Living in the Land of Limbo

Description

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.

Sujets

• Caregiving
• Medical
• Médecine
• Literature
• Caregiver
• Health
• Fiction

Informations

• Publié par: Vanderbilt University Press
• Date de parution: 15 mars 2014
• Nombre de lectures: 0
• EAN13: 9780826519719
• Langue: English

Extrait

Living in the Land of Limbo
LIVING in the Land of Limbo
FICTION AND POETRY ABOUT FAMILY CAREGIVING
Carol Levine, Editor
VANDERBILT UNIVERSITY PRESS
NASHVILLE
Compilation and introduction © 2014 by Carol Levine
Copyright for the individual selections resides with the author, agent, or original publisher. For more information, see the credit that accompanies each selection.
Published 2014 by Vanderbilt University Press
Nashville, Tennessee 37325
All rights reserved
First printing 2014
This book is printed on acid-free paper.
Manufactured in the United States of America
Library of Congress Cataloging-in-Publication Data on file
LC control number 2013034803
LC classification number PS509.C35 L58 2013
Dewey class number 810.8'03561—dc23
ISBN 978-0-8265-1969-6 (hardcover)
ISBN 978-0-8265-1970-2 (paperback)
ISBN 978-0-8265-1971-9 (ebook)
For Howard Lincoln Levine
With love and memories
Contents
Acknowledgments
Introduction: Family Caregivers in Fiction and Poetry Carol Levine
PART I. Children of Aging Parents
1. Diem Perdidi Julie Otsuka
2. Whosoever: The Language of Mothers and Sons Rick Moody
3. The Third Dumpster Gish Jen
4. Water Li-Young Lee
5. Lucky Tony Hoagland
6. Fathers and Sons David Mason
7. Yesterday W. S. Merwin
8. Ode to Meaning Robert Pinsky
9. Buckdancer’s Choice James Dickey
10. Where the Groceries Went Raymond Carver
PART II. Husbands and Wives
11. Mrs. Cassidy’s Last Year Mary Gordon
12. We Are Nighttime Travelers Ethan Canin
13. The Ship Pounding Donald Hall
14. The Sick Wife Jane Kenyon
15. Alzheimer’s: The Wife C. K. Williams
16. Alzheimer’s: The Husband C. K. Williams
17. The Bear Came Over the Mountain Alice Munro
18. Thoreau’s Laundry Ann Harleman
19. The Yawn Rachel Hadas
20. Mrs. Dumpty Chana Bloch
21. Visiting Hours Are Over Chana Bloch
22. He Read to Her Anne Brashler
PART III. Parents and Sick Children
23. How to Win Rosellen Brown
24. People Like That Are the Only People Here Lorrie Moore
25. Children’s Ward Sarah Day
26. Parents Support Group Dick Allen
27. Starter Amy Hanridge
PART IV. Relatives, Lovers, and Friends
28. The Closet Allegra Goodman
29. The Caregiver Eugenia Collier
30. Atlantis Mark Doty
31. Oceanic Hotel, Nice Tereze Glück
PART V. Paid Caregivers
32. A Pension Plan Ha Jin
33. A Bad Day for Pisces Fran Pokras Yariv
34. Wheelchair Lewis Nordan
35. God’s Goodness: A Short Story Marjorie Kemper
Resources
Contributors
Acknowledgments
Some books seem to move almost effortlessly from idea to printed page. This is not that sort of book. Over the many years that I collected the selections that appear here (and many others that do not), there were long periods when I felt unable to move forward because of the stresses of caring for my late husband, the exciting but challenging responsibilities of my day job, and the difficulty of seeing how all these pieces that felt so right individually could possibly fit together. Several people made a difference at key points: Michael Ames, Vanderbilt University Press’s publisher, helped me shape the book and was always encouraging; my friends Richard and Carole Rifkind greeted my tentative description with enthusiasm and practical suggestions; and John Thornton, my agent who is also an editor and anthologist, was a constant source of advice and support. Fred Courtright handled the complicated task of obtaining permissions, a contribution not usually acknowledged by editors but one that should be. Finally, the Winston Foundation provided a grant that greatly aided in the completion of the book. My children and grandchildren provided ample distraction and much joy.
Living in the Land of Limbo
Introduction: Family Caregivers in Fiction and Poetry
Carol Levine
The chronically ill often are like those trapped at a frontier, wandering confused in a poorly known border area, waiting desperately to return to their native land. . . . This image should also alert us to the . . . entrance and exit formalities . . . and especially [to] the relatives and friends who press their faces against windows to wave a sad goodbye, who carry sometimes 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. . . .
—Arthur Kleinman, The Illness Narratives: Suffering, Healing and the Human Condition (New York: Basic Books, 1988), p. 183
