Below is my most recent article published in April 2012. It is my first published piece based on my illness.
MY MULTIPLE SICK BODIES: SYMBOLIC INTERACTIONISM, AUTOETHNOGRAPHY AND EMBODIMENT
Published in Bryan S Turner ed. Routledge Handbook of Body Studies 2012: Routledge p75-93
What happens when my body breaks down happens not just to that body but also to my life, which is lived in that body. When the body breaks down so does the life. (Frank: 1991/2002: p8).
A person does not ‘inhabit’ a static object body but is subjectively embodied in a fluid, emergent, and negotiated process of being. In this process, body, self, and social interaction are interrelated to such an extent that distinctions between them are not only permeable and shifting but also actively manipulated and configured. (Waskul and van der Riet:2002: p488)
My aim in this article is to bridge my personal experiences of the body in illness with symbolic interactionist theory. I confront many things about the body simultaneously: the false dichotomies and dualisms of philosophical analysis which speak abstractly without direct engagement with the empirical world; the continuing importance of the hundred year old theory of symbolic interactionism as a tool to help create perspectives for making sense of the body in the empirical world; the challenging need to develop new and critical modes of presenting ideas about the body in academic presentation; and finally a few of my own experiences of liver illness and transplant surgery. This is a lot to do in a very short essay, which is hence inevitably limited, exploratory and partial.
An opening poetic: Body Thoughts
Let me start with two poetic observations written a few months after my own failing body, a liver transplant in 2007 and a subsequent recovery. Here is my body speaking and the words cut to the quick:
Feet gone black,
Eyes sunk deep,
Red blood spewing,
Red vein spiders,
Dark stain pissing,
Brain gone missing.
Mouth all drying.
Am I dying?
So these are a few of my favourite things.
The popping of pills
The clearing of spills
The draining of bile
The syringing of blood
The measuring of sugar
The pumping of arms
The tubing of noses
The bottling of piss
The panning of shit
The nagging of anaesthetised nerves
The jellying of ultrasound sliders
The gagging of endoscopic tubing.
The loneliness of the big scanner.
Ah yes, I remember it well.
This swiftly takes us directly to the heart of the matter: the fleshy, corporeal nature of the body, its social habits and embodiments, and the ways in which we re-present it in our lives and work: all of this is my topic of investigation. Poetry can often work to telling us so much more than theory, research, or philosophy: it speaks quicker, uses one good word instead of many obscure ones, and jolts the mind. Sociology needs to rethink how it presents all its ideas. Here I write of and on the body, drawing empirically and selectively from a much longer journal I wrote in the wake of my own illness between 2004-2008. I use it here to illustrate ideas on the body that flow from my lifelong commitment to symbolic interactionist theory as significant social theory. But I jump ahead of myself.
THE PRAGMATIC BODY: RADICAL EMPIRICISM, HUMANISM AND SYMBOLIC INTERACTIONISM
In this article, I want to link the body to the social through a simple return to a century old empirical tradition which claims that grasping the social world depends on the concrete investigation of its meaningful, human, emergent, empirical and obdurate character. As I have said elsewhere:
At its best, (symbolic interactionism) ( it) stands to remind many of the grander theorists of the past century of the continuous need to return to the inspection and exploration of the everyday life found in empirical social worlds, acknowledging firmly its special subject matter: intersubjective, symbolic, reflexive, processual, and ‘human’. It cries out to say that human social worlds cannot be studied like physical worlds; that to know means a deep intersubjective reflexivity that must make the researcher’s understandings link to those of the researched. Over and over again it pleads for us to learn that to talk of the ‘individual and the social’, ‘action and structure’, ‘idealism and materialism’ are the false splits, dualisms and binaries of philosophers and that such splits need not be imported into the practices of social inquiry. And it tells us -against all the wisdoms of much other theory- that the project we are engaged upon cannot help but be a political and moral one, through and through. (Plummer, 2000: p215-6)
Grounded in radical empiricsm, pragmatism, formalism, humanism and post modernism, the core ideas of symbolic interactionism can be found in the philosophical work of William James, John Dewey, Charles H Cooley, George Herbert Mead and others more recently like Richard Rorty. But it was Herbert Blumer who coined the rather ugly neologism symbolic interactionism in an offhand way in 1937 (and unfortunately it has stuck: I have long thought the theory deserved a better name). (Blumer, 1937). Sociologically, it has been developed in the works of Everett Hughes, Robert Park, Howard S Becker, and Anselm Strauss. More recently, it is to be found in the works of Norman K Denzin and Arthur Frank and a younger generation of radical, critical interactionists who want to make it much more explicitly political and ethical. Broadly, the theory directs attention away from matters abstract to a concern with the empirically grounded world; its politics directs us to a passionate practical concern with a just, caring and flourishing world. I have taken to calling my own version of all this ‘critical humanism’ (Denzin, 1992; Fine, 1993; Prus, 1997; Maines, 2001; Reynolds and Herman, 2003; Plummer, 2000; 2001).
The key features of the theory are well known. Here I simply suggest how it captures aspects of the body within five broad directives. The first tells us to examine the multiplicities of symbols, meanings, stories and perspectives: hence it asks about the multiple meanings of bodies and their stories formed around and through them. Secondly, it asks questions about self and significant others – how the social worlds we live in shape our sense of self. The most basic concept of symbolic interactionism has long been the self, which implies that the idea of “the other” is always present in a life: we can never be alone with a “self.” (Wiley, 1994). Here we deal with the embodied self and the networked body of significant others who give the self sense and meaning. The body is never alone but bound into others. At root, interactionism is concerned with “how people do things together” – with their bodies (Becker, 1986). A third directive is to see social life as emergent and processual: social life is in perpetual motion, continual permutations of action (Strauss, 1993). The body is not a thing as much as a constantly changing and adapting process – always on the move: we look at emergent bodies. Fourth, the demand is to acknowledge that human knowledge cannot be fixed or impartial, but is always locatable within pragmatic and political tensions: grounded in practical social life itself. The need is always to develop an empathetic and democratic grasping of the social life that allows us to get close to lived bodies and inspect the full range of stories and moral implications of ‘how to live a life’. Here we can speak of political bodies and ethical bodies. And finally, the theory demands that we get close to the experiences of actual bodies. Interactionists are not interested in (the now voluminous and never ending) theories of the body per se: their concern is with the pragmatic grounding of ideas and social life in contexts. The exploration and inspection of empirical worlds is their challenge. Bodies are experiental and grounded. As Blumer says:
Symbolic interactionism is a down‑to‑earth approach to the scientific study of human group life and human conduct. Its empirical world is the natural world of such group life and conduct. It lodges its problems in this natural world, conducts its studies in it, and derives its interpretations from such naturalistic studies. (Blumer (1969: 47))
Hence in looking at bodies, interactionists shun the abstractions of others to ground bodies in daily life and empirical observations. They urge us to get close to living, breathing (and dying) fleshy, corporeal bodies as they are experienced in social life.
