Symbolic Interactionism, Narrative and the Sick Body: Personal Reflections

 Ken Plummer  Emeritus Professor of Sociology, University of Essex

Centre for  Narrative Research , University of East London. March 23rd 2011

 Stories animate human life; that is their work. Arthur Frank: Letting Stories Breathe 2001: p3

 We need stories in order to live.  Joan Didion (book of that title)

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).

1. ABSTRACT:

Between 2004 and 2007, I was diagnosed with ‘end stage alcoholic cirrhosis of the liver’ and had successful transplant surgery. My aim in this talk is to bridge my personal experiences of the body in illness with symbolic interactionist theory. I confront many things about the body simultaneously: the problematic  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 presentations; and finally to provide a few ‘texts’ of  own experiences of liver illness and transplant surgery. This is a lot to do in a short time, and I will be illustrative, exploratory, partial and limited.

2. STRUCTURE OF TALK

1. Introduction: My illness, my story and the multiple meanings of sickness

2. Return to Symbolic Interactionism – 21st Century Style

Grounded theory, narrative and the eternal philosophical problems of the body

3. A narrative example

4. Four themes:
(a) Meaning and materialism

(b) Process and habit: Embodiment and The Habitual Body

(c) Individual and others

(d) Politics, ethics and the meaning of the whole damned thing

 

 

 

 

 

 

 

 

3. THE FIFTY OR MORE MEANINGS OF ILLNESS….  

 

My auto/ethnographical notes captures what I now call a Total Life Episode. As I wrote between October and December 2007, over 50 themes emerged -from illness as everyday life to illness as stigma. Sometimes metaphors. There are stories to be told about each. Illness can be seen as:

AS AN ILLNESS AS A MEANING AS A NARRATIVE/ STORY
AS SOCIAL WORLDS AS UNCERTAINTY AS IDENTITY/SELF
AS A DIARY AS AN OPPORTUNITY AS MOMENTS
AS A POETIC AS TIME AS PLACE
AS A CAREER AS STAGES AS FATEFUL MOMENTS
AS PRIVILIGE AS CONTINGENCIES AS EMBODIMENT
AS HOSPITALIZATION AS HALLUCINATIONS AS MEETINGS
AS OTHER PEOPLE AS ALTRUISM AS AN ADVENTURE
AS STIGMA AS CRIME AS A WEB SITE
AS FATE AS A TIME FOR THINKING AS DEATH
AS A  MARKET AS REMISSION AS EXPLOITATION
AS CITZENSHIP AS HABIT AS GENEROSITY
AS HUMOUR AS PROGRESS AS OPTIMISM
AS GOOD DAYS AND BAD DAYS AS A TOTAL LIFE EPISODE AS ETHICAL NARRATIVE
AS MUSIC AS SUFFERING AS EVERYDAY LIFE
AS DESPAIR AS ANGER AS JOY
AS MONEY AS CYBORG AS …….. you add!

4. POETICS:

Feet gone black,
Bloated gut.
Cramp attack,
Bowels shut.
Eyes sunk deep
Liver rotting.
Jaundice weep,
Blood clotting.
Red blood spewing.
Nauseous pain.
Stinky pooing.
Toxined brain.
Red vein spiders,
Body thinning.
Shivering  sliders
Itchy skinning.
Dark stain pissing.
Brain gone missing.
Mouth all drying.
Am I dying?

And 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.

 

5. CORE EXAMPLE THEMES: EMBODIMENT AND THE PRAGMATIC BODY

 

INTERACTIONIST THEMES THEORETICAL/PHILOSOPHICAL ISSUE EMERGING IDEAS
1. Meaning and materialism Mind/Body Embodiment
Material bodies & Interpretive bodies

The Narrating Body

2. Process Permanence and change; essence and ephemera; continuity and contingency The Habitual Body
3. Interaction/others Atomism/Holism; Action/Structure; Individual/Society The Relational Body
4. Pragmatic ethics and politics Abstracted principles/grounded moralities and politics The Flourishing/Just Body
5. Intimate Familiarity Scientific distance/ human engagement The Grounded Body

 

 

6. A TEXT: A fragment of my own story:  my multiple transforming  bodies

 

Being ill brings multiple bodies. At various time 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 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 acites 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 long hour’s 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 body encephalopathic body was a slow-moving, memory-less and utterly estranged sick body. 

 

My hospital body was something else. Here I literally place 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 party 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 transplanted body.(Plummer, 2009: & extracted from Turner: The Handbook of the Body, forthcoming

 

 

7. SOME REFERENCES

 

Discussions of Narratives and Illness

Arthur Kleinmann.       The Illness Narratives: Suffering, Healing And the Human Condition ((1988) Basic Books  – the front runner book. Deeply influential, and he has published a lot more
Howard S.Brody           Stories of Sickness. Oxford University Press (2003, 2nd edition).
G.Thomas Couser         Recovering Bodies: Illness, Disability and Life writing (1997)University of Wisconsin Press.
Rita Charon.                Narrative Medicine: Honoring the stories of illness (2006) Oxford.

