Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.


Living in the Land of Limbo is an essential anthology for those who teach literature about medicine and anyone who works with patients. It has resonance for bioethicists and medical and family policy makers as well. The collection reminds educators, scholars, and especially healthcare professionals that because patients and caregivers share the experience of illness, the narrative of healthcare is incomplete without stories about familial caregiving.   

For those who have experienced caregiving, Carol Levine's anthology offers the companionship that she seeks in literature. Having cared for her disabled husband for a decade and a half, she understands the isolation of caregiving, which she has eloquently written about in her essay "The Loneliness of the Long-Term Care Giver." Combining her personal experience with her professional life, Levine directs the United Hospital Fund's Families and Health Care Project, a partnership between health care professionals and family caregivers. She has also authored or edited important books, scholarly articles, essays, and policy documents about caregiving.

Along with its accomplishments, the collection productively leaves room for expansion and suggests a direction for scholarly work in health and humanities. Readers might appreciate more works about veterans and about parents who care for adult children. Educators might wish to supplement the collection with Thom Gunn's and Paul Monette's exquisite poems about caring for partners or friends with AIDS. The poems of Marion Deutsche Cohen, whose spare voice of protest is delivered at the limits of human endurance, would also make a valuable contribution to this welcome and beautiful anthology.


Available in hardcover, paperback, and ebook.


Vanderbilt University Press

Place Published

Nashville, TN




Carol Levine

Page Count