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Telling
the Story of Illness and Death
SAGE Publications, Inc.200610.1191/0967550706ab041oa
AnneGrinyer
Lancaster University, UK, a.grinyer@lancaster.ac.uk
Address
for correspondence: Anne Grinyer, Institute for Health Research, Alexandra
Square, Lancaster University, Lancaster LA1 4YT, UK; Email: a.grinyer@lancaster.ac.uk
This paper is based on
an analysis of narratives written by parents — mainly mothers — of young adults with cancer, many of whom died. The paper is situated within
the context of literature on the role of writing in a `confessional culture'
and this is contrasted with the limited opportunities to talk about death
in modern western society. An analysis of the narrative material considers
the motivation for writing about illness and death and the need for non-professional
writers to legitimate such an activity. The form the writing takes and the
way in which it is presented are discussed, as is the potential for the writing
being therapeutic. Among the conclusions reached are that to some extent
a person who has died can live on through the telling of their story, thus
enabling `retention' of the dead through a continuing bond. Limited opportunities
to talk about grief may be assuaged by writing and the resulting account can
act as a lasting memorial while also being written to help others. Nevertheless,
despite the evidently therapeutic nature of writing in a culture that can
be increasingly defined as `autobiographical', writing may need legitimating — in this case by being a contribution to research — in order for the
writer to feel justified in undertaking an activity that can be perceived
as the preserve of the professional.
INTRODUCTION
The narratives that form the basis of this paper are written by the parents
of young adults with cancer – most of their sons and daughters died
from the illness – thus they are narratives of illness and death. The
narratives have been analysed elsewhere in terms of the life-stage issues
they address (Grinyer, 2002; 2004a; 2005b; Grinyer and Thomas, 2001; 2004).
However, the embedded material on the reasons for writing and the effects
that writ- ing had on contributors, coupled with the form of the writing,
appeared to be of significance. Thus, an additional layer of analysis has
been applied to the narratives to understand better the meaning that writing
has under such circumstances.
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After
a discussion of literature that addresses the meaning and purpose of writing,
and its relationship to grief and loss, the paper presents an overview of
the methods used to gather the narrative data. It then continues by addressing
the themes raised by the form and embedded content of the nar- ratives in
terms of the glimpse given to the writing process, the motivation for writing
and the need for legitimacy, even in an increasingly `confes- sional culture'
where the opportunities to talk about death may be limited. According to Garro
and Mattingly (2000: 1), narrative is a fundamental human way of giving meaning
to experience and is suggested by Bruner (1986: 11) both to order experience
and construct reality. Ahmed and Stacey (2001: 1) claim that the desire to
testify pervades contemporary culture; thus, witness is borne to traumas of
many kinds. Similarly, Frank (1995) argues that people are motivated to tell
their stories to bear witness and to act for others and that story telling
is informed by a sense of respon- sibility, not only to work out the story
tellers' own changing identities but also to act as a guide for others who
will follow them. Telling stories allows narrators to communicate significant
events (Rosaldo, 1986) and lets the reader or listener glimpse what it is
like to be in the world of the teller. The language is frequently `image dense'
and those that feature highly charged human dramas tend to engage the audience
in an imaginative journey into the `story world' (Garro and Mattingly, 2000).
But these authors acknowledge the difficulty of definition, given that stories
are `as common as air' (2000: 9) and ask `when are we not telling or hearing
stories?' Indeed Plummer (2001: 78) claims that the telling of life stories
has become such a `voluminous business' that it could be argued that we live
in an auto/biographical society where autobiography is becoming ubiquitous
in everyday life in a variety of forms from TV talk shows to CVs. It is not
just `life stories' that flourish, but also `death stories'. In what Hawkins
(1990) describes as a striking reversal of an absence of writings about death
in the early half of the twentieth century, there is now accord- ing to her
almost an obsession with death. These pathographies describing death appear
in a variety of publications from the learned and scholarly to the self-help
manual. Personal accounts of the illness journey have been produced by such
notable writers as Ruth Picardie (2000) and John Diamond (1999), both facing
death themselves. Books written by parents after the death of a child include
Grant's (2002) on her son Alexander's illness and death from osteosarcoma
and Rose's (1997) on his son David's illness and death from chondrosarcoma.
