. Quoted in Lawrence Langer, Holocaust Testimonies: The Ruins of Memory
(New Haven: Yale University Press, 1991), 89.
. Quoted in Arthur W. Frank, The Wounded Storyteller
, 2nd ed. (Chicago: University of Chicago Press, 2013), 133.
. Audre Lorde, The Cancer Journals (San Francisco: spinsters/aunt lute, 1980), 20.
. For these experiences, see Arthur W. Frank, At the Will of the Body: Reflections on Illness
(Boston: Houghton Mifflin, 1991).
. Quoted in Frank, Wounded Storyteller
. Anatole Broyard, Intoxicated by My Illness
(New York: Clarkson Potter, 1992), 52.
. Henri Nouwen, The Wounded Healer
(New York: Image Books, 1990).
. Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition
(New York: Basic Books, 1988), 211ff.; Larry Dossey, Beyond Illness: Discovering the Experience of Health
(Boulder: Shambhala, 1984), 193ff.; Bill Moyers, Healing and the Mind
(New York: Doubleday, 1993), 315ff.
. Rita Charon, “The Narrative Road to Empathy,” in Howard Spiro, Mary G. McCrea Curnen, Enid Peschel, and Deborah St. James, eds., Empathy and the Practice of Medicine: Beyond Pills and the Scalpel
(New Haven: Yale University Press, 1994), 158.
. Søren Kierkegaard, Either/Or, Part II
, ed. and trans. Howard V. Hong and Edna H. Hong (Princeton: Princeton University Press, 1987), 260.
. Charles Lemert, ed., Social Theory: The Multicultural and Classic Readings
(Boulder: Westview Press, 1993), 1.
1. WHEN BODIES NEED VOICES
. Personal communication. All attributed quotations are used by permission. Unattributed quotations, where the speaker/writer was not available to give permission, may be altered to preclude identification.
. Here and below I seek to adhere as much as possible to established usage that differentiates the “disease” as a physiological process from the “illness” as a social experience of that disease. Yet my attempt to consider illness stories as embodied also deconstructs the distinction: the illness experience is an experience in and of a diseased body. This book is about the precariousness of the accepted thinking, as well as of the professional and institutional practices, that too strictly separate disease from illness.
. Martin Buber, I and Thou
, trans. Ronald Gregor Smith (New York: Scribners, 1958), 6.
. An excellent popularization of scientific research is found in the interviews with Candace Pert (177–93) and David Felton (213–37) in Bill Moyers, Healing and the Mind
(cf. Preface, n. 2). The social implications of what can be called mind/body research have been developed furthest in cognitive science, in particular: George Lakoff and Mark Johnson, Metaphors We Live By
(Chicago: University of Chicago Press, 1980), Mark Johnson, The Body in the Mind: The Bodily Basis of Meaning, Imagination, and Reason
(Chicago: University of Chicago Press, 1987), George Lakoff, Women, Fire, and Dangerous Things: What Categories Reveal about the Mind
(Chicago: University of Chicago Press, 1987), and Mark Johnson, Moral Imagination: Implications of Cognitive Science for Ethics
(Chicago: University of Chicago Press, 1993).
. Another point of usage: I have tried to use story
when referring to actual tales people tell and narrative
when discussing general structures that comprise various particular stories. But since narratives only exist in particular stories, and all stories are narratives, the distinction is hard to sustain.
. On the distinction of “postmodernity,” as a time period, and “postmodernism,” as a style, see Mike Featherstone, “In Pursuit of the Postmodern: An Introduction,” Theory, Culture & Society
5 (1988): 195–215. Below I use the adjective “modernist” to remind readers that I mean the modern period, not simply what is contemporary. My usage, however, is informed less by academic debates than by popular usage: “postmodernism” is the term I read in my daily paper.
. Albert Borgmann, Crossing the Postmodern Divide
(Chicago: University of Chicago Press, 1992).
. Pierre Bourdieu, Outline of a Theory of Practice
(Cambridge: Cambridge University Press, 1977), 166.