 

 

The work of Arthur Frank

Frank, Arthur. 1991. At the Will of the Body: Reflections on Illness. Boston: Houghton Mifflin.
_____. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press.
———— The Renewal of Generosity: Illness, Medicine and How to Live (2004) Chicago
———-Letting Stories Breathe  (2010) Chicago


‘Social ‘ Classics of Narrative Medicine written by social scientists/ academics
Julius Roth                   Timetables: Structuring the passage of time in hospital treatments and other careers Bobbs Merrill (1963)
Irving Zola                   Missing Pieces Temple University Press (1982)
Arthur W.Frank           At the will of the body: Reflections on illness Houghton Mifflin 2002
Ann Oakley                 Fracture: Adventures of a Broken Body  Polity (2007)
Havi Carel                    Illness  Acumen Press (2008)

 

A few other classics
Virginia Woolf             On Being Ill (1930)  Masschusetts. Paris Press 2002.
Anatole Broyard          Intoxicated by my illness (1992). New York: Clarkson Potter
Audre Lorde                 The Cancer Journals (1980) San Francisco: Aunt Lute Books
C.S.Lewis                     A Grief Observed

 

A small sample of illness stories

Barbara  Peabody         The Screaming Room: A Mother’s Journal of her son’s struggle with AIDS. NY. Avon (1987)
Paul Monette               Borrowed Times: An AIDS memoir  (1988) NY: Harcourt
Jean-Dominique Bauby             The Diving-Bell and the Butterfly. (2002/2008) London: Harper
Ruth Picardies (1998)   Before I say Goodbye  (1998).Middlesex: Penguin (story of a breast cancer in diary form and originally published in the Guardian)
Gillian Rose                  Love’s Work Vintage (1997)
Lance Armstrong (with Sally Jenkins)  It’s not about the bike: My journey back to life (2001) London: Yellow Jersey Press  A sporting legend is diagnosed with testicular cancer  and gives ‘ an inspirational story of one man’s battle against the odds’.
Ulla-Carin Lindquist     Rowing without oars  (2005) Hodder. The last year of a dying woman.
Federica Caraccioli       Alzheimer: A Journey Together (2006) London: Jessica Kingsley .  A carer tells her story of looking after a husband with Alzheimer’s.

Paul Robinson              ‘My afterlife’ in his Opera, Sex and Other Vital Matters Chicago (2002)
a short article by a prominent academic detailing his liver story in the 1980’s.

Studies of  Donor- Transplant

Renée C Fox & Judith P.Swazey. The Courage to Fail: A Social View of Organ Transplants and Dialysis  2nd ed  1978  – the classic story
Lesley Sharp . Strange Harvest: Organ Transplants, Denatured Bodies and the Transformed Self (2006) University of California Press  – excellent major new study with focus on donors
Kieran Healy. Last Best Gifts: Altruism and the Market for Human Blood and Organs (2006) Chicago – main focus on the issue of altruism and the market


Directions for a sociology of donor-transplant

Richard Titmuss. The Gift Relationship(1971) Allen-Lane. The truly classic and influential text.
Nikolas Rose    The Politics of Life Itself: biomedicine, power and subjectivity in the twenty first century (2007) Princeton Latest account but does not look at transplants
Nancy Scheper-Hughes with Loic Waquant eds. Commodifying Bodies (2002) Sage Crucial for the wider exploitative context
Ken Plummer. Intimate Citizenship (2003) Seattle: University of Washington Press My own account written before I was diagnosed and which only lightly touches on it.

 

Auto/ethnography

Carolyn Ellis Final Negotations: A story of love, loss and chronic illness  Philadelphia: Temple University Press (1995) – classic early account and she is a leader in this field
Carolyn Ellis & Art Bochner Composing ethnography 1996 – series of essays ‘doing it’
Special issue: Journal of Contemporary Ethnography (Vol 35 No 4, August 2006)


Body, emotion, self

Erving Goffman . Asylums (1961/Penguin:1968). And see Stigma (1963/Penguin:1968) Classics!

Crossley, Nick  (2001)  The Social Body : Habit, identity and desire. London: Sage

———–(2006) Reflexive Embodiment  Sage  ??

———-(2010) Toward Relational Sociology    Routledge

Ian Burkitt Bodies of Thought: Embodiment, Identity and Modernity (1999) (one of many, but very integrative)

Thomas J Scheff . Goffman Unbound!(2006) Paradigm (quirky: Goffman rules and shame is the key to life)

James, Alison & Jenny Hockey  2007  Embodying Health Identities. Basingstoke: Palgrave.
Mol, Annemarie  The Body Multiple: Ontology in Medical Practice. 2002  Duke University Press

Sondheim, Stephen  2010  Finishing the Hat

Strauss, A. and Glaser, B. 1977: Anguish: A Case Study of a Dying Trajectory. Oxford:Martin Robertson.

