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Illness: The Cry of the Flesh

Carel, Havi

Authors

Havi Carel



Contributors

S. Gerrard
Editor

M. Vernon
Editor

Abstract

This book describes the experience of illness from a phenomenological perspective. I found phenomenology – the description of lived experience – to be the most salient approach to the set of issues surrounding illness. Phenomenology privileges the first-person experience, thus challenging the medical world’s objective, or third person, account of disease. The importance phenomenology places on one’s own experience, on the thoroughly human environment of everyday life, presents a novel view of illness. Illness is no longer biological dysfunction to be corrected by medical experts. Illness is a way of living, experiencing the world, interacting with other people; it is a way of accepting a truncated temporal horizon.

We are all ill at some point or another. The vast majority of us will die of some kind of illness. Everyone’s life is touched by it to some extent. Illness and decay are universal features of all life, human and non-human. So why is illness – as a woman with bowl cancer wrote to me – ‘a dirty little secret’ sick people share? What are the contents of this secret? What is the experience of being ill like? This book unpacks the dirty little secret of illness, in an attempt to make it less secretive and hopefully, less lonely. The universality of illness, but also its intensely private and isolating nature, is a riddle I hope to begin unravelling in this book.

DESCRIPTION OF CHAPTERS:

INTRODUCTION: The introduction will set the stage for the theoretical approach that will be used and the philosophical issues analysed by it. The main approach of the book – that of phenomenology – will be introduced and the rationale for using it explained. According to phenomenology, the body is a unique phenomenon, being both an observable material object and an experiencing subject, or mind. The body has a unique ontological status as the only object in nature that also has consciousness, an object that experiences and perceives.

With this theoretical approach in place, I then move on to discuss illness as a distinctive bodily phenomenon. It is through the experience of the failure of the body that our embodied nature can be seen at its clearest, I argue. The introduction will also discuss how the personal and the philosophical meet in this kind of project and why linking the two is valuable to philosophy.

1. THE BODY: Chapter One will discuss the body and its transformation in illness through a phenomenological perspective. I will use Merleau-Ponty’s analysis of the body in the Phenomenology of Perception. According to Merleau-Ponty, human existence is embodied and defined by perceptual experience. A change in the body and in physical and perceptual possibility transforms subjectivity itself. I claim that consciousness is embodied and that the human being cannot be understood without seeing it both as embodied and as having a world.

This view suggests that the body is not a vehicle of the person but the embodied person herself. We are our bodies; consciousness is not separate from the body and therefore disease can no longer be understood as a mere physiological process that affects the person only secondarily. This is not just the trivial view that our lives and subjective experiences are affected by disease, but a deeper conceptual shift. On the phenomenological view, disease cannot be taken as a mere biological dysfunction, because there is nothing in human existence that is merely biological. We are embodied consciousness, so consciousness is inseparable, both conceptually and empirically, from the body. Therefore the concept of illness must be reconceived to take into account this unity.

2. THE WORLD: Chapter Two will continue the phenomenological analysis, discussing changes to the world of the ill person. Two meanings of the term will be discussed: the physical world and the cultural world. Changes to topography and location stem from the changes in bodily abilities discussed in Chapter One. Distances increase, hills become mountains. Stairs become obstacles rather than passageways. The physical world is altered for the ill person.

The cultural world is also significantly altered by changes in the ill person’s abilities. I will next bring out the relationship between agency and the body. The possibility of agency is inherently linked to the ability to assert oneself, or perform actions and to carry out activities that promote one’s goals. But the fundamental role of the body and of physical ability in connection to the agency changes in illness. These changes to the physical body curtail the ill person’s actions, her ability to carry out goals and operate effectively in the cultural world. The embodied nature of agency and the modification of agency by bodily limitations will be discussed. Two types of illness will be examined: chronic illness and disability.

3. SOCIAL RELATIONS AND FRIENDSHIP: Chapter Three will discuss the social world and its transformation in illness. The change in self-perception discussed in the previous chapters is mirrored by changed social perception. The chapter will ask how the ill person is seen by various agents in different types of encounters. The encounter with healthcare professionals will come under focus, as will encounters with strangers (using Sartre’s notion of the gaze). The chapter will then turn to the role of friendship and the strains placed on it by illness. The ideas of betrayal and disappointment, how illness poses a threat to intimacy, and fear of the diseased body will be discussed.

