In a society where 50 million people are caring for someone with a chronic or terminal illness, there is no shortage of literature on the subject, from academic papers to memoirs to practical guides. But in this new anthology, the first of its kind, the "literature" is really that.
Living in the Land of Limbo is filled with poems and stories about caregiving from some of the most renowned authors of the past half-century: Alice Munro, W.S. Merwin, James Dickey, Robert Pinsky, Mary Gordon, Rosellen Brown, C.K. Williams and 26 others.
How does one "review" such work? The answer is, one doesn't — but rather considers what their stories and poems have to offer the rest of us. The editor is Carol Levine, director of the United Hospital Fund's Families and Health Care Project, herself the author of many papers about family caregiving for leading medical journals.
She began collecting these pieces almost accidentally, during sleepless nights spent caring for her husband, Howard, who was left a quadriplegic with traumatic brain injury after an automobile accident. He lived in that state for 17 years; for solace and meaning, Levine turned to reading.
She organises the book not by genre but by relationship: children of ageing parents; husbands and wives; parents and sick children; relatives, lovers and friends; and paid caregivers.
Many of the stories and poems are about AIDS, beautiful and heart-rending but dated by treatment breakthroughs that make them seem like sepia-tinted photographs. And the section on parents and children - though graced by the magnificent People Like That Are the Only People Here, by Lorrie Moore — should have included autism. The incidence demands it, and the literature exists.
I devoured the rest, the world fallen away, reading as I remember from childhood, heedless of traffic as I crossed the street with my nose in a book. What I found were three qualities that are the singular strengths of fiction and poetry.
First, the unsayable can be said, without the need to pretty it up or tone it down to spare a loved one's feelings. People don't merely "soil themselves," as how-to books would have it: Poets and storytellers have the freedom to tell us what they actually do, how it smells, how it feels.
Second, they give vent to the rage and selfishness that are not just felt but sometimes acted out in silly and spiteful ways — yet are described here without shame.
Finally, fiction and poetry afford an almost infinite choice of points of view.