Both are personal testimonies written after the death of their sons. Thus
it seems that `death writing' or `pathography' (Holloway, 1990; Walter, 1996)
is a growing genre. Walter (1994) has analysed the significant genre of deathbed
or bereave- ment `pathography' which consists of confessional accounts, often
in the
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form
of such books that chart the experience of terminal illness and loss. This
may reinforce the notion of a confessional culture, but as Frank (1995: 7)
says cultural legitimacy is needed for the expression of `this voice'. In
addition to published material much writing exists that does not appear in
the public domain. For example, many journals written during bereave- ment
or intense grief may not be intended for publication (Holloway, 1990) and
this may be in part because the writer is not a professional writer and thus
does not believe that they have cultural legitimacy. So is writing perceived
as the preserve of writers – an activity not to be tackled by the amateur
and therefore not culturally appropriate? Plummer (2001), as we have seen,
suggests that auto/biography is ubiquitous in a variety of forms, so does
this mean that the written form has yet to be adopted as widely as other forms
of story telling? As Speck (1978: 116) observes, in times of stress people
use culturally acquired methods of coping and one question to ask of the narratives
is how widely accepted writing is in our culture as a way in which to deal
with grief. WRITING IN A CULTURE WHERE `DEATH TALK' IS DIFFICULT While we
tell each other stories daily in what could be claimed as an auto- biographical
culture, it is perhaps less usual to write them down, or having written them
to share them with others. Despite Hawkins's (1990) claim that we are `obsessed
with death', there may still be a cultural resistance to talking about it.
Different ways of grieving may result in family mem- bers being unwilling
to talk about a lost family member, and fragmented lives lived in separate
spaces may result in others being unable to engage with such a discourse,
thus leaving the bereaved with no outlet. As Walter (1996: 16) says, `It is
not surprising ... if neighbours do not know what to say and cross to the
other side of the street.' Such a reaction may be exa- cerbated by the death
being that of a young adult, death in any case being a generally taboo subject
that others find embarrassing and difficult to engage with (1996: 17). Rosenblatt's
(2000) interviews with bereaved parents also convey the difficulties of engaging
others in talking about death and the loss, and Klass et al. (1996) report
that a father whose son had been dead for 10 years said that early in his
grief people seemed afraid to talk to him about his son. However, where through
determination they succeeded – `we just had to jam it right down their
throats' (Rosenblatt, 2000: 171) – they found their words to others
a healing experience for themselves. Nevertheless, not everyone coping with
bereavement has the capacity for such a determined approach. What are the
options under such circumstances? Walter suggests that there are two: to close
in upon oneself or to find another prepared to listen, such as a counsellor
or self-help group. But, there is a third option that
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involves
writing about the experience. This may act as a way to tell the story in the
absence of opportunities to talk. Frank (1995: 2), whose concept of the `wounded
story teller' is central to understanding how stories of illness are told,
claims that `the personal issue of telling stories about illness is to give
voice to the body', the assumption being that it is the person who is ill
who is telling the story. But what if they cannot tell their own story, if
they are dead? Then it is up to another to tell their story and who more appropriate
than a parent? Thus, the parents are giving voice not to their own bodies
but to their (lost in most cases) sons' and daughters' bodies. The writing
of such stories about death and loss may take the place of telling stories
that are too painful for the narrator to speak. Indeed, Davis (1999: 303)
says that for weeks after her brother died she `had no words', yet three weeks
after his death she began to write `obsessively', hoping that the documentation
of the facts surrounding her brother's death would bring her closer to him.
Each journal entry began with a statement of the time that had elapsed since
his death and keeping track of time in this way helped her. The journal was
also a place to remember who her brother had been – lest she should
forget. The entries in the journal sometimes took the form of letters to her
lost brother, a way in which to tell him the things she would have shared
with him had he been alive. In sum, Davis says that she wrote to transform
her brother's death into something more than the end of his life (1999: 311).
Morrison (2004: 1) documents the significance of the diary he kept after his
father's diagnosis of inoperable cancer: Keeping a diary kept me going. But
after the funeral, and the cold hearth of Christmas, I sank into depression.
The only solace came from memories of childhood featuring my father in disgusting
good health. I began typing them into my Amstrad, as though to resurrect him.
