She took the ought-to-be for the actual and adhered to what she should like and how things should be. It was as though she travelled by a map of the wrong place, hitting walls, driving into ditches, missing her destination, but never stopping or throwing out the map.136
In Solnit’s observation of her mother's Alzheimer's experience, unlike the scouting party in the Miroslav Holub poem quoted by Phillips, the wrong map was not something she was able to orient herself by. Then again, Phillips also writes: "They [the scouting party] didn't need the map of where they were, a real map, to get back; they just needed one that gave them a sense of direction."137 Remove 'to get back' from that line, and it fits the sense of purpose previously mentioned. Solnit's observations are from the outside of her mother’s experience; people living with and/or caring at distance for family members who have dementia can feel confused, saddened or upset that their respective maps, of past and present, of memories as shared reactivations of the past in the present, no longer align. My guess, then, is that Solnit's mother can be said to have had a map of sorts; it's just that neither of them could know what it was for. But I'd argue that she was still lost, therefore.
If we stay with the map analogy, cognitive decline in dementia could, broadly speaking, be imaged as the gradual and irreversible obfuscation of a person's maps and/or their access to them; the sense of having them might still be there, but even if they can be retrieved there's little to nothing that can be perceived in them that anyone can usefully recognise. And yet:
...maps,
By which life moves somewhere or other138
Even when lost, we are still alive. As Thomas Fuchs puts it:
A concept of person grounded solely in rationality and reflection inevitably stigmatizes people with severe cognitive deficits… An embodied concept of the person is based on… continuity of organic life, which the body establishes even through phases of unconsciousness… Personal existence means primarily bodily selfhood and being alive, from the beginning to the end. If we understand selfhood as primarily bodily, we therefore arrive at a different perception of the patient with dementia.139
The reflective research process traced here obliquely opened up different perspectives on dementia, and helped to support the conception of lostness in relation to cognitive decline as something not entirely, irredeemably negative. It also enabled confidence in intuitive approaches to research that required me to conceive work about lived experiences I have no subjective knowledge of.
CHAPTER 2: UNKNOWING
Negative Capability
In her introduction to A Field Guide to Getting Lost (2006), Solnit also refers to John Keats’ ‘negative capability’,126 “that is when a man is capable of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason – Coleridge, for instance, would let go by a fine isolated verisimilitude caught from the Penetralium of mystery, from being incapable of remaining content with half knowledge.”127 Keats was here positioning himself in relation to rival poet Samuel Taylor Coleridge, whose ‘capability’ he saw as being too attached to a quest for certitude. The negative, then, is meant in the sense of inverse, in opposition to, rather than nonpositive. However, Solnit is referencing negative capability in the sense that the lostness her book propounds can be considered a positive form of ‘not-knowing’.
In the realm of contemporary psychoanalysis and psychotherapy, Keats’ negative capability has also been embraced, or adapted to suit these disciplines. Psychotherapist Diana Voller, for example, defines it, in her field of professional practice, as “the advanced ability of a person to tolerate uncertainty. This does not mean the passive uncertainty associated with ignorance or general insecurity but the active uncertainty that is to do with being without a template and yet being able to tolerate, or even relish, a sense of feeling lost.”128 British psychoanalyst and writer Adam Phillips provides another slant. In a chapter of his book On Balance (2010), the only reference to Keats is in the use of his negative capability as its title, and the essay129 instead takes an oblique approach. Centred in a 1984 poem by Miroslav Holub entitled Brief Reflection on Maps – which is about a scouting party lost in a snowstorm in the Alps, that somehow managed to find its way using a map of the Pyrenees – Phillips proposes his own take on lostness. For example, he writes that “being lost may be the precondition for finding the object of desire,”130 from there suggesting that a map can be an object of desire (a map being something, anything, that provides a sense of direction or purpose), and that one can use such to orient oneself even if one is lost with the wrong ‘map’. This takes negative capability beyond Keats’ desire to be “in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason” – the capacity to be in the present moment, alive to the unknown, for its own sake – towards lostness as an indirect means of finding one’s way through uncertainty to unpremeditated conclusion. It also differs with the disorienting sense of “the familiar falling away… the unfamiliar appearing” combined derived from Solnit’s definitions of lost, and meandering cross-comparative readings of Phillips with Solnit’s The Faraway Nearby (2014), in which she writes about her mother’s Alzheimer’s experience, then proved instructive.
