Writing Oneself Back In: Narratives of Care, Grief, and Loss

Each of these two extraordinary books has illness or disability as its primary focus, yet to call either one an illness narrative would reduce its accomplishment. Each book hinges on the author's ability to evoke suffering, but the medical aspects of this suffering—specifically interactions with health care institutions and workers—are background to each book's real interest. "Crying, and screaming, and raging against pain are signs of language undone," writes Christina Crosby (31). Each of these books attempts to recreate a viable language after language has been undone, and thus to recreate a viable self where selfhood was undone. Crosby writes that "living in extremis can clarify what is often obscure, in this case the fragility of our beautiful bodies and the dependencies of all human beings" (10). Alexandra Butler could, on my reading of her book, have written the same thing. Crosby is explicit that there are no "lessons learned" from trauma and disability (116, 189), but there can be clarity gained in reconstructed language. Perhaps that is always the goal of life writing, and these books seem better understood as life writing that happens to focus on illness and disability, rather than illness or disability narratives—a subtle but significant shift.

Walking the Night Road describes several years when Butler was in her mid- to late 20s. Her mother is diagnosed and eventually dies from a brain tumor, specifically glioblastoma. Her father's health declines fairly soon afterwards, and his death reads almost as a coda to her mother's death. Butler's parents were both well-known clinical professionals, independently and in their collaborations. Her father, Robert Butler, was a physician who coined the terms "ageism" and "life review." Her mother, Myrna Lewis, was a psychotherapist. Butler was their only child, although her father had three daughters from a previous marriage. Butler's story, like Crosby's, is one of family relationships. Her parents, in their role as sexologists, were best-selling authors and fixtures on TV talk shows. "I grew up trying not to watch my parents on TV discuss orgasms or age-related erectile dysfunction with Charlie Rose or Phil Donahue," she writes (8). Only at the end of her memoir does Butler recover the charm of her childhood. "We lived in a tree house on the Upper West Side. The potted plants in the living room were thick as a forest" (165). This is the world that illness tears apart.

Butler immerses herself in her mother's care. "The world had shrunk down to my strange, contorted mother. My terrain was the house I had grown up in, now old and shabby and filled with so much sadness" (53). And a bit later: "My father was gone more often than not at this time. And my mother was swallowing me whole as I smothered her" (55). Butler's mother is "contorted" primarily by the steroids that forestall the growth of the tumor. Moments of lucidity—for example, she maintains her psychotherapy practice on the telephone, and in these conversations has an uncanny ability to regain her former voice—alternate with Alzheimer's-like loss of orientation and self-awareness. Painful for her daughter to observe, a once stylish woman becomes perpetually covered with food stains. There is a period, after surgery has healed and before the tumor grows, when illness is all right. "She often said she had never been happier," Butler writes; "We had all grown comfortable in the waiting room between life and death" (93). That does not last long. Soon after, at least in the book's chronology, Butler has a moment of self-cutting. Her work of caring is destroying her.

When Butler writes that "My connection to my own life strained," that seems putting it mildly (63). "I had become a character in a novel...