Biographical abruption_ disruption and repair – narratives of

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					      Biographical abruption,
      disruption and repair –
   narratives of people living with
      Motor Neurone Disease
                                         Louise Locock
                                         Carol Dumelow
Department of Primary Health Care,
                                          Sue Ziebland
University of Oxford (part of National
 School for Primary Care Research)
            What is DIPEx?
• Personal experiences of health and illness
• Qualitative research studies, University of
  Oxford plus others
• Multimedia web resource –
• Video, audio and text illustrations
• Links to information and other resources
• Freely available to public and professionals
            DIPEx methods
• Maximum variation sample (40-50) - UK
• Narrative interviews, at home – ‘tell me
  your story’ – then semi-structured
• Thematic analysis  25-30 ‘Talking about’
  summaries illustrated by video, audio and
  written clips
• Expert advisory panel
• Peer review articles – clinical/social science
       Theoretical background
• Bury 1982 - chronic illness (rheumatoid
  arthritis) as biographical disruption, both
  practical and social
• Charmaz 1983 – chronic illness and ‘loss of
  self’: social isolation, altered expectations and
• But is it always disruptive? May be seen as
  normal e.g. in old age (biographical continuity
  or flow)
• May be less salient than other problems in life
           Biographical repair
• Mobilising resources - ‘attempt to normalise in
  the face of disruption’ (Bury 1982)
• ‘Narrative reconstruction’ (Williams 1984):
  strategies ‘to reconstruct a sense of order from the
  fragmentation produced by chronic illness’ and
  ‘reaffirm the impression that life has a course and
  the self has a purpose’
• A ‘restored self’ (Charmaz 1987) - sense-
  making and renewing identity and purpose
 Wounded storyteller – Frank 1995,
         1993, 1997 etc
• Narratives of restitution (focus on
  recovery); chaos (despair and loss of hope);
  and quest (new insight, drawing positive
  meaning from illness, personal change)
• Illness as epiphany – a phoenix emerges
• Illness as moral occasion – finding ways of
  being ‘successfully ill’ and ‘rising to the
   Key facts about motor neurone
          disease (MND)
• Rare – 1-2 in 100,000 per year, 5,000
• Hard to diagnose (different types of
• More common in men, and over age 50
• Causes unclear, limited treatment
    Key facts about motor neurone
           disease (MND)
• Almost always terminal – progressive but
  unpredictable course
• Survival average 2-5 years
• Can involve emotional lability, cognitive
• Loss of mobility, speech, eating, breathing –
  ultimately respiratory failure
 Biographical disruption/repair and
• Theories derived from chronic illness –
  can they make sense in context of MND?
• Uncertainty over symptom development
  and life expectancy – MND as both
  terminal illness AND longer term?
• Stephen Hawking 40 years on…an
  embodiment of hope against the odds
• Clear parallels with chronic illness experience
• Physical and social disruption – mobility,
  speech, personal care, work, social life….
• ‘A demeaning illness’ (Carus, BMJ 1980)
  I wish with all my heart and soul that I had not
  written this paper, for then I should still be where
  I spent 5 years’ training to be…at work as a civil
  engineer, looking forward to coming home and
  playing football with my son.
       Biographical abruption?
• Diagnosis as ‘death sentence’ - life is over
  already, no point planning or hoping
• Interviews at different stages - most (not all)
  had moved on to a degree from abruption, but
  periods of intense despair might recur
• Stories of others ‘stuck’ in that stage as part of
  their own narrative reconstruction
• One potential volunteer withdrew
• Some carers reported their relative not able to
  come to terms with it
Biographical abruption
      I couldn’t cope with anything that was
      more than a fortnight away. Nobody
      could sort of plan that in three weeks’
      time we’d go down to [my daughter’s] or
      up to [my other daughter’s] or whatever it
      might be. It was, “Don’t want to know.
      I’m not going to be here in three weeks.
      I’m terminally ill. Can’t you understand
      that?” Phil

