Lost Time: Dementia, Theology, and the Arts

Alexandra Banks, Lost Time, 2020. Drafting paper, wool, soldering wire, 110 x 60 x 15 cm.

Looking at Lost Time, it might not be immediately clear what this object is or how to read it. The deliberately evasive title doesn’t help the viewer very much either. Nevertheless, the sculptures form and wearability captivate the imagination. This fragile object with its volumetric complexities of transitional shapes and spaces, the varying levels of translucency, and the repetition of the origami balloons have come together in this form to solidify a theme that has been present and growing in my work for a number of years. However, this artwork came about almost by accident. I was asked as a last-minute inclusion to participate in an exhibition. This show was held in a textile gallery and the exhibitions theme centred on the question: What are the hopes and aspirations we carry on our shoulders as vulnerable and compassionate human beings? Having recently returned from a conference focused on anamnesis and liturgy, I was interested in creating a work that integrated a clerical stole, dementia, and community. This exhibition gave me the opportunity to materially explore memory.

When one looks at the public perception of dementia it is profoundly negative, it has become a highly stigmatised illness. As a result of this negative perception people today are more afraid of developing dementia than cancer. The consequence of stigmatising an illness is it reduces people to labels, ideas, and abstract bodies. There is an inherent violence associated with stigmatisation. In relation to dementia the violence is subtle. There is an element of dehumanisation and detachment as the individual slowly becomes the label of their illness. Another social outcome for the person with a clinical diagnosis of dementia is they may become the misunderstood and scary villain to their close acquaintances. It is not uncommon for friends and family members to drift away from the person, stating: ‘I’d rather remember her the way she was’. As such, in the hypercognitive western society, where intellect and reason are prized over love and relational connections, the fear of loss of cognition drives our response to dementia.

It is this communal response to dementia that I wished to explore in Lost Time, in addition to how the community can reframe their response to the deep-seeded fear that is fuelled by the threat of losing one’s autobiographical self. The question is, therefore, who holds our memories? According to John Swinton, a theologian working in the field of disability and dementia, the memory problem is not with the person who has dementia but with their community. Swinton claims that a person cannot remember who they are without the help of others, as such identity is formed and given by the community that they inhabit. It is the identity given by one’s community that is the most fragile and vulnerable, as it is out of our direct control. As such you can lose yourself and your sense of belonging if your community loses connection with you and struggles to identify who you are becoming. What does this mean theologically in a community of faith when a person may be losing their cognitive agency and are facing increasing limitations?

Deborah Creamer, a disability theologian, makes the case for the application of embodiment theologies to be applied to people who are ‘differently-abled’. I would maintain that someone with dementia is ‘differently-abled’. Embodiment theologies argue that when we reflect theologically, we inevitably do it as our embodied selves, for our bodies influence our theological perspectives, as it is through our bodies that we experience and relate to God. It is the experiential aspect of embodiment theologies that led me to consider the notion of how body language, gestures, and touch can, for people with dementia draw seemingly lost memories into the present. I wanted to disrupt the assumption that all memory is linked to cognitive recall but can be experienced through our bodies with the aid of our community. How then does one depict embodied theologies, dementia and community visually?

Alexandra Banks, Lost Time, 2020. Drafting paper, wool, soldering wire, 110 x 60 x 15 cm.

In the work Lost Time, the materials of translucent paper and wool, in conjunction with the sculpture’s wearability, present the viewer with a visual metaphor of an embodied theological response to dementia. The translucent paper folded into origami water balloons functions symbolically on a number of levels. Firstly, the process of making origami balloons requires the creator to spend time preparing the paper square, pre-folding the creases, tucking the corners into the little pockets, and blowing into the deflated balloon to expand it to its final shape. This method of manipulating paper brings to mind the process of making memories. The very considered and ritualistic way we construct and breathe life into what we understand as meaningful for our own identity creation. Secondly, the choice of translucent paper, not opaque or transparent paper, adds to the notion that memories are created through communal transmission. The translucent paper points to the communicative action required for others to remember us. Likewise, the use of wool an organic material to stitch all of the memory balloons together, replicates the role of our neurobiology in the form of brain synapses, and the physical processes of embodied remembering.

Alexandra Banks, Lost Time, 2020. Drafting paper, wool, soldering wire, 110 x 60 x 15 cm.

