The title for this project stems in part from two English books and the unusual connection I drew between them, though some six hundred years separate their publications.
Wendy Mitchell’s assisted memoir, Somebody I Used to Know,57 is an account of her life with dementia. It was published in February 2018 and covers a three to four year period of her life, from a then recent past back to the months running up to her young-onset Alzheimer’s diagnosis, in 2014, when she was aged just 58. As her Alzheimer’s progresses, she describes her experience of occasional visual and auditory hallucinations, chronic short term memory loss, and reports a gradual reduction in the range of emotions she experiences (she says she can no longer feel anger, for example).58
The Cloud of Unknowing is the title of a spiritual guidebook. Written in the mid to late 14th century by an unnamed Christian mystic, it suggests a form of contemplation involving an emptying of the mind reminiscent of transcendental meditation – a consigning of knowledge, distractions and desires to what she or he also calls a ‘cloud of forgetting’:
It is the “night of the intellect” into which we are plunged when we attain to a state of consciousness which is above thought; enter on a plane of spiritual experience with which the intellect cannot deal. This is the “Divine Darkness”—the Cloud of Unknowing. [...] It is “a dark mist… which seemeth to be between thee and the light thou aspirest to.” This dimness and lostness of mind is a paradoxical proof of attainment.59
You may be wondering how this meditative practice can be of relevance to dementia, when the clouds of forgetting and unknowing described and the means of attaining them is a matter of conscious effort and choice, whereas in dementia the process of forgetting and unknowing is involuntary – is the result of disability rather than desire. And yet, in her memoir Mitchell describes her experience of Alzheimer’s in terms of ‘clouded thoughts’, and of fog, and blur.60 She also calls dementia an ’invisible disability’,61 but while it’s true that her clouded thoughts and her experience of them can’t be seen, when something can be described in such an imaged manner it becomes possible to imagine ways of depicting it. Clouds as metaphor have been particularly useful to me in my research, but this is just one example of the kinds of visual analogy people with dementia use to describe their experiences, and it’s thus that the nature of imperceptible symptoms becomes relevant to the visual arts.
With The Cloud of Unknowing, the connection to dementia is neither obvious nor direct. I should stress here that I’m not a religious person, and I’m not trying to suggest a religious practice could be a solution to any medical condition, cognitive or otherwise. The benefit in making connections between things that aren’t immediately clear, though, is that this can provide the means to consider a condition like dementia in an alternative way, enabling us to ‘see’ it in a different light – to perhaps consider it, however briefly, as more blessing than curse, for example – and I would argue that the visual arts are capable of effecting a similar shift in thinking. The Cloud of Unknowing also enabled alternative insight into various symptomatic agnosias experienced in dementia, which I was then able to consider as ‘unknowings’, and I discuss these in more detail in the chapter of this thesis with that title.
So it was in Mitchell's memoir that I first encountered ‘clouded thought’ as metaphor, and while researching further allusions to cloud – in dementia, both in the testimonies of other people living with it and in academic studies – I instead, by chance, discovered The Cloud of Unknowing. From there, I gradually learnt that the use of clouds as metaphor for states of mind is not just limited to mediaeval mysticism and 21st century experiences of dementia. Dehlia Hannah has suggested that, historically, clouds have been considered “the nemesis of philosophers – the enemy of reason.”62 As one example of this she cites Kant, in his Critique of Pure Reason (1781), likening a ‘land of truth’ to “an island… surrounded by a wide and stormy ocean… the native home of illusion, where many a fog bank… give the deceptive appearance of farther shores.”63 Hannah posits a long history of philosophers’ use of other visual analogies in their reasonings, but suggests in particular that “a clouded mind is the inward manifestation of bad weather for thinking.”64 Which is perhaps, in part, why cognitive decline is so difficult for thinking theories to approach.