Interactionism has a its own perspective on the body lying in waiting to be grounded ambiguously in observation and analysis. The meanings of bodies can be found through interactive processes ‑ they emerge out of interactions. The embodied self is a process built out of encounters and endowed with shifting meaning. Bodies assume their meanings according to how they are handled in joint actions. Social groups are ceaselessly involved in negotiating the meanings of bodies. Societies are a vast matrix of ‘social worlds of bodies’ constituted through the symbolic interactions of “self” and “others.” Only in the grounded empirical world open to observation can the body and its self, meanings and performances be investigated. There is, then, behind symbolic interactionist sociologies a pervasive imagery ‑ of symbol, process, interaction, intimate familiarity, politics and ethics. All of which helps to shape its theoretical work on the body. Contemporary interactionists, Dennis Waskul and Philip Vannini (2006) have brought together many of these key ideas together in an edited collection. For them, the “bodies of symbolic interaction” can be analysed ‘with relative precision’ and they organize their materials around five main versions of the body: the looking-glass body, the dramaturgical body, the phenomenological body, the socio-semiotic body, and the narrative body. (2006. p 19). To this I might have added ‘the habitual body’.
The work of Arthur W. Frank on illness and the body. But there are many interactionists who have written about the body, and from the many I single out the work of Arthur W. Frank as probably the most prominent. In a series of key works, he has drawn from his own illness of cancer and heart attack to analyse and narrate the role of talking about our illnesses in our lives. His first book – At the Will of the Body (1991) – was a kind of reflective memoir. Whilst stressing how unique each story is, he highlights how important are these tellings in the organization of illness. This is not the telling that doctors give us – of diagnosis and symptoms – which we often simply rehearse. Rather it is the stuff we often cannot say about suffering and pain, about our own paths in illness which we need to share with others experiencing the illness. In a major way, he sees illness as an opportunity:
To seize the opportunities offered by illness, we must live actively: we must think about it and talk about it, and some, like me, must write about it. Through thinking, talking and writings we can begin, as individuals and as a society, to accept illness fully. Only then can we learn that it is nothing special. Being ill is just another way of living, but by the time we have lived through illness we are living differently…… For all you lose, you have an opportunity to gain: closer relationships, more poignant appreciations, clarified values…..You are embarking on a dangerous opportunity. Do not curse your fate: count your possibilities( 1991/2002: p3; p7).
He wants us to engage in conversations about illness. Frank is thankful for the medicine that has saved his life, as am I. But the person, he rightly stresses, is more than his or her broken body.
Part of my own memoir speaks at length of how the disruption of an illness and the body actually leads to major changes in life. It is not just the obvious big things but the myriad little things of everyday life. As I say:
………..with the breakdown of my body, everything in my illness world changed, at least a little and often a lot. It was usually not exceptional or dramatic: it was a myriad of minor things. But everything took on a different hue, a shifting texture, another feeling. My worlds of movement, clothing, hair, drinking, eating, sleeping, washing, talking, thinking, and feeling – all moved into a different key. The people I knew took on different characteristics. Places became different. Whoever I was before, I was not now. I was a new and changing body. It was a new world of feeling. My consciousness had shifted. Here is a sense of a world so at odds with the ways in which I experienced it when I was not ill. Being seriously ill shifted the phenomenal world I lived in.
My sickness story details at length these ubiquitous, routine shifts in my body alongside the more dramatic, epiphanic moments when my body underwent major crisis. Life and its bodies are transformed under the rule of illness.
The most famous or celebrated book by Arthur W. Frank is probably The Wounded Story Teller: Body, Illness and Ethics (1995). In this he establishes the importance of voice, telling and stories around illness – that illness is a ‘call for stories’- and sets out a number of major ideal types of narratives of illness, which have provided the benchmark for a number of subsequent studies. He is concerned (as I was in my own book Telling Sexual Stories (1995) published at roughly the same time), with the ways in which contexts shape the stories that can be told: illness is experienced in different ways through the availability of different stories at different times. Frank assembles three ideal types of story – and any life is likely to move between all three. Indeed, I can identify with them all. He calls them the restitution, chaos and quest narratives – and he is concerned with the embodiment of these stories – ‘how they are told not just about the body but through it’. (Frank, 1995: 3 my italics). Most commonly I told restitution stories, with its most basic optimistic plot line: ‘yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again’. (Frank, 1995:77). My body spoke to medical concerns and treatments. Next common were the postmodern stories of quest: what the illness was meaning to me? how I should live my life now and in any possible future? Illness becomes a journey of exploration. My body spoke to wide existential and ethical matters of how to live a life – when ill and when, hopefully, out of illness. Very rarely did I tell chaos stories, those darker stories when the body and its illness is seen as out of control stories told when there seems no hope for life or the body to get better. My body even at its worst did not seem happy with these stories.
AUTOETHNOGRAPHIES AND THE GROUNDED STORIES OF EMBODIMENT
In this article, my main concern is to pitch my own sick body up against some of the huge amount of theorization existing on the body. I stress the need for a grounding of understandings and the stories we tell. In grounding analysis in empirical worlds and experience, interactionists can also become sympathetic to the personal experiences of the researcher and are not against including their own experiences in their work. Indeed, in the latter years of the twentieth century a new sub species of research and writing-often called auto-ethnography – has grown as part of the proliferatio n of new qualitative methodologies. It has become a minor method in the social sciences (Sidonie Smith and Julia Watson, in their study of Reading Autobiography (2001), list it as just one of some fifty –two possible developing ‘genres of life narrative’ ranging from auto/biography and bildungsroman through to memoir, oral history, self help narrative and survivor narrative). At its core, auto-ethnography suggests autobiographical and life story wisdoms are extended to a wider cultural understanding. Whereas autobiography creates a problematic relationship between the author and the life, autoethnography creates a problematic relationship between author and culture. (cf. Reed-Donahay, 1997; Ellis and Bochner ,2006; Ellis, 1995, 2004). Much of this essay is to be composed of a few fragments of my own autoethnographic sickness story, which I introduce thus:
During late 2004 and early 2005, I was taken seriously ill and diagnosed with end stage alcoholic related liver disease. I was very sick and faced death. On February 18th 2007, I received a liver transplant (a right lobe split liver graft). For the rest of my life, I am on medication to suppress my immune system, but my only new diagnosis is post transplant steroid induced diabetes which is not uncommon and does not worry me. At the start of 2009, I was back functioning more or less normally.
