Echo and the Failure of Knowing in Judith Fox’s Photographic Project I Still Do: Loving and Living with Alzheimer’s
In relationships ‘I’ and ‘you’ become ‘we’; despite individual differences, couples obtain an interdependent identity due to their shared interactions. During a serious illness, biological and biographical disruptions can put any reciprocal relationship under strain. Through intermedial analysis of Judith Fox’s photographic project, I Still Do: Loving and Living with Alzheimer’s (2009), I will explore ways the couple make sense of illness, how illness is communicated through text and image and also to identify the limits of representation. Here the photographs, I argue, solidify their relationship and echo the stuck-in-the-present state of mind brought on by Alzheimer’s.
KeywordsAlzheimer’s Photographic essay Visual illness narrative Couple Relationship
In relationships ‘I’ and ‘you’ become ‘we’; despite individual differences, couples obtain an interdependent identity due to their shared interactions. In a paper ‘Experiences of Sexuality and Intimacy in Terminal Illness: a Phenomenological Study,’ Bridget Taylor argues that ‘When someone is living with a life-limiting illness, their coupled relationship is also dying’ (2014, 438). The constant trial of living, despite biological and biographical disruptions, puts any reciprocal relationship under strain. Couples often must adjust their attitudes and actions to maintain a sense of intimacy. A future planned together, the expectations and predictability of the relationship, are called into question.
In this paper, I will analyse American photographer Judith Fox’s project, I Still Do: Loving and Living with Alzheimer’s (2009), which depicts the devastation of Alzheimer’s that struck the artist’s husband, Dr. Edmund Ackell (addressed as Ed in the project). Through intermedial analysis, I will aim to investigate what kind of knowledge is contained within this photographic project, how the photographs and the accompanying text construct experiences and articulate private expressions of illness and what are the limitations of these representations. My intention and focus are on identifying and illuminating the intimate space that opens between the photographer, the photographed person and the viewer as well as the dynamics of collaboration between those involved in the photographic act.
Sequential photographs, which are not necessarily represented in linear order, connect relational, imaginative, sensual and emotional elements and experiences. Photographs are ‘structured and structuring spaces’ (Bell 2002, 9) within which the photographer, the photographed subject and the viewer can engage with each other and through this process create new meanings. This method of communication is multi-sensory and less limited than traditional verbal communication, which is often difficult or impossible for people with neurodegenerative conditions, such as dementia and Alzheimer’s. Although, the photographic essay, I Still Do: Loving and Living with Alzheimer’s is mediated by Fox who collaborated with her husband, her skills as a photographers are used ‘in the service of conferring on the sufferer a dignity’ (Radley 2002, 16). Fox not only expresses her own grief and suffering at and by seeing the suffering but also performs a function of speaking for her husband who cannot do so because his authorial voice is too weak, fragmented and incoherent (Hydén 2008). The photographic act that makes an image possible reverberates amongst those who took part in it and those who view and read these works, long after that act took place.
I still do
I Still Do: Loving and Living with Alzheimer’s, which was published in book format in 2009, is a photo essay by American entrepreneur turned professional photographer Judith Fox. Her husband, who was a surgeon and a president emeritus of Virginia Commonwealth University, was diagnosed three years after their wedding in 1998. Fox’s and Edmund’s planned togetherness, their future-directed life, was interrupted by a devastating illness which has no cure. The idea to create a photographic record and publication of the experience grew out of protest against misinformation, stigma and shame, and ‘to clear the cloud of fear and whispers’ that surrounds Alzheimer’s disease (Fox 2009, 124).
The photographic essay consists of forty-seven colour stills and forty-two pages with short texts written by Fox that accompany the photographs. She started taking photographs of Edmund three years after his diagnoses in 2001 and finished in 2009, when due to severe visual agnosia he could no longer see the images and her continued photographic practice of him ‘would be compromising his dignity’ (Fox 2010). This statement shows Fox’s commitment to sustain a constructive verbal and visual dialogue between them. When Edmund is no longer able to actively participate in this exchange and creative collaboration, she ends the photographic project.
