Living in Prognosis:Toward an Elegiac Politicsaurice Blanchot, the fre - PDF document

Living in Prognosis:Toward an Elegiac Politicsaurice Blanchot, the french philosopherspanned nearly the entire twentieth century, wrote a short piece aboutWorld War II in which he poses, in a brief two pages, the genealogy of whathe calls in the storyÕs title: ÒThe Instant of My Death.Ó In it, a band of rovingsoldiers removes the main figure from his chateau and places him in frontbushes demands the attention of the lieutenant, and the soldiers disbandbefore firing. Blanchot considers his protagonistÕs life afterward The term Òcancer survivorÓ references this simultaneous sense of lifeand death. A friend and attorney, Mary Dunlap, who died in 2003, wrote abook-length manuscript while living with cancer, ÒEureka! Everything IKnow About Cancer I Learned From My Dog.Ó In the last chapter shehandwrites: ÒOn Monday, Maureen and I were confronted with the newsÑpredictable to many, but surprising to usÑthat the cancer discovered in mypancreas has moved into my liver. Today I am an asymptomatic person withan almost invariably deadly cancer.ÓMary was an optimist and thus sur-prised by news that was perhaps predictable to others. To her, the aggregatepercent chance of survival was still 5 percent.spread (had, indeed, been spreading during the interim ofhope, of ÒsurvivorshipÓ),she transmuted into a asymptomatic but harboring a deadlydisease. For othe This essay examines how prognosis serves as a representational space for people livingwith and dying of cancer. It argues that as one of a series of means by which an elusive disease is madematerial, the prognosis also holds fantasies about the future, the past, and counterfactual futures andEPRESENTATIONS0734Ð6018, electronic ISSN 1533Ð855X, pages 77Ð92. All rights reserved. Direct requests for permission tophotocopy or reproduce article content to the University of California Press at http://www.ucpressjournals. RP9805 a about their cancer already feels like being Òdiagnosed with death.Óof these sensesÑthe statistics, the mystifying embodiment of life and death,and the subject shift marked in the transition from healthy to illÑcancer di-This culture, for the person trying to live within it, seemingly revels inconfusion. One blogger, who identified herself only as Òcancerbaby,Ó wroteconstantly. And for those who speak it, the talk is loose, as it should be.Rendered mute, you can only listen to the din. It swirls around you, loop-ing endlessly in patterns and figures you canÕt quite recognizeÑa languageyou once studied, but cannot speak or master.ÓVirtually every person Ihave spoken to who has gone through cancer diagnosis has echoed thissentiment about the loss of cohesive language. Much of this linguistic con-fusion, I think, results from the quasi-mystical nature of cancer. Not onlydoes it have a rich history, as Susan Sontag wrote, contoured by Òluridmetaphor,Ó but astonishingly little is known about the disease, how it isin cultural interchanges as in its biological form; it can only be located in,culled from, cultural interstices: not only from pathology reports but alsoin conversations with oncologists, support groups, get-well cards, coffeeThe struggle to locate ÒcancerÓ within this din of meaning, this slipperyculture in which cancer is constituted, I surmise here, is what cancerbaby isThe biomedical prognosis, as one of these technologies of presencing,stands out in this dispersed set of cancer cultureÕs materializing practices.Many patients receive prognoses at a doctorÕs visit, some look them up inbooks and charts, and others may not want to know, but cancer and progno-sis form oncologyÕs double helix. After treatment, the cancer patient oftencannot know if treatments have endedÑor if the next time the ÒpalliativeÓbox, rather than the ÒcureÓ box will be checked on the medical treatmentforms. But the statistical prognosis poses both a stunningly specific (one hasx percent chance of being alive in five years) and bloodlessly vague (you,yourself, will either be dead or alive) fact about the future. Prognosis offerslittle else. In this paper I take BlanchotÕs pronoun shift as a representationalspace (the Òfiring squad of aggregate statisticsÓ) that I will call Òliving inThe prognosis activates terrorÑthe shock of having harbored cancer,the fear of an unknown future seemingly presented through survival-ratenumbers, the brush with a culture of death. But bizarrely, at the sameEPRESENTATIONS RP9805 a moment, it dissolves that very terror in the act, its very function, of aggrega-tion. The number itself imbricates oneÕs life into the inevitable and the uni-versal; the number becomes the backdrop against which one can no longerlocate