Telling stories is one key to grasping the social and the personal – and writing my sickness story served many functions for me. It was therapeutic in giving a sort of closure to my illness. It linked me to others as a tool for speaking about my life and past. It helped me make sense of what was for three years a pause in my life – what I now call a Total Life Episode. Already, the experience has now receded somewhat from my awareness, and so it has also served as a guide for assembling my memories. I am so very glad that I wrote it as document of life to help me remember. As I wrote it (mainly between October and December 2007), I unearthed around 50 different ‘social meanings of illness’ for me -from illness as opportunity to illness as stigma –and wrote around 60, 000 words. Some of it has been put on my website; most of it still sits in a file. In this essay, I will sample some issues in it. There is a tradition of sociologists writing about illness -from Julius Roth’s classic Timetables (on polio (1963)) to the more recent account by Ann Oakley, Fractured (2007); and now in the growing field of narrative medicine (in the works of Arthur Kleinman (1988), Arthur Franks(1995), Rita Charon (2006) and others). I do not detail any of this: instead I will use just a few extracts from my own account to draw out themes around my own sick and failing body. I cannot in a short article cover much ground but aim to capture some of the flavor of my story. To start, the following long extract sets the tone and captures a great deal:
A fragment of my own story: my multiple transforming bodies
Being ill brings multiple bodies. At various times I had an obese body, a ghostly body, a cyborg body, a wounded body, a born again body, an absent body, an encephalopathic body, an exhausted body, a hallucinating body, an itchy body, a hospital body, a sick body, a toilet body, a learning-to-walk body. Illness shapes the body in different ways and at different stages, and each time the body has the project of re-assembling itself. You – the sick person – are the orchestrator of its new forms and its new ways of being. You are in charge of the body as it shapes and refashions itself under siege.
My first new body started to appear in 2004. A beer gut had accompanied me for much of my adult life, but just recently I noticed that things were getting a little out of hand. Not only was my stomach becoming hugely unsightly – though people were kind, they never commented, except for saying I was cuddly!- it was bringing problems: breathing was becoming noticeably more difficult, moving around was harder and more exhausting, energy was fast drained. But more serious were new signs that accompanied my old fatness: the feet were swelling, toes looked as is if they were going black, bending over to pull on my socks became an issue each morning. And slowly this got worse and worse. Going to bed meant finding the right angle to lie; washing and dressing started to take much longer to do; long walks had to be dropped from my repertoire of activities; shirts had to become floppy and baggy – XXL became my size; I looked out for trousers with elastic waists. Oddly, my face became more emaciated. I became less focused on things. I could not sit down comfortably for any period of time. It was when my enlarging ankles and now legs started to look blacker and blacker that I decided a doctor should be seen. Fat and obsese body. Bruised and blackened body.
The hospital in Santa Barbara handled this superbly and quickly. My ascites – as it was identified to be- meant a long but effective fluid draining (paracentis). A pipe is inserted in my abdomen and then ten litres of fluids were drained from me within a few hours of arrival. I entered with a heavy body way out of control, and left 24 hours later as a very thin person instructed to stop drinking, cut out salt, take some pills, rest for a few weeks and move very carefully. Indeed a life warning had been placed on me. Drained, threatened, sick body.
My fat body had become my thin body. I stopped drinking. I lost my appetite (and avoiding salt meant cutting many kinds of foods from my diet). My face looked drained and older, much older. I weighed myself everyday and kept notes on keeping thin. A little ascites returned though I never again needed to be drained. Still, I did look a very different person. When I got back to the UK, some people did not even recognise me. Others said later that I scared them: I looked so different, so thin, so very ill. Some people, I know, avoided me and I did not make it easy for them as I tried to carry on – with lectures and classes- as normal. However ill I was, and whatever I was, I was most certainly not the old Ken. Thin, aged, scary, on death’s door body.
My body at home became manifestly exhausted and tired. I had to learn that using my energy had to be a careful choice. My old body had a lot of energy and I could do a lot; I soon realised my body would warn me within an hour or so if I tried to do much. This was a very different body I was living with. It kept telling me, sit down, rest, relax and sleep. This tired body needed its chair, its afternoon rest (which moved from being one hour to taking up many hours most days). Doing things became harder and harder; I could do less and less. Was I being lazy? I could soon answer this: if I tried doing a lot (and this even included mental energy) I would soon reach a point where I just had to stop. This was my base line body for two years and it was a very different body to the one I had known all my life. Low energy, lazy, tired, sick body.
This tired body could wander off into a world of its own. It was not just that I would spend time day dreaming (usually to the accompaniment of romantic music – new age, musicals, cabaret singers), I would sometimes be on the edge of my encephalopathic body. This body gave radically different meanings to the world around me. I could not quite see the furnishings in the same way; the house became a bit of a maze, an obstacle course; I no longer quite knew where anything was, or indeed how any gadget – a kettle, a bath shower, a toothbrush, a TV control – actually worked. Indeed, to my intense irritation, I recall that often nothing worked. Or my body could not work them. My body often drifted into a world of unfathomably complicated things. And it moved around very slowly – dreamlike- trying and failing to deal with them. Of course, I realised afterwards that I may well have been having one of ‘my turns’. At the time, my encephalopathic body was a slow-moving, memory-less and utterly estranged sick body.
My hospital body was something else. Here I literally placed my body under the care and control of others. This is true in a very obvious sense: doctors, nurses and carers prod my body, prick my body, connect it up to a stream of machines, draw blood, empty my plumbing and drains. There is a strict regimen of medication punctuating the day: my lactulose, spiro, tacrolimus, thiamine, insulin, prednisiolone, fluconazole, and mycophenolate to take. They look in my eyes, hold my pulse, prick my fingers, take sugar levels, pump up my blood pressure, measure my temperature. My body is under constant surveillance. There are also dramatic moments: the surgery itself for example; and an armoury of medical testings which surround the everyday. Placed into the wheel chair or back on to the trolley and off you go: for an endoscopy, a colangiogram, an ultra sound, a simple X ray, or a MIR or CAT scan, a cardiogram, a chest test. For your time in the hospital, and kind as everyone usually is, your body is no longer yours. It is now a hospital body, under the control of the hospital- on loan to them for a while as you try to get better! Medicated, monitored hospital body.
But there are more extreme versions of this. In the intensive care unit my body took on two distinct new forms: the cyborg body and the hallucinating body. It is almost an embodied moment of the mind/ body split. My body is now that of a cyborg: it is wired up and linked to so much technology, that it seems to be a machine. It is not really open to my own mind moving it or owning it; I have to lie there on my back, there is nothing I can really do. Am I real or am I a machine? Cyborg, machine body.
And all around me, my mind sees the craziest things. Yes, I am at some moments all wired up with nowhere to go. But at others I am well and truly rolling around the world in my mobile bed: escaping the bombed hospital, rolling down Christmassy country lanes in Essex, flying into shopping malls at Turnpike Lane, living on sea cliff hotels in small villages on the Cornish coast. This is a body that seems almost to be a non body flying around the country in its own ward like vehicle. An out of mind, hallucinating, flying body.
