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Reading Through Limbo

Posted By Barry Jacobs, Carol Levine, Tuesday, April 01, 2014
Recently, Barry Jacobs interviewed Carol about her new anthology Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press, 2014). Ms. Levine is one of the country's top experts on family caregiving. She cared for her own husband for many years who was cognitively impaired and quadriplegic. 

Barry Jacobs: Your new book, Living in the Land of Limbo, a collection of fiction and poetry about family caregiving, provides new perspectives on the experiences of families living with illness. How did reading these and other creative writings help you during the years you were a family caregiver for your husband? How do these writings inform your work as a family caregiver advocate?

Carol Levine: I’ve always turned to literature as a way to understand the world and find whatever was missing in my own life. As a child I wanted to move beyond the narrow confines of my small rural community. So it was natural for me at a time of great stress in my life, caring for my late husband, that I would find solace (and escape) in stories and poems. I didn’t start out looking for pieces about caregivers; they just seemed to turn up. What some people find in support groups I found in books. As a family caregiver researcher and advocate, these stories have given me a deeper appreciation of both the universal themes in caregiving and the specifics of each individual’s situations. I try to be careful of making generalizations about “what caregivers want and need,” because each person comes to caregiving with a different life experience.

 These stories have given me a deeper appreciation of both the universal themes in caregiving and the specifics of each individual’s situations
BJ: Can you describe a few of your favorite pieces in this book, or perhaps telling moments in those pieces that particularly struck you?

CL: Among the first pieces I read were two poems that appeared in 1998 in the same issue of The New Yorker: “The Ship Pounding” by Donald Hall and “The Sick Wife” by his wife Jane Kenyon, who was dying of leukemia. Hall likened the hospital to a ship “that heaves water month/after month; without leaving port, without moving a knot,/without arrival or destination,/its great engines pounding.” That metaphor captured my own sense of being trapped in a huge machine that operated mechanically, without much consideration of the passengers (the patients) and visitors (family members), who wanted only to disembark and return to normal life. Kenyon’s poem, on the other hand, brought back my own experience of being treated for a serious illness and feeling so overwhelmed by fatigue that ordinary activities seemed impossible.

Unrelated to my personal experiences, one of the last pieces to make it into the book is Julie Otsuka’s story, “Diem Perdidi” (I have lost the day). This is a moving and brilliantly written account of the persistence and unpredictability of memory in an aging Japanese-American woman, who was interned as a child in World War II. She remembers the daughter who died shortly after birth but not the one who survived and is her caregiver.

BJ: What kinds of lessons can family-oriented healthcare providers glean from fiction and poetry?

CL: I’m wary of suggesting that anyone read these selections to find “lessons” for their own caregiving or for clinical practice. Although many are based on real people and real events, they have been transformed by the authors in the mysterious process called creativity. What providers can glean is a deeper appreciation of the complexities that people bring to a clinical encounter beyond the specific problem that needs attention. Each family’s experience should be approached as a story that is still unfolding. Providers should be open to the “back story” as well as the current chapter. However the story ends, it is the family that has to live with it and tell it over and over.

BJ: What do fiction and poetry add to the growing number of caregiver memoirs?

“Fathers and Sons,” he writes: “Some things, they say,/One should not write about. I tried/to help my father comprehend the toilet….” CL: No single medium captures the whole of the family illness experience. Memoirs tell the story from start to finish, and in retrospect, while stories and poems capture a moment that encapsulates the whole. Memoirs are (or purport to be) based on fact. Fiction and poetry tell an emotional truth, which is sometimes downplayed in memoirs out of consideration for the real people whose lives are being recounted. For example, in Rick Moody’s story “Whosoever: The Language of Mothers and Sons,” that narrator is a son bathing his aging mother. In an almost Biblical incantation, Moody writes: “Whosoever knows the folds and complexities of his own mother’s body, he shall never die” (italics in original). David Mason addresses the distinction between memoirs and poetry directly. In his poem, “Fathers and Sons,” he writes: “Some things, they say,/One should not write about. I tried/to help my father comprehend the toilet….” In fiction, a character can reveal innermost feelings, even hostile ones, and behaviors like marital infidelity, in ways that are often glossed over in memoirs.  

BJ: Do any of the stories or poems in your collection focus on the family's experience of collaborating with healthcare professionals?

CL: A few. When I first started thinking of my pile of stories and poems as a book, I thought I would find more that dealt specifically with relationships with healthcare professionals. But I soon realized that professionals come and go in caregiving situations while the family’s life goes on and on. Still, there are some examples. Lorrie Moore’s story, “People like That Are the Only People Here,” takes place in a hospital where a baby has to have a kidney removed, and the mother encounters the blunt language of doctors. In Allegra Goodman’s story, “The Closet,” a social worker comes to the old Hawaiian house where Lily is living with her sister Evelyn and her family. Lily, a former child prodigy, now lives in a closet, comes out only at night, and depends on Evelyn to bring her food. The social worker acknowledges that Lily is mentally ill but is not at risk for harming herself or others so living in the closet is a “ lifestyle choice.” The impact on the family–Evelyn loses her job, her husband is furious because the house is overridden by termites that cannot be cleared unless the house is empty—none of this enters the social worker’s calculus. On the more positive side, in Dick Allen’s poem, “Parents’ Support Group,” a therapist slowly opens the session of a group of parents whose children are suffering from drug abuse, anorexia, self-mutilation, and other manifestations of self-hate. Only one story has a therapist as a main character: Amy Hanridge’s “Starter.” Judy Jones is the “shrink” who tries to help Kayla, an Apache woman who served in the Marines in Iraq, to adjust to civilian life and to reconnect with her mother and sister.

BJ: Is there a role for the creative arts in the training of physical and mental health professionals?

CL: Reading fiction and poetry, like analyzing paintings and listening to music, is an enriching and humanizing experience that better equips professionals to listen carefully, ask good questions, and pay attention to words and body language. These are skills that are all too often inadequately addressed in professional training and are at the heart of meaningful communication.

Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (2006, Guilford) and the forthcoming Caregiving Family Stories & Beliefs, a collection of 25 of his previously published essays and case stories on families and illness.


 Carol Levine directs the Families and Health Care Project and the Next Step in Care campaign at the United Hospital Fund in New York City. She is a Fellow of The Hastings Center, a bioethics institute, and writes frequently about ethical issues in health care. Her previous CFHA blog posts are available here and here

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