Literature and Medicine II

21 In “Welcome to Cancerland,” Barbara Ehrenreich writes that “in the overwhelmingly Darwinian culture that has grown up around breast cancer, martyrs count for little; it is the ‘survivors’ who merit constant honor and acclaim” (48). The “mindless triumphalism of ‘survivohood,’” in Ehrenreich’s phrase, is perpetuated not only by science but also by the mainstream breast cancer culture, which “denigrates the dead and the dying” (53). Hall’s Ghost Friends, the last book I would like to mention in this section, is a moving card catalogue compilation of remembrances of similarly afflicted acquaintances, most of whom do not survive. It consists of sixteen books, each one of them sitting in an expendable file format. The bookcloth covered clamshell box in which they are housed creates a realistic filing cabinet expected to be found in a hospital or clinic. Hall supplements impersonal biomedical patient files, which document symptoms and treatment, and have statistical value through the particular stories of people she narrates. These stories fight facelessness, in that the individuals involved are named, and document both haunting and more optimistic moments by providing snapshots of encounters without passing judgement. For instance, one of them tells the story of Joyce who “walked into the treatment room and told us, the regulars, she had decided not to have chemo, not to fight anymore. She would not be coming back.” The story concludes with the comment “Her husband was crying” (66). Ghost Friends consists of lyrical elegies but also functions as a form of public memorialising that recalls the AIDS Memorial Quilt Project and other remembrance rituals. Several doctors, particularly those working with AIDS patients, have also attempted to do something similar. For example, in his poetry collection What the Body Told Campo includes a long sequence of deconstructed sonnets called “Ten Patients and Another,” through which he attempts to speak for his patients in a literary rather than scientific language, thus humanising medicine. Likewise, Kate Scannell has a five-page list of names enumerating her dead patients in her memoir Death of the Good Doctor.

III

I make books.

I write what I cannot say.

I make marks with meaning only in

their making.

I paint in colors fearsome and strange.

I make books so I won’t die.

The dialogue is something I am going to miss in letting my books go to an institution [University of New England] and I would hope that—I am carrying out half of the conversation—from time to time somebody would carry on another piece of the conversation. That would be a real gift. (Martha Hall)

22 If the artist’s book as a medium can bring into being a different set of strategies for “doing illness,” in Diedrich’s term (25), how political are these strategies? In the “Martha Hall Collection” at the University of New England, together with twelve of Hall’s books, there is a small amount of foldered material which belonged to the artist, including a copy of Ehrenreich’s article “Welcome to Cancerland,” to which I have briefly alluded. This article, which was published in Harper’s Magazine in November 2001, diagnoses the circumstances behind the shift from the politicisation to the depoliticisation of patienthood, which occurred at the turn of the twenty-first century (Diedrich 48-49); its thesis is that there is “nothing very feminist—in an ideological or activist sense—about the mainstream of breast-cancer culture today” (Ehrenreich 47).