Fox describes her and her husband’s mutual agreement to record their experiences. Toward the middle of the book, she writes: ‘I told Ed that some of the photographs I took of him saw straight through to his soul and asked if he minded being that exposed. He said “No. You can show my soul; just don’t show my penis”’ (65). Fox complies with this agreement and does not break their mutual trust. In I Still Do, conversations, exchange of gazes, and moments of togetherness between Fox and her husband are externalised and become the basis of continuous dialogue between viewers and the participants of the photographic act. As the story unfolds, it discloses a cluster of emotions and themes such as connection, fusion, disconnection, fear arising from the possibility of losing the other, separation and tension. The relationship here is not static and stable but rather a dynamic experience, interaction and exchange that occurs between individuals. Photography provides an intimate space that can be accessed not only through the visual and therefore graspable but more importantly through tactile and auditory senses in which the relationship can be played out.
The stigma of ageing
In I Still Do, Fox not only raises awareness of Alzheimer’s but also creates a counter-narrative to existing stereotypes of ageing, mature love and eroticism. Jeff Hearn in Imaging the Aging of Men states that ‘[o]lder men are constructed as pre-death. They are relatively redundant, even invisible’ (1995, 113). In America’s youth-oriented culture, which despises dependence and decay, the elderly are mostly visible only in daunting numbers of statistics (Kashi 2005, 195). News stories often identify and comment, directly or indirectly, on the person’s age; older people who have remained active, are involved in community and have preserved their youthfulness, are commonly praised, whereas those who ‘are seen to have failed’ because of illness, accident or whose body function and structure have been impaired often evoke ‘pity, fear, disgust, condescension, and neglect’ (Featherstone and Hepworth 1995, 29-30). Hearn illustrates several recurring genres in which ageing men appear in media. Politicians, businessmen, experts and broadcasting personalities are often depicted as ageless, ‘asexual, agendered’ individuals whose power and authority are not affected by ageing (1995, 108). Another scenario which encompasses ageing men is a ‘moving on’ narrative or what Hearn calls ‘the theme of the “aging king”’ (109). Typically, these are successful sportsmen or musicians who are approaching retirement; the change in their occupational status does not involve a change in their status. These mass-produced stereotypes show a lack of concern for the problems and ‘realities’ of ageing. Age in these scenarios is constructed as ‘a maker of power, or as a reference point of power, even when power is lacking’ (Hearn 1995, 102). Positive ageing, for Mike Hepworth ‘should be an ironic acceptance of the natural ending of one’s life’ (1995, 190) and therefore a critical response to society ‘which disregards the inevitable physical decline of an ageing body’ (Fairhurst 2012, 192). As I will illustrate, in I Still Do, Fox reveals her husband’s ageing body, however, without romanticising Edmund’s illness. The photographs also depict beauty and communicate an acceptance of Edmund’s inevitable demise.
The presence (the dynamics) of this blind field is, I believe, what distinguishes the erotic photograph from the pornographic photograph. […] The erotic photograph, on the contrary (and this is its very condition), does not make the sexual organs into a central object; it may very well not show them at all; it takes the spectator outside its frame, and it is there that I animate this photograph and that it animates me. (2000, 57-59)
Barthes finds the punctum of the photograph in this ‘subtle beyond’ (59) the visible frame, in the space which belongs to no one. Although this image depicts intimacy between Fox and her husband, the viewers of the photograph are also invited to remake and absorb this experience, otherwise ‘without the gesture of loving, any communicative gesture is an error. Or, as it should have been called earlier, sin’ (Flusser 2014, 54).