Phillips’ suggestion that “being lost may be the precondition for finding the object of desire” seems apt in considering ways in which creative practice research can unfold: I may have recognised in the questions raised by Solnit’s definitions of ‘lost’ the potential for a really interesting research project, but if I thought I also knew precisely, confidently, where I would go with it and what I should do to get there, I might not have been as attentive to the things that lostness otherwise serendipitously led me to. However, considering the same proposition with regard to the lived experience of dementia is problematic; for instance, it’s difficult to see in aspects of cognitive decline the possibility of lostness being a precondition for finding anything (that we can share an understanding of) if said removes the ability to remember what the ‘object of one's desire’ might be, and recognise it as such or retain it when one comes across it. For example, Solnit writes of her mother that
she wanted a lipstick; she often did in that era. I bought them regularly and they vanished regularly. We went to the plaza's drugstore, and I tried to show her some shades of pink. She didn't seem to see them even when I waved them under her eyes, so I handed the uncapped lipstick to her… I hoped she'd be able to see it if she held it… Now it's obvious that it didn't matter what shade I bought; the goal was to have lipstick because a lipstick signified something.131
The instant I read this it reminded me (and as such indicated just how important my own memory is in my research) of a story I’d read many years before about the Red Cross sending lipsticks to Bergen-Belsen:132
Women lay in bed with no sheets and no nightie but with scarlet red lips, you saw them wandering about with nothing but a blanket over their shoulders, but with scarlet red lips. I saw a woman dead on the post mortem table and clutched in her hand was a piece of lipstick. At last someone had done something to make them individuals again, they were someone, no longer merely the number tattooed on the arm… That lipstick started to give them back their humanity.133
The lipstick as object of desire. Desire as sense of purpose.
Solnit's mother's experience, like that of so many others living with dementia of various sorts, is one of cognitive ambiguity. Certain behaviours, such as urges to walk for no discernible reason, for example, are now better understood in terms of the person having a purpose, or some underlying sense of purpose – it's just that they can't always remember what it was.134 Phillips suggests that "as long as you have got a map, any map, you are no longer lost; as long as you have a certain kind of object of desire, you are no longer lost."135 But Solnit understood her mother as having a map:
“extending the boundaries of the self into unknown territory”140
Before leaving Phillips, in his essay he indirectly (as if almost accidentally) suggests that if we don't know something we're lost. Holub’s poem begins with a name (that of the person whose story about the scouting party the poet renarrates), and Phillips writes, “for those of us who don’t know [who Albert Szent-Györgi was] – and who therefore begin the poem a bit lost…”141 This neatly brings us back to lostness as not-knowing, or not-knowing as a condition of lostness. In Solnit’s definitions of lost, the familiar falling away and the unfamiliar appearing could be reworded as not knowing where and what things are (objects, faces, places etc), and also where and who one is in relation to such defamiliarisation. In The Faraway Nearby (2014), referring to her mother’s prosopagnosia, or ‘face-blindness’, she writes: “She was increasingly impaired, not in her eyesight but in her brain's ability to interpret what her eyes saw, an effect of Alzheimer's called ‘agnosia’, or not-knowing.”142
Agnosia is a term in current usage in two distinct disciplines: theology, and medicine. According to the OED, agnosia means ‘ignorance, lack of knowledge’,143 but it’s also possible to understand agnosia as ‘unknowing’.144 The prefix ‘un–’ before ‘knowing’ signals “negation, reversal, deprivation, or removal (as in untruth, undo).”145 Unlike the preceding definition of agnosia as an ignorance or lack (akin to Phillips’ positing that one can be considered lost when one doesn’t know something), unknowing seems more suggestive of an unravelling – a process of forgetting, or unlearning, prior knowledge. Although negative theology or theological apophatism is most often traced back to the 6th century writings of the pseudonymous Dionysius the Areopagite,146 the 20th century shift in Christian understanding of agnosia as unknowing also has origins in the aforementioned 14th century spiritual guidebook The Cloud of Unknowing, that was relatively obscure until its rediscovery and subsequent popularisation from the 1910s onwards.147 As related previously, this book propounds a contemplative practice requiring a ‘letting go’ of “all sensual images, all memories and thoughts [until] nothing lives in the working mind but a naked intent”148 – a ‘dis-ontological’149 process aimed towards being “neither oneself nor another”150 through agnosia or unknowing.
