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2. Disease and Pain: American Voices in the First Person



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1If a French surgeon once defined health as “life in the silence of organs” (René Leriche), then what happens when the body becomes sick and organs no longer keep quiet? Do organs speak, do they sing, do they yell or howl? How do they signal that the time of health—often seen as the golden age of the body, a peaceful period when it is blissfully whole, united and sane—is over? How do they signify that a new time has come, when fissures and fractures become visible, lumps and rashes palpable, fever and fears perceptible, nightmares and death rattles audible?

2The essays gathered here deal with American texts written in the first person and attempting to say the disaster of the body confronted with symptoms and pains, open wounds or oozing scars, incurable diseases and unconsolable hearts. Whether they write autobiographical novels, essays, memoirs or diaries, their authors (Emily Hawley Gillespie, Gloria Anzaldúa, Linda Hogan, Hervé Guibert, Mark Thompson, David Feinberg…) all evoke their broken or infected bodies, this corporeal fragmentation that most of the time induces a fragmentation of the self, pain leading body and mind to break apart. They are autopathographers, that is, authors of “book-length narrative[s] about [their] illness.” (Hunsaker Hawkins, xiv) For all of them, their diseases invade and occupy their lives and writing spaces, eating up both their organisms and pages. For all of them, writing is a matter of surviving, sometimes of life and death, and involves the whole body, as broken as it may be: it is a physical, often exhausting activity which records the tyranny of pain, keeps track of bodily changes and signs of decay, contemplates the possibility of recovery, decline or death.

3For two of the writers, the disease and pain of an individual are linked to a historical past that remains a vivid source of suffering: Mirella Vallone and Joanna Ziarkowska show how, both for Gloria Anzaldúa and Linda Hogan, the body is colonized and dismembered by a present illness as well as by past traumas which are deeply anchored in memory and “replicated, like DNA, in contemporary […] bodies.” (Ziarkowska) The individual becomes the site where an oppressing disease blocks the horizon while an ageless wound keeps reviving the past. And the body becomes a map, both exhibiting the physical wounds and recalling geographical and historical ones.

4Christelle Klein-Scholz and Tomasz Basiuk analyze AIDS memoirs written by gay men who are either contaminated by the disease or witnessing its progression in lovers and friends. Christelle Klein-Scholz focuses on the body, this changing “supertext” which displays and measures the apparition and progression of the disease, and ultimately serves as a concrete countdown before the final collapse. Her analysis raises the paradoxical issue of the possible aestheticization of disease and pain, of the ambiguous images of the body in the texts born of AIDS. Tackling similar issues, Tomasz Basiuk compares the texts of two writers who use a gothic imagery with very different results: the first one accepts “his wasting away, physical but also broadly existential” and faces his already dead face in the mirror (Guibert) while the other, witnessing and participating in his brother’s death agony, (vainly) hopes to meet his own shadow as a step towards self-knowledge (Thompson).

5Finally, Claire Sorin offers a reading of the consequent and proteiform diary of a farmer’s wife in 19th-century Iowa, the last volumes of which are essentially devoted to the progression of her invalidating, paralyzing, debilitating illness. “A testimony of martyrdom” seeking to “immortalize its author as an ideal mother, patient wife and perfect invalid,” the diary both reflects Gillespie’s failed marriage and her failing body. Claire Sorin analyzes the tortuous relationship that links the diarist’s body and the diary’s body “engaged in a complex mirror effect involving and evacuating physical pain.”

