Truth, Trust, Non-Fiction, and Dementia: Conflicts Between the Head and the Heart

This past August, my father, at age fifty-three, died of melanoma, which eventually took hold of his formerly Mensa-minded brain. Over the course of the final eight weeks of his life, I was grateful for having earlier in the year read Keeper: Living with Nancy, winner of the 2009 Wellcome Trust Book Prize, written by Andrea Gillies. The nonfiction memoir details Gillies’ experiences caring for her Alzheimer’s-ridden mother-in-law. While melanoma and Alzheimer’s are entirely different diseases, melanoma often, as in the case of my father, attacks the brain. The effects of brain disease can be shockingly and upsettingly similar, largely disabling victims, disallowing them from living normally, and altering their personalities entirely.

While Keeper provided both psychic and academic comfort during the relatively short duration of my father’s dementia (a word that does not merely apply to the elderly and encompasses a host of illnesses), what I came to realize later is how unfortunate, how unfair it is that Alzheimer’s, dementia and other terminal brain diseases can only be expressed by witnessing parties—by families, friends, and medical staff. The physical, emotional, and psychological experiences of the demented are truly left to hypothesis.

Ultimately, readers of Keeper are at the mercy of Gillies’ honesty—hopeful that she clearly and rationally evaluates situations and people. Readers of all nonfiction are seemingly left to trust the author, their judgments and their rationale. The very term “creative nonfiction” conjures numerous questions, namely, how can something be both creative and nonfiction? With regards to works like Keeper, where a main character is unable to communicate normally, other questions become prominent: What of their story? What of Nancy’s own experience? Then, what of my father’s experience? What of his paranoid delusions? Too, is it ethical to write of their experiences?

When evaluating writing of this kind, readers must also decipher the intent of the author. Is there a political agenda, or even a personal one? Is writing personal therapy, and if so, where does that leave the reader? Is writing with intent to share a form of personal therapy, and if so, does not the intent of having an audience alter the penning of the narrative? Issues of honesty and truth in the nonfiction genre seemingly pose more questions than answers. It is arguable that there may be no such thing as “nonfiction,” but merely honest perception. This essay is an attempt at understanding the personal, in the form of my need to write during my father’s illness; and the academic, in how trust is utilized through language in managing a slippery genre when subjects are unable to speak (subjects with brain disease, in this instance).

Summary of Keeper

As it will be referenced in this essay, I feel duty-bound to provide a short summary of Gillies’ Keeper. The memoir is narrated by Gillies at a time when her mother-in-law, Nancy (a false name), and her father-in-law, Morris (another false name), move into a large Scottish manor with Gillies, her husband/their son, Chris, and Gillies’ three children, two teenage girls and one prepubescent boy. The house, on a lonely Scottish peninsula, was a joint purchase between the couples at a time when Nancy and Morris could no longer live on their own due to Nancy’s dementia and Morris’s bad legs.

Gillies compiled the memoir by stringing together old journal entries, letters and notes, and by peppering it with scientific facts about Alzheimer’s Disease. The book predominantly focuses on her experiences caring for Nancy. It also highlights problems in the social work system in caring for the demented.[1]

The “Nonfiction” Genre and Truth

Life-writing, or for the purposes of this essay, “creative nonfiction,” poses a unique set of problems for both readers and writers alike. The genre seems to have taken on forms bestowed by fiction, namely the narrative form, which immediately imposes a quandary on the genre, in that very little of “life” is neatly packaged in narrative sequence. Taking on a long-term narrative structure is ultimately fictive as lives are lived in continuous fragments, silences, and even gaps. This view complies with those of Paul Eakin, who argues that “the self that is the center of all autobiographical narrative is necessarily a fictive structure.” [2] Always looming are questions of how real something must be to be real, in order to be “nonfiction.” Authors of the genre are thus immediately presented with the challenge of producing truth in an unrealistic format. Contemporary readers of nonfiction require both “truth” and a good story. As Alfred Guzzetti notes, “The conflict between representativeness and spectacle, between the wish to be informed and the wish to be astonished, can have no clean resolution.”[3]