In the medical sciences there are several forms of ‘unknowing’: common examples include aphasia, apraxia, amnesia, prosopagnosia, and agnosia proper. Aphasia variously affects access to language; the facility to read, write, speak and/or understand spoken words. Apraxia refers to disorders of motor function (a disjunction of brain-to-muscle signals that can affect understanding of orientational directions such as ‘up’ and ‘down’, and undertaking coordinated physical movement, including speech). Amnesia is loss of memory; particularly in Alzheimer’s, short-term memory is commonly affected first with longer term-memories following as the condition advances. Prosopagnosia is the inability to recognise faces. And the medical sense of agnosia (attributed as originating in Freud’s 1891 Zur Auffassung der Aphasien) is: “Loss of the ability to recognize objects or to understand the significance of some or all sensory stimuli.”151
None of the above are specific to dementia. Aphasia can also be a common consequence of strokes, for example, and prosopagnosia can occur at any time in the lifecycle, as with the American artist Chuck Close who claims to have had face blindness since his youth.152 Even the escalating nature of neurodegeneration in dementia is not unique; with the progressive form of multiple sclerosis (MS), for example, symptoms include amnesia (and, though more rarely, aphasia, apraxia and agnosia), induced as a result of a person’s autoimmune system attacking their nervous system.153 Also, the incidence of each of the above symptom categories varies from one type of dementia to another, and within each type of dementia can occur to greater and lesser degree, and at differing rates of acceleration, from one person to another.154 However, the above symptom categories, in progressive form, do most commonly occur in dementia and can be considered as ‘unknowings’ in the sense that they are all orders of gradual losses of things known: loss of language, loss of memory, loss of the ability to recognise faces and other ordinarily familiar things – the lostness created in the familiar becoming unfamiliar, in becoming unknown.
The relevance of theological unknowing to the medical agnosias of cognitive decline – the link that can be drawn between them – is suggested by the ‘clouded thoughts’ people living with dementia describe. As previously discussed, the visual character of metaphoric allusions like these mean that the nature of symptoms are relevant to the arts, and thus connections can be made, across disciplines, from ‘unknowings’ in lived experiences of neuropathologies to theological and medical understandings of agnosias via creative practice.