Though this quote comes from a man – a writer – it is unsurprising
that it is the mothers and not the fathers who were the predominant contributors
to my research. As Riches (2002) says, men tend not only to grieve for shorter
periods than women but also to deny the extent of their feelings. Mothers,
he argues, are more likely to be far more preoccupied than fathers with the
emotional impact after the death of a child and suffer long-term emotional
distress. He cites Masters et al. who confirm the `myth' that `women express,
men repress' (2002: 81). Thus, it would be predictable that mothers would
be more likely to express themselves by responding to an appeal for narratives
than would fathers. Blank (1998) found her husband did not share or support
her desire to talk about their daughter who had died at the age of 39 from
breast cancer. In the absence of being able to talk of the loss with her husband,
Blank
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invited
the bereaved parents of other adult children to tell their stories and discovered
that her reaction to the loss was not abnormal and wrote a book based on this
response. Prince (1996) similarly wrote an account of her brother's death
25 years earlier as a response to the silence imposed by her parents who could
not endure the mention of his name. As we have seen, both Blank (1998) and
Prince (1996) found no outlet for sharing their loss within the family through
talk. Here it seems that it is not that the words were too painful to speak
(Davis, 1999), but that they were too painful to hear. Instead, these authors
found their expression through the written form. Walter (1996) argues that
the purpose of grief is to construct a durable biography that enables the
living to integrate the memory of the dead into their lives in an ongoing
way, and suggests that this is primarily achieved by talking. Yet, he acknowledges
that talking may not always be an option and that there are features of modern
western society that limit such opportunities. WRITING AS THERAPY The definition
of `writing therapy' as used by Wright and Chueng Chung (2001) includes all
expressive and reflective writing whether self-generated or suggested by a
researcher. Thus all the material discussed in this paper could be included
under this definition. The benefits of writing as therapy have been acknowledged
by both a `scientific' and `humanities' approach. Wright and Chueng Chung
claim that in the humanities the therapeutic benefits of writing are explored
with an enthusiasm `verging on the evangelical' (2001: 278), while in the
sciences experiments demonstrate benefits both physical and mental. The participants
in this study had, however, not entered into a therapeu- tic relationship
with the researcher. Indeed the need to separate the research process from
that of offering therapy is discussed by Bingley (2002) who argues that confusion
about the difference between research and therapeu- tic work can be dangerous
and that researchers need to be aware of the limits of their skills. Nevertheless,
as Wright and Chueng Chung (2001: 280) argue, it is the therapeutic potential
for writing that makes it such a viable alternative for those who choose to
write whether or not they enter therapy, and is according to Bolton (1998)
available at any time to any one with basic writing skills. Klass et al. (1996:
212) suggest that part of the resolution of grief is `making the pain count
for something'. One of the ways this can be achieved is through helping others.
In addition to continuing the bonds and acting as a therapeutic outlet, it
may also be the case that contributing narrative data to a research project
may be a way of bringing something positive from the loss.
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METHOD
The narratives were contributed to a research project as the result of a request
from a bereaved parent. The research project to which they were contributed
was founded by the parents of a young man called George who had died from
osteosarcoma at the age of 23 after being ill for four years. After his death,
George's parents Helen and Geoff set up a charity to support research in this
area. While the stories told by the parents are of illness and its effects
on the family, in most cases the story is also of death and loss as the majority
of the young people did not survive their cancer (only seven of 28 survived).
Designing an appropriate methodological approach to the collection of data
on this topic posed many ethical problems. The research design clearly had
far reaching implications for participants in that the investigation, of necessity,
required that they recall events and feelings likely to generate dis- tress.
Dyregrov (2004) says that participants in such a study are so vulnera- ble
that special consideration and sensitivity are required in the research design.
She also claims that some researchers have advised against research on such
traumatized populations. Yet as she goes on to say, there is growing evidence
that bereavement research may have a positive effect on partici- pants who
have been `the focus of interest, concern, and caring attention, which they
experienced as being taken seriously' (2004: 392). With consideration for
such concerns a `narrative correspondence' method was used (Thomas, 1998; 1999a; 1999b). This approach asks contributors to write about, or record,
their contribution in the absence of the researcher. This allows participants
to remain in control of the process. If they decide to contribute they can
do so at their own time of choosing, at their own pace, picking up and putting
down the narrative according to their feelings on any given day. The narratives
were submitted by parents of young adults with cancer in response to an appeal
for narratives written by Helen, George's mother, who summarized her own story
and asked other parents with similar expe- riences to contribute their accounts.