Nonfiction writing and nonfiction filming are fraught with many of the same problems, in that anything produced by either author or filmmaker is in fact a representation. Nonfiction writing is also met by readers’ imaginations, which go on to superimpose voices and images onto a work that is supposed to be “nonfiction.” In reality, people also have basic choices of perspective (to look to the left or right, to focus attention on a particular background noise, etc.) that an author may miss, choose to ignore, or omit entirely. Guzzetti says of nonfiction film, “I demand that what it shows me be representative of a whole that I know to be unrepresentable.”[4] Thus, both authors and readers are met with a paradox: creative nonfiction is both fact and fiction; it exists in time already passed, but it exists infinitesimally; it is the truth of one, which may not be the truth of another.

In recent years, the genre has come under attack for falsities or exaggerations found in memoirs. As H.R. Stonebeck notes in The Hemingway Review regarding the scandal surrounding James Frey and his book A Million Little Pieces: “Was there a single day in January 2006 that the print and broadcast media did not make some pronouncement on truth and fiction, on fictionalized memoirs?” He then went on to quote Oprah Winfrey (who subsequently removed Frey from her book club) saying that Frey had “betrayed millions of readers.”[5] Of course, the question is: why? Why was the reaction so ardent? What is it about the labels “memoir” and “nonfiction” that demand truth and command an implicit trust, and, as Stonebeck writes, require “truthiness”? Lynn Bloom, in her essay “Living to Tell the Tale: The Complicated Ethics of Creative Nonfiction,” notes that “Philip Gerard, in Creative Nonfiction, defines as the essence of the genre, ‘stories that carry both literal truthfulness and a larger Truth, told in a clear voice, with grace, and out of a passionate curiosity about the world.’”[6] Of course, this poses the philosophically elusive question: Is there such a thing as a larger Truth? What is truth? And why are we, as humans and readers, so concerned with it?

To understand the complexities of truth and memoirs though, one must understand the unique complexities both of truth and of memoir. Perhaps the nonfiction genre best lends itself to literary theories of deconstruction (or poststructuralism). In his famous essay, “Structure, Sign, and Play in the Discourse of Human Sciences,” Jacques Derrida notes:

…structure—or rather the structurality of structure—although it has always been involved, has always been neutralized or reduced, and this by a process of giving it a center or referring it to a point of presence, a fixed origin. The function of this center was not only to orient, balance, and organize the structure—one cannot in fact conceive of an unorganized structure—but above all to make sure that the organizing principle of the structure would limit what we might call the freeplay of the structure.[7]

Here, Derrida may well have inadvertently pinpointed the central problem (irony, intended) of the nonfiction genre. Humans have long sought to organize the structure of existence—to understand the cosmos, to understand life and spirituality. As Derrida points out, “one cannot in fact conceive of an unorganized structure;” however, humans are born into a chaotic, random existence, which they are constantly trying to organize. Perhaps this need to make sense of the disorganized, the chaotic, the unexplainable life, is the very precursor to language, and furthermore, the precursor to narrative. Narrative arises out of a need to organize that which has been experienced. As the novelist Umberto Eco said, “Those things about which we cannot theorize, we must narrate.”[8]

