On Vanishing: Mortality, Dementia, and What It Means to Disappear

by Lynn Casteel Harper

Overview

A New York Times Book Review Editors’ Choice

An essential book for those coping with Alzheimer’s and other cognitive disorders that “reframe[s] our understanding of dementia with sensitivity and accuracy . . . to grant better futures to our loved ones and ourselves” (The New York Times).

An estimated fifty million people in the world suffer from dementia. Diseases such as Alzheimer's erase parts of one's memory but are also often said to erase the self. People don't simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On Vanishing, Lynn Casteel Harper, a Baptist minister and nursing home chaplain, investigates the myths and metaphors surrounding dementia and aging, addressing not only the indignities caused by the condition but also by the rhetoric surrounding it. Harper asks essential questions about the nature of our outsized fear of dementia, the stigma this fear may create, and what it might mean for us all to try to “vanish well.”

Weaving together personal stories with theology, history, philosophy, literature, and science, Harper confronts our elemental fears of disappearance and death, drawing on her own experiences with people with dementia both in the American healthcare system and within her own family. In the course of unpacking her own stories and encounters—of leading a prayer group on a dementia unit; of meeting individuals dismissed as “already gone” and finding them still possessed of complex, vital inner lives; of witnessing her grandfather’s final years with Alzheimer’s and discovering her own heightened genetic risk of succumbing to the disease—Harper engages in an exploration of dementia that is unlike anything written before on the subject.

A rich and startling work of nonfiction, On Vanishing reveals cognitive change as it truly is, an essential aspect of what it means to be mortal.

Product Details

ISBN-13:	9781646220564
Publisher:	Catapult
Publication date:	04/13/2021
Pages:	240
Sales rank:	373,289
Product dimensions:	5.50(w) x 8.20(h) x 0.70(d)

About the Author

Lynn Casteel Harper is a minister, chaplain, and essayist. Her work has appeared in Kenyon Review Online, North American Review, and Catapult magazine. She is a Barbara Deming Fund grant recipient and the winner of the 2017 Orison Anthology Prize in Nonfiction. She lives in New York City and is currently the minister of older adults at The Riverside Church.

Table of Contents

1 Introduction 3

2 On Vanishing 20

3 Oh, Mexico 41

4 Turning to Fools and Madmen 69

5 The Golden Hour 103

6 A Great Many Seemings Here 132

7 She Recognizes You 158

8 When I Have Dementia 188

9 Vanitas Still Life 210

Author's Note 221

Acknowledgments 223

Editorial Reviews

A New York Times Book Review Editors' Choice

"A searching, poetic inquiry into dementia. . . . [Harper] writes without fear or aversion but with a robust, restless curiosity, a keenness to reframe our understanding of dementia with sensitivity and accuracy. . . . In her beautifully unconventional book, Harper examines the porousness of the borders, the power of imagination and language to grant better futures to our loved ones and ourselves." —Parul Sehgal, The New York Times

"[A] calm, clear-eyed discussion of new ways to see dementia and its impact on the individual." —Gemma Tarlach, Discover

"On Vanishing is a book that lingers in the mind for weeks. One reason for this is Harper’s striking language. The prose is dynamic and a joy to follow . . . On the grander scale, On Vanishing does nothing less than push its readers to rethink what it means to be a person: what parts of me could change or fade and yet allow me to remain myself? Who am I, actually?" —Caleb Tankersley, North American Review

"Harper envisions a future where the eldery and those with dementia don’t have to disappear from mainstream society, and instead of living in fear of the disease we can live in acceptance of it. So many of the ideas in On Vanishing are especially relevant now, in the age of the Covid-19 pandemic, as issues of ageism have come to the forefront of society." —Bailey Cook Dailey, Catapult magazine

"A compassionate collection of essays examining dementia from an unusually hopeful point of view . . . Harper moves smoothly between abstract reflections and concrete experiences, reflecting often on the effects of dementia on her grandfather and on her relationship with him, her fears that a genetic link to the disease may have been passed down to her, and her encounters with many individuals, all described in strikingly specific terms, surviving dementia in their own ways . . . Moving insights into a situation many will face." —Kirkus Reviews

