Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma

Disrupting the Academic Self: Living with Lupus

Illness is a real loss of control that results in our becoming the Other whom we have feared, whom we have projected onto the world … —Sander Gilman, Disease and Representation (1988, 2) Accounts of chronic illness, including this “autobiocritical” discussion of living with Systemic Lupus Erythematosus (lupus), often confirm the observation cited above: the social and physical impositions of chronicity or disability confront the self with something that the self resists. I see this as an encounter with the face or gaze of the Other, which can involve losing one self and finding another—a master narrative only retold because it is hard to hear. As an English professor, I was suspicious of such narratives ; and because I saw myself as an entitled Western subject, gender notwithstanding, I could not envision citizenship in an “other” domain. (Here and elsewhere, I employ Susan Sontag’s widely cited spatial conception of illness as its own kingdom, now a major trope of autopathographical studies. In illness, she states, we carry a different passport and become “citizens of that other place” [1978, 3]). Moreover the othering process of chronic illness can only be recognized retrospectively, often via testimonial —and sle’s retrospective is particularly attenuated because it is an “exacerbating-remitting” condition (Toombs 1995, 7), taking seven years, on average, to diagnose. Furthermore, one is shunted from “self-in-illness ” to “self-in-life” (Hawkins 1999, xviii) by sle’s active and dormant phases (called “flares”); it therefore takes longer than it might with an unremitting condition to let go of the triumphal narrative of the “old self” beating the adversarial other of lupus. Nor does it help that everyone 171 janet macarthur Disrupting the Academic Self Living with Lupus wants to hear this story of triumph, inured as everyone is to modern “medicine ’s single-minded telos of cure” (Frank 1995, 83). Lupus is not a battle to be won; it is an estrangement from self, an othering produced by the arbitrary shunting back and forth from remission stage “self” to active phase “Other.” Poststructuralist analysis asserts that Western culture constructs the Other as a “lack” of essence, presence, or autonomous identity. The body and its functions have often been situated in this lack. (Arthur and Joan Kleinman have attempted to address this discursive lack in their term the “body self” [1994, 716]). Illness and other extreme experiences confront —indeed, inhabit—consciousness with the body’s presence; in cases where life is lived in extreme privation or pain, the body’s needs press in and become identity. Trying to convey life lived in extremis, where body is sovereign over spirit/reason, is difficult, however, for expressions of the materiality of pain, viewed as inessential, are taboo, and therefore to be shamed, denied, or euthanized. Our discourses only grant legitimacy to an experience of pain where intellect, reason, and spirit are represented as transcendent over pain. Life lived in extremis is, therefore, life lived as other. In 1997, I was diagnosed with lupus, a treatable but incurable autoimmune condition. Lupus flares, often characterized in language drawn from the battle myth of illness (Hawkins 1999, 61–77), occur when antibodies that fight “foreign” viral and bacterial “invaders” begin to “target” the body’s connective tissue, producing a kind of somatic civil war. I no longer find this allegory useful in relating the psychosocial and physical course of lupus, which I now see not as an adversary in an agonistic narrative of struggle but as a mutation or remapping of self, a rerouting of self and its itineraries, the body’s networks, and the body’s terrain. Unlike military metaphors more suited to acute illness, a spatial/geographical, and therefore imagistic, conception of lupus enables me to acknowledge the othering effects of lupus as part of me. The chronicity of lupus and the unpredictability of its flares and remissions mean that one’s “true self” or the “self-in-life” does not eventually emerge from behind some inauthentic sick self and go on, but that the “self-in-illness” presses for integration into self. Julia Kristeva’s notion of abjection as a liminal space between self and other is useful here: the abjection of lupus refuses to respect the culturally constructed boundary between self-in-health and self-in-illness. The abject is, for Kristeva, that which “disturbs identity, system, order. What does not respect borders, positions, rules.” The abject is “filth, waste, pus, bodily 172 representing the subject [3.138.172.0] Project MUSE (2024...