However, to fully depict how community can respond to the ongoing cocreation and the holding of memories, the sculpture needed to be worn. The fragility of the sculpture indicates the vulnerability of our memories, and the act of wearing another’s memories implies the responsibility and privilege it is to journey with someone who is navigating the emerging ‘differently-abled’ person. The human experience is an evolving reality, and none of us will avoid being touched by the changing nature of our own physical and cognitive abilities. The purpose of Lost Time is to challenge our own perceptions of how God, community and self relates to memory.

[A version of this piece appeared in The Cooperative]

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ALEXANDRA BANKS IS A PHD CANDIDATE IN THE FACULTY OF THEOLOGY AT ST FRANCIS’ THEOLOGICAL COLLEGE, CHARLES STURT UNIVERSITY.

Finding Breath: Art as Visual Ritual

Karly Michelle Edgar, A Shorter Morning and Evening Prayer, 2019. Pages from a printed prayer book, wax, and cotton. Artist’s collection.

The process of looking at art is not only a rational activity of the mind. Looking at images arouses deeper feelings and perceptions. Images sometimes get under our skin and seem to touch the life of our body, through memory, awareness, and desire. Images touch us, they want to be cradled, felt, and held against our fingers so we can feel their texture and physicality. There is a strong connection between seeing and touch. This haptic sense of touch links our fingertips and our eyes, when we describe sensations that arouse or invite our devotion, prayer, admiration, as well as provoke anxiety, horror, or even anger. Images touch us in ways that activate our tactile memory, reminding us that seeing is not just an abstract mental activity but one that resides in our existence as creatures with skins that record memory and anticipate hope.

This vocabulary of touch is clearly at work in the creation and the visual form of the work A Shorter Morning and Evening Prayer by Australian artist Karly Michelle Edgar. The work pictured here has been laid out on the white cloth of a communion table in a church. It has been created through the folding of pages from a small book of daily prayer. Each page has been folded in the same way through repetition, covered in wax, and then sewn together with bright red thread. As a viewer, we not only see but also feel the tactile process of making, with each gesture of folding, dipping, and sewing. Over and over again this work is formed through repeated gestures that remind us of the words on the pages of this prayer book, as it is turned by hand and the words on the page become breath across the reader’s lips. The repeated ritual of prayer becomes the fragile structures of wax pages curled to contain the uncontainable, the devotion, hope, and desire of the one who prays.

Karly Michelle Edgar, A Shorter Morning and Evening Prayer, 2019. Pages from a printed prayer book, wax, and cotton. Artist’s collection.

Karly Michelle Edgar suffers from fibromyalgia, a condition that has heightened her awareness of her own peripheral senses. She writes: ‘My life requires conscious management to survive and this has led me to a deep appreciation of ritual. Symbolic actions and rituals do not create sacred spaces but rather desire that our attention be directed towards the fact that we already live within one’. Through an artistic process, the artist has found a way of making art as well as expressing her spirituality as a ritual that supports the life of her own body. Her art-making has been a means of deeply engaging her own sense of embodiment as a place where she encounters the presence of God. In looking at this work, we see not only an object but a record of an activity over time. It is the record of a ritual that contains life in a form, conveying a sense of grace and support. Each page remains open, set in wax. It is a reminder of the way each prayer and turning of the page is like a container that holds time, a cup containing grace, giving all the time that is needed to take a full breath of life.

Karly Michelle Edgar, A Shorter Morning and Evening Prayer, 2019. Pages from a printed prayer book, wax, and cotton. Artist’s collection.

Having seen this work as it was situated on the communion or Eucharistic table, the aspect that remained in my memory was the random patterns made by the scarlet red cotton threads that edge each section and form the work into one long sinuous form. These vibrant fine lines reminded me of the capillary tubes that pump blood in and around our bodies, always pulsing to the rhythm of breathing and heart movement. This work activates such memories of human bodies here at the place where the body of Christ is remembered through Eucharistic practices. This work does not point to God being found in transcendence through an escape from the body to another realm. In contrast, this work invites viewers to find God in the life of their own body, in a gesture that is as close as their next breath. This work is therefore confronting in its intimate and incarnational nature. It is in our flesh, with all its unique particularity, that we might find the place where we will see God.

[A version of this piece appeared in Artway.]