the shape of oneÕs own life. One is moved into an abstraction thatexplanatory through its gesture toward universality, yet one will onlyever live or die. Either way, oneÕs future will only be absorbed into the truthof prognosis, a truth that recursively projects a future as it acts as a con-tainer for a present. The prognosis offers an abstract universal, movingthrough time at a level of abstraction that its human subjects cannot oc-cupy, and in so doing it threatens to render us all (for we are all movingthrough the culture of cancer) inert. Simply a structure of and for our fan-tasies, the prognosis itself has no time for the human life and death drama.Thus, the double action of the prognosis. And so, who is the subject ofÒLiving in prognosisÓ might serve as an alternative to the identity poli-tics that has infused disability studiesÑand indeed, if pressed, I would ar-gue that all of us in American risk-culture live to some degree in prognosis.through which to examine this concept and its relation to time, the coun-terfactual past and future, and the ways these shape the prognostic subject.it is the largest killer of at least one demographic group, women be-tween the ages of 34 and 54; and it is the primary cause of death in severalstates. Living in the cancer prognosis is a Common American Experience,as well as a particularly potent form of living chance. Second, cancer has aunique and rapidly transforming cultural history. Despite the enormousnumbers of sufferers, cancer is still taken to be a tragic exceptionÑa veer offstyle industrial production. And third, despite (or because of) the culturalfear and ignorance that surround the disease, people undergoing cancerwigs, take on the mantle of Òsurvivorship,Ó consider the ÒgiftÓ of cancer,with contradiction and confusion, the prognosis appears as a concrete sci-entific fact. Thus, in living cancer, living in prognosis takes on a particu-larly potent form. Fourth, the treatments and the prognoses for manyfact, for example, that for breast cancer (which some physicians consideran umbrella term for perhaps two hundred diseases), chemotherapy in-creases survival rates by a mere 3 to 5 percent, and little is known aboutwhom it will help. Of the seventy thousand women each year who undergoLiving in Prognosis: Toward an Elegiac Politics RP9805 a the treatment, five thousand may increase their survival time. The prog-nostic subject and the cancer object live with each otherÕs ghostly pres-encesÑthreatening to absent one another, haunted by the possibilities oftemporality in cancer to better understand the formation of the subject liv-ing in prognosis. I do this by turning, in the first part of the essay, to the cul-tural productions of people with cancer and representations of cancer inthe United States, thinking specifically about Margaret EdsonÕs play Hannah WilkeÕs photography; Lucy GrealyÕs memoir; and my own multi-sited ethnographic work, part of which was completed at a weeklong retreatfor people with cancer. At stake in these representations is not only the un-folding of truth in time, and thus the revelation that the past was not what itseemed, but also the difficulty of accounting for alternative histories: thecounterfactuals of both the past and the future.In the last part of the essay, I look at cancer cultureÕs counterfactualsthrough the lens of medical malpractice law. If the prognosis holds both thefuture-factual and the future-counterfactual, the medical malpractice suitsinvolving misdiagnosis offer the promise of the past counterfactual, the pos-sibility of taking back time. The compensatory award in a successful lawsuitcan, representationally at least, fulfill the fantasy of an alternative past. Butto do this, cancer misdiagnosis suits must enter the slippery territory ofmeasuring biomedical logics of the aggregate against the legal necessity ofing illness. Since ultimately the cause can never really be known biomed-ically, medical malpractice courts set out their own logics of time, chance,and cause to determine how fault, cost, and compensation for missed diag-nosis will be distributed. These Òlost chanceÓ opinions offer several inter-Cancer is creepy. After it shows up one realizes that it must have beenthere for a while, growing, dispersing, scattering, sending out feelers andfragments. After the treatments, often one hasnÕt any idea if it is still there,slinking about in organs or through the lymph systemÑthoseparts of you canÕt really even visualize. But the apparent definitivenessof sis, which seems at first counterposed to the unpredictability of For one thing, living in prognosis severs the idea of a time line and allthe usual ways one orients oneself in time: oneÕs age, generation, and