Then there is my body in recovery. Immediately after the intensive care experience, I became aware of my transformed body and had to spend some time coming to terms with it. In many ways, I saw this as a re-birthing of me. I have almost been killed off – my old body (certainly my old liver) had gone in the surgery. Now, attached to machines and surveyed all the time by nurses and doctors, the challenge was to reclaim my body back to myself.
It seemed like a long process – in fact it took no longer than two weeks. But bit by bit, each part of your body has to be got back under control again (re-assembling Ken). It starts with re-learning how to breathe as tubes down your throat are removed (breathing Ken), and moves on to physically becoming aware again of senses, fingers and hand – pain control requires that you lightly touch a small button placed by your fingers (fingered Ken). Lying on your back, it is almost impossible to move for a few days but little movements are seen as great glories (fixed and fidgety Ken). All your orifices have been blocked or tubed up, and initially there is no control over any body functions (blocked up Ken). I thought of my Freud: and watched anew the oral, anal and genital functions start to become slowly (very slowly) back under my control (oral Ken; anal Ken; genital Ken). Odd foods were placed in my mouth- no grand eating yet. I watched the urine and the bile pour down tubes near my body (tubed Ken). My bowels needed bed pans (eating Ken). Bit by bit, I participate in the re-assembling of my body. Struggling with clothes (dressed Ken), it took hours and hours to wash. Half an hour for teeth cleaning. A whole morning for a shower – or so it seemed (clean, washed and showered Ken). I pondered how speedily is the daily care of the body in the outside world: in hospital it is a long and central process. There is in truth little else to do but worry about the body. And then there is getting out of bed: slowly, I have to learn to walk again. This very simple child like act takes about a week: getting out of bed and just standing, with all the fraility and fragility that this brings – will I fall? Making a first step. Going to the bathroom. How to hold bags and move around. Moving from the bed to a chair. Going out of the room. A few steps down the corridor. At the end of the corridor. Hallelujah! Down a flight of stairs (Walking Ken). Exhausted Body.
Finally, and most significantly, there is the realisation that I have a new body – a transplanted body with a new life. One body has ended and their dead body parts have brought another imminently dead back to a new life. An old body lives on in a new body. And what kind of body is that? A transplant body. (Plummer, 2009)
I speak here then of many bodies emerging. But my description is far from exhaustive. I do not even mention the more obvious ways my everyday body intersects with the social: how it is, tacitly also and in the background, a British body, a white body, a middle class body, a male body, a middle class body, a homosexual body, an ageing body (British, middle class, queer, ageing Ken). Like everyone, my body is polyphonic: it speaks to many things. But clearly some matters were being foregrounded over others in the crisis body setting.
Students of interactionism will recognise here that in my illness and recovery I also remained an intertactionist academic self. After all, I have been a symbolic interactionist since around 1970! My body and mind move like a symbolic interactionist and my very written text plays around with a much celebrated piece of writing by Erving Goffman on Preedy (Goffman, orig 1956; 1961). ( I am not sure I was aware I was doing this at the very moment of writing it!). It is important to be attentive to our bodily writing strategies for as I write my body, I am simultaneously writing with my body and capturing and creating throughout a sense of the performing emerging and embodied self. I do it here in very direct and down to earth language and not in abstractions and theory. Behind all of this though, I have been aware of some of the deeper, historical long puzzling philosophical problems that were circulating around me.
CONUNDRUMS OF THE BODY: PHILOSOPHER’S PUZZLES AND INTERACTIONIST RESPONSES
Philosophers have long had an interest in the body (and since the 1980’s, the sociologists too). Their concerns might be simple mindedly captured in four classical conundrums.
Materialism/ Idealism: here are the classic problems confronted from Aristotle and Plato through Descartes and on to contemporary problems about the body and brain. The slogan ‘Cogito ergo sum’ goes to its heart; and although confidently spoken in the eighteenth century is has long been ‘a stubborn philosophical problem’ (Crossley, 2001:p1) – now surely deeply contested. The puzzle over the paramouncy of the material and the ideal, the body and the mind, the machine and the ghost, the body and the soul remains as alive today as it ever was.
Holism/Atomism: a second classic problem speaks to the conflicts between the whole and the individual. It manifests in social theory as the long standing debates over action and structure; and in methodology in the classic divides between ‘methodological individualists’ and holists. Here the isolated, solitary, individual body meets an assemblage of embodied networks where bodies interconnect and relate: where no body can ever be an island on its own. Bodies live in social networks.
Continuity/Transformation: these are the problems of permanence and change, habits and emergence, even the puzzles of essence and ephemera. We are stuck with problems of universal essences at odd with the utter fleeting, contingent and fluctuating flow of life: between the Platonic search for underlying structures at odd with the Heracalitean flux and flow. Here the solid real body meets the fleeting, changeable contingent body.
Voluntarism/ Determinism: and closely linked to the above comes the problem of human agency and the extent to which we are determined or not. Again this is an interminable problem: Is the body an active agent or a determined object? Over and over again, this problem reasserts itself.
Now I do not want to enter these philosophical debates here. They are well known, voluminously articulated and I am neither philosopher nor grand theorist. So I will leave these abstract concerns to others. Rather my more pedestrian concern is to link these puzzles to my own mundane sense of the ill body, ones that I start to capture in the poetic above and will now illustrate further from my own experiences. I follow up on the four puzzles above, all of which also lie at the heart of interactionist writings on symbol, self, emergence and action. In looking at my autoethnographical narrative, I provide a little of my own responses to each of these puzzles.
Symbolic Bodies and Material Matters
The body is manifestly material for me – it is Blumer’s obdurate empirical world (Blumer, 1969): and there was absolutely no getting away from it. To reduce it to language or discourse became manifest non sense to me. There is an empirical, material world which we have to engage with. (In many ways, Symbolic Interactionism (SI) has a close affinity with Actor Network Theory (ANT) though I cannot address this here (Latour, 2005)). Material things have lives, maybe even agency. Thus in examining my own illness, the following are a few brutal, obdurate empirical realities independent of my even thinking about them:
- Blood pouring involuntarily from me: a red liquid spewing from my mouth to half fill a sink
- My broken liver: though I never actually see this: handled, taken out of my body, discarded, and somebody else’s liver returned to that cavity in my body.
- The obvious accumulation of fluids in my stomach which needed to be removed
- The cutting of surgery: one liver is taken out, one liver is put in
- The bile – I can see its physicality, flowing through bile tubes into bile bags, and needing very regular emptying. Normally it is hidden from me.
- A blackened leg and swollen foot:
- The colour, texture and movements of my shit or faeces- which often looks very odd and different in many ways I will spare the reader here!
- Endless flows of pills awaiting my mouth and dissemination into my body – a drug regime
- And, maybe more complexly, a flood of unexpected and uncontrollable tears four years later as I enter an operating room to have a tooth extracted.