. See chapter 4, note 5, below.
. George S. Bascom, “Sketches From a Surgeon’s Notebook,” in Spiro et al., Empathy and the Practice of Medicine
, 29 (cf. Preface, n. 3).
. The complementary change that marks this side of the postmodern divide is that the medical story is increasingly trumped by the administrative story, but that postmodern trend is the topic for a different book than this one.
. Arthur W. Frank, At the Will of the Body: Reflections on Illness
(Boston: Houghton Mifflin, 1991), 138ff.
. Personal communication.
. Susan Sontag, Illness as Metaphor
(New York: Vintage, 1978), 3.
. Dan Gottlieb, “Patients must insist that Doctors see the Face behind the Ailment,” The Philadelphia Inquirer
, July 4,1994.
. Elizabeth Tyson, “Heal Thyself,” Living Fit
, Winter 1994, 38.
. Claudine Herzlich and Janine Pierret, Illness and Self in Society
(Baltimore: Johns Hopkins University Press, 1987), 23. Stanley Joel Reiser quotes the seventeenth-century physician Thomas Syderham, “Nature, in the production of disease is uniform and consistent; so much so, that for the same disease in different persons the symptoms are for the most part the same; and the self-same phenomena you would observe in the sickness of a Socrates you would observe in the sickness of a simpleton.” The unavoidable implication is that all patients, for diagnostic purposes, might as well be simpletons. Reiser’s conclusion is more moderated: “Thus the symptoms that combine patients into populations have become more significant to physicians than the symptoms that separate patients as individuals.” (“Science, Pedagogy, and the Transformation of Empathy in Medicine,” in Spiro et al., Empathy and the Practice of Medicine
. Gayatri Chakravorty Spivak, The Post-Colonial Critic: Interviews, Strategies, and Dialogues
, ed. Sarah Harasym (New York: Routledge, 1990), 73.
. Susan Bell, “Political Gynecology: Gynecological Imperialism and the Politics of Self-Help,” in Phil Brown, ed., Perspectives in Medical Sociology
(Prospect Heights, Ill: Waveland Press, 1992), 576–86.
. For another story of lay narratives achieving a collective voice in opposition to orthodox medicine, see Martha Balshem, Cancer in the Community: Class and Medical Authority
(Washington: Smithsonian Institution Press, 1993).
. Physicians, who certainly have their own stories, express their version of post-colonialism when they object to having their experiences of caring for patients taken away from them. A physician employed by an HMO says, “I don’t want to manage clients
, I want to care for patients
. I don’t want to hide behind bureaucratic regs and physician assistants. I want to do the caring.” Quoted by Kleinman, The Illness Narratives
, 219 (cf. Preface, n. 2).
. One indicator of the need for storytelling about illness are “grass roots” publications such as Expressions: Literature and Art by People with Disabilities and Ongoing Health Problems
(Sefra Kobrin Pitzele, editor; P.O. Box 16294, St. Paul, Minn. 55116–0294) and Common Journeys
(Leslie Keyes, editor; 4136 43rd Avenue South, Minneapolis, Minn. 55406). Storytelling also takes place in numerous journal writing workshops conducted in all illness support centers I have visited or received information from. The truly postmodern form of storytelling among the ill are electronic messages exchanged in media such as the Internet. An increasing number of specialized “nets” exist for illness stories. On Internet stories, see Faith McLellan, “From Book to Byte: Narratives of Physical Illness,” Medical Humanities Review
8 (Fall 1994): 9–21.
. Anthony Giddens, Self and Society in the Late Modern Age
(Cambridge: Polity Press, 1991), 75.
. Rainer Maria Rilke, “Archaic Torso of Apollo,” New Poems , The Other Part
, trans. Edward Snow (San Francisco: North Point Press, 1987), 2. “Du muβt dein Leben ändern.”
. Zygmunt Bauman, Mortality, Immortality, and Other Life Strategies