stageEPRESENTATIONS RP9805 a in the assumed lifespan. If you are going to die at 40, should you be able toget the senior discount at the movie when youÕre 35? (Is the discount a re-ward for long life or for proximity to death?) This relation to time makesdeath central to life in prognosis, death as an active lossÑas if there weresome right to a certain lifespanÑrather than just something that happensto everybody at the end of life. Furthermore, prognostic time constantly an-ticipates a future. In this sense, it offers us a similar logic to the one thatbids us to sock away money in retirement plans. But despite this familiarity,it is offered at a level of abstraction that is virtually impossible to grasp.or 42, or 97 percent die. And there is always the chance that a cure couldchange oneÕs number at the last minute, as happened to several people withHIV/AIDS after they had cashed out life insurance policies. In some sense,then, prognostic time demands that we adopt its own outside Òpre-poster-ousÓ viewpoint, one in which the end, or precede the story.Thus, if your five-year survival statistic is 5 percent, you are apparently worseThis temporal puzzle is perhaps narrative: we know the end of a familiar Shakespeare play from its begin-ning; we anticipate it, and its ineluctability offers pleasure. Margaret Ed-sonÕs play builds in the view from the end when the protagonist, VivianBearing, discloses at the outset that she will die of ovarian cancer. The playoffers the omniscient opportunity to witness her journey into that knowl-edge. In this way, the time-scheme of the play mimics other artifacts of can-cer culture: the clinical trial report states survival statistics, the medical mal-comes first, the punch, the punch line of the future is dissipated, dissolvedinto the pastÑwe know the end of the story even as we read through it fromthe beginning. The temporality echoes the double action of prognosis:Bearing offers an alternative grammar of death. She speaks aboutDonneÕs Holy Sonnet Six, in which death is Ònothing but a breathÑacommaÑseparates life from life everlasting. . . . death is no longer somethingpause indicates the blip between time linesÑthe one that leads toward anineluctable death, and the other in which there ineluctably is no death.Amid all the ways illness is markedÑthe check boxes on forms, the num-bers, the stats, all the things that purport to carry meaning but instead seemto occlude itÑthe comma, for Bearing, simultaneously carries significanceand mystery equal to impending death. Punctuation provides comfort,allows language. In DonneÕs poem, where death merely interrupts betweenLiving in Prognosis: Toward an Elegiac Politics RP9805 a two forms of life, punctuation provides the structure of inevitability andmeans of mourning. But in its own ambition toward timelessness,it providesthe structure for the narrative of life passing into death through the meterThe work of Hannah Wilke, who died of lymphoma in 1993, challengesthe viewer to ask related questions about destiny, the future, possibility, andineluctability through a similarly time-arresting medium: photography. Shebegan taking photographs of herself in the early 1960s, as her mother wasdying of cancer. She took many, donning Greek robes and photographingherself in sensuous poses, or sticking chewed gum on herself and photo-graphingit as only a female artist in the 1970s New York art scene couldhave. But if these images portray a stunning version of Western archetypalbeauty, their meaning shifts dramatically in light of the two-decade series ofimages that ends with larger-than-life photographs of her middle-aged, posi-tively not-beautiful self in hospital gowns, receiving chemotherapy, and los-ing her hair.Only within that context does the image set come full circle; Wilke fore-shadowed the end at the beginning, when she juxtaposed her self-portraitwith an image of her dying mother (fig. 1). The artist is youngÑyouthful andwhite as a sixteenth-century Bronzino painting, her eyebrows plucked highand perfect, her stereotyped red-rose lips puckered with half a smile triangu-lating the nipples of her breasts, her mass of dark hair tumbling to the sidesas if she is aroused. She looks directly at us. She is coy. She is challenging. SheEPRESENTATIONS 1.