The problem with the nonfiction genre, as far as Derrida is concerned, is that, as any other genre, it is of language—and language both allows for and disallows what he deems freeplay. Additional to nonfiction’s plight however is that it seemingly lacks a center. No one can quite agree on the definition of “creative nonfiction,” or “life-writing.” This lack of a fixed definition prohibits readers from appropriately orienting themselves within, or outside, the body of a text. Too, the text is of the real, but it is not real. This latter point, lends itself to Jean Baudrillard and his theory of hyperreality. Baudrillard contended that understanding the intricacies of human life is impossible and that the more we “multi-mediatize” or “simulate” reality, the more we in fact create a “parallel universe.”[9] In essence, any work written for the nonfiction genre takes the three-dimensional and compresses it into the two-dimensional. Baudrillard’s concern is that the hyperreal effaces reality; we are seduced into a falsity, and eventually, the falsity becomes the reality. So, creative nonfiction already exists in what is the hyperreal and is further compounded by the need of a narrative structure. Guzzetti again makes note: “We cannot help wondering what elements of the representative, and even of the chaotic, have been sacrificed in pursuit of spectacle and narrative order.”[10]

One final issue regarding truth and nonfiction is the fallibility of language. Due to the very nature of most current linguistic models, tensed verbs exist—and the present tense can, and often does (as in the case of Keeper), exist in the past. Any nonfiction narrative will always exist in the past no matter the chosen narrative tense. The very nature of language weakens any perfect model for truth, unless one views truth as timeless. Donald Keesey writes: “As long as we continue to interpret interpretation, structure, sign and freeplay in the hope of finding an end where interpretation itself can come to rest, we are, Derrida concludes, deluded by our habits of mind and language.”[11]

Trust

Perhaps the only way to read nonfiction then is to either accept the hyperreal, or to accept that there is, in fact, no reality and therefore no grand Truth—merely perception. Once making these concessions, the next immediate difficulty facing the reader is whether or not to trust the author. While no ultimate truth may exist, the author must still prove him or herself rational, for if there is no real truth, then sound, authorial perception is imperative. Is the author “suitable to represent you—your questions, your interests? [Does the author] sufficiently resemble you that [he/she] may, for this interval, stand in for you?”[12]

In 2002, the BBC sponsored an Open University forum on the philosophy of trust. In one of the predominant essays, Tom Bailey asserts that “when we trust others, we are confidently relying on them to take care of something which we care about, but which they could harm or steal if they wished. When we trust them, we make ourselves vulnerable.”[13] The intrigue here is that if Bailey’s assertion is correct, readers make themselves vulnerable to authors. This could reasonably explain the backlash received by Frey and his editor following the Million Little Pieces debacle. Yet, what is it that readers make vulnerable to authors who are personally anonymous to the readers?

Bailey suggests that trust is based on responsibility and reliability: “…taking responsibility implies that they cannot intentionally lead us to rely on them in ways they cannot or will not satisfy, since this would conflict with our basic reason for trusting them. They must therefore be at least competent and honest.” Of course, this presents a major problem for the writer of nonfiction: to whom does the author owe responsibility? Is it to themselves, to the readers, to the subjects of the narrative, or possibly to the art of storytelling itself? Bailey goes on to assert that, “Recognizing that human beings may take responsibility for how their behavior influences others’ decisions, however, offers us a way of explain how trust can be rational.”[14] Of course, all this implies, for the writer of nonfiction, that the author enters into an agreement with the reader.

The social contract theory of trust, one largely championed by Hobbes and Locke, is based on the “idea of free individuals coming together, and thrashing out a set of rules.”[15] Herein lies the problem of nonfiction as discussed earlier in the essay—there is no center, no set of rules—there is merely the thrashing. Furthermore, proponents of the social contract theory note that, “Just because I would agree, under certain circumstances to a particular deal, doesn’t mean I have to accept a similar deal now, when I haven’t agreed to it.”[16] Herein now lies the problem of fiction versus nonfiction: just because a reader agrees to engage with a fictive text in one setting does not mean they agree to it in another. All this is compounded by the fact that truth remains elusive:

What is true for writers is true for readers as well; as we experience more of life and learn more ourselves, and as the world itself changes, we come to understand events and people differently. Thus although the facts of the story, any story, remain the same, its truth—like the impressions in time-lapse photography—can change. And does.[17]

Effectively, our trust in an author may change over time, while the text remains rooted.