In the sciences metaphor is also prevalent. In his 1543 publication De humanis corporis fabrica, Flemish anatomist Andreas Vesalius likened the surface structure of cerebral hemispheres to clouds as drawn by schoolboys.65 The history of medicine is peppered with similar analogies, and food eponyms are still common in descriptions of visible manifestations of diverse pathologies.66 Also, brains have been likened to cauliflowers due to their apparent structural similarity,67 and this vegetable has been considered in relation to cognition as well.68 In some of my work I have made use of this specific analogy, visually and in creative writing, and I discuss this in more detail in relevant chapters. But, returning to meteorological metaphors, throughout the five years of my studies I regularly searched for scientific papers referencing clouds and fog in relation to symptoms reported by people living with dementia, and by the end had found only two: one about cigarette smoke increasing the “fog of dementia”,69 the other about how biomarker research might “pierce the fog that surrounds these diseases.”70 In the former, fog is a metaphor for dementia, and in the latter it’s used to indicate the “still incomplete understanding”71 of Alzheimer’s and related conditions in the sciences: neither are concerned with symptoms experienced by the people such research aims to assist. Since the advent of the pandemic, however, there have been increasing numbers of papers about ‘brain fog’ arising from Covid-19 infections, and there are acknowledged similarities between this and the ‘clouded thoughts’ of dementia,72 but it’s clear from these publications that the metaphors patients use to describe their symptoms are not being considered other than in relation to Covid. Although Mark Schweda claims that in contemporary popular culture (citing cinema in particular) the metaphors deployed in visualisations of dementia are predominantly meteorological,73 these, and their usage by people living with dementia, have yet to penetrate the brume of biomedical research.
The use of metaphor in connection to the medical has not been without contention and Susan Sontag’s critique in relation to tuberculosis, cancer and HIV/AIDS has been one of the most influential. At the beginning of AIDS and its Metaphors (1989), however, she references a rereading of her preceding book, Illness as Metaphor (1978), which I believe merits quotation in full:
'Metaphor,' Aristotle wrote, 'consists in giving the thing a name that belongs to something else.' Saying a thing is or is like something-it-is-not is a mental operation as old as philosophy and poetry, and the spawning ground of most kinds of understanding, including scientific understanding, and expressiveness... Of course, one cannot think without metaphors. But that does not mean there aren't some metaphors we might well abstain from or try to retire. As, of course, all thinking is interpretation. But that does not mean it isn't sometimes correct to be against interpretation.74
Since Illness as Metaphor was first editioned, Sontag’s take on metaphor has been repeatedly challenged and the above defensive quotation suggests a tempering of her earlier, more critical stance.75 All the same, Sontag retained a “faith in the power of science to dispel the myths and metaphors of disease.”76 This does ignore the fact that the sciences also use metaphor as means of understanding and explaining medical conditions, as “medicine remains essentially a descriptive science,”77 and that its metaphors filter through to and can therefore also influence public discourse. Whatever Sontag’s position, she has been understood to have usefully recognised that “disease has a simultaneous and equally important social reality”78 – that ideas about medical conditions, often expressed metaphorically, can have real societal impact.
While I agree that not all metaphors (and, similarly, ways of critically considering them) are necessarily worthy of retention or reinforcement, there is a case to be made for their value, including attempts to displace negative ones by forwarding alternatives. Or just being patient; metaphors are not fixed and immutable, they evolve over time. As an example, Christopher J. Wernecke claims that a “metaphoric shift in American cancer rhetoric began in 2015”,79 moving away from the military analogies Sontag was familiar with towards more positive metaphors related to outer space and its exploration. Additionally, Tyler Tate argues that martially themed analogies in medicine are not necessarily negative in every instance of their usage. Asking, “What exactly makes a metaphor a good metaphor… [and] by what criterion should they be appraised?”80 she forwards the example of war veterans in palliative care for whom the language of past professional lives informs the metaphors used to describe present experiences of health conditions.81 Citing “the largest survey of patient’s metaphors to date… [t]he authors concluded that, based on their research, it is impossible to assess any individual violence metaphor without understanding its context and function… in the life of the patient.”82 For people such as Tate’s veterans, proscriptive limiting of familiar metaphors seems difficult to support. Generalised assertions like Sontag’s do not always neatly align with personal expression of individual lived experiences of illness, and it’s important to recognise and make allowance for this.
Metaphor is the means by which we conceive of and express things hard to otherwise explain. According to Andrew Ortony, metaphors assist communication in three key ways: in their economy, their accessibility, and their eloquence.84 They “allow for a more succinct and efficient use of language,” they facilitate “expression of inner states that are difficult or impossible to describe,” and they can convey “the richness and vividness of experience that is not captured by the use of literal language.”85 Metaphor thus has cognitive and cultural value, and its role in the creation of meaning is central to the way we understand the world, each other, and ourselves. As the metaphoric helps to make relatable things we may be personally unfamiliar with, such as aspects of other people’s lived experiences, it can obliquely provide points of entry to empathy and understanding. Metaphors can also create fresh perspectives that permit us to reconsider our ideas about things in new ways;86 as such, they may be reimagined and reshaped, visually, poetically, conceptually, and scientifically. An advantage of the metaphoric is that it’s accessible to people in every area of public and professional life at almost all ages, and this is also true for people living with dementia (at least it is before they reach what’s called the ‘postlanguage’ stage of conditions). Another advantage is that metaphors often evoke imagery, which is why I’ve found them so useful in both my visual work and creative writing. Paying close attention to what people living with dementia have to say about their experiences has been humbling and enlightening, and this strategy has greatly enriched my research.