(Left) Hannah Wilke, Portrait of the Artist with Her Mother, Selma Butler,. © 2006 Donald Goddard. Photo: Dennis Cowley. CourtesyRonald Feldman Fine Arts, New York. (Right) Hannah Wilke, 1992/February 19, 1992two panels). Performalist Self-Portrait with Donald Goddard, © DonaldGoddard. Photo: Dennis Cowley. Courtesy Ronald Feldman Fine Arts,New York. RP9805 a Her mother, in contrast, looks down and across, as if toward WilkeÕs rightbreast. That gaze is triangulated again between WilkeÕs right nipple and hercluster of red welts, which must be skin metastases, that edge into the tautskeleton of her shoulder. Her hairÑwigÑblack, unkempt, matches the darkred lipsÑboth out of place, ersatz health, on the emaciated chest and shoul-ders. Thirty years later, WilkeÕs final hyperstaged photos cite the Madonnaers both her bald, tilted head and her now sagging breasts. No child is heldwithin the depths of this image: the cancer legacy stops here. Taking the pho-tos as a narrative, did Wilke see her cancer future/history as her destiny? Wecan read the first photo, now, only in light of the later one; we know what fu-ture they embodied: Wilke haunts us with a near inevitability.But if her ironically posed grace in the Madonna photo shows the in-evitability of disease and death, it alsoiterates the mocking of time offeredby photography. Photography, as Roland Barthes theorized, demonstratesthat we all live in prognosis. A short time before he was killed by a truck asOne day, leaving one of my classes, someone said to me with disdain, ÒYou talkabout Death very flatly.ÓÑAs if the horror of Death were not precisely its platitude!The horror is this: nothing to say about the death of one whom I love most [hismother], nothing to say about her photographs, which I contemplate without everbeing able to get to the heart of it, to transform it. The ÒthoughtÓ I can have is thatat the end of this first death, my own death is inscribed; between the two, nothingironyHere again, as with BearingÕs comma, the stillness, the seeming timelessness ofthe photograph counters the timeÑthe waitingÑof lifeÕs passage.WilkeÕs images suggest that prognosis affects every dimension of time,not just the future; the past becomes equally mysterious and unknowable.Lucy Grealy makes this point explicitly in her captures the eeriness of the past under life in prognosis, the sense of how itstruth and relevance might be ÒrevealedÓ through diagnosis. In the memoirof her treatment for EwingÕs Sarcoma in her jaw as a child, and the years ofsubsequent harrowing surgeries attempting to reconstruct her face disfig-ured by radiation treatments before she died of a drug overdose when sheAs I sat there on the playgroundÕs sticky asphalt I experienced time in a newway....A year before, my class had gone on a field trip to a museum whereI became fascinated with a medieval chart showing how women contained minuteindividuals, all perfectly formed and lined up like so many sardines in a can, justbelow their navels. WhatÕs more, these individuals contained more minute versionsof themselves, who in turn held even more. Our fates were already perfectly mappedLiving in Prognosis: Toward an Elegiac Politics RP9805 a out within us....ItÕs impossible for me not to revisitthis twenty-year-old playgroundscene and wonder why I didnÕt go right when I should have gone left, or alterna-tively, see my movements as inexorable. If the cancer was already there, it wouldhave been discovered eventually, though probably too late....Sometimes it is asswer to a riddle seems so obvious once it is revealed, it seems curious to me nowTrying Òto know what the past holds,Ó what alternatives and what necessitiesfaced with the slender pages of a medical report. Learning, for example,earlier reports, turns the faulty reports into the material remnants of lostefficacious. Because cancer is always about time. Its progression is markedby stages; the staging is not exactly arbitrary, but neither is it terribly pre-cise. It is mathematical (based on tumor size, number of positive nodes, andhow far it has spread). In breast cancer, for example, Stage I has very highsurvival rates, while Stage IV is considered terminal, albeit with second-,third-, and fourth-line treatments. Cancer spreads over time, but no oneknows how or when: it is possible to have metastasis after Stage I cancer, ornone with Stage III. But no matter what oneÕs stage, virtually everybodywants to have been diagnosed sooner.At a retreat for people with cancer that I attended in 2005, womentalked about the counterfactual in many ways: the shame of not havingdone self exams, delaying mammograms because of being too busy, or notwanting to ask more of already overworked people. Sharon said: ÒI wasnÕtpoliticized enough and aware enough to ask.Ó Liz talked about the junc-tures in her life when her reports of symptoms were not being believed,when she almost didnÕt believe them herself, so she decided to collect med-ical evidence of the symptoms of her undiagnosed leukemia. She storedblood in her refrigerator and documented blood loss with Polaroids. Yet af-ter the diagnosis, she was filled with regret and shame: ÒHow could I havejust let it all happen, with all these signsÑhow could I have, you know, gonefor my course in Toronto when I had to get up five times because I wasbleeding so much. And how could I have not known about my tumor?