Onora O’Neill postulates that the ‘crisis of trust’ that leads us to these discussions, to this very essay, is in fact “better described as an attitude, indeed a culture, of suspicion.” She adds that, “Our revolution in accountability has not reduced attitudes of mistrust, but rather reinforced a culture of suspicion.”[18] Perhaps we are best to mind the words of Lynn Bloom: “Stories that are written from the heart must be understood from the heart.”[19]

This quote finally may answer why it is that readers trust, and thus, become vulnerable to authors of nonfiction. Immanuel Kant, in his theories of how humans should live, placed great importance on honesty and trust. Alison Hills says of Kant’s theories: “Trust between people is indispensible as a means of acquiring other things of value. If we never trusted anyone, we could never learn anything useful from anyone else.”[20]

So, what is it that readers receive from nonfiction texts? In many instances, it seems that readers find hope, inspiration, or maybe even empathy. Perhaps Frey’s case exploded with such ferocity because it was a redemption story, which became irrevocably irredeemable. Perhaps too readers of nonfiction instinctively read from the heart, as Bloom suggests we should; therefore, trust becomes both imperative and a leap of faith.

Writing about those unable to communicate

The problems of the nonfiction narrative—the lack of a center, the fallibility of language, issues of truth and trust—are magnified when examining texts that focus on those unable to convey their own realities. Ironically, this may be best described by words attributed to Iris Murdoch in the 2002 film, Iris:

Yes, of course, there’s something fishy about describing people’s feelings. You try hard to be accurate, but as soon as you start to define such and such a feeling, language lets you down. It’s really a machine for making falsehoods. When we really speak the truth, words are insufficient. Almost everything except things like “pass the gravy” is a lie of a sort. And that being the case, I shall shut up. Oh, and… pass the gravy.[21]

Murdoch, however, was largely a writer of fiction. The sentiment expressed here becomes infinitely more complex when referring to nonfiction, and particularly nonfiction about the incapacitated.

In the introduction to Keeper, Gillies notes of her online commentators:

Their chief complaint was to do with my having written intrusively about my mother-in-law without her consent. Nancy was even then long past the point of being able to consent to anything; she found the choice of Weetabix or cornflakes baffling enough. Intellectual competence aside, the argument remains that whatever the truth about rights, it’s in bad taste to write in unsparing detail about another’s decline.[22]

She refutes the points with two arguments: 1) Archaic views of keeping disease, particularly dementia, in the family reinforce stigmatization, and 2) that the publicizing of the details is “not despite our love, but in large part because of it.”[23] Here, we find the conundrum previously mentioned: to whom does the author owe loyalty and truth? To the reader, to the subject, to the art or to the self? There seems to be no clear answer, as in effect, the author owes all to all of the aforementioned.

If referring back to Kant, a central feature of his ethical theory is “that all people have absolute value, or dignity, because they can be autonomous and rational, and that they should be treated in ways that recognize those capacities.” Furthermore, he “thinks that you must not use other people in ways to which they could not consent. You ought to respect others; you should not use or manipulate them as a means to benefit yourself.”[24] What could Kant possibly then say of the demented, who are unable to be autonomous and rational? Since they no longer have those capacities, is the second half of the theory nullified? Since Nancy no longer had rationale and autonomy, is it then acceptable for Gillies to write an unauthorized biography of her last years? While Gillies ultimately benefited financially from the memoir, it seems unfair to say that she exploited her mother-in-law. As Bill Roorbach says,

“’My vote is to tell whatever story you have to tell exactly and truly,’ though unlike Gutkind he would change names. ‘If you have half a conscience, there will be the urge to protect people in your life. They never asked to be put on the page. You’re not a journalist, exploiting others for their stories. But listen: It’s your story, too.’”[25]

(“Gutkind, founding editor of Creative Nonfiction, regards name changes—whether to protect the innocent or the guilty—as the slippery slope to fiction: ‘Once you change a name, what else have you change?’ If I do it, he says, ‘then my reader has a right to doubt by credibility.’”[26]) Gillies changed names, though the references are thinly veiled at best. She also clearly benefited—both mentally and notoriously—from her story, which also happens to be predicated on Nancy’s story.