We could trace the social life of each of these material things. What is the social life of a bile bag? In all of this, a key process has to be the active ways in which material objects like blood and livers come to be interpreted and given sense. This is really never simply a discourse but an active process of narrating, symbolizing, storying, even performing these material objects. I performed the stories I now tell of my blood, my liver, my stomach fluids, the bile. The material and the interpretive have to be held together not turned into a false dualism or split. Both are at work together all the time.
Consider one truncated story of my blood. I wake up one morning, go to the bathroom and before I knew what had happened, blood spewed out of my mouth and into the sink. A huge flow of it. This is a material act – and a pretty striking one. Deep thick red blood from inside my gut gushing out into the white sink involuntarily with no warning. Loads of it. But the blood acts on me: it ‘ spontaneously’ leads to a mass of interpretations: I had to make immediate sense of it. I shouted from the bathroom to my partner Everard; I get on the phone to my doctor nephew; I jump into a car and arrive at a hospital – all within twenty minutes. Something abnormal this way came. And this social act turned into a hospital stay of a week and a half- for ‘emergency’ and ‘inspections’. The material world demanded interpretation –as it always does. And I became the active narrator and performer of my illness. Now there are hundreds and hundreds of these material disruptions in my life, and this small example must just be taken as illustrative of material and interpretive multiplicities in the everyday sick body. Debates about body/mind splits seem to me to be irrelevant and beside the point. Leave that to the philosophers. There were no splits for me. Body and blood, mind and narrative, embodiment and performance – both moved together all the time.
Which others? : Reflexivity, Significant Others and the Multiple, Relational Networks of the Body
The body is not an island unto itself and there is never one body: ‘no object, no body, no disease, is singular’. (Mol, 2002: 6). The body and its material life does not, cannot, exist in a unified form – it is always multiple and connected. Objects like my body are part of a great chain of interactions with others and in turn become multiplicities, complexities, permutations and assemblages (cf Strauss, 1993). It is the way of putting things together, of connecting that is crucial – not splitting and isolating, but finding ways of holding things together in the analysis. The multiplicities of meaning and the chain of perpetual interactions with others (significant or not) have long been at the centre of symbolic interactionist analysis. My personal log was aware of this as I wrote:
So illness is hardly a solitary experience. At the very least my illness dwelled in the closeness of my partner. I have often said it was a joint illness, ‘our illness’: so fortunate was I to have someone who was physically with me all the time. People who have this in their illness are indeed the lucky ones, though they may not see it so. I cannot imagine my illness without my other – but I do know this must happen very often. Facing illness on your own probably makes it so much harder.
But it goes much further than this. I have already said how important friends and strangers are. But now I want to go further. I want to suggest that illness lies at the intersections of a labyrinth of social worlds – of clusters, networks, groups of other people busy getting on with their life. There are hundreds of these little – and not so little- social worlds that touched my life. Some were old worlds that just came into sharper focus. The importance and the loving work of the post lady who delivered my daily stimulations from Amazon.com; the florist who brought monthly spectacular arrangements of flowers to my front door from my department at work; seemingly long lost friends and old students who arrived at the door step and gave me a hug.
But of greater interest to me here are the new worlds that illness inevitably takes you into. In my case, this was what I could call the social worlds of donor- transplants: a world I virtually knew nothing about until I was ill. This’ transplant world’ can be divided into three major arenas: the transplant patient’s worlds, the donor’s worlds, and the medical worlds that interconnect them. We could see these as negotiated networks. These worlds themselves are highly differentiated (no two transplant patients or donors are exactly alike) and are in constant flux and movement – all are subject to change, contingency and the uncertainty of social life …. They are always emerging and unsettled. These days they are also frequently international – people travel to get (and give) their organs. For three years, my body and life was locatable in these networks – at the intersection of these multiple worlds- and they dramatically shaped mine.
The theoretical point here is that neither action nor structure, holism nor methodological individualism should be the issue: it is the interconnectedness and relatedness that matters. No body can stand on its own. The reflexive self dwells in a network of bodies and others. Once we start to see this, the body becomes identifiably multiple – an assemblage that changes in its encounters and through it multiple significant others. So let me again be concrete by suggesting initially four interactive arenas of others’ bodies (of many) in which my sick body was located. It was rarely – if ever – on its own.
(a) The body’s significant others. My sick body was rarely away from the bodies of others. It was always in the hands of my carers, my nurses, my doctors. My partner for example had to live – twenty four hours a day for over two years- with my erratic body, watching it for signs of jaundice and encephalopathy, caring for it when it broke down, controlling it when it became prone to psychotic illusions. His body held mine. Likewise, nurses were charged with supervising my body – adminstering pills, helping me walk, wheeling me around, washing me, emptying my bed pans. More generally, in my illness I learnt to be a little reclusive: friends and people I might meet in the street often recoiled from me – some not even recognising me, as my body took on emaciated , ageing and even dying styles. My body was immersed in the reactions of the bodies of others.
(b) The embodied self. I was never alone with a self. The self is constituted through the perceptions of others, and as Charles Cooley said so brilliantly over a hundred years ago: we dwell in the minds of others. So throughout my illness, I dwelled in the minds of others- wondering not just about my illness, but about the perceptions that others might have of me. Stigma was often what I perceived – I had an odd, peculiar, broken body and with it came the potential for an odd, peculiar broken self. Yet I knew even if I had a failing body, I was not a failing person. My challenge was soon to be as normal as I could be given the circumstances (which was somewhat ironic, since out of illness my usual stance was the opposite!). Yet my body told me otherwise. It was a body that looked awful, needed a lot of rest and was often out of control.
(c) The body and its machines. In the modern medical world, the body is never far away from a host of technological gadgets which take on properties as other bodies. I was tubed up and bagged up; I was placed within a host of machines – x rays, ultra scans, etc; and in intensive care for four days my entire body was under the mercy of a hundred different technologies. The significant other here becomes the machine.
(d) The transplant body. Above all, the development of transplant medicine suggests the most extreme case of how much our bodies can be connected with others- literally. Here are two bodies cut open with a surgeon’s gloved hands; tissues, nerves and blood vessels are cut and an organ ( lung and heart, liver, kidney, cornea) is moved out of one body and with skill to another open, waiting, gaping body. Two bodies comingle. At a simpler level, the same is true for a blood transfusion. This is not mere deep connection of bodies, it is also dependency. One body needs another body. This no fleeting co-mingling: after the surgery one body is now permanently in the presence of the other. We cannot here ever talk about isolated bodies. Here are some of my earliest reflections on all this (written in December 2007):
A central challenge after post-operative transplantation would seem to be that of handling the body’s potential rejection of the new liver. Over a number of months – but especially in the early days – a tight regime of medications and clinical observations are needed to keep the body in a permanent low immune state to protect the liver, whilst at the same time preventing the arrival of any opportunist infections which could be life risking. The potential rejection of the liver is a key medical concern.
