Toward a More Generous Way
Few diagnoses evoke the kind of hushed terror that regularly accompanies Alzheimers. The ambiguous nature of the disease confronts us with difficult questions of self-hood, mortality, dignity, love and discipleship. Two new books- “On Vanishing,” by Lynn Casteel Harper, and “Ministry with the Forgotten,” by Kenneth L. Carder, address these questions head on in candid and compassionate explorations of the role of dementia in our communities and culture. Both authors draw from their family’s experience with dementia and from their professional lives as Christian ministers. Together they advocate for a greater awareness and generosity in how we speak and think of dementia. Though, the animating force behind each book remains entirely distinct.
I can think of only a handful of books that have so swiftly dismantled my default mode of thinking as Lynn Casteel Harper’s book “On Vanishing.” Harper is an award-winning essayist and minister of older adults at The Riverside Church in New York City. In “On Vanishing” Harper rigorously uproots the stigmatizing language shrouding Alzheimers. By identifying the dominant metaphors surrounding the disease (“thief, kidnapper, slow-motion murderer” leaving behind “shells”,“darkness” and, “the walking-dead”), Harper begins a deft interrogation into the deeper cultural ills perpetuating this marginalization. “On Vanishing” is a call for the robust re-imagining of Alzheimers and the way we respond to and care for each other.
Implicit in Harper’s argument and writing is a deep respect for language and its ability to create new realities. Though Harper writes from sociological and theological perspectives with manifesto-like urgency, “On Vanishing” has the emotional complexity and richness of language of all great literary non-fiction. Like the Romantic poets and writers she references throughout, Harper masterfully translates complex abstractions into crystalline distallations. It’s best to simply quote her. On the relationship between dementia and the body: “I sense that our culture is fearful both of the body’s powerlessness and its power.” On the experience of exile of dementia patients: “The story is a familiar one: the strong subjecting the weak- the strong eradicating their fears through expulsion of the weak.” On the cultural perception of mental slipping: “We want madness...to shut up, to turn vacant, to put on some clothes; we want to neutralize its danger and muzzle its unsettling truth.”
In only 219 pages, Harper covers an awesome breadth of inquiry while bringing to the fore her own relationship with her grandfather Jack and his experience with Alzheimers. This book is a genre unto its own; it begins with Harper standing in front of Jacques de Gheyn’s painting Vanitas Still Life and includes a hike up Mount Sanai as well as a brief biography of Ralph Waldo Emerson’s final years. Throughout this eclectic journey, Harper gifts us new language and metaphor with which to see Alzheimers as a deeply human experience in which we all participate.
Though “On Vanishing” is full of real-life anecdotes, there is a noticeable absence of negative depictions of the disease. Of course, the book’s entire project is to strip away the tragic language encasing Alzheimers, so perhaps Harper feared undermining her own argument by speaking to some of the grittier and unpleasant truths of the disease. But “On Vanishing” would be even more compelling had she not flinched from the full spectrum of experience. Still, this is an excellent book for anyone, regardless of age or creed, who wants to seriously examine what it means to be mortal.
In contrast, “Ministry with the Forgotten” by Kenneth L. Carder is a book written explicitly within the linguistic and theological scope of mainline Protestantism. Carder, a retired Methodist bishop and Professor Emeritus at Duke Divinity School, endeavors to expand our conception of Christian discipleship as it relates to dementia. Reflecting upon his own intimate experiences with his wife Linda’s Alzheimers, Carder takes us through his personal journey of making peace with what is. Carder draws upon the Bible and other theologians, most heavily the Scottish theologian John Swinton, to explore what it means to be a disciple of Christ when you can’t remember who Christ is.
Much of this book is a corrective to what Carder sees as a narrow or incomplete understanding of discipleship and salvation inside the Church. Carder emphasizes the communal nature of salvation when he writes, “Mediation of God’s salvation requires entering solidarity and presence with the other, as God has entered solidarity with humanity in Jesus Christ.” At every opportunity, Carder draws our attention to God’s mercy and love as an unconditional gift.
In resisting the duality frequently imposed on dementia patients as either fully present or fully absent, Carder broadens our common assumptions of self-hood and affirms the humanity of all individuals regardless of mental acuity. In a concise summary of his project, Carder writes, “There seems to be a widespread assumption that people with dementia...are void of spiritual needs, longing, or wishes. Yet, if human beings bear the divine image into whom God has breathed God’s own Spirit, we are ‘ensouled bodies, embodied souls’.”
Unlike Harper, Carder speaks frequently of the emotional and spiritual devastation of Alzheimers, and does so in order to sympathize with and offer solace to his readers. His message is ultimately one of Christian hope. In a particularly cogent passage Carder writes,“God’s memory is the inexhaustible source, the infinite fountain from which flows all existence. It is within God’s memory that “‘we live and move and have our being’,” and it is this larger message of God’s goodness that makes “Ministry with the Forgotten” a comforting message, if intellectually thin.
Among the many anecdotes Carder weaves throughout the book is the story of a woman sharing with her priest her reluctance to care for her mother. The priest responds, “But your salvation may depend on your care for her; she may very well be the means to your salvation.” This story appears in a chapter titled “Mediating God’s Salvation” in which Carder’s elaborates, “This is not to imply that we earn our salvation by our service to the vulnerable and powerless. Rather, it is the recognition that we encounter the living God in those with whom God in Christ is in solidarity and we are thereby changed.” Still, here God becomes a kind of syllogism and Carder risks turning individuals with dementia into vessels of others’ salvation.
Though, this simplifying of complex social and theological ideas into accessible, sectioned, chapters could be seen as the book’s strength. Carder’s voice throughout is warm and generous and reads very much like a sensitively written self-help book. In a later chapter titled “Dementia, Grieving, and Death” Carder even includes a section on “Tasks of Grieving.” While some might balk at the enumeration of something as complex as grief, for those who find clarity and rest in practical solutions and outlined steps, Carder’s book will serve as a welcome companion.
In tandem, “On Vanishing” by Lynn Casteel Harper and “Ministry with the Forgotten” by Kenneth L. Carder rejuvenate the collective conversation surrounding dementia and reify the enduring humanity in us all.
Originally published in The Christian Century in May 2020