23 Hall’s books do not establish links to radical activist agendas such as environmental or gay/lesbian movements and do not explicitly grapple with questions of difference, such as class and racial disparities, which often determine who is more likely to have access to health care and, possibly, better survival chances. [7]The fact that Hall does not deal with the invisibilities which, for instance, Audre Lorde, a black, lesbian woman with breast cancer addresses in The Cancer Journals (1980), is inevitable given the position from which she speaks: that of a middle-class white heterosexual woman, who has better access to health care and treatment than, for example, women from poor backgrounds. However, as we have seen, they address discourses of victimhood/survival and infantilisation, which Ehrenreich takes issue with in her article, and express anger and frustration, thus questioning the “universally upbeat” stance that Ehrenreich finds disturbing in breast cancer patients (48). These are some of the threads of Ehrenreich’s argument to which Hall seems to respond directly, but, by way of conclusion, I want to draw attention to a little detail in the article which I would like to imagine “spoke” to Hall in a certain way, though of course this is speculation. While commenting on the ultra feminine and infantilising theme in breast-cancer discourse, represented by the teddy bears and the prevailing “pinkness,” Ehrenreich specifically refers to the contents of a bag distributed to breast cancer patients, which, besides cosmetics, includes, to her amazement, “a small box of crayons” (46). The founder of the Foundation who distributes these bags, explains what the crayons are for—they go with a journal and sketch book also contained in the bag “for people to express different moods, different thoughts”—but admits to Ehrenreich that she has never tried to write with crayons herself (46). Now, thinking of Hall’s artists’ books discussed in the previous sections, I would like to suggest that, rather than negating writing, and its power, crayons can, in Drucker’s phrase, “extend its communicative potential” (Figuring 18). “Painting in fierce colors” and “making marks,” which is how Hall describes the process of making books in her book I Make Books from which the first epigraph of this concluding section is taken, is not a solipsistic or merely ornamental activity that promotes infantilisation. It is neither dictated by the parameters of American consumer culture, which is what Ehrenreich finds troubling about mainstream breast cancer culture. While surveying the pink-ribbon-themed breast cancer products, Ehrenreich notes that “I can’t help noticing that the existential space in which a friend has earnestly advised me to ‘confront my mortality’ bears a striking resemblance to the mall” (46). I am not suggesting, of course, that all women with breast cancer should become book artists so that the mall can give its place to what is often perceived as a more elitist space, namely the art gallery, even though, as already mentioned, artists’ books often operate outside the constraints of the art market and gallery system. [8]Stephen Bury suggests that one of the reasons why artists’ books are particularly attractive to women is because these systems are still male-dominated (22). Even so, creating a book and sending it out to the world is different from putting down thoughts in a diary that will not be read by others. As Drucker writes about printing, an important component of book making:

It provides a fundamental means of transforming personal expression into an authoritative form within the social order and the public sphere. The physicality of printing makes that transformation a somatic experience, an act of the body, which moves the interior voice, the personal word, into the cultural domain. (Figuring 4)

The implication is that not all women who write about their illness or create artifacts can reclaim discursive authority, but my point is that writing and drawing do not only serve to communicate personal experiences. Artists’ books are a means through which some women can have a voice; they are therapeutic, but also political insofar as the books are shareable, can provide insights to the process of witnessing and enlarge its circle, and, finally, as we have seen in Hall’s case, can be used to effect change in the ways medical professionals interact with their patients.

24 Artists’ books together with ordinary books exploring illness can become part of a doctor’s training in the context of the ongoing development of medical humanities curriculum units. Like a literary scholar, the doctor is faced with a text, a narrative voiced by the patient, which has to be interpreted. The advantage of artists’ books over ordinary ones is that materiality is foregrounded so that, rather than merely having symbolic status, artists’ books constantly return us to the body. Like patients, artists’ books have to be examined, touched, unveiled, opened, but require physical intimacy and care. They also exemplify different ways of approaching the process of examination itself: Artists’ books can be seen from either a clinical distance or close at hand where turning or unwrapping the pages uncovers more personal feelings and struggles, just as “reading” a patient involves more than anatomy and physiology or conducting a set of bodily scans.

25 Ultimately, the books can open up a new space of communication between patients and doctors that can renew intimacy and generosity, and even reclaim an alternative form of silence:

I am afraid

To speak my fears aloud,

[…]

to hear your answers,

to know what you know,

so do not tell me.

Just turn the page

And close the book.

Do not tell me

now. (86)

The above excerpt is taken from Hall’s book Tell Me. The book stages a silent but meaningful interaction between herself and her doctor; involving a form of communication beyond words, mediated by the book that connects the doctor and the patient as if it were a skin. The doctor is asked to simply turn the pages of the book, as if partaking in a silent ritual, and delay telling the patient what she fears to hear. Considering the importance of “an ethics of touch,” Sara Ahmed writes that “thinking of speaking and hearing in terms of touch might allow us to challenge the very assumption that communication is about expression, or about the transparency of meaning” (155). Transparency is what is aimed for in patient-doctor exchanges (in most contexts), even though the emotional difficulty entailed makes communication difficult. This is why neutrality and silence, in the form of withholding words that can touch another person’s heart, are opted for by the doctor, and sometimes by the patient too. However, as Ahmed adds, “[c]ommunication involves working with that which fails to get across or that which is necessarily secret” (155).