In between two deaths
Alzheimer’s, classified under an umbrella term of neurodegenerative disorders that covers a range of conditions and indicates loss of functions and structure of the neurons in the brain, destroys memories, changes habits and ‘leads to a reduced capacity for self-care and self-direction’ (Woods 1989, 7). As the disease progresses, so does identity become more and more interrupted. David B. Morris in Illness and Culture in the Postmodern Age writes: ‘Alzheimer’s disease erodes the self […], the focus of damage is less the body than the person’ (1998, 57). If personhood is understood in terms of a continuation of oneself across past, present and future—as an ‘autobiographical self’ (Damasio 2000; Ricœur 1992), then the language breakdown, loss of memory and inability to project oneself into the future that are associated with Alzheimer’s also mark ‘the death of the self’ (Eakin 1999, 46). As the neuroscientist Antonio Damasio claims: ‘Without […] autobiographical memories we would have no sense of past or future, there would be no historical continuity to our persons’ (2000, 218). Lisa Diedrich refers to existence between the demise of the self through Alzheimer’s and the loss of biological life as a space ‘between two deaths’ (2007, 116). However, the process of the undoing of the self that is associated with Alzheimer’s is also marked with finding new ways of communicating. Mark Freeman in the essay, ‘Beyond Narrative: Dementia’s Tragic Promise,’ questions and challenges narrative as a foundational concept for understanding the self. ‘It is quite possible that by moving beyond narrative, beyond the confines of storylines,’ he writes, one could potentially ‘experience something like liberation’ (2008, 175). In his account of his mother’s experience living with dementia, Freeman notes that there are moments when his mother finds enjoyment such as listening to music or being with other people. Damasio describes this in relation to ‘core self’: ‘You rise above the sea level of knowing, transiently but incessantly, as a felt core self, renewed again and again, thanks to anything that comes from outside the brain into its sensory machinery’ (2000, 172 [original emphasis]). The notion of the self which is ‘renewed again and again’ through the engagement with ‘the Other-than self’ (Freeman 2008, 180) is of importance in the analysis of I Still Do project.
The word still appears in the title and echoes on several pages within the book: ‘In the midst of a devastating disease, there are still lovely moments, laughs, hands held and bodies touched’ (77 [emphasis added]); ‘we have quiet, generally uncomplicated conversations; and we tell each other “I still do…”’ (79 [emphasis added]); ‘Ed still lives at home and I’m still his evening caregiver’ (125 [emphasis added]), and ‘Ed, I still do…and I always will’ (123 [emphasis added]). To ‘be still’ means to be motionless, silent, constant, free from commotion, settled; as an adverb it signifies a now-as-before temporality (OED). ‘Still’ here signifies a refusal to collapse and let go, despite facing challenges and severe perplexity.
Who thought up the innocent-sounding euphemism ‘sun-downing’ to describe the anxious and erratic early-evening behaviour? Let's be honest, here. How about ‘howling at the moon’? How about ‘clawing at the walls’? How about the ‘twilight zone’? ‘Sun-downing’? Please. (93)
Fox addresses the lack and inappropriateness of existing language to narrate the illness experience. Medical language is either incomprehensible to non-medical people, or, as it does here, it shows a deliberate intention to lessen and devalue the anguish and distress that confusion and restlessness that are symptoms of Alzheimer’s. Instead, Fox aims to find new ways of expressing and communicating the horrors, fears, uncertainties and love that are intermingled in their relationship. The narrative and the ritual of photographic act that provide a sense of control help Fox to distance herself from the anguish and fears. For the viewers, as Arthur Frank claims: ‘the story holds us, making it safe enough - not entirely safe but compelling—to follow where it leads’ (2008, 123).
Our mode of communication seems like underwater sonar, each bouncing pulsations off the other, and listening for an echo. The baffling at which I cannot understand what Iris is saying, or about whom or what—moments that can produce in Iris tears and anxieties […] can sometimes be dispelled by embarking on a joke parody of hopelessness, and trying to make it mutual. Both of us at a loss for words. (1998, 44)
The night is not an object in front of me; rather, it envelopes me, it penetrates me through all of my senses, it suffocates my memories, and it all but effaces my personal identity. I am no longer withdrawn into my observation post in order to see the profiles of objects flowing by in the distance. The night is without profiles, it itself touches me and its unity is the mystical unity of the mana. Even cries, or a distant light, only populate it vaguely; it becomes entirely animated; it is a pure depth without planes, without surfaces, and without any distance from it to me. (296 [original emphasis])
Merleau-Ponty is not referring to blindness or the impossibility of seeing but rather to darkness that ‘envelopes me.’ His account of this experience at night helps to identify a confrontation with things, objects and places that are unconditioned by any meaning, when nothing makes sense any more. ‘Sometimes,’ he writes, ‘however, the lived distance is at once too short and too wide: the majority of events cease to count for me, whereas the nearest ones consume me. They envelope me like the night, and they rob me of individuality and freedom’ (299). However, the night for Merleau-Ponty is not the most disconcerting experience of the unreal, as one can still ‘hold onto the structures of the day’ (296). For Edmund, these structures are also failing and when he can no longer make sense of things, it is the other, in this case Fox, who helps to find ways to rebuild them.