Ó Al-ice asked, ÒHow could they have missed two tumors 11 cm and 10 cm thatwere fused together? On my CT scan they thought my tumor was mycould I have been so lackadaisical about my own health?Ó When she neededto book her surgery her nurse-colleagues told her not to book it for the fallsince they were short-staffed. So she delayed and later mused: ÒIÕm a nurse,for godÕs sake, why couldnÕt I advocate for myself?ÓEPRESENTATIONS RP9805 a The discussions about Òhow could IÓ and Òhow could theyÓ were intenseexpressions of grief, anger, betrayal, and regret; a yearning for a differentstory that offered better odds. They contained moments imagined or re-ferent actions been taken, places at which the stories could have turned outdifferently. They were times that might have saved oneÕs life, times when aculture of disavowal had betrayed them, for despite the overwhelming statis-tics on how many North Americans will die of cancer, not one of thosewomen perceived herself as at risk. The women on the retreat felt simubetrayed by those who were supposed to know better and stupid for notStatistics seem to present us with a certainty, such as Ò1 in 207 women whoare 35 years old will be diagnosed with Stage III breast cancer.Ó But it saysnothing about who will represent the one, so it also carries the counterfactualhint that it might be somebody else (Òwhy me?Ó). If it hadnÕt been Sharonwho was the Ò1 in 207Ó at our retreat, would it have been someone else whodidnÕt do self-exams, whose physicians were careless or homophobic, who de-layed her medical checkup, or who had no medical insurance? Like car-crashdeaths or suicides, the individuated counternarrativefolds into the magicalinexorability of the aggregate. It is as if the statistics hold within them also allof the mistakes, the systematic lapses and failures of medical treatment, theeries of cancers that always already could have been discovered sooner. Inthis sense, the statistic is communal in two ways, both because it harbors thegroup among which apparently anyone could be the one chosen for cancerand because it holds the culture and biology of cancer in one number. Never-theless, despite the ever-present counterfactual,Sharon lives the subjectiveinevitability of cancer.Medical malpractice law mirrors the logic of prognosis in its potentialfor an objective counterfactual, one thatÕs experienced as if from someperspective outside the diagnosed patientÕs. In individual cases, the lawÕsconjuring trick resides in rewriting history, imposing the counternarrative,through the transfer of money, through a more comfortable object life.The damages paid, of course, only represent the injury, and as such theycanÕt really assuage grief or get at the sense of betrayal, dismay, rage, ortempts to tack more satisfyingconclusions onto narratives of error, suffer-ing, and death. They try to replace stories of ineluctable fate with those ofAdditionally, by offering a latently political space in which standardsof practice can be set and upheld, medical malpractice law has the power toLiving in Prognosis: Toward an Elegiac Politics RP9805 a the body of a patient determined that it Òrequires no expertise to countÓ theIn one case, the plaintiff Merle Evers had been told to Òstop worrying and gomonths later she had a radical mastectomy, and five years after that she hadmetastasis to her lung.Similarly, when another plaintiff, Myra Kennedy, hadpresented a lump to her doctor in 1983, she was also told Ònot to worry,Ó andthat advice was repeated a year later. By 1985 the cancer had metastasized.functionÑin these instances the attempt to insure that doctors will not dis-miss womenÕs concernsÑto be a main function of the law, cases with this in-of other doctors, and one study found that only 30 percent of surgeons wouldbe willing to testify against a physician who had removed the wrong kidneyMoreover, in California damages for injury caused bymedical error are capped at $250,000. This means that plaintiffsÕ attorneyscannot afford to take on cases that do not also include claims for losses wellover and above the injury itself, such as lost income.The malpractice suits that have to do with cancer attempt to distinguishthe injury rendered through error from that of the potentially lethal underly-of causationin any given case, while oncology only presents future through prognoses and statistics as they appear in populations of individualswhose medical histories have various degrees of similarity to the plaintiffÕs.The slim archive of medical malpractice law