Editorial Statement for
“If I didn’t write it down, it’s shhhhh”: On Writing Dementia
By Susan M. Schultz
Homeward directly, I wish
–Patricia Rose Straub, “Anastrophe”
This notion that home can operate as a foundation of identity allows that identity (since we seem to need it) might function as some kind of “soul,” part of the baggage we can’t leave (behind, or somewhere else) and that it (identity) therefore needs the constructs of home (place, workplace, school, kitchen, neighborhood, and so forth) eventually, in dementia, as a presence that is absent.
First house, then home. I was at the United Airlines gate at Honolulu International Airport last September, just short of three months after my mother died in an Alzheimer’s “home,” when a man nearby began talking very loudly on his cell phone. He was talking about locking his mother into one room of the house, not letting her out except to go to the bathroom, bringing her food and water. He was talking about she was hurting the family. He asked to speak to her directly, then launched into an even louder diatribe: “YOU ARE AN EVIL WICKED PERSON. YOU ARE AN EVIL WICKED PERSON. YOU ARE AN EVIL WICKED PERSON, MOM.” He was locking her into a room in the house, but he also seemed locked out of empathy. The house promised him limitation, control. It was a closed space, nothing more than a prison for his mother, and for him.
Although dementia is a disease characterized by the mind’s erasure, the process by which erasure occurs is physical. Sufferers, while they still have words, describe them in terms of objects and space. Thomas DeBaggio, in his memoir, Losing My Mind, writes this: “More and more I am unconsciously mixing words that have similar sounds: our and out, would and wood, me and be, to name a few. This leaking alphabet of reality is something I might have expected in speech, not in writing” (181). The fluid alphabet, which runs rather than sticks, makes it increasingly hard for DeBaggio—a former journalist—to set thoughts to paper: “The struggle to find the words, to express myself, has become insurmountable. I must now be done with writing and lick words instead” (207). His last phrase is most curious. To lick words is to taste something sweet, or to defeat them. To lick words is to think of them as salt (on your wound). To lick words is to like them a lot, but not be able to wrestle them into patterns you want them to follow. To lack words is also to be caregiver, as Beatriz Terrazas, whose blog, My Mother’s Brain, is a must-read for anyone interested in Alzheimer’s. Terrazas is a journalist who lost her own words to her mother’s Alzheimer’s, and continues to battle what is usually termed “writer’s block.” This term takes on new urgency in the face of a loved one’s dementia.
The Alzheimer patient’s inability to recognize pattern leads to excess of pattern in corporate Alzheimer’s homes. Or so it seemed to me visiting my mother over the course of nearly five years in her “home” in northern Virginia. The four corridors of her ManorCare facility featured simple symbols on their walls so that residents could find their rooms. There were birds and boats in front of one wing, a clothes line and laundry basket in front of another. The furniture was hyper-suburban, the art plain, new and yet made to look old. Nostalgia had little to do with the past, more with keeping the present intact. (Perhaps this is always the case, but dementia inspires an exaggerated need to fix things in time, place.) The dining areas featured tables draped with heavy cloths, surrounded by sturdy upholstered chairs. A large television blasted away in the four living rooms. But many of the residents spent time, especially during late afternoon’s sundowning, trying to find their way home, away from The Home. As Fred Wah writes about his mother: “Since then we witnessed her loss and confusion about ‘where’ home is a number of times. She might be up half the night packing her bags and in the morning she’d be waiting: ‘I’m all packed. Are we ready to go home now?’ This from an apartment she had lived in for 5 years and in a town she had lived in for 15 years.” One woman in my mother’s home often wanted to borrow a couple of dollars to take a taxi home to the Bronx (from Northern Virginia) and became quite agitated when no one would do her that kindness. Early in her time at the Alzheimer’s home my mother called to say she was in Afghanistan and wanted to get home to Wooster, Ohio, which is where her mother had died decades earlier.
As David Clegg points out in the interview here about the Trebus Project, which he founded, Alzheimer’s sufferers often think in architectural, spatial, terms. Not only do they think a lot about “home” as a place, but their notion of language is also spatial, the past tense “down,” their thoughts “behind the wall.” He describes his process of editing transcripts of stories told to him by dementia patients as follows:
Once I had a block of stories I began to see patterns. For example, there is a strange tendency for people to create architectural metaphors to explain their memory loss. They might say a thought is under the floor or behind the wall, suggesting that it is physically present but inaccessible. People often describe events that happened years before as recent but removed in terms of distance, “Mum, lives a hundred miles away now”. Many of the stories are peppered with references to moving up or down, usually up, so the past is usually described as “down”. Many of the storytellers have told me that their room is above or even on top of (in the sense of superimposed) on the family home from their childhood. As a sculptor, I find the notion of symbolic space endlessly fascinating.