But the ‘moral’ rejection of the liver seems to be of little concern within the medical setting. At hardly any point was the issue of living with the liver of somebody else ever raised (there was one meeting of prospective patients where several people raised it as a question; but little was said). Yet for me, and I suspect for many, lying there in a hospital- and indeed for a long time to come- a new psychic issue has to be wrestled with: just who or what is this living organ now inside me, and how am I to live with this other person daily? As I often lightly joked in company, you may think there are two people here, but actually there are from now on always three! In one sense, I would and could never be alone again: another’s living haunting presence could now always be with me. Here is a small piece I wrote about two weeks after I came out of hospital:
So now I am no longer me – just me. I will spend the rest of my life in very close proximity with another life (or is it another body). I am a 61 year old man, who now lives with an 18 year old’s liver. Two bodies have become one body. Are these body parts simply mechanical objects? Or are body parts linked to the soul? Is my new liver simply a mechanical liver which has technically switched bodies, thanks to the skill of my surgeons? Or is it more like a soul: a kind of essence of my being, only now two beings and two souls. The first ‘machine-like’ view seems a bit dehumanizing: but the other view borders on the religious and could start to claim too much. There is I know a whole literature from people who donated their liver…. They now drink when they did not drink, play music when they never played music, have become gardeners, or sporty, when they never were before. And all because their donors were. Are souls as well as body parts transplanted? I must look into this more…..
An important part of the transplant resolution, then, is some kind of coming to terms with the new organ. There are many shifting responses to this issue. It could be lightly and swiftly ignored, denied, and simply forgotten. It could be seen as a bit like having a new prosthetic limb or a heart pace maker. Modern medicine is constantly putting new things inside our bodies and most people seem to have to come to accept this without too much fuss. But a moment’s thought tells me that this really is not the same: this, after all, is the life of someone else who had been living but is now dead; and this is the one part of that dead person that goes on living. And it is living in me. In some ways, the new organ is now in some ways deeply embedded in my own. I seem to possibly be ‘two beings now in one’?
As I lay there on the ward, and subsequently in many places, I have pondered the nature of this ‘other’ that I now live with on a daily basis. I mulled over a range of issues.
Just who is this kindly but dead person whose body I now live with all the time?
Emergence, Performance and the Habits of the Body: The More Things Change, The More They Are The Same Thing
My body is what holds me together. It is my shape, my container, my border. Although it continuously changes throughout my life, from a sucking, shitting little baby to a dying, dysfunctional old man, it is me: my body is the shell and armor of me. It is what provides me with a sense of moving continuity. Yet my illness – and probably all illness – disrupted the body and put it in need of repair. Even as I became an obese Ken, a cyborg Ken or an exhausted Ken, I still remained me. Even when I was a hallucinating body or an encephalopathic body, I know there was an underlying sense of my body as holding it all together. Even throughout the changes I have already described, my skin and bodily features (fingers, feet, face and the rest) provided me with a sense of continuity. There are momentary changes – but there are also long term ones (which I depict as the ‘moral career of the transplant patient’ and have no space to discuss here).
Yet I am looking at moments and emergence at the same time as sensing continuities and the constant reworking of habits. I am persistently (though not consistently) performing my body: my bodies – all bodies – are constantly performing, acting on the world, taking on new habits even as they are disrupted. Consider one of the more extreme post surgery moments:
After intensive care, my task in my new ward and room was to re-assemble my body. I had fallen apart – my old body had gone. I was wired up; I was bruised, plastered, and bandaged; I was hurting at every move; prostrate on my back; I could hardly move. I had bags hanging from me; I was unclean. None of my orifices were working on their own. I lay there watching some of my tubes – as fluids meandered slowly through them, and as drips drip, dripped. Flows in and out of my body – shifting momentarily the borders of my body. Nurses and doctors visited often and always with more machines, more pills, more injections. Lots of different faces that I slowly came to identify and love. But at the start my whole body seemed out of me, and I was far away from everything.
In serious surgery, the body is lost, removed from you, becomes an appendage served by others and machines. In intensive care, it is literally under the twenty four hour care of a nurse. The mental world is likely to be confused, hallucinatory and lost. The body, mind and self have become discombobulated, disconnected, deconstructed. Over a period of time, the task is to re-connect this body to the social world: the body is restored and made slowly to function normally again. The old habitual pathways were severely disrupted and new routines and habits have to be formed.
Lying on my back, arms are slightly moved; with much help, I sit up slowly. The physiotherapists arrive to re-teach me what I had known all my life. Orifices are awkwardly re-connected with me: tubes are pulled out from here and there, wires slackened, re-plumbing takes places. Peeing moves from a tube to a bottle to a bed pan to a toilet – again. Food is needed but big meals are useless: when I thought I was hungry and ready I ordered a large scale meal that I thought I fancied, but I could not eat any of it. Small is the word. I had to start with baby foods all over again.
As I recovered, I had a favourite song which came to mind and which I could not stop humming. I chuckled and knew I was recovering when I started to hum. The lines were Sondheim of course, and, as sung by Barbara Streisand hands outstretched – went:
Bit by bit, Putting it together
Piece by piece, only way to make a work of art
Every moment makes a contribution,
Every little detail plays a part.
Having just a vision’s no solution,
Everything depends on execution
Putting it together, that’s what counts!
This is the score of my life for the next few weeks. I was indeed ‘putting it together’ and back performing my newly developing body. More prosaically, it was what Marcel Mauss called a training in techniques, a reworking of traditions and feelings into the new habits of the moment. Or as he puts it, as only social scientists could: “We are everywhere faced with physio-pycho-sociological assemblages of a series of actions. These actions are more or less habitual and more or less ancient in the life of the individual and the history of the society”. (Mauss, 1934/1973)”.
The shower of my life
Here is one instance of hundreds. There is an entry in my diary in big letters (if in a very shaky hand) on Thursday March 1st, which simply says ‘Shower’. I guess it had been a good week and a half since I had properly washed. Before that it had all been damp flannels and little wipes. And I remember my first shower vividly. It was the big achievement of one particular morning. I had to get prepared; get clothes and towels and soaps ready – a lot of fiddling for half an hour! Then I had to get a nurse to help me- always hard, as they are so busy with endless priorities. I had to get out of the bed, move slowly on a frame to make it to the shower, be assisted getting in, and then sit under the water flow. I had to be near to the alarm. And I had a drain and drip that needed constant attention. It was a mammoth task and it had to all be taken slowly and carefully. It was indeed a morning’s work and I felt exhausted after it. Still it was a crowning achievement and I felt so clean , so pleased , as the water poured over me. Putting it together. Getting back to life. Wonderful. Hospital life is like that: crowning glory in the little things of everyday life. The reworking of old habits. A conscious learning of the habits of the body.
