In her 70s, Iris Murdoch began documenting the fraying of her memory in her journals. “Find difficulty in thinking and writing,” she noted. “Be brave.” She would write one more novel, “Jackson’s Dilemma,” before receiving a diagnosis of Alzheimer’s in 1997. Drafts of a letter from that year were later discovered among her papers. “My dear,” she wrote, “I am now going away for some time. I hope you will be well.” A following version was just scrawls.
What does it mean “to go away”? What parts of us are snatched away by Alzheimer’s and what parts remain? In a searching, poetic inquiry into dementia, Lynn Casteel Harper delves into a disease that afflicts some six million Americans and yet seems shrouded in secrecy, its sufferers hidden away in institutions, its symptoms cloaked in a peculiar, telling language of terror and contempt. “A thief, kidnapper, slow-motion murderer, Alzheimer’s purportedly robs, steals and erases one’s memory, mind, personality — even one’s very self,” Harper writes in “On Vanishing.” “That persons with dementia are so readily envisioned as vanished or vanishing, succumbing to an especially terrifying, slow-moving, unstoppable vortex of suffering, surely speaks to anxieties beyond the ordinary fears of death and disease.”
Harper has worked with dementia patients as a nursing home chaplain and seen dementia-related deaths in her family. While working on the book, she learned that both of her parents carry one copy of a gene variant linked to late-onset Alzheimer’s disease: “I have a 50 percent chance of having a single copy of the gene, which doubles or triples my risk of developing the disease. I have a 25 percent chance of having two copies, which elevates my risk by eight to 12 times, giving me a 51 to 68 percent chance of having Alzheimer’s by the time I am 85.”
She writes without fear or aversion but with a robust, restless curiosity, a keenness to reframe our understanding of dementia with sensitivity and accuracy. She has not merely observed decline in patients and family members; she has also observed fresh opportunities for “compassion, honesty, humility.” The writer Floyd Skloot described his own dementia by saying, “I have been rewoven.” He was astonished to find his bonds with his family deepening: “Love and passion entered my life for the first time in decades.” The dementia activist and author Kate Swaffer confessed the same to Harper, marveling at a new clarity and sense of purpose. “Dementia is full of paradoxes,” she reported. “I know so much more than I did before.”
It isn’t that people with dementia vanish, Harper argues, it’s that we insist they do. A “cultural bigotry against both cognitive impairment and old age” imputes to them a kind of vacancy and chilling loss of personhood. We locate the self in language and vigor, in being of use to society; when people fail they are punished for that and for the panic they engender as we confront the specter of our own extinction. Harper cites a 1997 study that looked at the “loss of personhood” in dementia patients, in which one-third of family caregivers reported that they believed the existence of the suffering relative was pointless; perhaps unsurprisingly, those same caregivers treated their patients as if they were “socially dead.”
Not only do we isolate and hide away dementia patients, Harper finds that even those who care for them bear a taint. Nursing assistants in such elder care facilities — “the majority of whom are women of color — suffer workplace injuries at nearly three and a half times the national average.” Nearly 40 percent depend on public assistance. Fifteen percent of nursing assistants live below the federal poverty line.
How has this come to pass? Harper provides only a cursory history of how dementia has been understood and treated in this country. 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 does cite a gerontologist in Japan who seeks to integrate residents into society) she turns to art and literature.
It is a different mode of thinking and feeling she pursues. She looks to the art of the 17th-century vanitas school of painting, with its obsession with life’s fragility, and to the example of King Lear. “I fear I am not in my perfect mind,” Lear confesses to his last, lingering companion, the Fool. What caregivers require, Harper says, are the qualities of the Fool: loyalty, steadfastness, wit.
She looks to the example of Emerson, whose memory failed him in the last years of his life, but whose friends described him not as deteriorating but as living in a protracted state of dreaming. Perhaps here is a better model, she posits. “Dreaming does not necessarily inspire dread; rather, dreaming is considered a part of life, albeit one of its stranger manifestations. Dreamers do not endure social stigma, humiliation or ostracization. To the contrary, dreaming metaphors often invoke tender, even spiritual, qualities.”
This slant takes Harper in a few eccentric directions. There is a long, unnecessary discursion into reclaiming the language of “darkness,” for example, that comes, one might feel, at the expense of more valuable, concrete information on what it might mean to care for a person with dementia, or to reconcile the diagnosis for oneself. Care implies not only friendship and loving witness but the grunt work of labor. Care implies money, and Harper makes only glancing mention of structural factors — lack of insurance, lack of support for family caregivers in this country — that might bear more responsibility for the ways we treat people with dementia than our ungainly metaphors do.
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. She describes a scene from the documentary “First Cousin Once Removed,” in which the director Alan Berliner documents the struggle his cousin, the poet Edwin Honig, had with Alzheimer’s. “Do you know who I am?” Berliner repeatedly grills him. At one point, halfway through the film, Honig, seemingly annoyed, turns the question back at Berliner. “Do you know who you are?”