Susan M. Schultz
I was at the United Airlines gate at Honolulu International Airport in September 2011, just 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 with his daughter 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 only as needed. He was talking about how 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 having her locked 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.
HOME: Home is a fixed point. We are at home; we leave home; we miss home; we return home: it is both a place and a grammatical object. It's considered benign, unless it is a nursing home, juvenile detention home, an Alzheimer's home. These are homes with locks on the inside. In the Alzheimer's home, the residents talk incessantly about going home, a home that is always elsewhere, even if they cannot remember where that elsewhere was.
Those of us who have a home and a sense of direction—or a GPS--know how to get there. A memory bubbles up of my mother telling me on the phone years before we knew she suffered dementia that she had gotten lost driving home three miles from a community center. She had driven the route many times before. A few years after that she began to wander. We wander away from home, not toward it. The OED refers to “devious journeying,” to “irregular turning,” to “aimless passing,” to “incoherent ramblings” (those are done with our words, as well as our feet).
On Monday, December 12, 2011, the Yuma Sun reported that a 75 year old woman suffering from dementia had been reported missing. Her car was found. Footprints led from the car into the desert. 300 yards away, “hiding behind some brush, disoriented and dehydrated, but alive,” she had been in the desert for five hours. There was also a second discovery to report, 160 pounds of marijuana worth approximately $82,800. “The area was well known for smugglers to transport drugs and illegal aliens.” (IACP).
There is home and there is homeland. According to the OED, “homeland” is “a person's home country or native land . . . a place regarded as the home of something.” The woman suffering dementia had wandered away from her home, but remained in her homeland; the smugglers who left their marijuana in the desert had invaded that homeland, crossed its border, threatened its security. “The Department of Homeland Security has a vital mission: to secure the nation from the many threats we face.” Under the Border Security section of their website I read the following: “Protecting our borders from the illegal movement of weapons, drugs, contraband, and people, while promoting lawful entry and exit, is essential to homeland security, economic prosperity, and national sovereignty.” Jobs are available. We manage diseases; we organize care; I went to court to become my mother's guardian so that I could impose care upon her.
The woman is not a threat to homeland security, but to our notions of home itself. As Catherine Malabou writes in What Shall We Do with Our Brain?, “An Alzheimer's patient is the nemesis of connectionist society, the counter-model of flexibility. He is presented as a disaffiliated person: errant, without memory, asocial, without recourse.” And so the threat she poses IS like that of the smuggler, the illegal who crosses the national border and then hides: “One can see an obvious relation,” she argues, “between, on the one hand, the image constructed and conveyed of such a patient and, on the other, those constructed of the homeless, illegal immigrants, or unemployed persons about to be kicked off the dole” (52). There are national boundaries, which we usually cannot see, and there are mental borders, also invisible to the naked eye.
One term is “illegal immigrants.” In 2010, the Governor of Arizona, Jan Brewer, was quoted as claiming that “they come in as illegal people wanting to come to work. Then they are accosted and they become subjects of the drug cartel,” are forced to become “mules.” More recently (she is still governor of Arizona) she objected strongly to the U.S. Department of Homeland Security's decision to release illegal immigrants from jails a week before mandatory budget cuts across the government. These cuts were caused by members of her own party, of course. “This is pure political posturing and the height of absurdity,” she said. “This represents a return to exactly the kind of catch-and-release procedures that have long made a mockery of our country's immigration system.” (ABC15). From mules to fish, these illegals are reduced to the category of animals.
Illegal immigrants are also called “illegal aliens.” At best, aliens are foreigners. They are also “hostile, repugnant”; “of a completely different nature or character to”; they “do not belong to a particular family, community, country, etc.” (OED) Let's not forget that they can also be extraterrestrial. That they threaten to harm our sovereignty—our planet, our nation, our minds—that they steal our identities. Tea party member Ronald W. Mortenson wrote in 2010 that he was “working on legislation designed to address the problems associated with illegal alien driven, child identity theft in Utah.” He asserts that, having violated American immigration law, the “illegal alien” “immediately graduates to felony document fraud . . . and felony identity theft in order to get jobs with 'reputable' employers.” (Center for Immigration Studies.) Further Google Alzheimer's and aliens and you get an article called “Alzheimer's may manifest from inter-dimensional mind parasites.” (Samuels, examiner.com). As Alzheimer's causes are unknown, they can be extrapolated. Dr. Michael Salla wrote Exopolitics, where he “specifically documents regressive interdimensional entities that use mind control weapons technologies, that interfere with human cognitive functions.” (Samuels, examiner.com) The rhetorical question seals it: “Could Alzheimer's be a side effect of an alleged interference in human cognitive functions?”