reaction to the ordeal of depersonalization to which my grandmother was subjected as Alzheimer’s disease operated on her. I say “operated” because it seemed to me that my grandmother, or, at least, the new and ultimate version of her, was the work of the disease, its opus, its own sculpture. Indeed, this was not a diminished person in front of me… this was a stranger who didn’t recognize me, who didn’t recognize herself because she had undoubtedly never met her before. Behind the familiar halo of hair, the tone of her voice, the blue of her eyes: the absolutely incontestable presence of someone else.172
It‘s interesting that in the above quote Malabou speaks of presence rather than absence, even though it’s in the sense of the presence of another, unknown and unknowable, being. It also indicates that the lack of recognition goes both ways. As Christian-Claus Carbon explains:
We can literally say that we perceive what we know—if we have no prior knowledge of certain things we can even overlook important details in a pattern because we have no strong association with something meaningful. The intimate processing between sensory inputs and our semantic networks enables us to recognize familiar objects within a few milliseconds, even if they show the complexity of human faces173
– unless those faces are at once disorientingly unfamiliar and familiar? Do we, the fully cognisant, experience a kind of inverse prosopagnosia when faced with dementia? Unable or unwilling to see past surface appearance, as if we perceive a face but instead of reading into it (in the way we normally and continuously read meaning in photographs, films and all other familiar, everyday visual stimuli),174 we see… nothing?
If we lose all relation to childhood and the past the moment we are formed by destruction, what do we look like? [...] What do we look like once we are metamorphosized by destruction, once we are formed by destructive, explosive, nuclear plasticity? [...] You could say: “nothing,” but what does “looking like nothing” mean? People with Alzheimer's disease in oversized, borrowed hospital garb... do they look like nothing? No.175
“I have, so to speak, lost myself”155
Alzheimer’s Disease (AD) is named after German psychiatrist Dr Alois Alzheimer. In 1906 he discovered, in changes wrought in the brain of one of his patients, what was understood as the physiological cause of her disorder.156 Towards the end of her life this patient, Frau Auguste Deter, displayed a number of symptoms including memory loss and difficulty finding her way in familiar settings such as her own home. After her death, Alzheimer
examined her brain and found that it was considerably shrunken (atrophied). Under the microscope, two types of pathology were observed. In the first, bundles of fibres within neurons – neurofibrillary tangles – were evident. The second, found throughout the cortex, was sclerotic plaques. These are the two pathological hallmarks of Alzheimer's disease. We now know that plaques are made up of a protein called beta-amyloid, and the soluble form of this protein is seen by many to be the cause of Alzheimer's disease.157
Alzheimer’s is the most common form of dementia.158 This neurodegenerative condition is thought to affect particular areas of the brain, such as the parietal lobe and hippocampus, leading to progressive development of several agnosias. Disorientation – getting lost – is, with memory impairment, one of the earliest observable indications of the onset of Alzheimer’s (and some other types of dementia also).159 It purportedly involves a progressive loss of neurons and the synaptic connections between these, and a general decrease in brain mass160 while, in parallel, there is the above mentioned accumulation of amyloid plaques and neurofibrillary tangles. Studies have indicated that this pattern of cumulative damage may begin to occur in a “long asymptomatic latency period”161 of ten to twenty years before the advent of noticeable symptoms162 (although the presence of these plaques and tangles in the brain does not necessarily lead to cognitive decline).163
Unlike in other forms of harm to brain tissue, such as through traumatic head injury or stroke (albeit not systematically even in examples like these), in dementia the brain isn’t able to spontaneously harness the restorative potentiality of its own plasticity in response to the sustained, ongoing damage of lesions caused by neurodegeneration. Just as “beta-amyloid may be involved in the body's response to the disease”164 rather than its cause, there is the possibility that “compensatory mechanisms may... perhaps even become pathogenic,”165 meaning that neuroplasticity – which, broadly defined, is the nervous system’s ability to positively adapt by “reorganizing its structure, function and connections”166 – may also have a destructive effect.