Although references to clouds appear in other cultural approaches to dementia, such as in cinema, it’s in the work of two authors that I found the most relevant references. Both used these as metaphor in writings that, I will argue, are expressive of neurodegenerative conditions from outside and/or within their experiences of them, and these artists are Samuel Beckett and Shirley Kaufmann.
"Like driving on a bright day right into a thick cloud.”83
As outlined in the introduction, during my studies I produced three main projects: the first two were purely visual installations but the third and final one consists of a series of interrelated artists’ books that combine creative writing and imagery. With these books, one of my main research strategies has involved drawing on metaphors used by people living with dementia, such as the aforementioned ‘clouded thoughts’, to then visualise their experiences. Even though access to language typically diminishes as their conditions progress (depending on the type, or combined types, of dementia they have, such as vascular and Alzheimer’s), people can be very inventive in their use of language because they have to be, and (up to a point) can still make use of vocabulary to suggest what aspects of their symptoms are like. In addition to clouds, examples of other metaphoric allusions encountered in the course of research include (but are not limited to): faulty fairy lights; tangled necklaces, knitting and undergrowth; trees, forests and other landscape features (sand, mud, roads, sinkholes, mountains, skies, seas); books and libraries; maps and machines.
…but the clouds…
There has to be one, it seems, once there is speech, no need of a story, a story is not compulsory, just a life, that’s the mistake I made, one of the mistakes, to have wanted a story for myself, whereas life alone is enough.
Samuel Beckett87
In the post-war 1940s, Beckett returned to Dublin to see his mother and found her living with Parkinson’s Disease: “Her face was a mask, completely unrecognizable. Looking at her, I had the sudden realization that all the work I’d done before was on the wrong track. [...] What I had to do was investigate not-knowing, not perceiving, the whole world of incompleteness.”88 Given his description here, his mother may have been in an advanced stage of Parkinson’s Disease Dementia (PDD), though knowledge of the link between Parkinson’s Disease and the dementia it can cause wasn’t as clearly understood then as it is now, and also there was such stigma attached to dementia at the time that people generally tended to avoid naming it openly.89 But Beckett clearly recognised something in her state, and his subsequent work was arguably strongly influenced by this. He went on to say that it was in his mother’s house90 that he’d begun, with Molloy – the opening line of which is “I am in my mother’s room” – the Three Novels trilogy (1958), comprising Molloy, Malone Dies, and The Unnameable.91
Tausif Noor argues convincingly that the stripping back of language that began in the above works might be seen to reveal what he forwards as Beckett’s literary search for ‘residua’ or “the ‘something’” – or nothing – “that lies behind subjectivity.”92 In the quote that opens this subchapter, I understand the ‘one’ Beckett mentions to be the ‘self’, and he seems here to be saying that speech renders this self unavoidable. Paraphrasing Dionysius the Areopagite, “If being and intelligibility coincide when we speak we are necessarily in the realm of being,”93 but what Beckett suggests is that intelligibility is irrelevant – one speaks, therefore one is94 – and the speaking self is not necessarily one that has a coherent narrative.