Science fiction is often scary, terrifying. What is more horrifying than memory loss, identity diffusion? As Stephen G. Post writes of people with dementia, “Because such extreme forgetfulness threatens observers existentially, it is detested.” That the “it” elides into “he” or “she” probably goes without saying, as the sufferer becomes the disease. Jesse F. Ballenger begins his fine history of Alzheimer's disease by noting “the peculiar dread that dementia generates in American society” (1). In the Outer Limits television show, the episode “Paradise,” aired first in 1996, gets at some of this horror, and mixes it with sex, the failure to reproduce and alien IVF. A series of young women suddenly grow very old and die. They do so after having sex with someone they pick up in a bar. At the same time, residents of the local Alzheimer's unit keep saying they will “go into the light.” They have been going to a place in the cemetery where, as young women, they met aliens who wanted to implant eggs in them. The eggs required 50 years to mature. As old women they returned, became young again, had sex—but only the woman who loved her partner got to survive, bear a child, and then be cured of Alzheimer's (albeit while returning to old age). She gives the baby to her daughter, unable to bear a child of her own. There's a moral overlay, yes, but also a less terrifying alien exit from the body than in the movie ALIEN, for example. Usually “alien forms” are not the babies we most want, but parts of ourselves we want to excise, do without. Often, we put them in prison after they cross our borders, lest they start breaking other laws. According to right-wing sites, they will.
Alzheimer's is a disability whose sufferer does not know it is one, at least in the later stages. The brain cannot contemplate its own breaking. The body/brain is damaged, but something new comes of it, an identity of “now” rather than “then,” as Stephen G. Post puts it. Catherine Malabou looked at her grandmother and wrote: “Behind the familiar halo of hair, the tone of her voice, the blue of her eyes: the absolutely incontestable presence of someone else” (xi). She has become “unfamiliar,” no longer joined by family resemblance. Amid all the destruction, there is something new, “an adventure of form,” as she puts it. A few pages later in The New Wounded: From Neurosis to Brain Damage, she writes: “If brain damage creates a new identity, this creation can be only creation through the destruction of form” (17). This creation by way of destruction she calls “plasticity” (plastiquage in French is a bomb), which she proposes as an alternative to “flexibility” (more easily tamed by capitalism as flex-time, for example).
Over the many years I've written Alzheimer's, primarily the course of my mother's illness and her death, I've wondered how best to do so. I've read books by caregivers, by spouses, by adult children, I've read memoirs by people suffering early Alzheimer's, and I've watched films and videos to see how the steadily fracturing narrative of this illness is constructed. I have come to believe, like Malabou, that flexibility fails, that normative narrative structures cannot do justice to Alzheimer's, that plasticity is the only way to approach such illness. Malabou likens the disease to an artist: “the new ultimate version of her was the work of the disease, its opus, its own sculpture.” Experimental writing, which has traditionally started from language and worked back toward a life that considers itself sturdier than it is, can be used to write outward from identity's implosions. Some writing we thought belonged to the former category—a lot of late Beckett, for example—perhaps and probably belongs to the latter. Because Alzheimer's creates repetitive movements to go with repetitive phrases, Beckett's play Rockaby (old woman in chair, the chair—alienated from her intention--rocking, rocking, rocking, repeating, repeating, repeating) is less avant-garde than realist.
To write with plasticity is to do two things: the first is to record the chaos of the disease, of a brain that can still—in many cases—generate language, but cannot organize words into grammatical phrases. The New Syllable, one might call this, as sentences eventually disintegrate into sounds. The second is to create a relationship with the reader analogous to that between a person with Alzheimer's and her primary reader, daughter, spouse, friend. (To witness a person with Alzheimer's is to attempt to interpret sometimes uninterpretable clues.) Eileen A. Joy describes this as “a speculative reading practice [that] might pay more attention to the ways in which any given unit of a text has its own propensities and relations that might pull against the system and open it to productive errancy (literary, 'rambling', 'wandering'--moments of becoming-stray).” (29). If we can approach the world-as-text as a place that is not a fixed home or homeland, rather a home that wanders (John Ashbery's poem “Houseboat Days” resonates here: “The mind/Is so hospitable, taking in everything/Like boarders, and you don't see until/It's all over how little there was to learn...”). “Boarders” is spelled with an a, but is a crypt-word for “borders” without one. Another possibility lies in the radical instabilities of humor. Testifying before Congress, comedian Stephen Colbert, who spent a day working with migrant laborers, remarked: "My great-grandfather did not travel across four thousand miles of the Atlantic Ocean to see this nation overrun by immigrants. He did it because he killed a man back in Ireland. That's the rumor." He transposes the Mexican migrant into an Irish one, destabilizing the typical American's image of the “illegal alien” into a forebear, a relative.
