Living in the Land of Limbo: Fiction and Poetry about Family Caregiving


Living in the Land of Limbo is the first anthology of short stories and poems about family caregivers. These men and women find themselves in "limbo," as they struggle to take care of a family member or friend in the uncertain world of chronic illness. The authors explore caregivers' experiences as they deal with family conflicts, the complexities of the health care system, and the impact of their choices on their lives and the lives of others. The book includes selections devoted to caregivers of aging parents;...
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Living in the Land of Limbo: Fiction and Poetry about Family Caregiving

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Living in the Land of Limbo is the first anthology of short stories and poems about family caregivers. These men and women find themselves in "limbo," as they struggle to take care of a family member or friend in the uncertain world of chronic illness. The authors explore caregivers' experiences as they deal with family conflicts, the complexities of the health care system, and the impact of their choices on their lives and the lives of others. The book includes selections devoted to caregivers of aging parents; husbands and wives; ill children; and relatives, lovers, and friends. A final section is devoted to paid caregivers and their clients. Among the conditions that form the background of the selections are dementia, HIV/AIDS, mental illness, multiple sclerosis, and pediatric cancer.

Many of the authors are well-known poets and writers, but others have not been published in mainstream media. They represent a range of cultural backgrounds. Although their works approach caregiving in very different ways, the authors share a commitment to emotional truth, unvarnished by societal ideals of what caregivers should feel and do. These stories and poems paint profoundly moving and revealing portraits of family caregivers.

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Editorial Reviews

From the Publisher

"...a provoking and delicate contemporary collection that showcases a variety of short fiction and poetry from some of the best writers..."
--Times Leader
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Product Details

  • ISBN-13: 9780826519696
  • Publisher: Vanderbilt University Press (TN)
  • Publication date: 4/30/2014
  • Pages: 281
  • Sales rank: 1,497,738
  • Product dimensions: 7.10 (w) x 10.10 (h) x 1.00 (d)

Meet the Author

Carol Levine directs the United Hospital Fund's Families and Health Care Project. She is a former editor of the Hastings Center Report. In 1993 she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics. She edited Always On Call: When Illness Turns Families into Caregivers (2nd ed., Vanderbilt University Press, 2004).
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Read an Excerpt

Living in the Land of Limbo

Fiction and Poetry About Family Caregiving

By Carol Levine

Vanderbilt University Press

Copyright © 2014 Carol Levine
All rights reserved.
ISBN: 978-0-8265-1971-9


Diem Perdidi

* Julie Otsuka

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. The one with the big olive tree where the road takes a turn. She remembers what year it is. She remembers the season. She remembers the day on which you were born. She remembers the daughter who was born before you—She had your father's nose, that was the first thing I noticed about her—but she does not remember that daughter's name. She remembers the name of the man she did not marry—Frank—and she keeps his letters in a drawer by her bed. She remembers that you once had a husband but she refuses to remember your ex-husband's name. That man, she calls him.

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 bending over, during that walk, and plucking a flower from a neighbour's front yard and slipping it into her hair. Maybe your father will kiss me now. 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.

She remembers the rows of dried persimmons that once hung from the eaves of her mother's house in Berkeley. They were the most beautiful shade of orange. She remembers that your father loves peaches. She remembers that every Sunday morning, at ten, he takes her for a drive down to the sea in the brown car. She remembers that every evening, right before the eight o'clock news, he sets out two fortune cookies on a paper plate and announces to her that they are having a party. She remembers that on Mondays he comes home from the college at four, and if he is even five minutes late she goes out to the gate and begins to wait for him. She remembers which bedroom is hers and which is his. She remembers that the bedroom that is now hers was once yours. She remembers that it wasn't always like this.

She remembers the first line of the song, "How High the Moon." She remembers the Pledge of Allegiance. She remembers her Social Security number. She remembers her best friend Jean's telephone number even though Jean has been dead for six years. She remembers that Margaret is dead. She remembers that Betty is dead. She remembers that Grace has stopped calling. She remembers that her own mother died nine years ago, while spading the soil in her garden, and she misses her more and more every day. It doesn't go away. She remembers the number assigned to her family by the government right after the start of the war. 13611. She remembers being sent away to the desert with her mother and brother during the fifth month of that war and taking her first ride on a train. She remembers the day they came home. September 9, 1945. She remembers the sound of the wind hissing through the sagebrush. She remembers the scorpions and red ants. She remembers the taste of dust.

Whenever you stop by to see her she remembers to give you a big hug, and you are always surprised at her strength. She remembers to give you a kiss every time you leave. She remembers to tell you, at the end of every phone call, that the FBI will check up on you again soon. She remembers to ask you if you would like her to iron your blouse for you before you go out on a date. She remembers to smooth down your skirt. Don't give it all away. She remembers to brush aside a wayward strand of your hair. She does not remember eating lunch with you twenty minutes ago and suggests that you go out to Marie Callender's for sandwiches and pie. She does not remember that she herself once used to make the most beautiful pies with perfectly fluted crusts. She does not remember how to iron your blouse for you or when she began to forget. Something's changed. She does not remember what she is supposed to do next.