What is also clear is that despite protests, readers (such as I) benefited from the work—in understanding that our own experiences with the demented were not unique—that the abuse hurled at us from the beloved merely fit within a pattern of disease. The experiences were not undergone alone in the universal sense, even if alone in the physical. Gillies’ story is simply a story within a broader social context of predominantly female carers.[27] The book installs an invisible chain of experiences amongst carers facing the devastation of dementia.

Suzette Henke, in the book Shattered Subjects, explores why it is that trauma has been written about (and read) so fervently in the 20^th century. She hypothesizes that,

“…the authorial effort to reconstruct a story of psychological debilitation could offer potential for mental healing and begin to alleviate persistent symptoms of numbing, dysphoria, and uncontrollable flashbacks. Autobiography could so effectively mimic the scene of psychoanalysis that life-writing might provide a therapeutic alternative for victims of severe anxiety and, more seriously, of post-traumatic stress disorder.”[28]

She goes on to describe the writing of autobiography as a form of scriptotherapy.[29] Writing as a form of therapy seems to predate Gillies’ book, as she used personal journals to largely construct the text. In the introduction, Gillies describes the process of writing the book and both the “selfish” and “unselfish” reasons she had for writing it. Some of her listed unselfish reasons, “to kick the system ineffectually in the shins,” and “to show that for every ‘client’ in the statistics, there are one, two, four, six others whose lives are blighted in addition,” could be construed as selfish. Gillies, in effect, admits that she writes the book as a backlash, maybe even revenge, for some of the ineffective people with whom she encountered in the social care system. Nonetheless, she also has very heartfelt reasons for writing it: the personal need and the desire to share and connect with those in similar situations. If writing the book was therapeutic, it seems reasonable to assume that reading the book may also be therapeutic. Too, as Bloom suggests, it may be unethical not to undertake some life-writing: “Although one might ask, ‘Is it ethical to do so?’ the only viable answer is, as it has always been for all writers, ‘It would be unethical not to do so.”[30]

Nonetheless, we are still left with the difficulty of Nancy, of my father, of all those unable to wholly communicate; we are left with the difficulty of their alternate realities. Gillies writes of Nancy’s reality:

If I had to pick one catch-all descriptor for Nancy’s life in the last few years it would be misery. Profound misery, unceasing and insoluble. She knows that something is wrong, very wrong, but what is it? She has a series of terrible daily encounters with herself and her environment that might have come directly from an amnesiac thriller: waking to find she has aged 50 years overnight, that her parents have disappeared, that she doesn’t know the woman in the mirror, nor the people who claim to be her husband and children, and has never seen the series of rooms and furnishings that everyone around her claims insistently is her home. Time has slipped, gone seriously skew-whiff. Every day for her is spent in an ongoing quest to put things right. The trouble is, she can’t seem to concentrate on the question or on possible clues to it. She can’t navigate the problem. When she left us for the home, she was engaged daily in a very protracted, slow-motion form of panic.[31]

While Gillies is able to articulate her mother-in-law’s state, her fears, her horror-movie-esqe experiences, no one but Nancy (and, of course, Nancy is unable to do so) can actually articulate the experiences of her reality. The central problem of all nonfiction is that the author is the central character. “There is no question about whose truth gets told in creative nonfiction—is has to be the author’s, with all other truths filtered through the authorial rendering.”[32] The quandary is that Gillies, Nancy’s carer, is the closest readers can get to Nancy’s experience.