This appeal was distributed through the palliative care network in the UK
in both written form in newsletters and journals, and also through word of
mouth by health professionals engaged in the care of young adults with cancer.
While the contributors knew that the resulting narratives would be sent to
an academic at a uni- versity rather than to Helen, they were nevertheless
responding to a fellow parent with whom they could identify. The appeal resulted
in narratives being sent by the parents of 28 young adults, only seven of
whom had survived their cancer. Mothers, as might have been expected, wrote
the majority of narratives (Riches, 2002; Riches and Dawson, 2000), with the
exception of one married couple who wrote a
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joint
account, a husband and wife who wrote separate accounts and one father who
wrote the account with no contribution from his wife. Thus gender appeared
to be an overarching factor in the willingness and ability to respond. As
Ahmed and Stacey (2001) argue, entitlement to tell the story of illness is
to some extent culturally specific. Thus it is not surprising that given the
dominant model of family structures in Britain (where most responses came
from) and the increased likelihood of emotional engage- ment from mothers
(Riches, 2002), that they were more likely to contribute. There are of course
limitations to such a method in which participants are self-selected and it
is impossible to either quantify or characterize the orig- inal `sample'.
There is a danger that contributors to such an appeal will over- represent
a particular socio-economic background; thus those most familiar with the
written form may be the most likely to submit narrative data. However, it
seems from both the form and content of the narratives that the participants
came from a wide range of backgrounds, both educational and social. Citing
McLeod, Wright and Cheung Chung argue that: `“writing therapy” has also been restimulated by the development of narrative approaches and
computer mediated methods where key board and cyber- space have replaced pen
and paper' (2001: 278), and indeed my assumption when putting out the appeal
for narratives was that the majority would be submitted electronically, or
at least be word-processed. However, this turned out not to be the case. Only
two narratives were submitted via email, the remainder were posted, and half
of those were handwritten. The narrative data, consisting as they did of a
range of styles and approaches to story telling, presented a challenge when
it came to the process of analysis. Nevertheless, the importance of rigour
was recognized and a systematic data reduction, display and conclusion-drawing
method was used (Miles and Huberman, 1994). Miles and Huberman stress the
importance of codification to facilitate the identification of themes and
pat- terns, and warn against jumping to hasty or unfounded conclusions or
the over-weighting of particularly dramatic passages. Applying such a rigorous
approach to data analysis should assist in managing text that is, as Miles
and Huberman say, by its very nature poorly structured, dispersed and bulky.
Additionally, the handwritten texts lent themselves to an analysis based on
presentation, for example, the use of capitalization and other emphases perhaps
less likely to be implemented when using technology. The data had already
been analysed for the substantive themes relating to life stage. The subsequent
analysis focused on here relates to more embedded material that suggested
why the narratives had been written, under what circumstances, for what purpose,
who wrote – mother or father – and what the emotional impact
had been. The headings that follow are based on the themes suggested by such
an analytical approach.
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THE MOTIVATION
FOR WRITING The appeal for narrative contributions reflecting on the life-threatening
illness and in many cases death of a son or daughter expected a great deal
of participants. So, why should anyone respond to such a request that was
inevitably going to result in the recall of painful memories – whatever
the outcome of the illness? Few of the narratives were explicit about the
motivation that lay behind them, but in some of the accompanying letters,
the writer articulated the hope that having access to their experience would
help others, thus echoing Frank's (1995) claim that those who tell stories
of illness and loss feel a sense of responsibility to others and Klass et
al. (1996) that the pain `count for something'. But in addition, embedded
in some of the narratives were other indications of motivation. In the following
extracts from her contemporaneous diary, Sue, whose son Paul subsequently
died from Hodgkin's disease, reflected on the reasons that she wrote – or did not write. Some of the themes are picked up individually in other narrative
material discussed in this paper, but the range of Sue's comments raises a
number of interesting and sometimes conflicting issues relating to motivation:
Can't write at the moment as I am confused and need to reflect before I write.
Well – shan't write much more – I don't feel I need to. I can
write no more – I'm angry, worried and upset. I am writing again not
because I need to but because I felt I should attempt to keep the record straight
about emotions, frustrations, visitors and Paul. Sadly today I write because
I need to put my feelings on paper. I cannot understand what is going on.