If birth and death are universal, the experience of caring for someone with a chronic or terminal illness is nearly so. Despite a pervasive myth of family abandonment, most people are accompanied and cared for through illness or disability by relatives, friends, and others close to them. These caregivers—“family” understood broadly—live in the land of limbo. Kleinman, a renowned psychiatrist and anthropologist, has now entered the land of limbo himself, as he cares for his wife who has Alzheimer’s disease. 1
Kleinman located the region of limbo aptly. According to early Christian theologians, “limbo,” where innocent souls wander, lies at the border of Hell. Its theological history aside, limbo today means a state of uncertainty, a feeling of being trapped, waiting for events beyond one’s control to unfold. What family caregiver has not at some time felt isolated, confined, and unsure of when or where or how the difficult journey will end! It is a journey that most embark on out of love or obligation. And yet there are no maps or GPS systems to guide confused travelers.
In an aging society, when medical miracles save and prolong lives but do not necessarily cure, caregiving is becoming a normative experience. An estimated forty-two million Americans now care for an elderly, disabled, or chronically ill adult. Millions more take care of chronically ill or disabled children. In the past few years, in response to this phenomenon, there has been an outpouring of practical handbooks to give family caregivers tools to perform the medical, financial, and legal tasks they undertake and for which they are so poorly prepared by the medical and social service systems. There are also many first-person narratives by caregivers that describe their own powerful and painful journeys. In addition, many books offer to help caregivers “cope” with tips about wellness, self-help, and spiritual renewal. Finally, there are professional books that are intended to educate doctors, nurses, social workers, and others about the crises faced by their patients’ families. These are typically written from a disciplinary perspective such as gerontology, social work, or nursing.
This book about caregiving is different. It is not intended to teach, train, or inspire. It offers no helpful tips about reaching out to others for help or navigating the health care system. It does not encourage policy makers to recognize and support family caregivers in tangible, not just rhetorical, ways. Such books have worthy goals, and I have contributed to many of them.
This book is intended to enrich readers’ understanding of family caregiving, whether the reader is a family caregiver, health care or social service professional, relative, or friend. It does this by drawing on a largely untapped resource: the wisdom, wit, and artistry of the creative writers of the past half century. 2 Poets and writers of fiction have much to say about suffering, healing, grief, and the human condition—the essence of caregiving.
There is, of course, a large and growing body of narratives and memoirs about illness and caregiving. Memoirs describe reality, or at least reality as the writer experienced it. Many of the selections in this book are based on personal experiences, but the authors have chosen to transcend reality by turning it into art. In Lorrie Moore’s story “People Like That Are the Only People Here,” the Mother, a writer, reflects after her baby’s cancer surgery, “How can it be described? How can any of it be described? The trip and the story of the trip are always two different things.”
Rochelle Almeida in her study of mourning says, “I believe that short fiction enables the writer and the reader to distill the very essence of personal loss by boiling human emotion down to the barest bones and saying it all most eloquently.” 3
Novelist Amy Tan says, “In writing, I always try to draw upon the emotional truth of my past experiences but never on the actual factual truth. I alter the details while trying to retain the sensual impact. This it seems to me is what fiction does and what makes it often more effective than straight biography or memoir.” 4
Similarly, Joyce Carol Oates, who has written both a memoir ( A Widow’s Story ) and short stories in which widows are the main characters ( Sourland ), responded to Jeffrey Brown’s question on PBS NewsHour : “Is fiction better for some things—and nonfiction for others?” by stating “Yes, fiction is much better for some things, definitely. The sort of thing that I want to do is to strike a resonant chord of universality in other people, which is best done by fiction.” 5
One further distinction: poetry and fiction are often more concerned with the body and bodily functions than memoirs. Many of the selections in this volume are quite explicit about this aspect of caregiving. Rick Moody’s description of a son bathing his debilitated mother in “Whosoever” might seem inappropriate in a memoir but provides an extraordinary insight into this common experience precisely because it is fiction.