The Aesthetic Experience of Dying

The Dance to Death

Veronica M. F. Adamson

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781351797153
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Morte in sociologia

Structured around a personal account of the illness and death of the author's partner, Jane, this book explores how something hard to bear became a threshold to a world of insight and discovery.

Drawing on German Idealism and Jane's own research in the area, The Aesthetic Experience of Dying looks at the notion of life as a binary synthesis, or a return enhanced, as a way of coming to understand death. Binary synthesis describes the interplay between dynamically opposing pairs of concepts – such as life and death – resulting in an enhanced version of one of them to move forward in a new cycle of the process. Yet what relevance does this elegant word game have to the shocking diagnosis of serious illness? Struggling to balance reason with sense, thought with feeling, this book examines the experience of caring for someone from diagnosis to death and is illustrated with examples of the return enhanced. The concluding chapter outlines how the tension of Jane's dying has been resolved as the rhythmic patterns of the lifeworld have been understood through the process of reflecting on the experience.

This creative and insightful book will appeal to those interested in the medical humanities. It will also be an important reference for practising and student health professionals.

1

The return enhanced

The suggestion that dying and death could be an aesthetic experience may appear crass or insensitive. Yet for those who have time to prepare for their impending demise, it can be a rich and rewarding experience. A terminal diagnosis is overwhelming in its first visceral impact but then eases into a background portent of inevitability. The chapter is in three sections. In the first part, “Invitation to the dance”, I outline how Jane and I came to be together and share a path through life and work. Our common interest in polarity or binary synthesis was based for Jane on the philosophical thinking of the German polymaths, Goethe and Schiller. To understand the essence of Jane, there is a detailed explanation in part two of binary synthesis and the return enhanced through the “Influence of German Idealism”. These have become pivotal to my understanding and interpretation of the illness experience. The final part, “Research aesthetics”, provides an overview of the methods used to gather and formalise the study data.

Part one: invitation to the dance

Jane was diagnosed in the July; the treatment plan was chemotherapy then surgery. The reality was some respite then rapid decline and she died the following May. As those few statements suggest the story is primarily about her illness and death but they were also a catalyst to investigate some of the more abstract layers which emerged from the basic facts. It is not uncommon for the bereaved to throw themselves into some new, time consuming enterprise. To use the experience as a basis for academic research is perhaps more unusual but not necessarily invalid. While training as a nurse and during my subsequent nursing practice I had cared for many women with gynaecological cancers; these were my companion stories (Frank, 2010). Such accounts accompany us through life, acting as a guidance system assisting with our reactions to events or circumstances. However, my gynaecological companion stories were not helpful friends; they were harbingers of doom acting as constant reminders of the destructive and disfiguring nature of such cancers. Or at least they did not at first appear to be friends until I came to realise that although they foretold of difficult, unpleasant endings, that very knowledge was empowering. I was forewarned and could therefore be forearmed when that time surely came for Jane.

At various times during the course of the research, others assumed that the study might be autoethnographic, a term used in reference to “autobiographies that self-consciously explore the interplay of the introspective, personally engaged self with cultural descriptions mediated through language, history, and ethnographic explanation” (Ellis & Bochner 2000: 742). Suggestions were made of studies such as personal bereavement following a father’s unexpected death (Sehn, 2013) or the earlier traumatic loss of a brother (Ellis, 1993). But the study was not about sudden or unanticipated bereavement; I knew the ending from the outset, and did not want the research to be autoethnographic. While I accepted my role and position as a personally engaged self was central, I was not the principal character or focus of attention; that privilege was for Jane. However, I did and do recognise my role as the researcher and reflexive agent in the unfolding narrative. The methodology that emerged from the original study is detailed elsewhere (Adamson, 2015) while the account given here is limited to an explanation of the basic process and the principal data sources – the stories.

The doctoral research attempted to understand the stories that were told as a direct result of the illness experience. Essentially there were three categories of story: those written by Jane herself; those told about Jane; and my own recollections of events. Jane’s stories were the ‘official’ version of her illness and its progression as told through our personal blog. The ‘real version’ of these stories about Jane were exchanged between clinicians in their various roles. We had verbal accounts from hospital visits and when we did have something written they were copies of letters addressed to our general practitioner (GP). But the third category of the central story was the one that filled me to overflowing and drove me to research the sorry episode. The drive to narrate experience is, as Rita Charon has observed “to tell and simultaneously listen to a story that reflects and constitutes the self” (Charon, 2006: 74). Ultimately the study was the final act of caring, one last thing I could do to honour my partner and our suffering, to learn from our shared experience. Going deeper and deeper into a painful story is not easy or comfortable but ultimately it is justified as the tension of the research is resolved through understanding and finding peace.