6Indeed, what is at stake in illness narratives? For Sorin, diary writing and the unfolding of its daily story seem to aim at “patching the smashed pieces of [the] self, restoring [the author’s] unity.” This idea of re-membering the broken body and the fragmented self runs throughout those texts. Is illness writing a healing—albeit painful—process allowing to make sense of the suffering and helping to bring out a new, unknown voice (Anzaldúa)? Can pain be inspiring, the wound a fertile metaphor, as is the case for the clay woman in Linda Hogan’s memoir? Those texts question the very definition of health used in the beginning of this introduction: indeed, in many ways, illness writing deconstructs the image of the healthy body as a united, sane and whole entity to which disease irremediably brings fragmentation and decay, to propose another vision of the body as endowed with an internal strength allowing it to adapt to disease and its disorders, and even to discover a voice including them. Samuel Beckett once said that the task of the artist was to find “a form to accommodate the mess,” a form “of such a type that it admits the chaos and does not say that the chaos is really something else.” (Driver 23) The sentence could apply to autopathographers: their narratives acknowledge and—yes, admit the disease, evoking it bluntly and most of the time rejecting metaphorization, as a famous essay once advocated it. Their task, often made even more painful by their awareness of writing facing a countdown clock, is to invent “a language invested with the corporeal.” (Ziarkowska)

7Virginia Woolf once ironically remarked that “[t]he merest schoolgirl when she falls in love has Shakespeare or Keats to speak her mind, but let a sufferer try to describe a pain in his head to a doctor & language at once runs dry.” (Woolf 15) Woolf’s statement underlines one of the great difficulties autopathographers have to face: it is one thing to speak about one’s disease, to angrily denounce the situation of gay men decimated by AIDS in the early years of the epidemics, for instance, or to testify to the lasting traumas of either Native Americans or Mexican-Americans. But it is quite another one to speak from the disease, to give a voice to the pain, to have it sound on the page and to convey it to the reader. Reading certain entries in Gillespie’s diary or Feinberg’s text, for instance, one may have the sensation that acute pain exhausts the author’s voice, threatening to silence it. In other cases, on the contrary, the narrative voice manages to act as a painkiller and to allow the patient-writer to sing from his bed of pain. The illness narrative appears as a fragile, shimmering, changing surface on which the sick voice either dies or resonates.

8A surface that lives and pulses. The body of the text welcomes a writing that is sometimes physically altered by disease and pain (the diarist’s handwriting becoming less and less visible), sometimes contaminated, infected by the disease. Marie Darrieussecq argues that Guibert’s illness reflects into the hybrid form of autofiction that he chooses for À l’ami qui ne m’a pas sauvé la vie: “He explicitly inoculates his writing with the ‘right/wrong’ virus in order to say the course of the infection in the text, by reproducing in the very body of the book the ‘luring process’ that AIDS is.” (Darrieussecq 378, my translation) Guibert’s writing thus becomes a research laboratory for AIDS, the text an exploration field.

9In quite a mysterious passage, Paul Valéry wrote that “[c]e qu’il y a de plus profond chez l’homme, c’est la peau” (“What is deepest in man is his skin”), a sentence that suggests the puzzling interface between surface and depth, between the skin and the unfathomable thought. Referring to it, Gilles Deleuze advances that “[i]t is by following the border, by skirting the surface, that one passes from bodies to the incorporeal” (Deleuze 10)—the very gesture of autopathographers.

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Darrieussecq, Marie. « L’autofiction, un genre pas sérieux ». Poétique, n° 107, septembre 1996.

Deleuze, Gilles. Logique du sens. Paris : Minuit, 1969. The Logic of Sense. Translated by Mark Lester. New York : Columbia University Press, 1990.

Driver, Tom. “Beckett by the Madeleine”. An Interview with Samuel Beckett. Columbia University Forum, 1961, 4.

Hunsaker Hawkins, Anne. Recontructing Illness. Studies in Pathography. West Lafayette, IN : Purdue University Press, 1999.

Valéry, Paul. L’Idéée fixe. Paris : Gallimard, La Pléiade, Œuvres II, 1974.

Woolf, Virginia. On Being Ill. London: Hogarth Press, 1930.

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Sophie VALLAS, « Introduction », E-rea [En ligne], 12.1 | 2014, mis en ligne le 13 décembre 2014, consulté le 28 mars 2017. URL :

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Aix-Marseille Université, LERMA EA 853

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