SYNAPSE Spring 2009 - acpin

people kind of moving about you think “How do
they do that, isn’t that clever”. You know stand up
and you don’t fall over and you move.’
An empathic or phenomenological reading of
this extract might suggest that ataxia is experienced
as primarily a physical phenomenon. Bill’s
account seems to highlight well known impairments
associated with ataxia: uncoordinated
movement; ‘almost like being drunk all the time’
and dysarthria; ‘by the time it emerges from your
mouth it’s kind of clumsy and awkward’. Bill’s
bodily experience is foregrounded: asked what it
is like to live with ataxia he speaks of the physical
manifestation of the condition. Staying with the
empathic reading of the narrative there is a suggestion
that Bill has lost the sense of his
comfortably familiar body; ‘It’s awkward, ungainly
and painful’. However, Bill’s use of the terms
‘thick’ and ‘knobbly’ suggest, at a hermeneutic
level, a qualitative change in his experience of his
corporeal identity; ‘thick’ and ‘knobbly’ perhaps
signal a sense of bodily alienation. There is an
impression in the narrative that the physical experience
of ataxia is of existential moment to Bill, it
is ‘looming large’; what was once taken for
granted is now problematic and occupies his
attention. His once dependable body now betrays
him; ‘a thing making perfect sense when you say it
in your head, but by the time it emerges from your
mouth it’s kind of clumsy and awkward and … the
same with moving about’. He reflects that he ‘can’t
do things quickly or arrogantly’; suggesting
perhaps a nostalgic fondness for a particular,
perhaps his particular, way of moving or being. A
deeper reading of this extract might suggest that
in his lived experience of ataxia his natural way of
being is constrained and this robs him of certain
existential possibilities. In comparison to his own
uncomfortable, unpredictable and in some ways
unrecognisable body he now also sees others’
bodies as objects of wonder; ‘when you see people
kind of moving about you think ‘How do they do
that, isn’t that clever’. So for Bill the lived experience
of ataxia seems to encompass both a physical
assault on his body as well as an assault in an
existential sense, limiting his possibilities, his existential
freedom for action, which is brought into
sharp relief when he turns his gaze to the unencumbered
actions of others.
To develop this interpretation, further evidence
would be needed from elsewhere in the data. In
this next extract Bill described his experiences of
family mealtimes:
‘I mean the big frustration is not being able to
eat and speak at the same time, because I’m used
to kind of having long conversations during meals
and you know you would like to say things and
join in, argue, whatever. When you’ve got to sit
quietly it’s quite difficult at times. Because you
think of exactly the right thing you’d like to say
and after the meal you say “You know when you
said such and such, well how about …” then it
didn’t work, the moment was lost.’
Again, here, Bill starts with a straightforward
description of the physical challenges of ataxia,
the difficulty of combining eating with talking,
however, the main body of the extract quickly
moves towards explaining the meaning of this
experience. A descriptive analysis of the text
would suggest that two physical impairments
combine to rob Bill of a valued occupation, active
involvement in dinner table debates; ‘I’m used to
kind of having long conversations during meals
and you know you would like to say things and
join in, argue’. A deeper reading might propose
that sitting quietly is not Bill’s natural way of
‘being-in-the-world’; it is a way of being imposed
by ataxia, ‘you’ve got to sit quietly’. The final sentence;
‘After the meal you say ‘You know when you
said such and such, well how about …’ then it
didn’t work, the moment was lost’, speaks for Bill’s
attempts to recapture this specific opportunity but
also reconnects with his past – it seems that he
has tried this way of picking up lost conversations
many times–- and possibly foreshadows his future
endeavours. So what seems to be glimpsed in this
extract is the reiteration of the physical assault of
ataxia on the body but also, as with the previous
extract, the sense of diminished existential possibility,
a sense of disconnectedness and lost
opportunities for action-in-the-moment.
This analysis of the two extracts suggests that a
theme constructed around the interaction of
bodily and worldly disruption could be offered as
an interpretation of Bill’s experience of living with
ataxia. Following a more detailed articulation of
this particular theme, the next step in the analysis
would be to look for similarities and differences in
other participants’ experiences (for studies
greater than n = 1) and to discuss the findings
with reference to the existing literature in order to
critique or illuminate what is already understood
about a particular topic (Smith 2004). As very little
has been written about the experience of living
with cerebellar ataxia, and for the purposes of this
paper, the analysis will be briefly discussed with
reference to literature concerned with the lived
experience of multiple sclerosis.
For Bill the lived experience of ataxia particularly
in the first extract was formulated in terms
of the impact of the condition on his body and the
relationship between his body, himself and others.
Both Finlay (2003) and Toombs (1995) have
reflected on the work of the philosophers
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