Failure of knowing
In between the text, images and exchange of gazes, there are tensions, anxieties and secrecies. ‘I know what’s going on in his head. He expresses his feelings when he’s awake and he talks in his sleep at night. When he’s in a room by himself he speaks his thoughts out loud. There are no secrets’ (Fox 2009, 84). However, Fox can only express and tell the experience from her point of view. At the same time, she also conceals her knowledge from Edmund: ‘I didn’t tell Ed how sick he was because he didn’t want to know. And I’ll continue to follow his lead. I’ll try not to tell him more than he wants to know. Or less’ (118). Knowing itself is thrown into question here.
Taking care of someone can significantly limit one’s social life and employment status. However, the act of care affects not only those who provide care but also those who receive it. Care can deprive the other of self-sufficiency and agency. Through the photographic act—taking a picture, capturing ‘the soul of the man’ she still loves, exposing it, processing it and fixing it, Fox defies loss. Fox shows Edmund living, laughing, talking, holding her hand, reading a newspaper. She also shows what it was like to live in touch with him. Edmund’s poses and presence in the photographic frame communicate agency; as Wilson writes: ‘Capturing intimacy without exposure, the image holds the body’s agency and capacity’ (2012, 3). In a photographic image, Fox allows Edmund to articulate his agency, whilst her agency as a photographer is expressed through her decision to publish this project.
Sometimes Ed doesn’t remember that we’re married.
Which is something I can deal with. He never forgets that he loves me and that I love him.
Which is preferable to remembering that we’re married and forgetting that we love each other. (121)
Julian Barnes in his part philosophical essay, fictionalised history and part biography on love and the loss of his wife to cancer, Levels of Life, writes: ‘You put together two people who have not been put together before; and sometimes the world is changed, sometimes not. They may crash and burn, or burn and crash. But sometimes, something new is made, and then the world is changed’ (2014, 31). Barnes points to interactions between partners as dynamic rather than fixed. The interdependent identity of couples is subject to growth, changes, alterations and adjustments. At the same time ‘[e]very love story is a potential grief story. If not at first, then later. If not for one, then for the other. Sometimes for both’ (2014, 36-37). In I Still Do, photography performs a several functions—to crystallise the trace of loss, to extend the moments of togetherness and also to provide support to those left behind after the death of the other. The photographic act in this project, I argue, gestures love and care towards the other, and the photographic image solidifies this gesture. The photographs and the accompanying text attempts to build a dialogue, gesture love and explore the echo in between the relation with the other. Photography, whilst also pointing to something that is left outside the frame, provides a space where the relationship between Fox and her husband can be played out; it provides an opportunity for intimacy. Relationships amongst partners can be fragile and vulnerable, and vulnerability is intrinsically linked to intimacy. Vulnerability is present on both sides of the camera; the experiences of the other is a reflection of one’s own potential finitude. The loss of the other, or the loss of something within the other, results in exposure of oneself, characterised by a wide range of emotions, such as grief, guilt, anger and fear.
