of rendering us legible to ourselves.

But biomedicine’s limited omniscience —its inability to forecast the course the body’s story with precision — suggests that we also seek absolution from the disease itself, granting it agency and intentionality, making recourse to the metaphorization of illness that Sontag identified as politically fraught. Sinners in the hands of an angry bod.

***

Like any site of discourse, the oncology ward has its Shibboleths. In lieu of remission, with all of its sectarian overtones, oncologists tend to favor the more enigmatic appellation N.E.D: “no evidence of disease.” (A group of gynecological surgeons has adopted this as the name of their rock band. The band’s devotees—middle-aged white women, mainly—refer to themselves as “NED-heads”). As a classification, “N.E.D.” is appropriately clinical, suggesting that one’s condition is assessed in terms of the evidence biomedical technology affords us. And it is also appropriately hedging: after all, just because it isn’t “evident” doesn’t mean it isn’t there.

As a professor, I spend a considerable amount of time explaining and assessing the concept of “evidence.” Given that my field of specialization is inherently interdisciplinary, I must unpack for my students what counts as evidence according to the dictates of disciplinary conventions. In the sciences, for example, we emphasize empirical evidence above all else — evidence that is verifiable by observation, gathered in accordance with the ordinances of the scientific method, and replicable by trial.

For students who take comfort in this model, the evidence of humanists often seems especially suspect. But I was trained as a literary historian; the primary genre of evidence I dally with is textual: what is said and how, and also what is unsaid, what is hiding inside silences and under surfaces. This understanding of evidence calls us not only to observation but to analysis. And it invites us, in ways the “hard sciences” typically do not, to consider the evidence of lived experience, to treasure the evidence of feeling.

For physicians, of course, what is meant by “evidence” is that which is rendered visible by diagnostic imaging or perceived during physical examination. This leaves open the possibility that evidence of disease may exist, but in forms that are unknown or unknowable by accepted methods and metrics of assessment. After all, most of what goes on in our bodies lies below the threshold of perception. As a consequence, we cling close to the rhetoric of “early detection,” believing that, if we are unable to witness that first errant cell division by which cancer comes into being — the pathological process known as “carcinogenesis” or “oncogenesis” — then we might at least head it off at the pass; that if we cannot know our bodies at a cellular level, we might compensate with a kind of somatic hyper-attentiveness.

We expect medicine to mitigate the anxiety of opacity by affording us a transparency of which it is more often than not incapable. This charge is turned back upon us under the mantle of “awareness,” as we’re saddled with the task of becoming on intimate terms with our bodies, primed to identity the subtlest of anomalies. Self-examination as self-revelation.

Of course, I am keenly aware how crucial self-examination has been and is to the women’s health movement in particular, which has sought to redress the problems wrought for generations of women kept by propriety from the mysteries of their own interiors, who suffered silently from preventable and treatable diseases, symptoms of our wider cultural gynophobia. The very fact of female embodiment has scared us shitless for millennia.

So self-examination gives us agency, yes, but it also gives us anxiety, because it is not enough to simply gather a somatic data-set; we must also be qualified to interpret that evidence, or, more precisely, to assess whether that evidence is evidence. We need the epistemological privilege of medicine in order to be able to say what counts about our own bodies. This is a burden for everyone and all patients, but it is a weight that falls especially heavily on women, since we are routinely denied — culturally, legally, institutionally —the ability to speak with authority about our own lived experience.

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What is important to know about being N.E.D. is that I am not afforded the full repository of biomedical technology that would most accurately identify “evidence.” Or as my oncologist puts it: “We don’t go looking for trouble.” While I have annual mammograms of my remaining breast because I am at an increased risk of developing second primary cancer, all the other recesses of the body where the original cancer might metastasize (liver, lungs, bones, brain) remain untrodden territory, shrouded in diagnostic darkness. Blood tests for tumor markers are unreliable; CT and PET scans aren’t on the menu for the asymptomatic.

Supposedly, such metastatic symptom-seeking would be merely be panic-producing for patients like me, who are already in constant pursuit of confirmation of our darkest fears, producing suspicious readings of our own bodies; more to the point, though, diagnostic imaging is expensive, and it isn’t worth hunting for the incurable. Ignorance is, if not bliss, then the clear conclusion of a cost-benefit analysis.

As far as I can tell, metastasis is held as self-evident: you’ll know it when you see it. Or feel it, I guess. You must wait until the presence of death is too obvious to be ignored. Accordingly, every sensation gets assimilated into a complex system of self-diagnostics, spawning midnight questions typed into search engines and online discussion fora: What do lung mets feel like? What do bone mets feel like? And any answer is distanced by the impetus to simile: these things do not feel “like” anything.

***

 

So am I “ok now”? I bristle a little, I admit, at the well-meaning line of inquiry, for the way it places on the patient the burden of reassurance: the duty to confine cancer to the hermetic province of the past. What I hear in this question is prudent circumspection; what I hear is this: will I need to invest undue emotional energy in you? Will I need to grasp as more than mere abstraction the fact of your sickness, your death?
But to be N.E.D. is to nurse this uncertainty. Suspended in my body, in my being, is the expectant question I also scrawl, with purple pen, in the margins of my students’ essays:

“Evidence?”

Emily J. Waples: Okay for now.



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