Eakin asks, “What is right and far for me to write about someone else? What is right and fair for someone else to write about me?” To which, Bloom responds: “Do we ‘own’ the facts of our own lives, or don’t we?”[33] Of course, when speaking of the demented, one could ask if even the demented own the facts of their lives—if “facts” really exist at all? Nancy could ask the same question and receive the same answer repeatedly, never remembering the previous times, the previous seconds, she had asked the question. “Nancy’s world is re-created every minute.”[34]

Gillies often references validation theories in Alzheimer’s care, that carers are encouraged to validate the experiences of the demented, to essentially “play along.” Of course, Gilles eventually finds herself tired, and finds empathizing exhausting.[35] It is of interest to note that the problems of the “validation” theory bear resemblance to the problems of creative nonfiction. The mentally competent are asked “to leave the world of real time and engage with an individual’s ‘dementia reality.’”[36] This presents a dual reality for the carer, in that they are participating in a fictitious world that is real for somebody else, while maintaining an existence in the “real” world. It also seems that the validation theory invalidates the reality of the disease—both in the literal moment, and by the figurative definition. By validating the delusions, one seemingly reduces the status of dementia from that of a mental/physical illness to one of far less severity.

In my own life, I am a writer and I admittedly write “nonfiction,” and when my father was dying, I found myself lurking near the computer, the keyboard calling and compelling me to write and to communicate with those in “the outside world.” “The outside world” effectively consisted of everyone not in my house, everyone not enmeshed in the ravages of my father’s disease, his dying. Everyone online or a future reader of my works.

Like Murdoch, like Derrida, like so many others, I found that words, the very things on which I rely most heavily, fail. On the 11^th of August, I wrote on my blog that, “It is hard to even know what to write, where to begin.” I then discussed my most recent transatlantic travel, followed by these paragraphs:

Then there are the wordless things… vaguely described by language: my father’s breathing, his hollow cheeks, his body that looks like it’s been through the Holocaust, the oval birthmark on his leg that once seemed so large, but now is shrunken with the rest of him. He is sedated–in a constant sleep, though an occasional cough escapes him. If he’s moved by the nurses, he winces.

My mother and I seem to move about the house in orbit. My mother’s energy is nervous, constant–always she must be doing something. I am tired, jetlagged, unable to properly vocalize the pain of these things, as if it would betray my former self, former experiences.

I sat on an old chair, one that belongs with my great-grandmother’s sewing table, next to my father last night. I touched his arm, but eventually settled near that oval mark–something that has always been so distinct, so indicative to me of “father.” His feet are oddly pretty–feet that were always cold, a genetic trait he seemingly passed to me.

Petting his leg, tears came down my face and the cat, who had been next to the sewing table, jumped onto the bed. He lays behind me now as I write this. My mom says that the cat has been desperate to be near my father, but she kept shooing him out, because he would step on my dad’s chest and cause him visible pain. Last night, the cat, Snuggles, rubbed my face and eventually sat opposite my dad’s legs. He stared at me and purred. Every five minutes or so, he would come to me and rub my face again and then lie next to my father’s legs. Eventually, he stretched his back paw over my father’s foot. I smiled and went to get my mother.

This was all I could do last night.

My father died early that night, and more posts came both during the hours before his death and in the days following. When I honestly evaluate myself, my motives for writing, I can only offer vague calculations: 90% for me, 10% for those reading. Of course, if 90% were for me, why not simply write in a private diary? Why publish? Why do people like Gillies go to publish private diaries?

Without ego intended, in the weeks following my father’s death, I received messages from friends and distant acquaintances; a common thread in those messages was, “Please keep writing.” One girl I knew briefly from my undergraduate years confided that she wept after reading the series of posts. This, to me, was shocking, but also affirming. She was not someone who knew my father, or even really knew me. That so many people read blogs, read the nonfiction experiences of others, suggests that narrating the human experience is worthwhile, as (as has been previously discussed in this essay) narration and language are what humans use to make sense of the world, no matter how fallible, how inadequate the language, or how hyperreal the narrative. In the face of death, something on which most humans ruminate at some point, words and narration may be our best defenses.