The photographic essay deals with illness and love, which are considered as private expressions. However, photography transfers the personal into the public, therefore seeking new forms of collective outcome. As Ariella Azoulay claims: ‘a photograph produced in the course of an encounter between photographer and photographed is created and inspired by a relation to an external eye, the eye of the spectator’ (2008, 129). Viewed through the lens of public activism, the photographic essay creates a counter-statement of visual stigma and expand the understanding of lived experience. I Still Do shows how connecting and disconnecting in close relationship are affected by the disembodied experience and suffering from brain disorder such as Alzheimer’s. By mimicking the symptoms associated with Alzheimer’s, the project challenges the concept of a narrative self. It breaks the silence and stigma that surrounds Alzheimer’s and reconstructs the voice of Edmund whose social interaction has been affected by disease.
In the experience of dialogue, a common ground is constituted between me and another; my thought and his form a single fabric, my words and those of my interlocutor are called forth by the state of the discussion and are inserted into a shared operation of which neither of us is the creator. […] Our perspectives slip into each other, we coexist through a single world. (2012, 370)
Photographic essays, as I have illustrated in this paper, create time and space between individual images as well as between text and image. These spaces that open up between the images and text as well as between the photographer, their sitter and the viewer of these works are critical in connecting different agencies and engaging with an open-ended dialogue.
1 I define the term ‘couple’ here as two people whose views and interpretations are shaped and constructed ‘as they interact with each other; as they share time, space, and life experience; and as they talk with each other and dialogue about these experiences’ (Patterson and Garwick 1994, 1-2).
2 Lars-Christer Hydén differentiates voice into the sounding voice and the authorial voice. The former describes sound quality and timbre that is unique to every individual and the latter is a process expressing personal experiences and feelings through words (2008, 38-40).
3 I Still Do was named ‘one of the best photography books of 2009’ by Photo-Eye Magazine. The project was also presented as a touring exhibition around Europe and the States. Fox has also given several interviews on TV and radio, and presented her work at several international conferences. She is an outspoken advocate for Alzheimer’s awareness.
4 The photographs in I Still Do are digital C Type prints, made from a digital file instead of a negative. The images are exposed using digital technology and developed and processed using analogue techniques.
5 Edmund died at his home in La Jolla, California, in 2014 (Robertson 2014).
6 The Administration for Community Living, which is part of the U.S. Department of Health and Human Services, states that persons 65 years or older represent 14.1 per cent of the population in the U.S in 2013, a number which has increased by 24.7 per cent since 2003 and is likely to double by 2060 (Administration for Community Living 2015). In the UK, the Office for National Statistics quotes that people aged 65 and over make up just under 18 percent of the population; advances in health treatments have improved mortality rates, especially for men, as the number of men aged 75 and over has increased by 149 per cent since mid-1974 (Office for National Statistics 2015).
7 David Shenk (2003) in his study The Forgetting indicates that Alzheimer’s became a diagnostic category only in mid-1970s. Although the term was coined in the early twentieth-century by German psychiatrist Alois Alzheimer, it was much later that senility was recognised as a disease: ‘due to a shift in public conception […], doctors started to realize that senility is not an inevitable process of brain aging and decay but a recognizable—and perhaps one day treatable—disorder’ (Shenk 2003, 30). This recognition breaks the unity between biological age, ageing and disease.
8 Play on the word ‘still’ with a reference to ageing and Alzheimer’s appears also in the title of Genova’s novel Still Alice (2007). An ongoing photography project Still Life? Pensioners’ Photography in Scotland, a collaboration between the National Galleries of Scotland, The Scottish Pensioners’ Forum and Glasgow Caledonian University, is an initiative to empower older people in Scotland to address society through the practice of photography. It is, however, debatable whether the title of this project challenges or reinforces existing stigma associated with ageing. For an in-depth discussion on this project, see E. Tulle (2012).
9 For the detailed description of the meaning of mana, see Roger M. Keesing’s ‘Conventional Metaphors and Anthropological Metaphysics: The Problematic of Cultural Translation’ (1985). The Oxford English Dictionary defines mana as: ‘Power, authority, or prestige; spec. (in Polynesian and Melanesian religions) an impersonal supernatural power which can be associated with people or with objects and which can be transmitted or inherited.’
Compliance with Ethical Standards
Consent to include several photographs from the publication I Still Do was obtained from the author and photographer Judith Fox.
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