devoted to missed diagnosis fo-doctor for the chance of life that is lost when, presented with symptoms of adisease, the doctor does not follow the usual standards of care and therebyto have died, others accepting that the loss of a chance itself can be injurious.not knowing about the cancer outdid the injury of late diagnosis.Because of these difficulties, judges in states that accept the lost-chanceprobability are considered to matter and to determine how probability ofEPRESENTATIONS RP9805 a plaintiff death by the preceding cancer will weigh in against probability ofmedical fault of delayed diagnosis. In courts that accept lost chance, theplaintiff has to have suffered a more than 50 percent loss of survival chance,and that has to bring the patient from a more than 50 percent chance ofsurvival to one less than 50 percent.Lost-chance plaintiffs encounter several temporal problems. In the firstters and for whom. Perhaps cancer metastasizes at a certain moment afterwhich treatments will no longer work; or perhaps as many types of cancer ex-ist, with as many behaviors, as people who have it. Even the staging indicesÑuseful in general to decide on treatments and measure prognosis (orchance)Ñreflect loose clusters of similar indices. In the instant that a tumornecessarily diminish by 25 percent. In fact, tumors cannot be measured withsuch accuracy; staging and the prognoses that they occasion offer mere esti-mates at every vector. Thus, doctors disagree about whether a six-month delayin diagnosis will make a difference. On the other hand, if the delay is severalthat later emerged. Indeed, the lack of proof of disease can be precisely the al-leged cause of injury. If the doctor , for example, biopsied a lump, then itwould be known whether or not it was malignant. If he or she did not, the doc-tor can now claim that it wasnÕt there. Even if the doctor agrees that thingsshould have been otherwise (and a malpractice suit is never about intent), herrole in court is to defend time as it unfurledÑto argue in various ways thatthings could not have been different: the rightprocedures were followed, thepatient would have died even if the cancer were treated sooner.The burden of proof falls on the plaintiff, since the plaintiff claims thatthings should have been otherwise; the plaintiff yearns for validation of thecounternarrative by the court in the form of awarded damages, even know-ing that such a validation will not make the counterfactual narrative any lessa fantasy arising from the now inevitable fact of the past injury. The plain-tiffÕs quest for a validated counterfactual narrative, however, meets resist-ance from the nature of the prognoses adduced as evidence in these cases.For, whereas the law requires proof of causality, biomedicine can only gen-One decisive California case makes this conflict clear. In the 1991 caseElaine Dumas v. Davis Cooneychance doctrine would destroy the integrity of the tort system, which Òat-tempts to ascertain facts to arrive at the truth.ÓThe court held that, ÒIfthe acts of the defendants did not actually cause plaintiffÕs injury, thenthere is no rational justification for requiring defendants to bear the cost ofplaintiffÕs damages.ÓIn this case, the plaintiff was the wife of a man whoLiving in Prognosis: Toward an Elegiac Politics RP9805 a died of lung cancer. Had his tumor been discovered at the moment of misdi-agnosis, his survival chances would have been 67 percent. When his tumorwas discovered, his chances were 33 percent, and he died. This judgewanted specific facts to prevail, and since certainties of causation were sim-ply impossible to determine in this case, he dismissed it. But, of course, hisdecision does not serve the cause of truth any more than a decision the otherway would have; it merely claims that prognoses cannot be thought of as con-taining legal truths applicable to specific cases.The outcome of this lawsuitwas no more or less arbitrary than prognosis itself. In any individual case, it isindividual (indeed accuracy is simply an illegible concept for the individualliving within its parameters) but also that, along with other aspects of cancerculture, with this disease that is so elusive, prognosis concretizes cancer, seem-ing to make it more solid and visible. In this sense, cancer is only known, isonly brought into beingÑthrough technologies such as that of the prognosis.Inrelying so heavily on this collective statistical number, and imagining that thisnumber should make sense of an individualÕs caseÑlegal logic partakes inmore obscure, more mystifying, even as it purports to be discussing it. Onemust admit, then, that both the patient bringing a loss-of-chance suit and theDumas v. Cooneyare mystifying cancer.in