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They suggest that a meaningful life ends when a person has lost the capacity to remember and communicate his or her experience. This article seeks to explore the extent to which literary representations of dementia can enhance our understanding of what it is like to experience dementia.
Furthermore, an inside view of an afflicted literary character potentially leads to an ethical engagement with the demented Other, causing us to acknowledge our basic similarity when recognizing the continuing inner life of the sufferer. As might be expected, the form as well as the function of literary representations of dementia vary across different genres. Before concentrating on a close analysis of two particular dementia narratives, Out of Mind by J.
Bernlef 7 and Still Alice by Lisa Genova , I shall give a brief overview of the functions of dementia in contemporary narrative literature. This excursion will highlight the fact that the repertoire of ideas about dementia in narrative discourse does not per se produce a better understanding of what it is like to experience dementia: I argue that the latter effect may be achieved owing to artistic interactions of narrative technique and narrative content. Indeed, they speak from a place which is popularly perceived to represent the ends of meaningful personhood per se.
Thus, they leave a crucial gap in our knowledge of what it is like to experience advanced dementia. Imaginative literature attempts to close this gap. Thus, dementia is also frequently linked to the themes of love, memory, family heritage and family relationships. The disease not only has personal meaning for the head of the Lambert family - formerly an authoritarian patriarch he is now no longer even capable of controlling his hands or his bladder - but can be read as a criticism of the American dream according to which the individual is responsible for his or her success and is supposed to be always able to improve his or her situation.
The title of the novel guides the reader to expect some form of insanity. Maarten minutely describes his experiences and thoughts, concealing nothing.
Due to his declining cognitive faculties, however, his narrative becomes more and more enigmatic and idiosyncratic and thus more difficult for the reader to decode. In contrast to retrospective first-person narratives, here there is no distance between the narrating I who has a fuller understanding of events retrospectively and the experiencing-I.
That Maarten narrates this in the present tense, rather than retrospectively in the past tense, after having realized his mistake, allows the reader to follow the workings of his mind, and emphasises the acute pang he experiences when he becomes aware of his delusion.
For instance, the use of brackets is one important formal element that establishes a channel of communication between the more lucid version of Maarten and the reader. As such, they present a textual space for Maarten to express his anguish and pain at his disintegrating faculties.
The reader is inclined to wonder whether this is indeed a realistic representation of how a person with advanced dementia thinks.
Sometimes the brackets read more as an explanatory note by what Wayne C. It thus invites intellectual processing of the construction of the text in general and the limits of representing the workings of dementia in narrative form; such intellectual activity competes with emotional involvement. After his first experience of a time-lapse, in which he believes himself back in his kindergarten days, he finds himself utterly unable to explain his present situation 6.
He describes his confusion using a number of metaphors and images. Starts on a totally different track and then halts again. Out of Mind also draws attention to what it feels like to be suffering from agnosia. Maarten finds it increasingly difficult to attach meaning to facial expressions.
He has lost the necessary memories, and his theory of mind 23 is seriously impaired. He senses his faux-pas but cannot understand it and thus increasingly feels excluded from interactions with others.
Furthermore, the narrative highlights how unsettling it can be to encounter people who to the protagonist-narrator appear to be complete strangers in his own home. These memories are so deeply engrained in his personality that they become his primary way of making sense of his life.
But we are also invited to read this passage as depicting the war that is going on in his head. Maarten experiences his declining cognitive faculties as censorship that allows less and less to get through to the functioning parts of his brain. Residues of his past experience and memories continue to transpire throughout his advanced dementia.
Together with memory loss, language decline and aphasia are among the most important diagnostic criteria in dementia.
He is keenly aware of the fact that his language faculties are slipping away, and he describes this unsettling experience using imagery that implies that the loss of language represents the loss of personhood and is to him akin to death itself.
Here the experience of the mind losing words is compared with the potentially lethal experience of the body losing blood : I seem to lose words like another person loses blood. Under this life stirs another life in which all times, names and places whirl about topsy-turvy and in which I no longer exist as a person.
The sea imagery highlights the chaos that the loss of language causes in his mind. As Maarten loses his language and memory, he also loses the means of experiencing himself as a distinct and coherent person with a narrative identity of his own.
He has lost all sense of identity and identification with his body parts as well as the cognitive capacities to understand his situation. The narrative technique here is that of monitoring the distribution of fabula details. Wait a moment.
Wave briefly with those hands. Like this. Only very briefly. Quickly grab hold of the wood again. A human being should be made of words. Losing language means losing himself, which possibly represents the most painful aspect of his struggle with dementia. Narrative, or what linguists refer to as confabulation, 28 can to a certain degree counter this effect.
The narrative as a whole also clearly maintains the identity of Maarten as a character. Just like the winter mist outside, a mist hangs over his more recent memories. We associate spring with renewed life and hope. How can there be a metaphorical spring in dementia? Taking this view, one might read the last page of Out of Mind as cruelly ironic.
However, the tone of this passage is hopeful. Maarten takes pleasure in listening to the whispering voice that tells him about life outside. The literal ravages his dementia has wrought on his old house have been repaired: one can again see through the window he broke. If the motif of seepage - the breaking of barriers and windows, sinking, leaking and bleeding - has evoked the threat that dementia poses to the coherence of the person, the final image of repair suggests restitution of an enduring quality of selfhood.
Maarten is apparently beyond the stage of being troubled by attempts to make sense of his world. As in Out of Mind, the symptoms form part of the narrative. And yet, briefed by the blurb and the prologue, the reader has a better awareness than the experiencing protagonist of what is happening. This very often leads to dramatic irony rather than parallel experience.