As well as lacking narrative identity, in several of the later works Beckett wrote for performance characters are sometimes almost completely disembodied as well. This means of ‘stripping back’ is a visual approach to “the whole world of incompleteness” Beckett sought to address, fragmenting characters in ways that make them less familiar to an audience – less easily recognisable as whole beings. In the play for television …but the clouds… (1977),95 for example, all that can be seen of the anonymous female ‘character’ is a tight close up of her lips and unseeing, unblinking eyes fading in and out of view, and when she ‘speaks’, or rather mimes speech, it’s someone else’s voice that’s heard:
38. w[oman]'s lips move, uttering inaudibly: '. . . clouds . . . but the clouds . . . of the sky . . .', v[oice] murmuring, synchronous with lips: '. . . but the clouds . . .' Lips cease.96
As another relevant example, in the short play for theatre Not I (1972) only the female character’s mouth can be seen. In the following extract clouds are again referenced, and also insentience and the brain:
and she found herself in the– . . . what?. . . who?. . .no!. . .she!. . . [. . .] . . .found herself in the dark . . . and if not exactly . . . insentient . . . insentient . . . for she could still hear the buzzing . . . so called . . . in the ears . . . and a ray of light came and went . . . came and went . . . such as the moon might cast. . . drifting. . . in and out of cloud . . . but so dulled . . . feeling . . . feeling so dulled . . . she did not know. . . what position she was in . . . imagine! . . what position she was in! . . whether standing . . . or sitting . . . but the brain– . . . what?. . . whether standing . . . or sitting . . . or kneeling . . . or lying . . . but the brain still . . . still . . . in a way . . .97
Having not seen this production in person, I consulted a recording of the 1973 televised version with actor Billie Whitelaw as the character ‘Mouth’.98 When rebroadcast on BBC Two in 1990, as part of a season called ‘A Wake for Sam’, the work was described as a “monologue of fragments from the life of a 70-year-old woman,”99 which at the very least supports an interpretation of the character as representing an age-related, discontinuous experience of some unidentified type. What immediately struck me as I watched, however, was that, visually, the back of the mouth is as black as the area surrounding the lips, which (with teeth and tongue) then appear to flutter autonomously in a void – that though we know they belong to a person, the actor’s physical presence around and behind the speaking mouth lacks substance. And as ‘Mouth’ refers to herself as ‘she’ throughout – one has to be aware of self to be an ‘I’100 – the titular ‘not I’ of the work suggests a diminished or disjointed self, the absence of a self-recognisable self behind unmoored lips adrift in the dark, even as they speak, if haltingly, of a life. The meaning or intention of this play (as with much of Beckett’s work) has been the subject of varied speculation. And I have to acknowledge that my own take on it here is very much coloured by my research interest in cognitive decline. But the “drifting in and out of cloud” in this – for me – key extract, holds a further example of cloud as metaphor for states of mental confusion, and the direct reference to insentience and “the brain still . . . still . . . in a way . . .” – as in, almost but not quite active, but not fully at rest either – strongly suggests a character in a liminal state, between being and not, or being-non-being.
Beckett is known to have been interested in aphasia101 and other forms of neurological dysfunction102 throughout much of his career, but the influence on his work of his mother’s Parkinson’s Disease seems not to have been as widely acknowledged. And though he is also known to have had stroke induced aphasia towards the end of his life, it seems to have been almost an unspoken taboo to suggest he may also have had any form of neuropathology (such as a dementia of the vascular type, for example, that can follow a stroke or strokes).103 And yet, to Lawrence Shainberg he said, “it’s a paradox… but with old age, the more the possibilities diminish, the better chance you have. With diminished concentration, loss of memory, obscured intelligence – what you, I suspect, would call ‘brain damage’ – the more chance there is for saying something closest to what one is.”104 At the time of this conversation in 1981,105 during which he also said “Now – my memory’s gone. All the old fluency has disappeared,”106 Beckett was 74 and rehearsing a version of his play Endgame (1957) in London. Despite the diminution of ability acknowledged in his above quotes, he continued working and his last two texts – prose piece Stirrings Still and poem Comment Dire – were finished, in that order, around 1988, roughly a year before his death. In her discussion of Comment Dire, Laura Salisbury quotes American author Ruby Cohn: “I asked Beckett to translate the poem [into English from French], but he could not recall having written it”107 – and then states that “it seems significant that neither critics at the time, nor those since, have read or registered this final work as the expression of a disabled author.”108
I first noticed the aphasic quality of Comment Dire in 2019, during a research placement at the British Library,109 a direct result of which was the surprise realisation that Beckett would be an important artist to consider in my research. The discovery of American poet Shirley Kaufmann also came entirely by chance, while searching online for something else entirely, in September 2021. Kaufmann died of Alzheimer’s in 2016, aged 93. She continued writing beyond her diagnosis and Ezekial’s Wheels, the final collection of her work published in her lifetime, was issued in 2009, seven years before her death. Along with the poems in it that can be read as expressions of her experience of dementia, there are also ones that concern other age-related health concerns, love, desire, politics, and more.
Many of Kaufman’s poems in this late collection speak of lostness and loss, however. In the poem actually entitled ‘Lost’, for example, which hints at blanks in memory, she writes:
The sky is empty most of the time.
What we can't pray to isn't there.
What happened yesterday is lost
and will be lost tomorrow.
Forgetting repeats itself110
Like Beckett, Kaufman also references clouds in her writings, often in relation to ‘vagueness’.111 For example:
Your face trembles
out of a cloud
[…]
your lips swim into focus
smiling
[…]
suddenly
one of us is gone112
Though perhaps coincidental, the perception of facial features as insubstantial and disjointed here suggests an almost Beckettian disembodiment. Something comparable also occurs in the poem ‘Bench’: “The world is / too much not with me. I’m / only two eyes with no head / watching no presence no / writing in the sky.”113 And another similarity I see between certain poems in this collection and some of Beckett’s works can be found in the following poem extract.