which earlier diagnosis might have been possible. But these individuatedpossibilities serve also to disavow, or at least to shadow, the collective sacrificeof cancer, the political and economic decisions that trade the costs and bene-fits of the disease.causing environment, too, consider risk only in the abstract. Nor does anyoneforcancer to exist. When we fill our tanks with gas and drive our carscigarettes rather than dying of lung cancer: if prolonged illness is good forthe economy, death is not, necessarily. But even though cancer is a social de-cision, real people live that sacrifice. Medical malpractice law serves only toIn the book-length study from which this paper evolves, I develop a notionof Òelegiac politics.Ó My colleague Derek Simons writes about elegy in hiswork on concrete. He writes about the mystery of mundane and ubiquitousEPRESENTATIONS RP9805 a concrete, which makes manifest a kind of boundary between presence andabsence, with its origins in the increasing prevalence of a projectile economy,writes Simons, offers a kind of ongoing mourning.also about mourning, about the work of absencing and presencing, and all ofthe parts of that work that make it hard and emotional and profitable. Theand holds the possibility of the counterfactual through the promises of earlydetection and cure. In this sense, I donÕt believe that cancer, or sufferingmore generally, can be understood cleanly through a politics that tries to dis-avow death (as the survivor politics does), or cheer it up (as the pink-ribbonrhetoric does), or deny or defer cancer suffering (as does the Òdrive for theturesÑgrief, anger, death, and loss into the public cultures of cancerÑperhapseven if only alongside of LiveStrong, or sipping, driving, and walking for thecureÑwith the recognition of the enormous economic profits and gains thatLiving in Prognosis: Toward an Elegiac Politics 2.Sign at the parking lotÒWarning: This garage containsand/or reproductive toxicity.Ó RP9805 a An elegiac politics analyzes how the private and public aspects of therhetorics of loss and profit both disavow and necessitate each other in thecultural sacrifice of cancer. It also recasts inevitability, recognizing thatthe counterfactuals offered by legal promises of justice or biomedicalpromises of cure, can only ever be irrelevant to patientsÕ internal state, canonly act as social icons, whereas lives are lived in time that folds around sub-jective inevitability. Instead of focusing on hope, cure, and the survivorfigure, elegiac politics yearns to account for loss, grief, betrayal, and theconnections between economic profits, disease, and death in a culture thatis affronted by mortality. If the term ÒsurvivorÓ offers a politics steeped in anidentity formation around cancer, Òliving in prognosisÓ offers an uneasy al-In elegiac politics, prognosis emerges as a technology of mourning, hold-ing together the future and the past. Prognosis stands as a small monumentto those who will not make it through the five- and ten-year marks. Offered infactual form, prognosis holds the counterfactual: life or death. But for all thepromise of validated counterfactuals, time in elegy wraps itself around the sub-death of each of us who passes through the timeless grammar The paper is dedicated to my sisters, Kamini and Anita. Thanks to VictorBuchli, Lisa Cartwright, Catherine Gallagher, Rebecca Herzig, Jake Kosek,Samara Marion, Natasha Schull, David Serlin, Derek Simons, and more people1.Maurice Blanchot, Demeure: Fictionand Testimony2.Mary Dunlap, ÒEureka! Everything I Know About Cancer I Learned From My3.The Oxford English Dictionary, 2nd ed. (Oxford, 1989), s. v. Òprognosis,Ó definesof disease; also, the action or art of making such a forecastÓ: http://dictionary.oed.com/cgi/entry/50189613?single=1&query_type=word&queryword=prognosis4.Quote from a colleague who was diagnosed with non-Hodgkins lymphoma. Anote on my citations: those cancer patients cited through their written or pub-lished work, I cite by name. Those with whom I have spoken remain eitheranonymous or are cited by pseudonym. This work is based on an eighteen-month ethnographic study that included patient and physician observation;participation in support groups and retreats for people with cancer; and inter-EPRESENTATIONS RP9805 a 5.Post on the Web site Cancer,Baby, http://cancerbaby.typepad.com/cancerbaby/6.The Òfiring squad of aggregate statistics,Ó as my colleague Rebecca Herzig put it.7.