An earlier dance

I qualified as a general nurse in 1979 and worked in various positions as a staff nurse before becoming the ward sister of a general medical ward. An interest in education and research led to a nursing research training fellowship with the intention of studying the conceptualisation of nursing as a profession in its transition from ephemeral art to quantifiable science. Being registered for a PhD without a first degree proved to be beyond my capabilities at the time; I withdrew from academia and also from nursing. After retraining as a software engineer, a career in further and higher education progressed from lecturer to independent consultant. It was during the latter part of this time that I first met Jane in a professional context. All that we experienced was perceived as an opportunity for learning and mutual enrichment. Together, we had arrived at an interplay between thinking and doing, theory and practice by very different routes: Jane through her own doctoral study of secularisation in Goethe’s autobiographical writing (Plenderleith, 1991) and mine through adult education and systems analysis (Adamson, 1999).

We met when we were both employed in a major higher education initiative to establish a university for the Scottish Highlands and Islands. When the project became a reality we moved on and created our own educational consultancy specialising in the use of learning technologies to support tertiary education. It operated with modest success for more than ten years, advising colleges and universities across the United Kingdom (UK). After some intense years of working predominantly through government agencies, we were becoming tired and jaded. Political changes were likely with a shift of the UK’s administrative powers from centre left to centre right; there was also the banking crisis and its consequent austerity measures. By the autumn of the year preceding Jane’s diagnosis, we had decided to sell our house, put necessities in store and pack essentials (including two cats) into an estate car and a small caravan. We headed for Eastern France in a bitterly cold winter. Our intention, once we were settled, was partly to start a small gardening enterprise but mostly to enjoy a European life in France, bordering Germany with a view of Switzerland. We felt sure our enthusiasm and Jane’s fluency in both French and German were sufficient to ensure success.

The following March we were back in Scotland, older, wiser and ready for the next challenge: where to live. Then, just as we thought we could start to enjoy life in Edinburgh, Jane was rather surprisingly diagnosed with ovarian cancer. It was surprising because we both believed ourselves to be fit and healthy, with a lifestyle grounded by a good diet and plenty of exercise. With hindsight, it did perhaps explain her lack of energy and dwindling enthusiasm abroad. It was not simply weariness of consultancy work, she was seriously ill yet apparently innocent of her condition. Our way of being, when faced with this most difficult of life challenges was not to dwell on why Jane had cancer, nor when she might die from the disease but to live what remaining life we had together in a state of Voltairean optimism “everything was for the best, in the best of all possible worlds” (Voltaire, 2008: 4). The influence of Candide continued with the shared attitude that this great tragedy would be faced with humour. This is well illustrated by one of Jane’s last diary entries, when eating and drinking had become severely compromised and the morphine parched her mouth ‘Wouldn’t you just die for lemon sorbet?’.

Pas de deux

Our mutual attraction was confirmed with the realisation that we had arrived, by very different routes, at a shared understanding: a whole is more than the sum of its parts. For Jane this is best exemplified in her doctoral thesis (Plenderleith, 1991) where she explores secularisation in Goethe’s Dichtung und Wahrheit (Poetry and Truth). I have little understanding of German and therefore had only a general appreciation of her study. However, I knew from years of living and working with her that the methodological tool she had used in her research was central to her understanding and conceptualisation of her world. This certainty and epistemological confidence may seem too strong but I will demonstrate the evidence is there in both her writing and attitude to her own mortality. The conventional approach to biography is through microscopic examination of all available materials. In realising that biographical work is equally autobiographical, it is actually kaleidoscopic “each time you look, you see something different, composed certainly of the same elements, but in a new configuration” (Stanley, 1992: 158). Accordingly, I draw here on both the material evidence I have that could be examined by any researcher and my personal, and therefore unique, knowledge of Jane and her life. My memories are the jewel patterns of a kaleidoscope and not the penetrating spotlight of a microscope.