What I should note, however, is how much freer I felt to write in the weeks following my father’s demise. It seems that objections to writing about the incapacitated are more fervent than objections to writing about the dead. This may validate Gillies’ argument that keeping dementia “behind closed doors,” in effect, incites further stigmatization. However, one should consider that perhaps the concealment of details is not always in respect to the demented, but possibly in respect to the family of the demented. In studying the role of culture in treating and caring for dementia sufferers, W. Ladson Hinton and Sue Levkoff interviewed a woman, Mrs. O’Leary, who cared for her mother with Alzheimer’s. Mrs. O’Leary said, “But it was a lot easier for my sister to say, that’s not my mother; this is the disease; and let it roll off her back.”[37] In the last two months of my father’s life, he began having extreme delusions and hallucinations. He once woke in the middle of the night, went to the fridge, and said, “What is this? Oh, wait, I know what this is—it’s the stuff they give to unwed, pregnant teenagers.” When my mother overheard me repeating the incident to a very close friend, she became uncharacteristically upset—accusing me of mocking my father. She said, “He would hate that if he knew you told.” The question loomed, however: who exactly was he? His hallucinations eventually became so severe that he dialed 911 on two occasions—once claiming that men came through the toilet and stole all of his money and another time claiming that my mother had shot him (two ambulances arrived at our house on this occasion). In his final days, he was sedated, as when awake, he was in a constant state of paranoid anxiety. In his final stage, he wore a diaper—a fact I have never written on paper until this very moment.

I am left distressed by the previous sentence. As a writer, do I then tell you, the reader, that I also had to help my mother and my best friend clean him—averting my eyes from his genitals—while doing my best not to hurt him in his fragile state? My father was an incredibly proud person; this was generally to his detriment—he could never be wrong and went to excessive, volatile lengths to prove himself. Writing of his incontinence during his sedation would have horrified (and awakened a violent reaction) in the man I knew to be my father. Does the person I knew him to be require my discretion after his death—what about after his effective brain death (which occurred before his physical death)? In defense of the writer, Bloom notes, “No matter what their subject think, creative nonfiction writers defending the integrity of their work should not, I contend, expose their material either to censorship or to consensus.”[38]

Readers of nonfiction take for granted the pains of the writer—the thought processes, the deliberations and judgments. I, as reader, could criticize Gillies for offering few details of the pre-Alzheimer’s Nancy. By not proffering this information, readers only know an infantilized version of Nancy, which possibly mitigates the loss of her mind. Of course, readers need only to know this infantilized, dementia-ridden version, because the story is one of Alzheimer’s. More so, however, it is the story of Gillies. “The study of narrative is the study of the ways humans experience the world.”[39] This was the way Gillies experienced the world.

“Narrative is both phenomenon and method.”[40] Writing, it seems, is the medium between speech and art, making it a complex form that is judged both on artistic standards, as well as “epistemological principles, variously codified for the different purposes of journalism, history, and law.”[41] As both reader and writer, I am again drawn to Bloom’s belief that “stories that are written from the heart must be understood from the heart.”[42] Perhaps in the age of deconstruction, suspicion and shifting ethics, even shifting selves, heart is all we have to understand the stories of others and the stories of ourselves.

[1] Andrea Gillies, Keeper: Living with Nancy (London, UK: Short Books, 2009)

[2] Paul John Eakin, Fictions in Autobiography: Studies in the Art of Self-Invention (Princeton: Princeton University Press, 1992), p. 3.

[3] Alfred Guzzetti, “Notes on Representation and the Nonfiction Film,” New Literary History, 27.2 (1996),  p. 267.

[4] Guzzetti, p. 264.

[5] H.R. Stonebeck, “Under Kilimanjaro—Truthiness at Late Light: Or Would Oprah Kick Hemingway out of Her Book Club”, The Hemingway Review, 25.2 (2006), p. 124.