For dominant discourses around the importance of narrative to identity, the implications of this could be said to be immense, particularly in respect to people whose ongoing selves become disrupted by neuropathologies, as they call into question assertions such as: “When selfhood is tethered to the ability to tell one’s life story, people with dementia may be seen to have ‘lost’ their ‘self’.”120 Although the theatre of the absurd, as one that actively resists conventional character, language, plot and staging121 – a theatre that Martin Esslin qualified as ‘demented’122 – can thus be considered an ideal forum for Beckett to “investigate not-knowing, not perceiving, the whole world of incompleteness,”123 there seems to have been resistance to interpreting his contribution to it in this way and, further, to acknowledging his late works as those of an author with disability, as Salisbury forwards. But Beckett’s expressions of discontinuous life experiences challenge claims, like Jerome Bruner’s, that “if we lacked the capacity to make stories about ourselves, there would be no such thing as selfhood,”124 and I further discuss the debate for and against narrative as a measure of identity, in particular relation to dementia, in the chapter of this thesis on unknowing.
My brief analysis here is not intended as a claim to Beckett’s work being largely or only understandable in relation to his mother’s and his own eventual medical conditions; that it’s purely autobiographical. I’m a photographer, not a literary scholar, and my discussion of Beckett is not intended as a direct contribution to the vast field of Beckett studies either. But for the purpose of this doctoral project it has been immensely useful for me to view in some of his works – as fiction based in keen observation, analysis, research, and openness to the ordinarily unthinkable – means to reconsider cognitive decline, and ways of expressing aspects of this, from a different perspective. Kaufmann’s poetic style, and the stripping or paring back of language125 that served Beckett in much of his work, are not things I’ve consciously tried to emulate in my own writings. But as two published, professional authors working, as I’ve suggested, from outside and within the experience of cognitive decline, parallel readings of Beckett and Kaufmann have helped bridge some of the gap between their literary works and the expressions of other people living with dementia encountered in the course of research. This has in turn influenced some of my own creative writing for this project, and I discuss my approaches to producing these texts in more detail in the sections of this thesis dedicated to relevant research outcomes.
If everyone’s lost on the roads,
you might as well fly. You might even
enjoy what’s left of your life
in a state of amazement. I meant
to say “acceptance”. My slips are the best
part. The part that’s true.114
The ‘truth’ in slippages of aphasia alluded to here, though an accidental aspect of her condition rather than from an active professional interest such as Beckett’s, suggest that, like him, she may have come to some understanding about how, with what Beckett called ‘brain damage’, “the more chance there is for saying something closest to what one is.” As Craig Dworkin states: “Erasures obliterate, but they also reveal; omissions within a system permit other elements to appear all the more clearly”115 – that it’s at the point of breakdown that the essence of things may be perceived and, in Beckett’s sense, alluded to, however partially. This connects with what Beckett said about the ‘not-knowing, not perceiving, the whole world of incompleteness’ he saw in his mother’s Parkinson’s that then influenced his post-WWII work, and with his own later experience of ageing and illness bringing him closer to being able to say ‘what one is’.
In her analysis of Beckett’s Comment Dire, Salisbury suggests that ”...it is precisely the aphasic mode of writing that explores the possibility that a dissolution of a sense of coherent subjectivity can nevertheless sit alongside having ‘just enough brain’ to experience its disappearance as such.”116 She reinforces this notion with a well-known quote from Beckett’s earlier work Molloy:
To be literally incapable of motion at last, that must be something! My mind swoons when I think of it. And mute into the bargain! And perhaps as deaf as a post! And who knows blind as a bat! And as likely as not your memory a blank! And just enough brain intact to allow you to exult!117
Also in the course of my research I discovered, in a collection of assisted dementia poetry,118 the standout line “Can’t think. But I am.”119 The dilemma of this is that the person who spoke these words was able to do so while feeling unable to think – which, in the Beckettian sense discussed previously, means they ‘speak therefore they are’; that one may be aware (however vaguely) of a lack of ability and be able to say so, even beyond the point when one’s cognitive impairment ought logically to impede such awareness and expression. Researching Beckett’s work greatly assisted with reaching a better understanding of this enigma, in the sense that, as Salisbury suggests, it then becomes possible to consider modes of existence beyond cohesive narrative.