Mike is being unpleasant, no, unsympathetic towards Paul. I cannot really
explain and do not know what to do. Just realised its Friday morning. I cannot
sleep. I have many things to write. Here I am again. This time I need to put
thoughts down to get them out of my system. Well, here I go again. It's Sunday
lunch-time and probably the first time I've been alone for ages. I'm mixed
up about what's happened and the right order but I'll have a go. I don't know
how to write at the moment or if I want to put down on paper some of the negative
thoughts which have gone through my head recently. That's all I can write
now as I'm a bit mixed up at the moment. Well, that's all for now. This saga
is turning into a story of self pity. I will overcome it.
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Hello
again. I need to put my pen to paper once more – this time to say that
everything will be OK. I feel at last that hope has outweighed the gloom and
this time I'm not writing it just to make myself believe it. (Sue) The reasons
for writing – or not writing – listed above are many and varied.
We see that Sue writes `not because I need to' but to keep the record straight,
to work out her feelings of confusion and distress, to get her thoughts `out
of her system', because she cannot sleep, because she finds a rare moment
alone, or to make herself believe that the outcome for Paul will be good.
But Sue also gives reasons for not writing or abandoning the attempt. At one
point, she says she does not feel the need to write any more, implying that
the writing she has done has served its purpose. At another point, she ends
her writing because she is `mixed up' in contrast to her rationale above of
writing being used to work through such perplexity. She also questions whether
she wants to commit her negative thoughts to paper and finishes her writing
using the words `saga' and `self pity' to explain her cessation. Interestingly,
Sue also reflects on what her son Paul would think of her writings about his
illness: I had to break off as Paul came down. I don't think he would approve
of my writings. Come to think of it – what's it all about? I suppose
I needed to talk at first and then I couldn't ... I have decided to continue
because one day it may help us or others to overcome similar problems. Unlike
the other writing considered in this paper, Sue is the only parent to write
while her son is still alive, and she concludes that he would not approve.
Though she is not specific about why. She also mentions her dif- ficulty in
talking. Writing presumably is the viable alternative and here we are reminded
of Davis's (1999) writings after her brother's death, when she `had no words',
and the reluctance of others to listen to such talk (Walter, 1996), leaving
writing as an alternative outlet. In addition, the notion of helping others
(Walter, 1996; Klass et al., 1996) is expressed as a hoped for outcome. So
it seems that Sue's reasons and motivations for writing are multifactorial,
complex and changing across time and circum- stance. Nevertheless, they correspond
in broad terms to the themes dis- cussed in the literature. Sue's rationale
that one day it might help, either her own family or others, echoes Frank's
(1995) suggestion that illness stories demonstrate a responsibility to others
who follow them, but as Sue's writings were apparently not intended for public
consumption (Holloway, 1990), it is unclear what outlet she had in mind. Did
she require the legitimation of the research project to justify the activity
despite the claims of Ahmed and
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Stacey
(2001: 1) and Plummer (2001) that we live in an autobiographical culture where
personal testimony – particularly relating to trauma – is ubiquitous?
The following quote from Gabrielle is more explicit about the need for legitimation
as it is her participation in the project that she views as vali- dating her
writings and giving them purpose: There is much more writing, in long hand
... It is ... muddled and raw, written just after Steve died. Then there are
the things I still need to work out now, hastily jotted down on scraps of
paper ... Your project gives me permission to think, write and talk about
Steve and this is an unexpected comfort. (Gabrielle) It is interesting that
this quote says that the telling and sharing of Steve's story requires an
explicit purpose that gives `permission' to his mother to engage in what otherwise
might be interpreted as a maudlin or even self- indulgent activity. Gabrielle,
unlike many of the other contributors had not written her account as a response
to the appeal, but rather had used the appeal to legitimate that which already
existed. This response was echoed by other participants and raises the question
of why such writings need justification in our culture. The parents (mothers)
were after all writing about the most momentous of experiences – so
why is the telling of the story of illness and loss not an accepted part of
the process? The majority of narratives contributed to the research were purpose
written, thus indicating something about the motivation, or at least a rationale,
for writing. But what of those writings that predated the appeal? It seems
likely that the motivation may differ significantly as contempo- raneous writings
may have less to do with a sense of responsibility towards others, as claimed
by Frank (1995), and be more closely related to the therapeutic dimensions
of narrative suggested by Bolton (1998) and Wright and Chueng Chung (2001).