      I think six months I was like in a corner
      crying ….I was just, was going to sleep
      by myself, sort of didn’t want to know
      anyone, just felt sad, tears in my eyes.
Biographical abruption
          The news they delivered
          was crushing, devastating.
          I felt my whole world
          collapse – in an instant,
          really, wasn’t it? It just
          couldn’t have been real….
          The very first thing that’s
          ripped away from you is
          hope. That’s pretty hard.
          Biographical repair
• Powerful need for many to restore positive
  outlook and regain sense of normality
• Reducing distress for others
• Responding to social expectation
• And above all self-preservation: “you have
  to come to terms with it - the other way lies
• But depression and low mood common
          Seeking normality
• ‘Head in the sand theory’ – deny or ignore
• Trying to keep doing the same things –
  keeping hold of the old normality
• Finding new ways of doing the old things
• Finding a new course
• Packing in as much as possible (e.g.
  holidays and trips)
• Fighting, active resistance
‘Keep my head in the sand theory’
I know what’s
happening. I know
roughly what my life
span is. I’ve got
obviously a good idea
of the process and how
my life is going to
end, so I don’t need to
know any more than
that. Kim (an OT)
    Positive attitude or denial?
  “It is not being in Denial. No, we do not
  have our head in the sand…. We have made
  a deliberate and conscious decision to live
  on the sunny side.”
• (See ‘MND – A PALS Perspective’ slides
  by Peter Charman and others on
          Repeated repair process
We just try to keep it in a
box somewhere. And all
of a sudden, it’s a bit like
a jack-in-the-box. It pops
its head up and then you
have to deal with it, and it
goes back down again.
And the horrible thing
with motor neurone is that
sometimes it’s not one
jack that’s coming out the
box - there’s ten of them
Gill and Mike
     The old normality - driving
Hal, has affected speech
Driving is one of my – I
wouldn’t say hobbies –
but I like vehicles. And I
feel totally normal
behind the wheel. I don’t
have to speak, and it’s
the one situation where –
certainly at the moment –
I totally feel normal.
  The old normality - eating and
   socialising – and humour…
Ken, has no speech and uses a PEG
We tend to treat it as a meal, so that Ken sits at the
table with me and our son. So we sit and eat our
meal and Ken does his feed. We joke about it,
don’t we? Christmas time, Ken made up jokey
labels and stuck them on the bottle - and put a
label on your Zimmer frame, didn’t you? Said
people could hire it if they had too much to drink,
and things like that. We try to sort of lead a
normal life, don’t we? Chris, Ken’s wife
New ways of doing old things
          I’m a fisherman….My wife piles
          me in the car, gets the wheelchair
          out, wheels me over to the bank,
          parks me up, goes back and gets
          my tackle, helps me set the tackle
          up, and we spend the day fishing
          ….She reads a book and I sink
          some worms….But it’s not giving
          up, it’s doing stuff, you know. Phil
    New ways of doing old things -
• Email: ‘own’ voice, humour, conversation
• Internet: supporting others, managing own
• Voice software
                          ‘I really do miss not being able
                          to laugh or call or shout, but
                          whilst I have the computer in
                          front of me it does help me to
                          forget that I cannot speak, and
                          I feel less frustrated.’ Sue
  New things to do – sometimes
     through gritted teeth?
‘Speedy’ – formerly a keen athlete
This craft work and stuff, I don’t really like it very
much but never mind, you’ve got to find
something else to do….And whatever it is, you
know, you’ve got to make the damn best of it.
And if it’s not quite your cup of tea, so what? It’s
something. I mean, I’ve taken up the piano. I’m
not good on the piano, I’m not a musical person,
but I still do it because for that hour I’m thinking
about that piano….Or the knitting, you know, I
manage to knit something, and now I have to go to
embroidery every Thursday, which is dead boring.
Living life to the full – heightened
                 ‘In the last three years we’ve
                 had a round-the-world trip,
                 we’ve been to Malta, South
                 Africa, a cruise in the
                 Caribbean, a cruise in the
                 Mediterranean… So I’m
                 certainly “making every day
                 count”.’ Hal, MND
                 Association slogan
The language of battle and resistance

           David Niven’s ‘last defiant gesture
           …our symbol of hope’.

         So where do I draw
         the strength from?
         “Sod it, I’m just
         going to get on
         with it.” Pauline
       Finding new, positive meaning
It’s made us closer….And it
was quite funny, because
when you get old you don’t
really look at each other any
more in that way. And I
thought, “Oh, gosh, he’s not
seen me naked for years. I
don’t know whether I’ll like
that.” But anyway he said,
“Well, give me a try before
you get, start getting other
people in.” …We’re a lot
closer I suppose, because I’ve
let him in. Because I was so
independent, and you do get
independent, don’t you? Sylvia
A restored self

  [Her husband became abusive and left
  her]…I had myself down as physically
  repulsive and didn’t believe any man
  could find me attractive again. I was
  wrong…I met a man who was able to
  see beyond my illness and see my
  personality. We have a sex life and
  don’t let my disabilities get in the way.
  He makes me feel beautiful and I don’t
  feel ill when I’m with him. Sarah
              Summing up
• Theories of biographical disruption and
  repair make sense in the context of MND
• Biographical abruption distinctive phase
• But biographical repair is not only possible
  but important for making sense of an ending

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