Summary:

The author, a scholar of autobiography and other forms of life writing, has expanded his scholarship to include what he calls "autopathography"--autobiographical narratives of illness and disability. This book is the result of an extensive study of such narratives. The works discussed are full-length and recently published--most were published in the 1980s and 1990s. Couser is particularly interested in issues of narrative authority, in how autopathography can be counterdiscursive to the prevailing biomedical narrative, and, especially, in how autopathography is counterdiscursive to the cultural stigmatization and marginalization that often accompany illness or disability ["insofar as autobiography is the literary expression of the self-determined life" (182)].

Since social/cultural counterdiscourse is of particular importance to Couser, he has focused on four specific illnesses/disabilities that have been associated with stigma: breast cancer, AIDS, paralysis, and deafness (182). His analysis of each condition is diachronic because he is searching for "the enrichment of the genre by successive writers who defy, complicate, or refine its conventions" (44). In addition, Couser asks, to what extent do authors "integrate illness narrative into a larger life narrative?" (14). He considers who narrates illness stories (biographer or autobiographer), how the stories are constructed, whether and how they achieve a "comic plot" and narrative closure.

The book's introduction (chapter 1, "Human Conditions--Illness, Disability, and Life Writing") provides a framework, relating what will follow to current issues in life writing, "identity politics," the culture of medicine, and illness experience, as well as to other work on illness narratives such as Anne Hunsaker Hawkins's Reconstructing Illness: Studies in Pathography and Arthur Frank's The Wounded Storyteller (annotated in this database).

Chapter 2, "Medical Discourse and Subjectivity," develops further the questions of narrative authority, representation, and resistance to a dominant medical or cultural narrative. Each subsequent section--breast cancer, AIDS, paralysis, deafness--is prefaced by an informative discussion of the cultural and narrative issues that are relevant to the particular condition; the subsequent analyses of individual texts further elaborate these themes.

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In 1977 Marion Cohen's physicist husband, Jeffrey, was diagnosed with multiple sclerosis. He was 36 years old. Cohen, a mathematician and poet and mother of four, became his chief caregiver. As her husband's illness progressed, the caregiving role became increasingly absorbing, demanding, all-encompassing. Eventually daytime attendants were hired but sometimes they didn't show up. This collection of 77 poems is a kind of journal, primarily from late 1989 through January, 1991, that chronicles Marion's ambivalent caregiving, despair, resignation, "temper tantrums," love, and compassion.

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Frank argues that the modernist conception of illness is a form of "colonization" in that the ill person hands over his or her body (and life narrative) to biomedical expertise. In a post-modern conception, however, the ill person reclaims the authority and ability to tell his or her own story, and to construct a new life narrative from the "narrative wreckage" of serious illness or injury.

Frank identifies four dimensions by which one's relationship to the body may be understood: control versus contingency, self-versus other-relatedness, dissociation versus association with the body, and desire versus lack of desire. Frank presents a diagram (p. 30) in which he sketches four "ideal typical bodies" that arise from various combinations of control-contingency, etc. These include (a) the disciplined body, (b) the mirroring body, (c) the dominating body, and (d) the communicative body. While the first three lead to problems in constructing a satisfactory illness narrative, the last is an "idealized type" in that it is not only descriptive, but also "provides an ethical ideal for bodies." (p.48)

Frank then categorizes patients' illness narratives into three main themes: (a) restitution narratives, in which the plot involves returning to one's previous state of health; (b) chaos narratives, in which all life events are contingent and no one is in control; and (c) quest narratives, in which illness is seen as a spiritual journey. This understanding serves as a starting point for a narrative ethic of illness.

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The story begins with Theodore Roosevelt's funeral. The narrator, a reporter with the New York Times, decides to tell a story that happened more than 20 years earlier in 1896 when Roosevelt was Police Commissioner of New York City. A serial killer is murdering young male prostitutes.

Roosevelt invites the infamous Dr. Laszlo Kreizler to form a special unit to track down the killer. The unit also includes the narrator and three members of the police department. Kreizler's qualification is that he is an alienist who champions the radical new concept of forensic psychiatry: the belief that one can predict a criminal's behavior by reconstructing his personality based on evidence in the crimes themselves. This concept smacks of determinism. Thus, Kreizler was violently opposed by many, including the religious establishment, who believed Kreizler was denying that people were morally responsible for their crimes.

Because of the sensitivity of their mission, the small investigative unit operates secretly, but runs into powerful opposition. Over several months Kreizler and his colleagues perform the seemingly impossible job of identifying and tracking down the killer, using Kreizler's psychological methods.

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The author introduces his book by saying, "I should like to write a book to help people cope with inexplicable pain and suffering." He is "profoundly suspicious" of the genre of books that attempt to explain why a good and all-powerful God allows us "to undergo suffering for seemingly no reason." Thus, he distinguishes his investigation from theodicy in the traditional sense (an explanation of why God allows suffering); rather, Hauerwas wishes to explore why human beings believe it is so important for us to ask why God allows suffering.