She remembers that the daughter who was born before you lived for half an hour and then died. She looked perfect from the outside. She remembers her mother telling her, more than once, Don't you ever let anyone see you cry. She remembers giving you your first bath on your third day in the world. She remembers that you were a very fat baby. She remembers that your first word was No. She remembers picking apples in a field with Frank many years ago in the rain. It was the best day of my life. She remembers that the first time she met him she was so nervous she forgot her own address. She remembers wearing too much lipstick. She remembers not sleeping for days.

When you drive past Hesse Park, she remembers being asked to leave her exercise class by her teacher after being in that class for more than ten years. I shouldn't have talked so much. She remembers touching her toes and doing windmills and jumping jacks on the freshly mown grass. She remembers being the highest kicker in her class. She does not remember how to use the "new" coffee maker, which is now three years old, because it was bought after she began to forget. She does not remember asking your father, ten minutes ago, if today is Sunday, or if it is time to go for her ride. She does not remember where she last put her sweater or how long she has been sitting in her chair. She does not always remember how to get out of that chair, and so you gently push down on the footrest and offer her your hand, which she does not always remember to take. Go away, she sometimes says. Other times, she just says, I'm stuck. She does not remember saying to you, the other night, right after your father left the room, He loves me more than I love him. She does not remember saying to you, a moment later, I can hardly wait until he comes back.

She remembers that when your father was courting her he was always on time. She remembers thinking that he had a nice smile. He still does. She remembers that when they first met he was engaged to another woman. She remembers that that other woman was white. She remembers that that other woman's parents did not want their daughter to marry a man who looked like the gardener. She remembers that the winters were colder back then, and that there were days on which you actually had to put on a coat and scarf. She remembers her mother bowing her head every morning at the altar and offering her ancestors a bowl of hot rice. She remembers the smell of incense and pickled cabbage in the kitchen. She remembers that her father always wore nice shoes. She remembers that the night the FBI came for him, he and her mother had just had another big fight. She remembers not seeing him again until after the end of the war.

She does not always remember to trim her toenails, and when you soak her feet in the bucket of warm water she closes her eyes and leans back in her chair and reaches out for your hand. Don't give up on me. She does not remember how to tie her shoelaces, or fasten the hooks on her bra. She does not remember that she has been wearing her favourite blue blouse for five days in a row. She does not remember your age. Just wait till you have children of your own, she says to you, even though you are now too old to do so.

She remembers that after the first girl was born and then died, she sat in the yard for days, just staring at the roses by the pond. I didn't know what else to do. She remembers that when you were born you, too, had your father's long nose. It was as if I'd given birth to the same girl twice. She remembers that you are a Taurus. She remembers that your birthstone is green. She remembers to read you your horoscope from the newspaper whenever you come over to see her. Someone you were once very close to may soon reappear in your life. She does not remember reading you that same horoscope five minutes ago or going to the doctor with you last week after you discovered a bump on the back of her head. I think I fell. She does not remember telling the doctor that you are no longer married, or giving him your number and asking him to please call. She does not remember leaning over and whispering to you, the moment he stepped out of the room, I think he'll do.

She remembers another doctor asking her, fifty years ago, minutes after the first girl was born and then died, if she wanted to donate the baby's body to science. He said she had a very unusual heart. She remembers being in labour for thirty-two hours. She remembers being too tired to think. So I told him yes. She remembers driving home from the hospital in the sky-blue Chevy with your father and neither one of them saying a word. She remembers knowing she'd made a big mistake. She does not remember what happened to the baby's body and worries that it might be stuck in a jar. She does not remember why they didn't just bury her. I wish she were under a tree. She remembers wanting to bring her flowers every day.

She remembers that even as a young girl you said you did not want to have children. She remembers that you hated wearing dresses. She remembers that you never played with dolls. She remembers that the first time you bled you were thirteen years old and wearing bright yellow pants. She remembers that your childhood dog was named Shiro. She remembers that you once had a cat named Gasoline. She remembers that you had two turtles named Turtle. She remembers that the first time she and your father took you to Japan to meet his family you were eighteen months old and just beginning to speak. She remembers leaving you with his mother in the tiny silkworm village in the mountains while she and your father travelled across the island for ten days. I worried about you the whole time. She remembers that when they came back you did not know who she was and that for many days afterwards you would not speak to her, you would only whisper in her ear.

She remembers that the year you turned five you refused to leave the house without tapping the door frame three times. She remembers that you had a habit of clicking your teeth repeatedly, which drove her up the wall. She remembers that you could not stand it when different-coloured foods were touching on the plate. Everything had to be just so. She remembers trying to teach you to read before you were ready. She remembers taking you to Newberry's to pick out patterns and fabric and teaching you how to sew. She remembers that every night, after dinner, you would sit down next to her at the kitchen table and hand her the bobby pins one by one as she set the curlers in her hair. She remembers that this was her favourite part of the day. I wanted to be with you all the time.