In her work on negative or destructive plasticity, Catherine Malabou has reconsidered psychoanalytic theory and neuroscience in relation to varieties of trauma that interrupt identity, including dementia. As such, she is one of the few philosophers attempting to, as it were, tackle head on questions raised by radical transformations of cognition caused by accident and illness. In Malabou’s thinking, a new life comes into being through trauma – a life that’s unrecognisable “less because of a change in appearance than on account of a change in nature, a molting [sic] of the inner sculpture.”167 And, Malabou suggests, this being is, in the same instance, unrecognisable to themself also:
Something shows itself when there is damage, a cut, something to which normal, creative plasticity gives neither access nor body: the deserting of subjectivity, the distancing of the individual who becomes a stranger to herself, who no longer recognizes anyone, who no longer recognizes herself, who no longer remembers herself.168
At a stage in Alzheimer's, people do sometimes no longer recognise their own likenesses in mirrors:169 their own faces become unfamiliar; they unknow themselves. There could be said to be a kind of through-the-looking-glass170 effect, in which the physical façade becomes the glass darkly171 obscuring connection and comprehension, for both the person with dementia on one side and their entourage on the other. In The New Wounded: From Neurosis to Brain Damage (2012), Malabou provides an illustration of this effect. In a description of the personal origin of this book, she explains it as a
From a visual arts perspective, it could also be considered interesting that Malabou frames her questioning in terms of appearance, but she does so as if identity were something we ought to easily be able to see in the observed other (even when in anonymous clothing, such as hospital gowns). And, unfortunately, she immediately goes on to suggest that people with cognitive disorders “look like less than nothing”.176 How does this square with the earlier quote that began: “Something shows itself when there is damage...” ?177 What more is there to be lost once destructive plasticity has re- or de-formed identity beyond the point of normative recognition – what is the ‘some thing’ that then shows itself?
We no longer look like anything living, but nor do we look like anything inanimate. We must imagine something between the animate and the inanimate, something that is not animal but that has none of the inertia of stone either. The inanimal? A between, or an instance that in no way resembles any intermediary, one that explodes mediations, outside the soul, outside the organic. A mode of being that is not even the one the death drive pushes us towards, that inorganic state of passivity, the inertia of matter.178
Even people with unimpaired cognitive capacity can be unknowable: if we really could ‘read’ everyone perfectly from their appearances, acting would not exist as a profession, and it would be impossible for anyone to successfully lie. It’s also now known that animals can have forms of dementia too (though it’s called Cognitive Dysfunction Syndrome in veterinary practice).179 As they – they being cats, for example – begin to forget where things are (such as litter trays) and when they’ve been fed, can be observed wandering seemingly aimlessly and so on;180 do they, as Malabou suggests, also become ‘inanimal’? Or do we continue to see in them what they are (or what we want to see them as – our pets, our beloved companions), even when their behaviours change over time as their neurodegenerative conditions progress?
If the experience of the person with terminal illness is defined by the ever-present body, the epistemology of sight is trapped within a material dynamic that accesses subjectivity only through the visible aspects of that body. As long as the gaze sees as its object a diseased body but not the diseased person’s experience of embodiment, the look only perpetuates the dislocation experienced by the person with terminal illness.181
The book this quote is drawn from is, broadly speaking, about embodied grief in the face of corporeal absence – the ‘phantom limb’ effect182 of grieving for people no longer physically present in our lives because they have died. But Laura E. Tanner also discusses our responses to conditions that bring visibly perceptible physical changes, such as cancers and HIV/AIDS that lay waste in their end stages, and dementia, as a terminal condition that does ultimately become apparent, can also be included. What interests me here, however, is what might be happening when we’re faced, as in Malabou’s description of her grandmother, with a person who is unfamiliar not because they appear to be ill but because they are no longer what we can comfortably consider to be ‘themself’.
“and to be without a story…”183
Returning to Beckett here, one thing he and Malabou can be said to have in common is that, like her when faced with her grandmother’s Alzheimer’s, he too found his mother with Parkinson’s Disease unrecognisable. Where they may significantly differ in my view is that, while Malabou seems to have drawn back from the brink of thinking beyond appearance, Beckett was prepared to see in or through it, to the extent that he revised his prior thought in order to ”investigate not-knowing, not perceiving, the whole world of incompleteness.”184 And to do this I believe, based on the evidence of his work from Molloy onwards, that he chose to accept the possibility that neuropathologies require one to consider that human existence does continue, if otherwise, in radical disruptions to – and even in an absence of – narrative identity.