The narrative backbone of this book is provided by fictional and non-fictional texts about the suffering and death of children. The prime fictional example is The Blood of the Lamb, Peter De Vries's 1961 novel about an 11-year old girl who dies of leukemia and the anguish of her father. This fiction, however, was based on De Vries's personal experience. [See annotation in this database.] Hauerwas also explores several non-fictional accounts of dying children, especially Where Is God When a Child Suffers? by Penny Giesbrecht, The Private World of Dying Children by Myra Bluebond-Langner, and Lament for a Son by Nicholas Wolterstorff.

Traditionally, suffering and death were interpreted in the context of religious meaning (e.g. part of God's plan, punishment for sin, etc.) Yet, the fact that God allows evil--in the form of suffering--to occur poses a problem, if God is both all compassionate and all-powerful. Modern medicine dispenses with the meaning of illness--disease and suffering are pointless and should be eliminated, if possible. Likewise, in modern society our preferred death is sudden like a bolt of lightning (no suffering), while in the past people looked for a "good death," which might involved a period of suffering during which the person could become reconciled to family, friends, and God.

Nonetheless, even if we adopt a scientific point of view, as human beings we can't help attributing narrative meaning to our illnesses. Thus, when adults suffer, we place their suffering in the context of a life story that may include a number of layers and dimensions. We "dilute" the suffering in the context of story. However, childhood suffering and death appear to truncate narratives, sometimes even to abolish them. Therefore, the suffering seems particularly meaningless, and it feels more "evil" and more devastating.

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A seated naked figure, back to viewer, embraces another facing forward, her hands covering her eyes and face. To the left of the couple, clearly "attached," is a third, amorphous, dark menacing, shadowy entity literally touching the pair. The empty space to the right of the figures is filled only with a wallpaper pattern, suggesting, on a cursory glance, that the painter was more interested in composition than content.

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A thirty-five year old English professor (and brilliant writer) diagnosed with ALS (Amyotrophic lateral sclerosis, Lou Gehrig’s disease) is told he has less than five years to live. Nine years later he publishes a series of 12 personal essays that chronicle his remarkable journey from diagnosis ("Getting Up in the Morning") to being mindful, "cultivating the eternal present" ("Living at the Edge"). He shares with us the interim of conundrums, spirituality, and the quotidian by reflecting on his New Hampshire life: Unfinished Houses, Wild Things, Mud Season, Winter Mind.

In almost every essay Simmons reflects on the rewards of "mystical seeing". We all have "within us this capacity for wonder, this ability to break the bonds of ordinary awareness and sense that though our lives are fleeting and transitory, we are part of something larger, eternal and unchanging." (p. 152) "Most of us have found that a line of poetry or scripture, a passage of music, the turning of a leaf in sunlight, or the sight of a child splashing in a stream can suddenly become a doorway through which, as William James writes, ’the mystery of fact, the wildness and the pang of life, steals into our hearts and thrills them.’" (p. 101)

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In the foreground, staring directly at the viewer, white tears visible on her cheeks, the artist lies immobile in a four poster hospital bed, only her head visible above the white sheet covering that is decorated with pale, pastel circles of cells or microscopic organisms.  The towering wooden oak easel that held her canvases, allowing Frida to paint when ill, is now the structure supporting a funnel of physical and emotional preoccupations erupting as vomit from her mouth: fish heads, dead chicken carcasses and fowl entrails, and skull inscribed with her name.  The background is a barren, parched and cracked desert.  The solitary objects in the sky, a moon and red-orange rimmed sun, suggest being trapped eternally, day and night, in this state, "Without Hope" --the painting's title. On the back of the painting Kahlo wrote, "Not the least hope remains to me....Everything moves in tune with what the belly contains."  [Hayden Herrera. Frida Kahlo: The Paintings (New York: HarperPerennial) 2002, p. 187]

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Aging, Jewish-Canadian gum-shoe, Benny Cooperman, awakes in hospital from a coma to discover that he has forgotten many things about himself and his recent past. He has also lost the ability to read, although he still can write: alexia sine agraphia. The therapists give him a memory book as an aide to functional recovery; he must record vital information for later deciphering. He learns that he was found unconscious in a dumpster with a blow to the head; beside him lay the corpse of a woman professor.

Leaving the hospital only once (without permission), Cooperman uses dogged determination and ingenuity to unravel the complex academic homicide. Adapting to his own disability proves just as demanding to Cooperman as solving the murder. Without giving away the ending, this "whodunit" involves premonitory dreams, pretty students, rogue professors, a crusty underworld, and drugs. Engel's trademark light touch and vignettes of Toronto and its University colleges and hospitals add humor and credibility to the vivid yarn.

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