Nevertheless, it seems that whatever the motivation at the time of writing,
the decision to submit the writing to the research project was motivated by
the belief that the writing may help others, thus `making the loss count'
(Klass et al., 1996). THE FORM OF WRITING We see from Gabrielle's quote above
that she reflects on the form of the writing and refers to its `raw' state,
handwritten on scraps of paper. Plummer (2001: 98) suggests that `the old
low-tech is being shifted into the new high-tech' and that story telling increasingly
utilizes such tech- nologies – indeed half of the narratives were word-processed.
Nevertheless, this means that half were handwritten. For a few this was
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perhaps
accounted for, as in Sue's case, by the fact that they were submit- ting contemporaneous
journals written, possibly some years earlier, during the illness. Not only
was the form of writing related to the use or non-use of tech- nology, the
length of the narratives also varied and was not related directly to whether
they were handwritten. Some of the shorter submissions were sent by email.
To some extent this may subconsciously have affected the form of the narrative.
Email has for many replaced the art of letter writ- ing. Although they may
be kept by the recipient either electronically or printed and stored as a
`letter', we send emails that contain mistakes and spelling errors and which
may be written in `shorthand', using abbrevia- tions or note form in a way
that would not be acceptable on paper in a con- ventional letter. Whether
these new conventions shaped the email contributions is not clear, but it
seems that the writers adopted the brief, note-based approach in emails rather
than the more lengthy, reflective style of the handwritten missive. The following
is an extract from an email written by Mary, whose daughter Nicola had died
20 years earlier: She developed a malignant melanoma on her arm when she was
15/16 years old. This was surgically removed and she was given a large skin
graft. Five years later the disease returned in the summer of 1977 and she
died after six months on 3rd January 1978, her 22nd birthday. We were living
abroad in Africa and were consequently quite out of touch. (Mary) Again the
story is being told biographically with information about the facts of the
situation. The sentences are short and to the point, but Mary finishes the
three-page email (lengthy for the medium) by saying: `This has been a rambling
message.' It is also significant that Mary was the con- tributor whose child
had died the longest time before the writing was undertaken. Yet as the following
quote shows, had she not acknowledged this, there appears to be no clue from
the tone to suggest it differs from the emotions or motivations portrayed
in writing done only a few months after the illness or death, thus reflecting
the `continuing bonds' theory of Walter (1996) and Klass et al. (1996). I
knew at the time she was ill that after she died would be the hardest part,
that it would take for ever to reach any sort of peace after she'd gone. But
that was for later, not for now. Of course, you're never prepared for a death.
And although I knew that the hardest part would come after she died. Even
so, I had no idea the pain would be so excruciating in the event ... I still
can't talk about her, or write about her, without brimming eyes and falling
tears. (Mary)
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Some
of the narratives were professionally produced by word-processor, while others
were apparently impulsively handwritten on small pieces of notepaper in a
variety of styles – as Gabrielle's quote shows. Indeed, Gabrielle used
a variety of devices, as not only were her writings `hastily jotted down on
scraps of paper', she also wrote a series of poems for Steve, which were submitted
bound, with a photograph of him on the front cover, perhaps denoting a `tribute'
or `memorial' to him. Poems, according to Plummer (2001), can be a more rewarding
medium through which to write about personal trauma, though it may not be
as populist as other forms. Some scripts used devices to emphasize strength
of feeling, anger and pain by underlining and using capital letters. Where
this was the case – primarily in the handwritten texts – the
original emphasis was kept during the transcribing process and, where quoted
in publications, has been retained. The following extracts demonstrate the
use of such devices: Our friends have been wonderful, but Bill and I can't
come to terms with the fact that Alasdair was snatched away just as he was
beginning to achieve, to live. No-one understands this. They can't. A friend
who lost her husband when he was 52 tries to compare this – Jim had
a lot of life left to live. BUT HE HAD A LIFE – Alasdair DIDN'T GET
A CHANCE. She doesn't understand she didn't watch her child suffer agony and
be helpless to do anything about it. We badly need to be in touch with someone
who knows the HELL we are going through even 6 1/2 months down the line. I
don't seem to be getting over him at all. I still cry every night. I still
want to scream and shout and kick – which so far I have not done. I
just want to. (Moira) Here we see the visual impact of the capitalization
and underlining used both independently and in combination. It is a powerful
signal of the strength of feeling behind the words. Moira is almost shouting
at us. Candy uses similar devices to emphasize her feelings: When my husband
died friends tried to keep me going by reassuring me that life would get better
and then Sianne got cancer and they really became lost, there was no more
they could say and everyone virtually backed away because THEY COULDN'T COPE!
