The cultural critic Susan Sontag’s classic Illness as Metaphor emerged from her rage at seeing, after her own cancer diagnosis, “how much the very reputation of this illness added to the suffering of those who have it.” In 1978, Sontag contended with cancer’s reputation as scourge, invader, predator, demonic pregnancy, demonic enemy, barbarian within. Cancer’s roots were then imagined, at least in part, as psychological, resulting from repressed emotion. These metaphoric conceptions of cancer saddled its sufferers with shame and prevented many from seeking proper treatment or even knowing their diagnosis. A decade later, in AIDS and Its Metaphors, Sontag turned her critique to popular metaphors surrounding AIDS, the new “scourge,” which gravitated toward the language of contagion and contamination, carrying an even greater charge of stigmatization. AIDS, Sontag wrote, was among “grave illnesses regarded as more than just illnesses.” It was perceived “not just as lethal but as dehumanizing”; it supposedly degraded and dissolved the person. Sontag hoped that even this disease, so “fraught with meaning,” could become, one day, “just an illness.”
In our contemporary moment, I think Alzheimer’s has become another disease “fraught with meaning.” It, too, is regularly spoken of as a force that degrades and dissolves a person. Rather than the fear of invasion or contagion, it evokes the fear of advancing oblivion. The disease is “the long goodbye,” people say, or “the death that leaves the body behind.” The afflicted become the “living dead,” who have vanished in plain sight. We are taught to think that dementia displaces persons, turning their faces to “blank stares” and their bodies to “shells,” making strangers of intimates. A thief, kidnapper, slow-motion murderer, Alzheimer’s purportedly robs, steals, and erases one’s memory, mind, personality—even one’s very self. 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. The intense negativity of dementia metaphors—combined with their ubiquity—moves them beyond vivid description of brain disease; they express an outsized dread. It seems dementia has become more than just an illness.
I worry that the language we think describes a reality also creates one, that Alzheimer’s notorious reputation adds to the suffering of those who have it, their caregivers, and everyone else in the at-risk population—that is, all of us who plan to grow old. Images of vacancy seem to push persons who do not have dementia away from those who do, keeping “us” at arm’s length from “them.” If “the light’s on but nobody’s home,” why would I (or anyone else) wish to visit?
The story of how I became involved with dementia is not entirely straightforward—perhaps mirroring the oblique course of dementia itself. I can trace some of my interest back to the summer after I began divinity school, the summer I turned twenty-four, when I completed my first unit of chaplaincy training in a hospital. I was assigned to a neurological unit where patients were recovering from brain surgery. They had had tumors, aneurysms, strokes. I spent each day with patients who struggled to find words, to relearn basic tasks, and to just stay awake. The fragility of the brain pressed in upon me, and I began to confront how closely I had tied my sense of identity and worth to my own intellectual ability, a metric that now felt remarkably tenuous. I wanted to push away this disquieting insight, but grappling with the brain’s changeability would not leave me so easily. Two weeks after I left the hospital, I began a requisite yearlong internship. My placement was a continuing care retirement community, also known as a CCRC, which, I learned, is a campus that contains tiered levels of care, including independent living, assisted living, and skilled nursing or “nursing home” care. Rather than the acute brain traumas I encountered in the hospital, this assignment exposed me to the ordinary frailties of aging minds.
After I completed my Master of Divinity degree, I was hired as the chaplain at a 1,400-resident CCRC on the New Jersey Shore. On my first day an administrator gave me a tour of each of the five floors. The only part of the tour I recall is my introduction to the fourth floor, a skilled nursing unit that had been designated for residents with severe dementia. I have a hazy memory of stepping just inside the doorway of the unit’s large activity room. A young staff member, wearing a Hawaiian shirt and floppy straw hat, supported an old man by the elbow as he lumbered across the room. My guide told me that I would likely not spend much time here. With nearly two hundred residents under my care, I would find other (better, more productive) ways to fill my day than visiting persons who would forget me the moment I left.
Memory is tricky. I now wonder if he had indeed expressed his prejudices to me directly, or if I absorbed them indirectly, or if I simply carried them within myself. Nevertheless, I received a clear message, consistent with a dementia-phobic culture: my presence would not be needed with these particular residents, my absence would not be noticed. The unspoken corollary: I would not need these persons’ presence or be impacted by their absence. They were considered to have disappeared from themselves, and I was expected to disappear from them.
The closer I came to people with dementia, the more my assumptions vanished, the more they became individuals rather than a blur of disability. While I encountered diminishment and loss on the Gardens’ dementia unit, there was more than just deterioration. At times I felt I was witnessing, instead, a kind of ascendency—of compassion, honesty, humility. I befriended Evelyn, a retired math teacher, who spoke to me as a colleague, often asking, “How are your students?” I met Mary, who, despite her acute anxiety, readily assisted her less-mobile neighbors, pushing them in their wheelchairs to activities and meals—and who once helped me plan a party. I met Bernice, who taught me that not all of the disappearances associated with dementia prove unwelcome or tragic. What vanished in Bernice’s later years were some of the distressing manifestations of her long-standing mental illness. Crippling anxiety and paranoid delusions gave way to more laughter and delight. One day she pointed out my gray hair, grinned, and declared, “See, you’re aging, too! Just like us!”
I came to know these residents and so many more—not primarily as defective victims of Alzheimer’s, presumed to be “lost” to their disease—but as complex, dynamic individuals. And I began to wonder: why do we—those whom the dementia activist Morris Friedell termed the “temporarily ablebrained”—need them to vanish? Why are we so eager to view them as disappearing or disappeared? And what possibilities are we precluding, what hard work of the soul are we avoiding, by imposing this distance?
I want to probe the distance. I want to understand why certain metaphors dominate, eclipsing other ways of imagining dementia, and how these depictions of dementia generate and reinforce stigma. I want to interrogate the cultural, social, political, and spiritual values that disproportionately define us by certain cognitive capacities. I am searching for new, more robust renderings of dementia that expand our vision beyond progressive vacancy and dread.
Excerpted from On Vanishing: Mortality, Dementia, and What It Means to Disappear. Copyright © 2020 by Lynn Casteel Harper. Reprinted by permission of Catapult.