In ‘Against Narrative’ (2004), Galen Strawson argues quite vehemently against what can be described as dominant, ‘normative’ attitudes to ways of being that entirely centre understandings of identity in narrative, to the exclusion of divergent life experiences. Strawson defines this as being situated in
two popular claims. The first is a descriptive, empirical thesis about the nature of ordinary human experience: ‘each of us constructs and lives a “narrative” . . . this narrative is us, our identities’ (Oliver Sacks)... The second is a normative, ethical claim: we ought to live our lives narratively, or as a story… A person ‘creates his identity [only] by forming an autobiographical narrative – a story of his life’, and must be in possession of a full and ‘explicit narrative [of his life] to develop fully as a person’ (Marya Schechtman).185
Thus, as previously cited, the problematic assumption that “[w]hen selfhood is tethered to the ability to tell one’s life story, people with dementia may be seen to have ‘lost’ their ‘self’.”186 Approaches to explaining identity based solely on linear, narrative cohesion do not help towards understandings of discontinuous life experiences, including, or especially, those that lead from narratively coherent existences to ones interrupted by or ending in dementia and other traumas.
In addition to a Narrative/non-Narrative binary, Strawson forwards another; Diachronic/Episodic. Though he pairs Narrative with Diachronic and non-Narrative with Episodic with some caution, he posits that there are strong enough correlations between these to merit comparison. For Strawson, “a basic form of Diachronic self-experience [is one that] has relatively long-term diachronic continuity, something that persists over a long stretch of time, perhaps for life. I take it that many people… who are Diachronic are also Narrative in their outlook on life.”187 By contrast, people who are Episodic188 have less sense of such continuity and, as such, “are likely to have no particular tendency to see their life in Narrative terms.”189 Although Strawson’s challenge to the primacy of narrative and diachronic identity is of interest, what it suggests is that people who are either Narrative/Diachronic or non-Narrative/Episodic are more or less consistently that way throughout their lives. But here I would agree with Malabou in the sense that continuity of experience can be significantly disrupted by injury or illness.
In dementia, people living with conditions can be aware or feel degrees of loss of narrative or continuity of experience with former selves, regardless of whether they previously fit any of Strawson’s categories, and this awareness is expressed, as examples, in such statements as “The self is coming back sometimes, to what it was,”190 and “Sometimes I think I’m getting better but it doesn’t last – gone again.”191 This wavering between a familiar, former way of being and an unfamiliar other self, must seem disorienting. But an inability to fully and consistently access one’s former self due to episodic – in the sense of sporadic – and progressive dysnarrativia in dementia does not mean one is no longer a self. Thus, cognitive decline makes apparent the limitations of narrative as a basis for understanding selfhood. As Dan Zahavi states:
It is by no means obvious that Alzheimer’s disease brings about a destruction of the first-person perspective, a complete annihilation of the dimension of mineness and that any experience that remains is merely an anonymous and unowned experiential episode… [As] no one person with Alzheimer’s disease is exactly like another… there must be more to being a self than what is addressed by the narrative account. [...] Neuropathology reveals that core consciousness can remain intact even when extended consciousness is severely impaired or completely absent.192
Why is it important to consider divergent lived experiences as valid even if they are not narrative? A review of popular media containing references to dementia, spanning the period 1989-2018, found that descriptions included “‘death before death’, ‘funeral that never ends’, ‘social death’, ‘psychological death’, ‘already dead’, ‘death that leaves the body behind’, ‘vegetable’, ‘there is nobody there’, and ‘withered shells’.”193 The authors equate this ‘living dead’ view of dementia to a ‘hypercognitive’ Western view of it in which diminished – narrative – capabilities necessarily lead to loss of selfhood, in the sense that a person can be assumed to no longer be one if they lose access to their identifying, ongoing life story. In addition, it was found that a “reduction of… human rights in depictions of people with dementia included their right to life. This hermeneutical injustice was evident in standard texts on dementia. People with dementia were shown as being killed by their loved ones in an act of ‘beneficent euthanasia’ because they would be ‘better off dead’.”194