While Alice, for example, attributes certain minor difficulties to her stressful life, the reader can immediately file these as first indicators of her disease.
The use of Alice as a focal character highlights her psychological reactions to what she experiences. Confined to her perspective, the reader can see situations through her eyes and understand how her declining cognitive faculties distort her perception of reality - this technique might have a consciousness-raising effect, heightening our sensitivity towards people with dementia in our own lives.
The knowledge she has of her own decline only exacerbates the pain she experiences. We can feel both with and for Alice. This awareness of our status as witnesses calls for an ethical engagement with the demented Other. Apart from focalization, the novel uses a number of techniques to address the complex issue of personality loss in dementia. Both the first and the second part of the novel have neurological prologues that present what has happened or will happen on the neurological level, at the same time setting the scene for what Alice will experience due to the neuronal loss occurring in her brain.
The neurons are personified and come to stand symbolically for the person experiencing the disease. Thus, the prologue introduces the central theme of Still Alice: the relationship between mind and self, brain functioning and identity. The question of self-awareness is central to a reading of Still Alice. Like Maarten, Alice is at times simultaneously aware and unaware of the incongruence of certain situations, such as her inability to resolve the logical conflicts she experiences due to hallucinations.
Alone at home, she suddenly fails to recognize the floor rug as such and thinks that there is a black hole in the middle of the corridor with the mail hovering over the void.
As her disease progresses, Alice finds it more and more difficult to be sure of anything: time of day, place and even her own identity. She begins to read her environment for clues to what she has been doing: while her memory is severely impaired, her rational, meaning-making faculties are still intact Similarly the ending of Still Alice stresses the importance of physical contact and human relations, for instance with her daughters, no matter that she is no longer able to recognize them as such.
In contrast to Out of Mind, the experience of stigmatization is a central aspect of Still Alice. Even the well- intentioned and educated tended to keep a fearful distance from the mentally ill. Her family and the community at Harvard would rally behind her battle and consider it noble. Significantly, this part of the novel is introduced by the second neurological prologue that symbolically depicts the effects of loneliness and stigmatization.
Small world : roman
It seems to suggest that communication with others and the capacity to act and be treated as a full person is vital for the person with dementia. Inability to connect meaningfully to others will hasten the progress of decline; the loss of a meaningful occupation as well as of nurturing relationships may actually cause the death of the person.
Various examples highlight the extent to which Alice is ostracised by her colleagues.
Facing her was scary. So for the most part.
Focalizing this situation through Alice highlights the hurt such behaviour inflicts. The situation sits uncomfortably with the reader who might recognize his or her own conduct in similar circumstances. The narrative successfully demonstrates the tragedy of her impaired memory through repetition, in both the story and the narrative discourse. Alice realizes a mistake in the experimental design that is presented during a seminar. The very different reaction - everybody is obviously embarrassed and Alice cannot understand why they ignore her comment - hurts her acutely: It was a valid point.
Alice was sure of it. Yet no one else seemed to see it. She looked at everyone not looking at her. Their body language suggested embarrassment and dread. It is the degree of awareness that seems to make this situation so hurtful. Still Alice questions the decisions the non-demented person may make for her prospective demented self.
The question arises as to where the cut-off line for a meaningful existence can be drawn. Thus her suicide plan and the carpe diem motif are intertwined as well as contrasted from the start. Enjoying a giant ice cream, she reflects on what is important to her and what she wants in the future. Although many activities she loves do indeed depend on an intact memory and intact language capacities, physical and emotional pleasures need not be tainted by the loss of these abilities.
What month is it? Where do you live? Where is your office? How many children do you have? When this happens, however, she is no longer able to recognize her answers as wrong: her suicide plan is, indeed, flawed She no longer knows how to print them out, and in the space of going upstairs to take the sleeping pills she forgets her intentions The narrative suggests that her incapacity to follow through with her suicide is a good thing.
At this stage, Alice is unable to answer these questions but her reasoning is yet intact she attempts to deduce the answers. She also makes a strong point that this knowledge is irrelevant to her: that she does not need to know where her office is because she no longer goes there.
She thus inadvertently answers his deeper question: she is happy to enjoy this moment with him. Why should she want to die? The internal focalization thus invites us to contrast her former conceptions of a meaningful life with her developing experience of life and to draw our own conclusions. Alice learns to live productively with her disease.
But I am not what I say or what I do or what I remember. She has learned something from her illness experience that is worth passing on to others. The novel stresses the importance of relationships and the attempt to enjoy every moment for itself as what can be set in opposition to this devastating disease.
This carpe diem motif runs like a thread throughout the narrative. Alice has not reached a safe place from which she can reflect on her experience and share her insights. On the one hand, one might criticise the author for evasion; on the other, one might praise her for emphasising the continued potential for development in the relationships between people with and without dementia.
Genova highlights what frequently persists even in the last stages of dementia: the emotional and sensual aspects of relationships that do not depend on higher-order cognitive functioning.Both the first and the second part of the novel have neurological prologues that present what has happened or will happen on the neurological level, at the same time setting the scene for what Alice will experience due to the neuronal loss occurring in her brain. Alice was sure of it.
Inability to connect meaningfully to others will hasten the progress of decline; the loss of a meaningful occupation as well as of nurturing relationships may actually cause the death of the person. Retrieved Imaginative literature attempts to close this gap.
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