(Candy) Persuasiveness may take a variety of guises, so that the listener
identifies what is at stake for the storyteller, and in this case the visual
devices appear to fulfil such a function. Here we can see that the emotional
and powerful account gains perlocutionary force from the form as well as the
content (Garro and Mattingly, 2000). In the absence of the opportunity to
speak the story the writer utilizes devices that substitute for the spoken
emphases.
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THE
THERAPEUTIC EFFECT OF STORY TELLING Much of the literature on narrative and
writing therapy (Bolton, 1998; Wright and Chueng Chung, 2001) and the concept
of the wounded story teller (Frank, 1997) suggest that there may be a cathartic
or therapeutic effect from story telling. As Morrison (2004) says, writing
was all that kept him going. Although in his case and with the parents in
this study, the story tellers were not the ones who had the illness they were,
nevertheless, wounded by the experience of their son or daughter's illness
and thus could themselves be deemed wounded story tellers. Indeed as Peretz
(1970: 20) says, `Bereavement may be viewed as an illness' since it rep- resents
an altered state of feeling, thought and behaviour. Thus, in some senses,
the parents were also telling the story of their own `illness'. The impact
that participation in the research project had on their lives has been documented
in detail in a follow-up study of the parents (Grinyer, 2004b). This was particularly
important to understand as extracts from their narratives had been made public
through the publication of several journal articles and a book based on their
data (Grinyer, 2002; 2004; Grinyer and Thomas, 2001; 2004). Results from the
follow-up suggest that participation was primarily viewed as positive and
beneficial by the parents. Amongst their reflections were comments on the
therapeutic nature of writing the nar- ratives – or telling the story.
However, it seems that the act of telling such a distressing story was also
experienced as painful and challenging. The quo- tation from Candy, whose
daughter Sianne died, typifies responses: The main thing I found was the therapeutic
effect it had on me, although very painful remembering I think it is one of
the best ways of dealing with the death of someone close to go over and over
it just trying to make some kind of sense of the nightmare. (Grinyer, 2004a)
Despite the pain involved in committing the story to paper, the longer- term
effect – on reflection – was regarded positively. This was for
a number of reasons. First, the act of telling the story – the story
being a lasting memorial – not having to carry the burden of relating
the story to each new family member but there being a tangible record for
future generations. Candy continues by saying: I think it has also been important
for Sianne's siblings as it gives them another reason to feel proud of her,
especially as she is mentioned in print. It is not only a permanent record
for them but another way that Sianne is still with us all ... I was very pleased
to be involved in the study and it gave me another way of doing something
for Sianne. I know that she would have wanted to help anyone in a similar
situation in any way she could. (Grinyer, 2004a)
219
Here
we see that in some senses Sianne continues to `live' through her story, thus
retaining Sianne rather than letting her go (Walter, 1996). As Candy says,
she is `still with us all'. The story, and by extension the writ- ing of it,
perpetuates not only her memory but allows her to have a con- tinued existence
where new events related to her are occurring and finally the recurring theme
of helping others who follow (Frank, 1995). That her siblings should be proud
of her is echoed in Rose's (1997) book, written about his dead son, in which
he says `I wish to pay my permanent tribute to a remarkable young man' (1997:
12). Two parallel events are occurring in such activity. The first is the
act of writing, which may in itself be experienced as therapeutic; the second
is the perpetuation of the story of the lost loved one while paying tribute
to their memory. Thus writing and story telling may be viewed as separate
actions – not mutually dependent. The story could be perpetuated without
`writing' and the writing could be undertaken without being accessed by others,
thus not perpetuating the story amongst the family or for the benefit of others.
