On Vanishing: Mortality, Dementia, and What It Means to Disappear
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" (Parul Sehgal, 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.
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About the Author
Praise for On Vanishing
"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 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
"Dementia is a catch-all term for different diseases that affect more than 50 million people around the world as they age, leading to memory loss, struggles with language, and a decline in motor skills. Baptist minister Lynn Casteel Harper has seen dementia's impact as she's worked as a chaplain in nursing homes, and in this book, she weaves those experiences with broader research about aging, healthcare, and death to explore how we can bestow more dignity on those who are 'vanishing.'" --Bitch
"[A] calm, clear-eyed discussion of new ways to see dementia and its impact on the individual." --Gemma Tarlach, Discover
"Harper writes beautifully . . . On Vanishing helps us understand what's at stake in healthcare systems that risk prioritizing data collection and cure over medicine as unfolding story . . . Harper shows us how 'vanishing is still life, ' filled with sometimes startling surprises worth telling, hearing, and experiencing together." --Robert Mundle, The Intima
"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
"On Vanishing is at once intellectual and soulful, vulnerable and brave. With clear eyes and a steady heart, Harper plumbs the complexities of vanishing--the ways the elderly disappear from society and from this world. Grounded in deep compassion and unwillingness to write off those we so easily forget, Harper's book elaborates a beautifully meditative and often radically progressive inquiry into the experience of mental decline and, ultimately, of being a person who will die." --Marin Sardy, author of The Edge of Every Day: Sketches of Schizophrenia
"Elegantly balancing the intimate and the investigative, Lynn Casteel Harper explores the much-feared disease of dementia, opening a compassionate window into territory that is too-often simplified and reduced. As an antidote to avoidance and marginalization, this compelling book also takes on broader questions about the relationship between aging and transformation; On Vanishing will spark necessarily nuanced conversations within institutions as well as across generations." --Elizabeth Rosner, author of Survivor Café
"On Vanishing is imbued with rich humanity, laden with good, orderly directions on the mysteries of age and desolation, and freighted with sentences so beautiful and sad, they catch the breath away. Lynn Casteel Harper's generous text suggests that dementia, apart from the litany of loss it is, might also be, for caregiver and afflicted alike, a chance at love, a way to grow in grace." --Thomas Lynch, author of The Depositions
"A marvelous tapestry. On Vanishing is poignant in its personal history, profound in its understanding, and prophetic in its analysis of the ways social norms, values, and systems shape the lives of people with dementia and their loved ones. What's more, it is beautifully written. My copy is full of underlines and checks, noting quotes I wish I could remember but now know I can find. Lynn Casteel Harper helps us to see dementia through different sets of eyes, ones that recognize the mystery of our own humanness." --Bill Gaventa, author of Disability and Spirituality: Recovering Wholeness