4. A TRUNCATED FUTURE: Having discussed the spatial world of the ill person, Chapter Four turns to temporal existence and how it is altered. When someone is presented with a poor prognosis, she must change her ideas of her future, abandon life plans and create new ones that are adapted to the new temporal expectation. With modern medicine, we are often presented with statistics that are meant to supply us with some way of assessing the plausibility of various goals. Does a prognosis give ill people access to their future that is unavailable to the healthy? How does one realign life plans and expectations in the face of a grim prognosis? This chapter will examine the role of hope, as well as the demand to modify one’s self-understanding when facing a truncated future.

5. DISABILITY: This chapter will examine the notion of disability. I aim to examine this notion in relation to Heidegger, and his definition of human existence as 'being able to be'. Heidegger’s pragmatic definition of the human being is driven by his notion of projection. Projection means throwing oneself into a project, through which the human being’s identity is defined, e.g. if my project is being a teacher, I project myself accordingly by training to be a teacher, applying for teaching positions etc. This, Heidegger claims, is the essence of human existence: the ability to be this or another thing, to assume a role as a teacher, a musician and so on.

But in some illnesses, especially mental illness and chronic illness, one's ability to be is radically curtailed. I analyse the problem and then propose a reconstruction of Heidegger’s notion of existence as the ability to be. I argue that this reconstruction allows for drastically differing abilities to count as forms of human existence. The notion of adaptation will underpin this plasticity.

6. HEALTH WITHIN ILLNESS: In this chapter I introduce a novel concept emerging in contemporary healthcare literature, that of health within illness. Examining recent literature and medical studies informed by a phenomenological approach, I develop the notion of health within illness and discuss the results of studies looking at reactions ill and disabled people have to their illness and how this affects their well being. Rather than measuring the experience of the ill person in objective parameters, i.e. how far from the norm she is, I focus on the experience of personal growth, adaptation and health-within-illness. I argue that a phenomenological methodology can enable the expression of these experiences, in order to give a more complete description of the altered relationship of the ill person to her world and develop a better understanding of her lived experience.

In this chapter I provide a positive answer to the question: can seriously ill or disabled people have a good life? I develop the idea of illness as a limit case of lived experience, one in which the usual ‘rules of engagement’ are rewritten and require significant adjustment and creativity. These two central ideas – that illness induces adaptation and that adversity is the source of creative responses to it – serve as the basis for this positive reply.

7. DEATH: How can I prepare for my own death? Can a terminally ill person have a meaningful life despite her knowledge of her imminent death? Should ill people think about death, try to come to terms with it, or should they try to ignore the inevitable? This final chapter will pit Heidegger and Epicurus against each other, each with a different approach to death.

On Heidegger’s view, we are mortal temporal beings and in order to understand ourselves and make sense of our lives, we must understand it as finite. His notion of being towards death is used to describe human existence as death-bound and temporally finite. On the other hand, Epicurus presents us with rational arguments with which we can combat our fear of death. If death is the state of non-existence, and therefore there is nothing to fear in death, there is no point thinking about it while we are alive. Are life and death entirely separate, as the Epicurean thesis suggests, or are they intimately intertwined, as Heidegger thinks? These are the issues to be discussed in the final chapter.

Conclusion: two types of finitude: In the conclusion I will offer a framework for understanding the relationship between illness and death, and between chronic and terminal illness, as two different types of finitude. In my book Life and Death in Freud and Heidegger (Rodopi: 2006) I argued that two types of finitude should be distinguished: temporal finitude (mortality) and finitude of possibility (limitations within life). Nonetheless there are important conceptual links between the two types of finitude, for example, temporal finitude entails finitude of possibility.

A pivotal link emerges in cases of terminal illness, where finitude of possibility is the precursor of temporal finitude. I aim to examine terminal illness as exemplifying the link between temporal finitude and finitude of possibility, or in other words, as providing us with a much needed conceptual link between illness and death.

Citation

Carel, H. (2008). S. Gerrard, & M. Vernon (Eds.), Illness: The Cry of the Flesh. Stocksfield, UK: Acumen

Book Type Authored Book
Publication Date Oct 8, 2008
Deposit Date Sep 20, 2010
Peer Reviewed Peer Reviewed
Series Title The Art of Living
ISBN 1844651525
Keywords illness, experience of illness, phenomenology, Merleau-Ponty, embodiment, disease, philosophy of medicine, healthcare
Public URL https://uwe-repository.worktribe.com/output/1008233
Publisher URL http://www.acumenpublishing.co.uk/




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