"This inspiring work takes us far from our often-arrogant efforts to vanquish (cure) dementia to seeing human vanity in another light. How do we envision vanishing and disappearance in the face of progressive cognitive decline? In On Vanishing, Lynn Casteel Harper holds a mirror to society and asks us to reflect . . . Just what does dying with dementia tell us about the human condition, both in the details of individual lives and in the grand scope of society? . . . In these troubled times of environmental deterioration and social injustice, can we learn to create more compassionate civilizations that celebrate caring?" —Peter J. Whitehouse, MD, author of The Myth of Alzheimer's

"The best nonfiction opens the mind in ways we didn't know it needed to be opened. Lynn Casteel Harper does that and more in On Vanishing, a significant contribution to writing on neurodiversity and aging, and a profound and useful corrective to the Western way of thinking about the trajectory of human life. I was afraid of what On Vanishing might reveal about my family's future, or mine, or how it might remind me of the suffering of my grandmother. But once I began this important book, I could not put it down or resist quoting it to friends and family. Harper is so wise, compassionate, and hopeful, as are the not-vanished people whose powerful stories she has gathered here." —Belle Boggs, author of The Art of Waiting

From the Publisher

…a searching, poetic inquiry into dementia…[Harper] writes without fear or aversion but with a robust, restless curiosity, a keenness to reframe our understanding of dementia with sensitivity and accuracy…What gives On Vanishing its particular, idiosyncratic energy is the unexpectedness of its focus. Rather than concentrating on case studies from her own practice or alternative models of care across cultures…she turns to art and literature…Sontag wrote that we are dual citizens of the kingdom of the sick and the kingdom of the well. In her beautifully unconventional book, Harper examines the porousness of the borders, the power of imagination and language to grant better futures to our loved ones and ourselves.

The New York Times - Parul Sehgal

12/16/2019

Baptist minister and essayist Harper, drawing upon her experience as a nursing home chaplain, devotes her affecting but uneven debut to reclaiming dementia patients from being defined primarily by their cognitive deficits. Arguing against seeing people with late-stage Alzheimer’s and similar disorders as suffering a “death before death,” she shows, instead, that a “palpable life force abides” in such individuals. Her wide-ranging work runs into some trouble, at times digressing into discussions of conditions she considers comparable, such as her own sleepwalking. More damagingly, she crosses the line separating a serious, medically informed look at dementia and a romanticization of it as an opportunity for “reorienting one’s spirituality.” For example, on apparent dementia sufferer Ralph Waldo Emerson’s last years, she indulges in ethereal mysticism: “Seams widen, running outward to new and larger circles, to greater expanses of beauty and repose, and without end.” In contrast, Harper touches too little upon experiences of anxiety, fear, bewilderment, and loss, such as that of a woman who tells her, “I don’t know who I am anymore.” Thus, while it’s an admirable argument that dementia patients exist “along the continuum of human experience,” this often moving book falls short of being persuasive. Agent: Chris Clemans, Janklow & Nesbit. (Apr.)

Publishers Weekly

2019-12-23
A compassionate collection of essays examining dementia from an unusually hopeful point of view.

As a Christian minister and chaplain, first-time author Harper has spent considerable time working in assisted living and memory loss facilities with those experiencing varying degrees of dementia. Initially reluctant, like many of us, to deal with older people experiencing the disease, she gradually began to understand those she worked with as complicated people and to think about the many ways in which our misunderstanding of dementia leads us to stop paying attention to those affected by it—to see them as "vanishing" before they actually die. In fact, argues the author, they are vividly alive and sensitive to the presence of others and often capable of increased "compassion, honesty, humility." In these essays, some of which were published in various journals, Harper explores with an open mind and empathetic imagination the question of why "we—those whom the dementia activist Morris Friedell termed the 'temporarily able-brained'—need them to vanish. Why are we so eager to view them as disappearing or disappeared?" She explores how our often unconscious biases lead us to assume that people are "gone" when they are actually right in front of us, longing for connection. She ponders the possible link between Shakespeare's King Lear and dementia, considers Ralph Waldo Emerson's relatively peaceful encounter with the state, and reflects on her own experience of sleepwalking and the ways it helps her understand dementia. "While I do not presume I can or should know in full the experiences of another," she writes, "I wondered if sleepwalking might be one point of correspondence." Harper moves smoothly between abstract reflections and concrete experiences, reflecting often on the effects of dementia on her grandfather and on her relationship with him, her fears that a genetic link to the disease may have been passed down to her, and her encounters with many individuals, all described in strikingly specific terms, surviving dementia in their own ways.

Helpful, sometimes moving insights into a situation many will face.

Kirkus Reviews