She remembers that you were conceived on the first try. She remembers that your brother was conceived on the first try. She remembers that your other brother was conceived on the second try. We must not have been paying attention. She remembers that a palm reader once told her that she would never be able to bear children because her uterus was tipped the wrong way. She remembers that a blind fortune-teller once told her that she had been a man in her past life, and that Frank had been her sister. She remembers that everything she remembers is not necessarily true. She remembers the horse-drawn garbage carts on Ashby, her first pair of crepesoled shoes, scattered flowers by the side of the road. She remembers that the sound of Frank's voice always made her feel calmer. She remembers that every time they parted he turned around and watched her walk away. She remembers that the first time he asked her to marry him she told him she wasn't ready. She remembers that the second time she said she wanted to wait until she was finished with school. She remembers walking along the water with him one warm summer evening on the boardwalk and being so happy she could not remember her own name. She remembers not knowing that it wouldn't be like this with any of the others. She remembers thinking she had all the time in the world.

She does not remember the names of the flowers in the yard whose names she has known for years. Roses? Daffodils? Immortelles? She does not remember that today is Sunday, and she has already gone for her ride. She does not remember to call you, even though she always says that she will. She remembers how to play "Clair de Lune" on the piano. She remembers how to play "Chopsticks" and scales. She remembers not to talk to telemarketers when they call on the telephone. We're not interested. She remembers her grammar. Just between you and me. She remembers her manners. She remembers to say thank you and please. She remembers to wipe herself every time she uses the toilet. She remembers to flush. She remembers to turn her wedding ring around whenever she pulls on her silk stockings. She remembers to reapply her lipstick every time she leaves the house. She remembers to put on her anti-wrinkle cream every night before climbing into bed. It works while you sleep. In the morning, when she wakes, she remembers her dreams. I was walking through a forest. I was swimming in a river. I was looking for Frank in a city I did not know and no one would tell me where he was.

On Halloween day, she remembers to ask you if you are going out trick-or-treating. She remembers that your father hates pumpkin. It's all he ate in Japan during the war. She remembers listening to him pray, every night, when they first got married, that he would be the one to die first. She remembers playing marbles on a dirt floor in the desert with her brother and listening to the couple at night on the other side of the wall. They were at it all the time. She remembers the box of chocolates you brought back to her after your honeymoon in Paris. "But will it last?" you asked her. She remembers her own mother telling her, "The moment you fall in love with someone, you are lost."

She remembers that when her father came back after the war he and her mother fought even more than they had before. She remembers that he would spend entire days shopping for shoes in San Francisco while her mother scrubbed other people's floors. She remembers that some nights he would walk around the block three times before coming into the house. She remembers that one night he did not come in at all. She remembers that when your own husband left you, five years ago, you broke out in hives all over your body for weeks. She remembers thinking he was trouble the moment she met him. A mother knows. She remembers keeping that thought to herself. I had to let you make your own mistakes.

She remembers that, of her three children, you were the most delightful to be with. She remembers that your younger brother was so quiet she sometimes forgot he was there. He was like a dream. She remembers that her own brother refused to carry anything with him on to the train except for his rubber toy truck. He wouldn't let me touch it. She remembers her mother killing all the chickens in the yard the day before they left. She remembers her fifth-grade teacher, Mr. Martello, asking her to stand up in front of the class so everyone could tell her goodbye. She remembers being given a silver heart pendant by her next-door neighbour, Elaine Crowley, who promised to write but never did. She remembers losing that pendant on the train and being so angry she wanted to cry. It was my first piece of jewellery.


Excerpted from Living in the Land of Limbo by Carol Levine. Copyright © 2014 Carol Levine. Excerpted by permission of Vanderbilt University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents



Carol Levine


Children of Aging Parents

Diem Perdidi

Julie Otsuka

Whosoever: The Language of Mothers and Sons

Rick Moody

The Third Dumpster

Gish Jen


Li-Young Lee


Tony Hoagland

Fathers and Sons

David Mason


W. S. Merwin

Ode to Meaning

Robert Pinsky

Buckdancer's Choice

James Dickey

Where the Groceries Went

Raymond Carver


Husbands and Wives

Mrs. Cassidy's Last Year

Mary Gordon

We Are Nighttime Travelers

Ethan Canin

The Ship Pounding

Donald Hall

The Sick Wife

Jane Kenyon

Alzheimer's: The Wife

Alzheimer's: The Husband

C. K. Williams

The Bear Came Over the Mountain

Alice Munro

Thoreau's Laundry

Ann Harleman

The Yawn

Rachel Hadas

Mrs. Dumpty

Visiting Hours Are Over

Chana Bloch

He Read to Her

Anne Brashler


Parents and Sick Children

How to Win

Rosellen Brown

People Like That Are the Only People Here

Lorrie Moore

Children's Ward

Sarah Day

Parents Support Group

Dick Allen


Amy Hanridge


Relatives, Lovers, and Friends

The Closet

Allegra Goodman

The Caregiver

Eugenia Collier


Mark Doty

Oceanic Hotel, Nice

Tereze Gluck


Paid Caregivers

A Pension Plan

Ha Jin

A Bad Day for Pisces

Fran Pokras Yariv


Lewis Nordan

God's Goodness

Marjorie Kemper



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