ÒProbability of Developing Invasive Cancers Over Selected Age Intervals, bySex, US, 1999Ð2001,Ó American Cancer Society, Surveillance Research, 2005.8.Prognostic logic continues to gain power and legibility through the creation ofnew groups of risk subjects: those encouraged to understand themselves as ÒatriskÓ for various diseases and thus to take prophylactic drugs such as statins and9.Margaret Edson, (New York, 1999), 14Ð15.10.See Carla Freccero, ÒDe-Idealizing the Body: Hannah Wilke, 1940Ð1993,Ó inBodies in the Making: Transgressions and TransformationsHelene Moglen (Santa Cruz, 2006), 12Ð18.11.Roland Barthes, , trans. Richard Howard(New York, 1981), 124.12.Lucy Grealy, 13.Marc Franklin and Robert Rabin, Tort Law and Alternatives: Cases and Materials7th ed. (New York, 2001), 116.14.On discrimination in medical care, see, for example, K.A. Schulman, J.A.Berlin, W. Harless, et al., ÒThe Effect of Race and Sex on PhysiciansÕ Recom-New England Journal of Medicineno. 8 (Feb. 25, 1999): 618Ð26, and M. Loring and B. Powell, ÒGender, Race,and DSM-III: A Study of the Objectivity of Psychiatric Diagnostic Behavior,ÓJournal of Health and Social BehaviorMerle Evers and Richard Evers v. Kenneth Dolliner MD and Livingston Obgyn Group P.C.Supreme Court of New Jersey, 95 NJ 399; 471 A.2d 405; 1984 NJ LEXIS 2395. Inmy ethnographic work, I met many, many people who claimed that symptoms thatwere later found to be caused by cancers were initially dismissed by physicians, pri-marily because they were told that they were too young to have cancer.16.Franklin and Rabin, Tort Law17.One reason that Americans tend to use the tort system more than citizens ofother Western nations is the high cost of healthcare when one is injured. Torteconomic loss, through loss of income and as a result of prohibitivelyexpensivehave no medical insurance whatsoever, while about thirty-five million have cov-cancer treatment. Gurney Williams III and Pamela Weintraub, ÒMamm SpecialReport: The New Have-Nots, Are You One?Ó (Jan./Feb., 2006): 29Ð35. Ifone can show that one was misdiagnosed, in certain situations some of these18.For more on this issue, see Sarah Jain,Injury (Princeton, 2006) or Tom Baker,19.This judge was clearly unaware that cancer treatment has progressed somewhatsince the 1950s, and he brought an egregiously outdated version of medicalethics to the table. In 1961, a survey showed that 90 percent of physicians did nottell their patients a diagnosis of cancer, but by 1971 the same survey indicatedLiving in Prognosis: Toward an Elegiac Politics RP9805 a et al., ÒChanges in PhysiciansÕ Attitudes Toward Telling the Cancer Patient,Ó 20.While both medical and legal rhetoric accepts the ultimate ÒtruthsÓ of survivalresentation: a fetishization of life. When one comes into the system in a latestage, one faces the additional chronic illness of endless cycles of chemotherapy. Elaine Dumas v. David Cooney22.Ibid.23.Despite the slipperiness of the concept, the confusion about what might bethe notions that (1) early detection is important, (2) doctors should be ac-countable whentheir practice falls below the standard of care and, (3) patientsshould have a way to hold their doctors accountableto them. Alas, in Californiaand other states that have followed its lead, patients whose doctors failed to di-fashion have lost the social recognition that accompanies legal recovery. For anexcellent outline of the politics of medical malpractice law, see Tom Baker, 24.The numbers really are staggering. Just to take an example of one cancer: twoliving with it who have no idea they are ill. More than six thousand women underpolio at the height of that crisis. And yet the response has not been to reconsiderfigure of the survivor, and the rhetoric of hope all serve as part of the rhetoricalwork of maintaining a belief in the preciousness of each individual life. The badfaith, though, reveals itself in contradictions: the statistics built from drug trialson the one hand point out how far we are from a cure and on the other harborargue, very little basic research on cancer is being done. One might reasonablyconclude that the rhetoric of hope for a cure papers-over the actuality that afterall these years, for many cancers chemotherapy treatments have improved verylittle, and they have improved survival rates only marginally, if at all. Robert Proc-tor, Cancer Wars: How Politics Shapes What We Know and DonÕt Know About Cancer(New York, 1995). See also Gerald Markowitz and David Rosner, The Deadly Politics of Industrial Pollution(Berkeley, 2003), and the extensive Web(www.bcaction.org).25.Derek Simons, ÒThe Will to Concrete and the Projectile Economy of Cities,Ó inThe Cultural Mechanics of Urban Form in VancouverUniversity, forthcoming).26.The larger goal of that work is to rethink what analysis means in the face ofcancer; that project gropes toward something else, a new style of analysis thatcomes out of confusion rather than clarity, bewilderment rather than surety,EPRESENTATIONS RP9805 a