Nevertheless, given the personal and social limitations of talking coupled
with the will to help others, the two actions together would appear to offer
the most promise in terms of therapeutic benefit while also serving the function
of a lasting tribute. DISCUSSION We can see from the extracts above that the
act of writing their narrative helps story tellers to make sense of their
experience, to rehearse their feel- ings, both at the time and after the event,
and in some senses to come to terms with the unacceptable; thus, it could
be viewed as therapeutic. The rationale for contributing was articulated by
some participants as being based on a wish to help others, and this may indeed
be part of the motiva- tion, but resulting publications also act as a lasting
tribute and validate the participant's experience. The need for continuing
bonds with the dead (Walter, 1996, Klass et al., 1996) can be maintained through
the writing itself but extend beyond the process to the resulting artefacts
that sustain the relationship and allow new relationships to incorporate the
dead. Thus the act of writing represents the `internalization' of another.
As Pearl (2004: 37) says of White's (written) dialogue for his dying, then
dead lover: It is as if the internalized dialogue is another kind of totem
standing in the place of the other who can no longer speak because he is dead:
a signifier of, but also a substitute for, absence. The internalized dialogue
is a way both to sustain the lost other and to deny that he is gone. The lost
`other' can be sustained in some sense, if not through their cor- poreality,
at least within the body of a text. We can see that the bereaved
220
parents
have adopted such a stance towards their lost sons and daughters, giving them
a continued `life' through a written narrative. The life of the narrative
after submission then takes on an additional meaning and a life of its own.
The publication of their story allows something new to be said about the dead
son or daughter. The adult children of others who thrive and achieve and move
through life's stages have new stories that can be told about them by their
parents. The act of writing about the lost children pro- vides another means
of continuing their stories even after death. Something new can be said about
them – they have appeared in a book, been men- tioned at a conference,
their photograph has been used to illustrate an aca- demic paper – they in some senses continue to `live'. Their story has been taken seriously
and been used to help others – and they continue to live within the
text. As Pearl also says: `the mechanism of mourning is func- tioning here
as well ... Perhaps it is literature's purpose to deny loss; to sustain in
print what one cannot bear to lose in life' (2004: 42). Walter's (1996) `new
model of grief' suggests that rather than grief being a process where the
goal is to move on and let go of the dead person, an alternative way of understanding
grief is to find a way of retaining the dead. However, what appears evident
from the narratives is that despite ubiquitous story telling (Plummer, 2001)
in the confessional culture of modern western society apparently obsessed
with death (Hawkins, 1990), the ability to talk about death is still unacceptable
for many. Even if talk- ing has been socially acceptable in the early stages
of loss, we can see through the literature (Walter, 1996) that the loss is
ongoing. So long after it is no longer considered appropriate to talk about
the death, the bereaved parent may still need an outlet in order to retain
the lost loved one, and writing may be the only option. While many contemporary
accounts of death writing may not be by professional writers (Blank, 1998; Prince, 1996; Rose, 1997), it seems that writing is still largely seen as
the preserve of the `writer'; thus, writings may not be shared with others
(Holloway, 1990) and on occasion even concealed. The research in some cases
has offered an outlet for the partic- ipants, and the therapeutic effect has
been extended from the writing process to the satisfaction of sharing the
story with a wider audience, both keeping alive the memory and contributing
to others' needs. Thus the writing may be seen as part of the grieving process.
But what of the contributing parents (the minority) whose son or daughter
had survived their cancer? What was the purpose or motivation for them? According
to George's mother, as the cancer journey is embarked upon without knowing
the outcome, many of the effects of accompanying their son or daughter may
be the same whether they live or die. Thus parents are still dealing with
grief, trauma and pain – despite the outcome. They too are trying to
make sense of the experience and possibly still dealing
221
with
the legacy of the illness and its impact on their son or daughter and the
wider family. There will have been a different kind of loss and though death
may not have been the outcome, a residue of that fear may remain. For whether
or not their son or daughter has died, parents are experienc- ing losses that
may be interpreted as forms of bereavement. These emo- tions need to be worked
through and the writing process may help to clarify them. As Frank says of
his book, the unspecified topic here is suf- fering – and suffering
creates a need for stories or testimony. `Remaking', he says, begins when
suffering becomes an opening to others (1995: 176).
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NOTE
ON CONTRIBUTOR
ANNE
GRINYER is a Senior Lecturer in the Institute for Health Research and is also
the Director of the MA in Applied Research and Consultancy in the Innovation
and Enterprise Unit both at Lancaster University. She is a medical sociologist
whose recent research and publications have focused on the life stage effects
of cancer in young adulthood. She also teaches and writes on social research
methods.