A 2018 article by Polly Toynbee is a ‘good’ example of the prevalence of this attitude. The opinion piece was primarily supposed to be an argument in favour of assisted death, but the example of a case in which she believed this would be justified was that of her former Observer columnist colleague Katherine Whitehorn, who was aged 90 at the time and living with advanced Alzheimer’s. Toynbee writes:
Her sons say without doubt that if the real Katharine could see herself now she would be horrified, never having wanted to end up as she is. Indeed, most people find the prospect of this ending a negation of self, denial of a life’s work and character, a mortifying indignity no one should suffer. Who wants to leave family and friends with a final memory of themselves as a vegetable, a distortion, an alien being? [...] But the greatest horror of all is Katharine Whitehorn’s fate, not dying, yet dead to all that makes life worth living.195
Bernard Lyall (one of Whitehorn’s sons) responded with a piece in which he said that, while his mother, pre-Alzheimer’s, would have agreed with Toynbee, she had since changed – that, as she was in 2018 (she died in 2021), she was ending her life not horrified but “usually, pretty content.”196 And though he was clear that his and his mother’s experience was not easy, he emphasised that what seemed to him of greater import was “not how to die with dementia, but how to live with it.”197
Toynbee’s article seems to assert that, in an existence that concludes with dementia, the dementia retroactively negates the experiences and achievements of the life preceding cognitive decline. And this attitude can be said to stem from the belief that “to be without a story is… to be lost in the vastness of a world that spreads out in all directions like arctic tundra or sea ice.”198
“But in the end there is something I can know and touch”199
We live in societies that prize cognition and coherence very highly. A condition like dementia, about which little is yet understood, can therefore seem particularly alarming – especially as there are no known ways to prevent, effectively treat or cure its various forms, despite decades of research. To suggest that it might render the people affected by it not just less than human but less than animal, when we know that dementia is not unique to the human mammal, implies a value judgement that places those of us not ‘afflicted’ with it not only above people who are but also other non-human life forms, and also tends to infer that it is our – intact – cognitive faculties that are to be valued because they supposedly, solely make us who we are. While as a species we may collectively have depth and breadth of knowledge about a great many things, a clear understanding of what the individually lived experience of dementia is like is not yet one of them. In that respect, we could be said to be as lost (albeit differently) as those people living with the condition – that, after Phillps, ours is the lostness of not yet knowing.
Malabou’s neuropathologically centred concept of destructive plasticity and, at the other end of the spectrum, approaches to dementia that place emphasis in the self as relationally networked (as in Kitwood’s person-centred care) might, at first glance, seem incompatible. One thing they could be said to have in common is that they tend to consider cognitive decline in its end stages. In dementia, people experience gradual disruption to relationships, with their own bodies (in the sense of these not serving in the familiar ways they did prior to onset, such as through visual misperceptions), and with their connections to other people and the world around them.200 This multifarious process of becoming can, as Juliette Brown alternatively proposes, be reconsidered in terms of a “plasticity of identity”201 that may pave ways between otherwise seemingly incompatible neurobiological and social standpoints on what dementia is or might be, and who we are in relation to it. If we can accept – and this is a hypothesis of the present research – that it’s in the processes of unknowing that the essence of things may more easily be perceived, it must be worth attending to dementia in that, even ‘postlanguage’, it may reveal what it means to navigate life beyond reliance on fictions of narrative identity.202 Radical disruption to cognitive function should lead us to ask who we become when thus lost – embracing an understanding of ‘who’ that includes cognitive ambiguity as a part of our human condition – and ask this further than what we might just look like.