Turner, Bryan. 1984. The Body and Social Theory. Thousand Oaks, CA: Sage.

Waskul, Dennis and Pamela van der Riet. 2002. “The Abject Embodiment of Cancer Patients: Dignity, Selfhood, and the Grotesque Body.” Symbolic Interaction, 25 (4):487– 513.

Waskul, Dennis  and  Philip Vannini eds (2006) Body/Embodiment: Symbolic Interaction and the Sociology of the Body. Ashgate.

OTHER:
Latour, Bruno  2005 Reassembling the Social: An Introduction to Actor-Network Theory.  Oxford: Oxford University Press

Plummer, K. (ed.) 1991: Symbolic Interactionism. 2 vols. Aldershot: Elgar.

2000 2nd ed ‘Symbolic Interactionism in the Twentieth Century’ in Bryan S. Turner ed   The Blackwell Companion to Social Theory. Oxford: Blackwell p193-222

———–2001   Documents of Life 2 : An Invitation to a Critical Humanism. London: Sage

———  2005 ‘Critical Humanism and Queer Theory: Living With the Tensions’ In N.K.Denzin and Y.S.Lincoln eds 2005 The Sage Handbook of Qualitative Research 3rd edition. London:  Sage  p357-375

—— 2003 Intimate Citizenship  Seattle: University of Washington Press

—— 2009 A Transplanted Life: unpublished memoir

——-2010  Sociology: the Basics  London: Routledge

1997Reynolds, Larry T. & Nancy J.Herman (2003) Handbook of Symbolic Interactionism London: Alta Mira /Rowman and Littlefield.

 

 

 

 

8. Being Seriously Ill -The Everyday Body of Illness

Some physical symptoms of my illness: end stage alcohol linked liver disease. I had them all at various times and to varying degrees. This excludes psychological and social issues and all the transplant and post transplant issues (which would be another equally long list I describe in the story!).

  SYMPTOM EMBODIMENT – BODIES IN PROCESS
1 Lethargy Sleeping and dozing all the time  – can’t do much or focus; slowness of movement and mind.  DROWSY, TIRED KEN
2 Jaundice Yellow look in skin and eyes JAUNDICED, YELLOW KEN
3 Ascites Huge abdomen; needs draining FAT, GROTESQUE, CUDDLY KEN
4 Nausea and vomiting VOMITING KEN Sick feelings, violent and long, noisy sick attacks
5 Dehyrdration Need tablets and water DRY, THIRSTY, WATER KEN
6 Constipation Creates a problem with its opposite- and getting a balance. Too much of this and serious problems await as toxins get into brain…. TOILET KEN
7 Internal bleeding ( GI bleed) Identified especially when vomiting blood VOMITING KEN
8 Encephalopathy ‘losing your mind’ – from poor memory and general drowsiness through full scale confusion and hallucination to  borderline coma. My major serious symptom with growing frequency and seriousness, finally lasting three days. OUT OF MIND KEN. VERY SCARED AND VERY SCARY KEN
9 Portal Hypertension Did not identify this myself – but had it
10 Blood coagulation – Clotting problems: for example- trips to dentist could lead to heavy bleeding etc BLEEDING KEN
11 Temperature control Feeling cold all the time: fires on in the summer! Doubly wrapped.   FREEZING KEN
12 Muscle Loss Thin arms and legs: ugh! SKINNY SICK KEN
13 Sleep reversal Very poor sleeping and poor sense of day and night INSOMNIAC KEN
14 Oesophageal varices Links to bleeding BLOTCHY KEN
15 ‘Spidery blemishes’ Nasty little red spots all over the body BLOTCHY KEN
16 Loss of appetite And very odd eating habits start to develop- salt intake becomes a worry which disrupts most standard eating patterns anyway. Give up drink. FOOD FUSSY KEN
17 Itching Never scratch them! IRRITATED KEN
18 Cramps Often all night long at some periods – very painful AGONY, SCREAMING  KEN
19 Dark urine Always  TOILET KEN
21 Dark stool (indicates blood) This is the one symptom that I do not recall having- although I certainly had the fear of this and looked regularly
22 Diahorrea The balancing act with constipation! TOILET KEN
23 Pruritus Feet swelling (and looking very black!) BAD BODY KEN
24

25

Perionitis

Infection

Pains and vomiting

Increased vulnerability to infection VULNERABLE KEN

   
AND: Cyborg Ken, Hallucinatory Ken, Hospital Body, Walking Body,  Medicated Body, ‘Bagged up ‘Body, Ghostly body……………….