Louise Locock

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Biographical abruption, disruption and repair
narratives of people living with Motor Neurone
Disease

• Louise Locock
• Carol Dumelow
• Sue Ziebland

Department of Primary Health Care, University of
Oxford (part of National School for Primary Care
Research)
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What is DIPEx?

• Personal experiences of health and illness
• Qualitative research studies, University of
  Oxford plus others
• Multimedia web resource www.dipex.org
• Video, audio and text illustrations
• Links to information and other resources
• Freely available to public and professionals

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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

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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
  identity
• 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

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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

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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 occasion

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Key facts about motor neurone disease (MND)

• Rare 1-2 in 100,000 per year, 5,000 people
• Hard to diagnose (different types of onset)
• More common in men, and over age 50
• Causes unclear, limited treatment

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Key facts about motor neurone disease (MND)

• Almost always terminal progressive but
  unpredictable course
• Survival average 2-5 years
• Can involve emotional lability, cognitive
  impairment
• Loss of mobility, speech, eating, breathing
  ultimately respiratory failure

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Biographical disruption/repair and MND

• 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 onan
• embodiment of hope against the odds

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Disruption

• 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 beat work as
  a civil engineer, looking forward to coming home
  and playing football with my son.

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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

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Biographical abruption

• I couldnt cope with anything that was more than
  a fortnight away. Nobody could sort of plan that
  in three weeks time wed go down to my
  daughters or up to my other daughters or
  whatever it might be. It was, Dont want to
  know. Im not going to be here in three weeks.
  Im terminally ill. Cant 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 didnt want to know anyone, just felt sad,
  tears in my eyes. Vim

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Biographical abruption
The news they delivered was crushing,
devastating. I felt my whole world collapse in
an instant, really, wasnt it? It just couldnt
have been real. The very first thing thats
ripped away from you is hope. Thats pretty
hard. Michael
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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
  madness
• But depression and low mood common

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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

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Keep my head in the sand theory

• I know whats happening. I know roughly what my
  life span is. Ive got obviously a good idea of
  the process and how my life is going to end, so I
  dont need to know any more than that. Kim (an OT)

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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 http//www.build-uk.net/camp
  aigning)

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Repeated repair process

• We just try to keep it in a box somewhere. And
  all of a sudden, its 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 its not one jack thats coming
  out the box - theres ten of them Gill and Mike

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The old normality - driving

• Hal, has affected speech
• Driving is one of my I wouldnt say hobbies
  but I like vehicles. And I feel totally normal
  behind the wheel. I dont have to speak, and its
  the one situation where certainly at the moment
  I totally feel normal.

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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, dont we? Christmas time, Ken made up
  jokey labels and stuck them on the bottle - and
  put a label on your Zimmer frame, didnt 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, dont we? Chris, Kens wife

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New ways of doing old things

• Im 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
  its not giving up, its doing stuff, you know.
  Phil

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New ways of doing old things - computers

• Email own voice, humour, conversation
• Internet supporting others, managing own
  condition
• 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
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New things to do sometimes through gritted
teeth?

• Speedy formerly a keen athlete
• This craft work and stuff, I dont really like
  it very much but never mind, youve got to find
  something else to do.And whatever it is, you
  know, youve got to make the damn best of it.
  And if its not quite your cup of tea, so what?
  Its something. I mean, Ive taken up the piano.
  Im not good on the piano, Im not a musical
  person, but I still do it because for that hour
  Im 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.

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Living life to the full heightened normality?
In the last three years weve had a
round-the-world trip, weve been to Malta, South
Africa, a cruise in the Caribbean, a cruise in
the Mediterranean So Im certainly making every
day count. Hal, MND Association slogan
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The language of battle and resistance
David Nivens last defiant gesture our symbol
of hope.
So where do I draw the strength from?
Belligerence. Sod it, Im just going to get on
with it. Pauline
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Finding new, positive meaning

• Its made us closer.And it was quite funny,
  because when you get old you dont really look at
  each other any more in that way. And I thought,
  Oh, gosh, hes not seen me naked for years. I
  dont know whether Ill like that. But anyway
  he said, Well, give me a try before you get,
  start getting other people in. Were a lot
  closer I suppose, because Ive let him in.
  Because I was so independent, and you do get
  independent, dont you? Sylvia

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A restored self

• Her husband became abusive and left herI had
  myself down as physically repulsive and didnt
  believe any man could find me attractive again. I
  was wrongI met a man who was able to see beyond
  my illness and see my personality. We have a sex
  life and dont let my disabilities get in the
  way. He makes me feel beautiful and I dont feel
  ill when Im with him. Sarah

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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 life