How do we show the eye how to wander? Shift senses for a moment. We listen, and we write what we hear. If, as Michael Ignatieff writes (quoted by Nancy Nyquist Potter) in the face of Alzheimer's: “We're all moral tourists here. Illness is another country. None of us has any idea,” then we travel there (210). According to Potter, in her essay, “Moral Tourists and World Travelers: Some Epistemological Issues in Understanding Patients' Worlds,” “The very notion of travel presupposes a home” (213). As anyone from a tourist mecca knows, tourism usually doesn't yield knowledge, let alone wisdom, but at its best, can signify curiosity, a willingness to listen, to document. To be on vacation means vacating ones' usual place and time, allowing for playfulness, for re-adjustment. Kate Lindemann, in an essay on being a feminist philosopher who underwent brain trauma, argues that the best kind of empathy means that “by careful listening and observation she understands what the conditions or situation mean to the disabled Other, acknowledges that self-perception, and decides to treat them as if their self perception needs to be treated” (118). A letting go of the boundaries, the borders, of self, of nation, and the respectful entering into a more chaotic, less limited, place. Not to imprison mother at home, but to wander with her.
In an essay on Gertrude Stein's “Lucy Church Amiably,” Michael Snediker writes of a “moment before dementia,” which I would simply transpose into the moment of dementia: “That there exists a moment before dementia in which one engages another's uncertainty with uncertainty simplifies the phenomena of persons who are supposed to be certain—who love, have been loved by, persons perhaps on the verge of certainty” (EOAGH). If dementia can be defined as “a moment of uncertainty,” an unstable pivot that unites sufferer and witness in temporal confusion, then to learn to read dementia is to perform a social act. This is a text, like other demented texts, that Snediker alerts us “might require different forms of reading. That this reading has personal stakes,” and I would add, social stakes as well. Like dementia, this mode of reading occurs not in historical time, but in the present: “in this opening up of dementia-reading 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.”
If we posit that Stein participates in, if not inaugurates, Demented Lit, then who else joins this canon of plasticity? While I hate the-argument-by-list, I have composed a necessarily incomplete one: Shakespeare's King Lear; Gertrude Stein; Samuel Beckett (late plays); B.S. Johnson, House Mother Normal; the poems of Stephen Vincent's mother; edited transcripts from David Clegg's The Trebus Project; Thomas DeBaggio's Losing My Mind; late poems of George Oppen. If we look at literature through the shattering lens of dementia, we can transpose Charles Bernstein's “Artifice of Absorption” from a text about reading to one about witnessing. It's that ability to witness, to be mindful of, to listen to what is there instead of what we want to be there, that enables us to see these wanderers—whether they be sufferers from Alzheimer's or “illegal aliens”--more as themselves and less as what we most fear about ourselves.
“Alzheimer's Woman and More Found in the Desert.” International Association of Chiefs of Police: IACP's Alzheimer's Initiatives. Monday, 12 December 2011. Web. 29 December 2013.
Ashbery, John. Houseboat Days. New York: Penguin, 1977.
Ballenger, Jesse. Self, Senility, and Alzheimer's Disease in Modern America: A History. Baltimore: Johns Hopkins UP, 2006. Print.
Beckett, Samuel. Rockaby and Other Short Pieces. New York: Grove Atlantic, 1981. Print.
“Border Security.” Homeland Security. Web. 20 December 2013.
Davenport, Paul. “Jan Brewer: Most Illegal Immigrants are Smuggling Drugs.” Huffington Post. 25 June 2010. Web. 29 December 2013.
Joy, Eileen A. “Weird Reading.” Speculations: A Journal of Speculative Realism (IV). 2013. Web pdf. 29 December 2013.
Lindemann, Kate. “Adults with Adult-Onset Head Injury: A Crucial Resource for Feminist Philosophers.” Hypatia (16:4). Fall, 2001. 105-123.
Malabou, Catherine. The New Wounded: From Neurosis to Brain Damage. Trans. Steven Miller. NY: Fordham UP, 2012.
--What Shall We Do With Our Brain? Trans. Sebastian Rand. NY: Fordham University Press, 2008. Print.
Mortenson, Ronald W. “Why the Tea Party Movement Must Oppose Illegal Immigration and Amnesty.” Center for Immigration Studies. Web. 29 December 2013.
Post, Stephen G. “Love and the deeply forgetful.” stephengpost.com. 29 December 2013.
Potter, Nancy Nyquist. “Moral Tourists and World Travelers: Some Epistemological Issues in Understanding Patients' Worlds.” Philosophy, Psychiatry, and Psychology. 10:3. September 2003. 209-233.
Samuels, Raymond. “Alzheimer's may manifest from inter-dimensional mind parasites.” examiner.com. 22 May 2012. Web. 29 December 2013.
“Sequester Update: Gov. Jan Brewer “appalled” after illegal immigrants released.” abc15.com. 26 February 2013. Web. 29 December 2013.
Silverleib, Alan. “Stephen Colbert storms Capitol Hill for migrant workers.” cnn.com. 24 September 2010. Web. 29 December 2013.
Snediker, Michael. “Lucy Church, Amiably.” EOAGH 8. Web. 29 December 2013.
The Outer Limits. Season 2, Episode 17: “Paradise.” 16 June 1996. Web. 29 December 2013.