Or consider one of the key symptoms of my illness: encephalopathy (a word I could neither say or spell when I was ill!):
Although I had many serious symptoms for quite long periods, the most disturbing was encephalopathy. I must have had it some twenty times. It nearly always came in the night. Initially I was aware of memory loss, confusion; but in later episodes I lost contact with what was going on in the world more or less completely. I entered another world. I can sense that world now – it was a world where nothing worked; everything I touched seemed to break or fall. I would keep looking for the toilet but could not find it. I would try to turn the television off and the switch would not work. I would pull at the towel to get the shower to work! And strange people would be asking me stupid dumb questions (and even so, I did not know the answers!) Oddly, I always knew Everard (my partner) and I would always do what he told me to do (or so he says!)
I gather encephalopathy comes in four stages. At the start, which for me I think could be dated back before my diagnosis in 2005, there are sleeping problems, mild confusions and slight personality changes. In a second stage, developing during 2005, I was often very drowsy, had the shakes (the liver flap) and my memory had lapses. Stage 3 was much more serious and in my last year this was becoming more and more common for me. I would completely lose contact with reality. Memory loss was an early sign; then practical skills like washing and toileting became a problem; but in this stage, I would sometimes not know who I was or where I was. The world became a strange void in which I shuffled and fell. Everard was all I really recognised. He held me together. Stage 4 is identified with bringing on a coma. I am not sure if I ever quite reached this stage- but I certainly went completely out of it a number of times.
Throughout this I seem to lose all the old habits of my body. My body no longer knows how to do those hundreds of little things it has been trained to do. “I pull a towel to make the shower work!” And then my body is perplexed at nothing happening. The body’s lifetime of habits breaks down.
The Acting Body Under Serious Constraint: Power and Agency again
Finally, consider where I locate my sense of agency in all this:
Although I was always at the centre of the control of my body – I was an active agent making decisions about it- I also felt it was invaded by forces outside of my control. The most apparent of these of course is the way the body itself is taken over by symptoms – fatness, itchiness, blackening, bowel alterations, nausea, memory loss, jaundice and so forth. These appear uninvited and seemed to be out of my control. Powerless in the face of illness? At the same time, as I become aware of each symptom I act in the world to try and deal with them – I do exercise, I take drugs, I isolate myself, I rest, and I see doctors and nurses. Perhaps the biggest decision of all was to place myself under the care and control of the doctors and the hospital. Like many, I resisted this for a long while – it was a good six months before I approached a doctor about my symptoms, even though they were quite severe, had worried me and incapacitated me daily. Some people rush to doctors speedily for help; some like me delay and procrastinate; still others avoid the professionals till it may prove late. I seem to have invited the doctors in to inspect my body just in time. My liver it seems was 80% gone- and if I had waited much longer I would have been dead.
I thought of the classic work of Talcott Parsons on the sick role. I was leaving the expectations of everyday life behind me and taking on a new role. It was necessary I felt to place my body in their hands. My body became their body. They did what they had to with it: within minutes they started a regime of inspection – stethoscopes, x rays, blood tests,ultrasound, scanners, liquid draining, medications, observation: my body immediately became an object of professional dominance. I was told many things: but above all, alcohol has damaged my liver and I should never ever drink again. I am told my behaviour must change. And as I am told this, I accept it: at no stage have I ever resisted this instruction. I gave up alcohol there and then and have never returned to it. A deep drinking pattern of my life for 40 years was instantly and wholly brought to an end by a medical warning. But this was not passive acquiescence: I actively chose to accept their guidance. It was not that I did not know of the dangers before – any ‘educated’ person knows too much alcohol damages your liver and I had seen several friends die after warnings from drinking too much. Somehow, I could not stop myself drinking till I was told by the doctor: and only then did I act. Their control gave me the power to stop: on my own I doubt if I would have stopped (and of course I would before long have been dead like my friends). Their professional dominance accepted by me was one key factor in saving my life. I accepted their benevolent power and my new journey began.
Subsequently a power contract had been established and role boundaries established. If I behave and was good, they would do things for me – ultimately I may get a transplant and this may save my life. Being good meant:
1.Absolutely no more alcohol: regular blood checks would reveal any drinking, and any drinking would render me non eligible for a transplant
2.Taking all the medicines and tests as they came along: of course I kept informed of what was happening, but I never said no. I sensed ‘no’ was not an option.
3.Signing permissions and contracts. Regularly I am asked to sign away any legal rights to prosecute if I am damaged by them – surgery, inspections, medications can all bring problems; but part of being ill can mean you sign away your rights.
I have no regrets about entering this sick role and actively acquiescing with their power. I wanted them to help me and knew I had to do certain things. Drinking when you have chronic liver disease is a fool’s game with only one outcome! In my case, I saw their power as benevolent. It made me realize the importance to distinguish coercive power which is benevolent and other forms. In a sense the relationship I had with them was one of democratic, benevolent power: the power of others to help me. But this I could see was a complicated problem.
This is an interesting tacit contract – of course I can stop seeing them at any time. Some friends told me that doctors were dangerous and that I should not trust them; that I should start a course of body oils or alternative medicines. I also knew my sociological critiques of ‘medicine and social control’ and the medicalization of everyday life. I knew about the social regulations of medicine, of professional dominance and the hegemony of medical knowledge. So I could have opted out. Am I glad I did not. In choosing to fully submit to their gaze and surveillance, their daily regulations and probing, their medical knowledges and their professional dominance , my body was ultimately returned to a body that could again function well in the world. The whole experience added to my sense of being a very doubting and skeptical sociologist – aware of my active consent to the power of others. I have been one of the lucky ones: others would not have the same story to tell….
THE GROUNDED STORIES OF EVERYDAY POLITICAL AND ETHICAL BODIES : IN SEARCH OF EMBODIED DIALOGUES
Interactionists tell us that our lives are lived through stories and narratives (we are the narrating animal); that meanings are multiple, ambiguous and contested (we are the conflictual animal); that the human self is constructed through others (we are the animals with the moral selves); that role taking, inter-subjectivities and stories are partially what make us distinctively human (we are the empathetic animal). We have to make sense of our worlds and bodies and we do not agree with each other. Social life is intrinsically political and ethical. Behind much of this process is not simply the question of how do we live our social lives but also: ‘how should we live’? (Addelson, 1994). And here the tales we tell of the grounded moralities of everyday life are our subject matter (Plummer, 2003:ch 7). Much of my earlier work has highlighted the importance of stories, of grounding them into their daily experiences and consequences, of listening and appreciating them, and using them for personal (ethical) and social (political) change.