Goethe’s autobiography is a refashioning of his recollections (Dichtung) and factual information (Wahrheit) (Mahoney, 2002). The essence of Jane’s argument was that “Goethe’s treatment of religion in Dichtung und Wahrheit may best be approached as a representation of sacral principles in secular form, as an interaction of these polarised opposites, by the methodological tool of binary synthesis” (Plenderleith, 1993: 297). It is this quotation that introduces in a single, albeit complex, sentence Jane’s worldview. I will not pretend that I fully understand, despite her best efforts to explain, the nuanced meaning she drew from her study of Goethe’s discussion of religion. What I do know is that it led her to part company with her Christian upbringing, to accept her own sexuality, and for her conceptual understanding of life to be in terms of a virtuous interplay between opposing poles. Binary synthesis is essentially the interaction of two different concepts from which a third concept can emerge. This third concept is distinct in itself but contains all the elements of the other two within it. What appealed to Jane is the realisation that there is an inherent relationship between any pair of oppositional concepts. As a simple example, a question can exist but it needs an answer. Once a question has an answer it becomes subordinated to it in a process where they can then both be subordinated to or enhanced by the other.

Jane made extensive use of this mode of analysis, identified by the translators of Schiller’s On the Aesthetic Education of Man¹ (Wilkinson & Willoughby, 1967)², in her own thesis (Plenderleith, 1991). It is on this basis and my personal knowledge of Jane’s regular reference to binary synthesis or her own preferred term, ‘a return enhanced’, that I believe this mode of thought to be central to her personal philosophy. The essence is exemplified in Goethe’s famous maxim that “There is nothing worth thinking but it has been thought before; we must only try to think again” (Goethe, 1906: 1). An earlier thought or understanding is enhanced by new information and insights. A more precise explanation of binary synthesis and its origins follows later in this chapter.

In the dissertation for my Master’s degree in adult education (Adamson, 1999), I chose to investigate what was perceived then as a paradigm shift in post-compulsory education. The shift was towards student-centred learning, which had started with John Dewey and the notion of lifelong learning and the subsequent move towards experiential learning (Jarvis, 1995: 17). At that time I became aware of the work of Fritjof Capra and his exploration of the parallels between modern physics and eastern mysticism. The statement of the Taoist principle “that any pair of opposites constitutes a polar relationship where each of the two poles is dynamically linked to the other” (Capra, 1975: 114) led to a shift in my thinking. The polarity inherent within the educational paradigm that results from apparently opposing views should not be perceived as a problem but as a potential for change. It was only when Jane read my dissertation that she realised the similarity between our two philosophical approaches to life. We were both driven to see polarities not in a dualistic sense but through their holistic relationship. We were not consciously choosing to adopt a particular philosophical orientation to our lives together but it was part of our mutual attraction. Nehamas, in his consideration of The Art of Living, is not recommending a return to classical Greece but the recognition of a philosophical basis to a particular worldview, “The sort of self one constructs as a result of adopting certain theories is not simply a biographical matter. It is, much more importantly, a literary and philosophical accomplishment” (Nehamas, 1998: 2). If we take the time to understand a perspective for ourselves and not simply follow the way of our upbringing, then some intellectual accomplishment may also be derived from the effort. Our unity was brokered through binary synthesis, it was our common thread.

Dancing metaphors

The choice of the word ‘dance’ in the title is with figurative intent. I use the meaning and organisation of dance in a general sense to illustrate what I perceived as the disruption created by illness to an otherwise orderly, shared life. It had emerged quite naturally during The Illness Period. One particular day I became very aware of how our life together had become a series of dances, little step sequences, between the GP’s surgery, the chemotherapy day unit and the hospital clinic; we danced attendance to the health professionals’ tune. At times it was complicated and required the best of my logistical skills and forward planning, primarily to protect Jane from such necessary trivia. Yet it was also a time of joy, of small triumphs and simple enjoyment. To wallow in the impending gloom of her approaching death seemed a wilful waste of such precious time.

Initially I interpreted this as a loss of control and self-determination (Nordgren & Fridlund, 2001) and later as the temporal, medical disruption to our autonomy (Frankenberg, 1988). Then I remembered an image my sister, who is a printmaker, had sent me during the illness, of a naked, dancing woman that appears on the book cover. That realisation and subsequent visualisation of a female form moving through light and dark, became an iconic metaphor for the study and its particular conceptualisation of the illness experience. The use of metaphor in everyday life and language are commonplace “Metaphorical concepts provide ways of understanding one kind of experience in terms of another kind of experience” (Lakoff & Johnson, 1980: 486). In this sense the metaphor is clearly a useful figurative device to write or talk about difficult or sensitive topics such as death, dying and disease. Consequently, the use of metaphor in relation to illness and especially ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Acknowledgements
• Introduction
• 1. The return enhanced
• 2. Invitation to the dance
• 3. Days for dancing
• 4. The last waltz
• 5. The aesthetic experience of dying
• Index