[6]Lynn Z. Bloom, “Living to Tell the Tale: The Complicated Ethics of Creative Nonfiction”, College English, 65.3 (2003), p. 278.

[7] Jacques Derrida, “Structure, Sign, and Play in the Discourse of the Human Sciences”, in Contexts for Criticism, ed. by Donald Keesey (New York, NY: McGraw-Hill, 2003), pp. 353-363.

[8] Umberto Eco, in The Writer’s Almanac, ed. by Garrison Keillor, <http://writersalmanac.publicradio.org/index.php?date=2011/01/05> .  5 January 2011. [Accessed 5 January 2011]

[9]Jean Baudrillard, The Intelligence of Evil or the Lucidity Pact (Berg, France: Éditions Galilée, 2005), 97-98.

[10] Guzzetti, p. 270.

[11]Donald Keesey, Contexts for Criticism, 4^th edn (New York, NY: McGraw-Hill, 2003), p. 353.

[12] Guzzetti, p. 266.

[13]Tom Bailey, “On Trust and Philosophy”, The Philosophy of Trust: BBC Reith Lectures (2002) <http://www.open2.net/trust/on_trust/on_trust1.htm>  [accessed 20 December 2010]

[14] Bailey, [accessed online]

[15] Jon Pike, “The Social Contract” The Philosophy of Trust: BBC Reith Lectures (2002) <http://www.open2.net/trust/society/soc_contract/soc_contract1.htm>  [accessed 20 December 2010]

[16] Pike, [accessed online]

[17] Bloom, p. 286.

[18] Onora O’Neill, “Onora O’Neill on Trust”, The Philosophy of Trust: BBC Reith Lectures (2002) <http://www.bbc.co.uk/radio4/reith2002/lecturer.shtml> [accessed 20 December 2010]

[19] Bloom, p. 286.

[20] Alison Hills, “Kantian Trust”, The Philosophy of Trust: BBC Reith Lectures (2002) <http://www.open2.net/trust/society/soc_kant/soc_kant1.htm>  [accessed 20 December 2010]

[21] Iris, dir. by Richard Eyre (British Broadcasting Company, 2002)  [on digital video disc]

[22] Gillies, p. 13.

[23] Gillies, p. 13.

[24] Hills, [accessed online]

[25] Bloom, pp. 278-279.

[26] Bloom, p. 278.

[27] W. Ladson Hinton and Sue Levkoff, “Constructing Alzheimer’s: Narratives of Lost Identities, Confusion and Loneliness in Old Age”, Culture, Medicine and Psychiatry, 23 (1999),  p.455

[28] Suzette Henke, Shattered Subjects, (New York, NY: St. Martin’s Press, 1998), pp. xii-xiii

[29] Henke, p. xv.

[30] Bloom, p. 278.

[31] Gillies, p. 17.

[32] Bloom, p. 286.

[33] Bloom, p. 282.

[34] Gillies, p. 33.

[35] Gillies, pp. 233-240.

[36] Gillies, p. 233.

[37] Hinton and Levkoff, p. 461.

[38] Bloom, p. 279.

[39] Michael Connelly and D. Jean Clandinin, “Stories of Experience and Narrative Inquiry”, Edicuational Researcher, 19.5 (1990), p. 2.

[40] Connelly and Clandinin, p. 2.

[41] Eric Heyne, “Toward a Theory of Literary Nonfiction”, Modern Fiction Studies, 33.3 (1987), p. 484.

[42] Bloom, p. 286.

Provenance: Submission

Julie Bolitho is a British-American writer currently based in Oxford, England. She has a master’s degree from King’s College London in Literature & Medicine and has just completed the first draft of a memoir. Her academic research currently focuses on both modern ‘exile’ and post-colonial British representations of cross-cultural relationships in literature and art.

Featured Image: “Dandelion” by svklimkin licensed under Public Domain