The body is the base line of our story telling. And here we can return to the powerful work of Arthur Frank who is unhappy with the fact that so much medical and body work only deals with the strictly technical and material side of illness and neglects the equally important side of ‘face to face’ encounters between people confronting illness, relating to others, telling and listening to each others’ stories. Medical knowledge is at best only a partial and limited truth. Frank is much more concerned with the moralities of our lives and our illness – hitherto largely neglected or reduced to the field of study which is too formal and known as bioethics. The story which Frank wants to develop most (and indeed which I find most interesting) is that of the postmodern ill patient who has to take more and more responsibility for the meaning of illness in their life. He sees illness as bringing a kind of ‘postmodern responsibility,(akin to that of a Good Samaritan) who takes their illness seriously and recognises through it the responsibility we have for others. (p13-14). Telling the story of one’s life is in fact for others to hear. Frank urges an ethics of listening ( p25): ‘in listening for the other, we listen for ourselves’.
He also asks if the body can speak?
The body is not mute, but it is inarticulate; it does not use speech, but it begets it. The speech that the body begets includes illness stories: the problem of hearing these stories is to hear the body speaking in them. People telling illness stories do not simply describe their sick bodies; their bodies give their stories their particular shape and direction. People certainly talk about their bodies in illness stories; what is harder to hear in the story is the body creating the person’… (Frank: 1995: p27)
I find this a compelling observation: compelling because it makes me think of how my body helped to create me as I was telling my stories. Initially this was hard to see; but little by little, my body and its failings led me to ponder more and more the meanings and natures of life. In the end, literally, there are only a few questions: how to live and how to die? What is the meaning of all this? And the breakdown of our bodies harbours the potential to help us to think more about this, articulate it more, maybe tell stories about it, perhaps foster others listening to our stories, maybe enhancing a deeper respect and understanding for our common humanities.
In a wonderful image, Frank suggests we should move away from a dehumanizing language (and practice) of patients and professionals (and the much worse current language of consumers and providers); and encourage a language of guests and hosts. Inviting others in, we look after them and care for them. At the core of this thinking is the significance of a sensitivity to others (sometimes called alterity), to dialogue and to the value of generosity. Drawing especially from the work of the philosopher Bakhtin and Levinas, Franks suggests the importance of remoralising the entire spectrum of relations so that people heed the others, listen to each other, and become generous. By generosity, he does not mean financially generous (though at times this may be part of it), but rather with a cultivation of an awareness and kindness towards others: as Levinas puts it- ‘all men are responsible for one another’ (Frank: 2004:p48). We should become engaged in ‘taking upon oneself the fate of the other’ p57. We are generous to others without demanding anything in return. (Generous is a good word, but I think I may prefer the term kindness – as in the kindness of strangers; others might even call this love.)
So here is just a tiny part of the final section of my story where I ruminate at length on the meaning of a life and my body’s breakdown and potential end:
Transplant illness can take you straight to the core of the meaning of life and death: you know you will die if you do not get a new body organ, and you know that in most cases that new organ will come from the dead body of another. Of course, I did not know that immediately: it only became clear over time – so that I can now put it like that so bluntly. But true it is. Transplant folk live with death, just like everybody else, but only more so.
That I might die soon became apparent, and my focus initially was practical. There are bread and butter matters that waiting for a transplant brings up. This was now the time to get my life sorted – to get personal matters done. A will was written and lodged with solicitors. A ‘living will’ was completed … : should the terrible issue of being put on a life support machine, I wanted that plug pulled as quickly as possible. I chose the music for my humanist funeral! (I have since decided this would not be my choice of music after all! How fickle we are).
But wider and deeper issues come with all of this. I did not want to die, but I was ready for it. I may be only 60, but I had done some things and had a good enough life. I would like more of it, please. But if it was not to be, I was ready. I hoped I would die quickly and relatively pain free. And that my loved ones –especially Everard- would get over it reasonably quickly and continue with full lives. I found comfort in a lot of muddled and trite sayings: one day at a time; life is for living; we are all dead in the long run; Life is a beach and then you die. And my musicals: the wonderful lyrics of Stephen – send in the clowns- Sondheim and of John Kander and –Cabaret- Fred Ebb: ‘Life is what you do whilst you hang around for death’. I had liked life; but one must always be ready for death, because that is for sure what will come one day. I had no major unfinished business. After all, all our little deeds amount not to a hill of beans.
Or do they? After surviving this experience, maybe our little daily actions matter every day more than we ever know. Lying there in the midst of serious illness I am reminded of Gertrude Stein’s famous deathbed last line: So what is the question? And two more trite questions came so overwhelmingly to me: what is the meaning of it all, and did I lead a good life? You hardly need to deal with the world’s philosophical torment at this moment of your life. But that is what came to me. And in some ways such questions are inevitably religious – they do with matters of our being in the world, our existences and indeed even our ‘souls’.
So called ‘religious people’ seem to have claimed the dominant discourses and institutions for our dying. In illness, it is so easy for religion to become the quick fix. Matters such as salvation, dying, pain, suffering, and meaning all raise their head. Somehow, most religions seem to take you down the garden path to a version of life after death. And I suppose for the religious, that must be a comfort of sorts (unless you have led the bad life: woe betide your fate then!). But if you don’t like, want or need such populist rationalisations, what are you to do? God kept re-visiting me in hospital; and I kept telling him to go away. But it is hard to avoid. Good friends who knew me well were aware of my long held humanist views and they left religion well alone. Nor did I have to encounter religion in any formal way in the hospital- I had made it clear on all my form filling that I was not a member of any religious faith. And I have to say I was indeed left well alone. I am sure many of the nurses had faiths; but there was no attempt to draw me into this at all. I was not pestered by anyone at my bed side. In fact all of my two and half months in hospital passed without me even glimpsing any religious characters moving around in the wards. I guess the hospital is now a mainly secular place. I hope that those who want last rites and their rituals get them if they want ; but I had made clear that I did not, and they left me well alone. Good news. I think. I was indeed left alone in my non faith and agnosticism.
And after the surgery – when the green light for ‘more life please’ is on – death takes on another shape. For now, the issues become the death of the other – the person whose organ you will now come to live with. What is the nature of the body of the other which is now about to enter your own body – its spirit, its soul, its goodness or badness?
I meander on like this for some time- even eventually ending with a full blown credo on the meaning of life, which I will save you from here! The point is that the body here becomes deeply reflective of its own significance in the universe. We can do this at any time of course but when the body is under siege, such matters become more pressing. The close proximity of material and ideal, individual and social, core and flux, agency and determinism are always apparent in a breathing, fleshy, living body.
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 In what follows, the italicized quotes are drawn from my longer unpublished manuscript: A Transplanted Life (2008), some of which is accessible on my web site kenplummerandeverardlongland.info
 This is not the place to develop ideas on the sociology of transplants but I am hoping to do this in a later article. Transplants have developed a social research tradition from, Fox & Swazey (1978) to Sharp (2006).