And so, Florence, a woman from my mother’s Alzheimer’s home, says in my “Stanzas in Meditation”: “He showed us that, I was wanting to go to the 5th floor; didn’t know how to, must be the 1st floor where they cook stuff.” (There was no 5th floor where she and my mother were living.) Frances, whose words Clegg carefully transcribed, combines analogies of forgetting as physical activity with a spatial, architectural sense of her past: “I always thought I had a very good memory. Now I have the experience that a piece of memory comes unstuck. When I put it back together, other things are falling apart. I think I said to you that my grandfather took me somewhere… I think I said it was New York because… and I… I recognised the buildings because they were so much like the shallow ones opposite… and they seem part of the story.” Memory is a form of recognition before things “fall apart,” before they come “unstuck.” Dementia is life without the glue, the loss of a sense of solid(ish) shape to one’s experience. Oddly enough, while words are often thought to be immaterial, the dementia sufferer experiences them as something solid, to be put somewhere, or licked.
Elsewhere in this feature, other writers—those without Alzheimer’s but who have had family members with the disease—point vividly to the significance of space, of rooms. Beatriz Terrazas retreats to her living room, while relatives and cops search for her mother, who has wandered out through locked doors, and into the dangerous world. Steel Wagstaff writes at length about his grandfather’s land in Utah, his house, a few windows: “Left of the sink is a smaller window, unobtrusive, hung with faded drapes. It gives a view of the interior of the greenhouse, and through it I see a sprawl of greens, amassing in deep, various textures.” Michael Snediker writes an elegy to the spouse of a friend, and calls it “Philosopher’s Window.” The reader opens a window onto a loved one whose interiority now seems to have gone missing. The literal version of “gone missing” is, of course, one of the symptoms of the illness. The Alzheimer’s sufferer is on the other side of that window, but seemingly cannot see through. “Windows to the soul” grow cloudy to the witness, as well as the sufferer, hard to see through for the interlocutor, too.
Snediker, in his essay on Gertrude Stein’s “Lucy Church Amiably,” notes that relationality is based on prepositions, which situate us in space. Space can close us down, but can also provide an opening. “[W]e can be besides, in this opening up of dementia-reading in which these phenomena less learn from each other, than patiently, wait with each other, to see what would happen. And try as readers to be as patient as possible, because in this room, this ill-named ‘facility,’ we are all patients.” The desire to go home, which one hears so often from patients, residents, is a desire to go to another place, one that often includes relatives long dead, except in the consciousness of the patient. To live in a facility is to lack facility otherwise; it’s the very difficulty of making language, or even traversing a room, that makes Alzheimer’s writing compelling, requires us all to be “patient.”
To “lick words,” as Thomas DeBaggio writes, may not make prose-sense, but it does make poem-sense. There’s a link between early and middle-dementia and poetic thinking, even when that thinking is not recognized as such by its “author.” The inability to find an exact word requires the patient to find an alternative word or phrase, to make metaphor, to posit synecdoche. (I’m reminded otherwise of a Chinese poet I met once, early in his journey into English, who described Whitman’s lines of verse in translation as going from ther–one side of a long room–to there–the other side.) It was the difficult—if more compelling—way to say “the lines are long.” So sometimes this poetry is poetry; sometimes it is symbolic movement or conversation that meets the listener’s ear not as literal request (which it might be) but as lyrical outburst.
There is much that is awful about dementia, from memory loss to frequent lack of adequate care in and out of prisons and residential facilities. So it behoves us to recognize that and to see some of the beauty the disease can—inadvertently—offer. That beauty sometimes extends into freshly constructed relationships between relatives with and without the disease; as Steel Wagstaff notes, his life with his grandmother got easier when her mind slipped. The same was true for me; many of the sweetest times I had with my mother occurred when she was ill. This is not an argument for the disease. But it may—oddly–be an argument for seeking out traces of the disease in art. Snediker finds it in Gertrude Stein, Clegg in Samuel Beckett’s late plays. Alzheimer’s exists not only behind locked doors, like the one the man at the airport had closed against his mother’s wandering; it lives in the words we read and write. Publications like this one are like the number code visitors punch in to open the door to the facility their family member resides in. By way of metaphor, they open a door that is more than metaphorical, into an open space where Alzheimer’s sufferers are not terrifying, but simply other versions of themselves.
Susan M. Schultz has lived in Hawai`i since 1990. Her book, Dementia Blog (Singing Horse, 2008), chronicles her mother’s decline into Alzheimer’s over a six month period in 2006-2007. She completed the dementia project on Tinfish Editor’s Blog, ending it with her mother’s death in June, 2011. Her other books include the recent Memory Cards: 2010-2011 Series, also from Singing Horse, and A Poetics of Impasse in Modern and Contemporary American Poetry (University of Alabama Press, 2005). She has edited Tinfish Press since 1995.