I soon realized reading was not enough; I wanted to write books of my own. So I spent hours in my hidden perch in an apple tree with pencil and notebook, writing my versions of Greek myths, fairy tales, girl detective stories, orphan adventures, and much more. I created fantasy worlds, as much to dispel the isolation of being the only Jewish child in an openly anti-Semitic environment as to further any literary aspirations.

By the time I got to high school, I had left the apple tree and story writing behind. I continued to read everything and anything, not only from the village library but also from the larger library in the nearby town. Miss Tess Lennon, an exceptional English teacher, encouraged me to write essays, book reports, and news stories. Off I went in that direction, never looking back. Until now.

No, this is not a story about a woman who rediscovered a childhood passion and was recognized as a great writer in her later years. I am no Edith Pearlman, Penelope Fitzgerald, or Alice Munro. I haven’t written a novel or short story collection that will be the subject of admiring reviews. My literary accomplishments are much more modest, but meaningful to me.

 

One of the benefits of growing older is the large store of experiences and memories that can be drawn upon to inform a project. For me that project was collecting and editing a book of short stories and poetry about family caregiving. Both in my professional life as director of a project on family caregiving and the health care system and in my personal life as my disabled husband’s caregiver, I read many books and articles with advice on how to manage the care of a chronically ill or disabled person. I read research articles about caregiver burden and policy reports about programs to assist caregivers. I read memoirs by people who had lived through the experience. And I wrote short personal narratives, research reports, and policy recommendations. I became part of the “literature” about family caregiving.

And yet something was missing. Nothing I read captured the emotional truths about family caregiving – the things that are sometimes too painful to acknowledge or too socially unacceptable to admit. Memoirs came closest, but writers in this genre have to adhere (more or less) to the facts and be mindful of sensitivities. Fiction and poetry have no such boundaries, and that is where I found what I was looking for.

Caregiving, I had learned through many years’ experience, is often a series of crises followed by periods of tedium. In these slower times, you prepare for the next crisis, which typically is not what you prepared for. At night, when my husband watched sports on television or after he fell asleep, I was not off duty. I was always on call. I looked for short stories and poems as a diversion.

Many of the stories and poems I was reading turned out to be about caregiving. They didn’t announce that theme in their titles, so I didn’t choose them in that way. It was almost as if the pieces were finding me. I remember reading two poems in the same issue of The New Yorker (April 22, 1996) – “The Ship Pounding” by Donald Hall and “The Sick Wife” by his late wife Jane Kenyon – and thinking “This is exactly what it’s like to be visiting a sick spouse in the hospital day after day and also what it’s like to be that very sick spouse.” I photocopied the poems and put them in a folder.

Another piece that went into the folder was Alice Munro’s story, “The Bear Came Over the Mountain” (published in The New Yorker on December 27, 1999, long before it was made into the movie Away From Her, with Julie Christie). Although I had no experience with nursing homes or romantic attachments between residents, the story was so compelling I saw this not uncommon situation in a new light.

The folder fattened rapidly: stories and poems about children of aging parents; others about parents of sick children; still others about friends and partners. A few were about paid caregivers. Many were about dementia, others were about HIV/AIDS and mental illness. One folder became two, then three, then a box. Rick Moody, Mary Gordon, Ethan Canin, Gish Jen, Lorrie Moore, Ha Jin, Allegra Goodman and Robert Pinsky became neighbors in the box.

 

If my passion for reading and writing started in a village library and an apple tree, I was tutored by a master. As an undergraduate at Cornell, I took a class in Russian, thinking that it would be interesting to learn a new language. That led to more courses in Russian and European history, and ultimately two seminars with Vladimir Nabokov on Russian literature. Although I have forgotten much of what I learned about Pushkin and Lermontov, to say nothing of the medieval epic Prince Igor’s campaign, I never forgot what Nabokov taught me about reading. He didn’t focus on plot or character development, but on a writer’s use of details. And he stressed “A good reader, a major reader, an active and creative reader is a re-reader.”

I read and reread the stories and poems in the box, concentrating on the details. Some didn’t meet the Nabokov test and were evicted from the box, but many others did. In Allegra Goodman’s story, “The Closet,” for example, Evelyn is the caregiver for her mentally ill sister Lily, who decides to live in a closet in their childhood home, creating a strain on Evelyn’s marriage. The setting is Hawaii, and the sisters are Chinese-American. “Lily was small, like Evelyn. They both had size 5 feet… [Evelyn] imagined Lily sitting down at the piano, a lovely Yamaha ruined by the humidity, and playing Chopin in her own curious way, as if she had serious reservations about where the music was going.” Stan, Evelyn’s husband, “came from a tall, meat-eating family in Providence, Rhode Island” – all one needs to know about their cultural differences.

Another example: In Julie Otsuka’s story “Diem Perdidi” (“I Have Lost the Day”), an elderly mother’s experience of dementia is described in the details of what she remembers and what she doesn’t. “She remembers her name. She remembers the name of the president. She remembers the name of the president’s dog. She remembers what city she lives in. And on which street. And in which house. … She does not remember how she got the bruises on her arms or going for a walk with you earlier this morning… She does not remember what she ate for dinner last night, or when she last took her medicine. She does not remember to drink enough water. She does not remember to comb her hair.” By the end of the story, she doesn’t remember the name of the president’s dog. That’s definitely a Nabokovian detail.

At some point in my rereading I began to think about creating an anthology of the stories and poems that still resonated after many readings. The writers I chose approached caregiving in unique ways, but they were alike in their commitment to emotional truth, unvarnished by ideals of what a caregiver should feel and do. David Mason’s poem “Fathers and Sons” says this directly in describing his efforts to help his father use the toilet: “Some things, they say,/ One should not write about.”

Oddly, I had a title before I had a book. In his 1988 book The Illness Narratives: Suffering, Healing and the Human Condition, Arthur Kleinman, an anthropologist and psychiatrist, wrote that people with chronic illness are “like those trapped at a frontier, wandering confused in a poorly known border area… This image should also alert us to the relatives and friends who press their faces against windows to wave a sad goodbye, who sometimes carry the heaviest baggage, who sit in the same waiting rooms, and who even travel through the same land of limbo, experiencing similar worry, hurt, uncertainty, and loss.” What better title could there be than Living in the Land of Limbo: Fiction and Poetry about Family Caregiving.

 

My husband died in January 2007, 17 years after an accident left him quadriplegic and with significant cognitive impairments. Instead of retreating from caregiving, I found the book project was a way of keeping him close. Michael Ames at Vanderbilt University Press took on the project. Then began the long and often frustrating process of organizing the selections, finding authors and getting permissions from them (and their agents and publishers), seeking new works for an overall balance, and writing an introduction to the book and introductions to each section.

When the book was published in March, 2014, it received very positive reviews. Each reviewer picked a different selection for comment, as have all the people who have talked to me in person. Of all the comments, I was most touched by Chris Adrian’s remark in The Lancet that the book was “lovingly curated.”

A new folder is filling up. I am reading and rereading. I continue to write essays and reports. The apple tree had deep roots.

 

 

Author's Comment

After mentioning Vladimir Nabokov in this story, I re-read his short stories. I found a depth of compassion that is overshadowed in his novels by his brilliant wordplay and challenging puzzles. I also read new biographies, which gave me to a deeper understanding of his hatred of anti-Semitism. This led me to write an essay comparing “Signs and Symbols,” a short story he wrote in 1948 with “Referential,” written by Lorrie Moore in 2012. So one story led to another, which is their power and their joy.