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KARLY MICHELLE EDGAR IS A MIXED MEDIA ARTIST, TRAINED IN THEATRE, WITH AN MA IN CHURCH PRACTICE. SHE WAS FORMALLY THE LECTURER IN ART AT TABOR (VIC) AND IS CURRENTLY WORKING AS A LIFESTYLE ASSISTANT IN AN AGED CARE FACILITY. SHE ALSO LIVES WITH FIBROMYALGIA, WHICH EFFECTS LIFE IN VARYING DEGREES AT DIFFERENT TIMES. KARLY’S CREATIVE WORK FOCUSES ON THE NEED FOR REST, REPETITION, THE SEARCH FOR BEAUTY, AND CREATIVITY AS SPIRITUAL PRACTICE. KARLY LIVES ON WURUNDJERI LAND.
ROD PATTENDEN IS AN ARTIST, ART HISTORIAN, AND THEOLOGIAN INTERESTED IN THE POWER OF IMAGES. HE LIVES AND WORKS ON AWABAKAL LAND.

Awakenings

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Karen Sewell, Awakenings I, 2020. Installation, Helium balloon, organza mesh, mirror, soft resting elements, 2.5m x 2.5m x 3.5m. Photograph supplied by artist.

Just days before New Zealand went into full level 4 lockdown due to the COVID-19 virus, my husband Graham and I spent an evening in a warehouse in Central Auckland, shooting this work titled Awakenings I. What we experienced that evening was surprising, strange, and otherworldly. As we worked in the dark with a video light, the huge transparent rainbow PVC balloon and organza mesh transformed. It became a levitating partially-concealed object of uncertain substance radiating dancing, shifting fields of colour and light that changed as we moved around and under it. The immediate encounter evoked a sense of wonder, acting for us as a threshold into an experience of the numinous.

Since that evening, I’ve wondered at the timing of this work; of how God might want to be at work in me, and in others during lockdown; of the possibilities waiting for us to be awakened to in these unusual circumstances.

‘Numinous’ means something mysterious, awe-inspiring, or supernatural; unknown or unknowable. It speaks to everything within the realm of our experience which cannot be quantified, explained, or contained. Our intuition, and our sweeping feeling-states. Our connection to the cosmos, and sense of the divine. The German theologian Rudolf Otto, in his book The Idea of the Holy (1923), explains it as a ‘non-rational, non-sensory experience or feeling whose primary and immediate object is outside the self’. 

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Karen Sewell, Awakenings I, 2020. Installation, Helium balloon, organza mesh, mirror, soft resting elements, 2.5m x 2.5m x 3.5m. Photograph supplied by artist.

Artistically, my interest is in the intersection of art and spirituality. This interest has led me to seek and receive inspiration (often through prayer and contemplation) and then to mediate the creation of spaces for audience/participants to engage with and within. The spaces are an effort to open up the potential for a viewer/participant to explore and experience the terrain of the numinous, including an awakening to a sense of wonder, and liminal moments of encounter with the divine. 

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Karen Sewell, Detail of Awakenings I, 2020. Installation, Helium balloon, organza mesh, mirror, soft resting elements, 2.5m x 2.5m x 3.5m. Photograph supplied by artist.

A sense of awe and wonder is closely linked to our deep feelings and emotions, and is excited by something strange and surprising. With my work, I aim to provide a sense of awe and at the same time create a calm atmosphere, a sense of a place to just ‘be’; to observe, to explore, to create, to be present in the moment, to just breathe. It can be about connecting us with nature, with others, with our feelings, and developing a sense of things unknown outside of ourselves. 

As Albert Einstein once put it:

The most beautiful thing we can experience is the mysterious. It is the source of all true art and science. S/He to whom the emotion is a stranger, who can no longer pause to wonder and stand wrapped in awe, is as good as dead – his/her eyes are closed. The insight into the mystery of life, coupled though it be with fear, has also given rise to religion. To know what is impenetrable to us really exists, manifesting itself as the highest wisdom and the most radiant beauty, which our dull faculties can comprehend only in their most primitive forms – this knowledge, this feeling, is at the center of true spirituality.

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Karen Sewell, Detail of Awakenings I, 2020. Installation, Helium balloon, organza mesh, mirror, soft resting elements, 2.5m x 2.5m x 3.5m. Photograph supplied by artist.

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Karen Sewell is a visual artist who lives and works in Auckland, New Zealand. She is interested in the intersection of art and spiritual experience. She works across multiple media including sculpture, installation, painting, drawing, and photography, specialising in installation practice. She was the recipient of the Premier Award in the Waitakere Trust Art Award in 2011, and has exhibited work across New Zealand, with a highlight being Wonder Tree, 2019 at Splore Festival in February 2019. In addition to her creative practice, Sewell founded The Bonfire and now facilitates this national artist network. The aims of The Bonfire are to assist and support the thriving of other artists, through online blog posts and face-to-face regular meet-ups involving workshops, retreats, and events.