‘Making sense of illness narratives: Braiding theory, practice and the embodied life’

by Kaethe Weingarten

 

This paper by Kaethe Weingarten is published in the book Working with the stories of women’s lives (Dulwich Centre Publications, 2001) which is now available from Dulwich Centre Publications.

I have made a commitment to bring into my awareness  narratives of illness, disability, medical disorders, chronic conditions, genetic disorders, disease, dying and death.  It is not ever easy to open myself to the slices of life that this willingness entails but, living as I do and my daughter does in an unreliable body, it seems the right thing to do.

For years I struggled to articulate my own illness narrative, choosing my listeners as carefully as I would rocks in a quickly moving stream I had to cross.   Later, when I helped my daughter articulate her own illness narrative, I noticed how fierce I was to ensure that she had a respectful audience, and how likely I was, metaphorically, to walk in front of her, testing each rock before she stepped on it.  I understand from my protectiveness not just that this stance is consistent with being a caretaker of a child with a medical condition, but that there are differences between her illness narrative and mine.

Although I had read illness narratives for years, heard them in my offices at home, in a children’s hospital and child guidance agency, it wasn’t until my own child’s interactions with the world seemed prejudiced by virtue of the illness narrative that she had to tell, that I began seeking out classificatory schemes to help me explain to help me manage my pain the different experiences that she and I had due to our medical conditions.

Although, I found one that has worked well for us over time, I  continued to seek analytical tools to help account for my own illness experience and that reported to me by others. Illness is huge.  Illness or, more accurately, our relationship to it, threatens the way we know ourselves and how others know us also. Anything that helps put illness in its place, that allows us to feel that we are who we are despite it, is welcome. For me, classification schemes have given me a perch outside my illness narrative, to look at it. Rather than feeling trapped inside it, I have felt curious about it. Rather than feeling condemned by it, I have felt partnered with it against dominant discourses that would silence or marginalise me because of what I – we, my illness narrative and I – can speak.

The three classificatory schemas I offer here are ones I have applied to my own life and have found helpful in resisting the diminishment of personhood that Western cultural ideas about fitness, accomplishment, success, individualism, and progress would have me feel since, as a person with an illness, I cannot perform to my abilities at all times. These classificatory schemas have provided ideas about specific ways to resist dominant cultural ideas that are embedded in the characterisation of illness and its relation to society. I offer you some first-hand experience with these conceptual frameworks. It is not my intention to imply that these schemas fully map my own illness experience nor that they will map others’ experience. But they have been helpful to me at times, and for this I am grateful. I would welcome learning from others about frameworks that have helped them.

I. Coherence, Closure and Interdependence

In a nutshell, my daughter’s illness narrative is less well understood than mine.  The consequences of this – with extended family, her friends and ours, and doctors – have been, are, vast and far-reaching.  They led both of us to despair and to a tighter relationship with each other and Hilary (partner to me, father to her) than I believe we might otherwise have had. They led me to look for theoretical constructs to account for the persistent differences between us.

Although I have written about these differences and the constructs we now use to account for them, I will recap briefly here (Weingarten and Worthen, 1997; Weingarten, 1999).  My daughter, Miranda, was born with a rare genetic disorder which has been poorly understood by the medical community and which is virtually unknown to the lay public.  I was diagnosed with breast cancer in 1988, following decades of other medical problems, at the exact moment in the socio-political era in the United States when breast cancer advocacy began.  Within three years, breast cancer went from being an illness with three published first-person narratives to an illness with several national and fifty state political action groups and dozens of published first-person narratives about it.

Whereas I feel that many people comprehend my illness narrative well, Miranda rarely feels understood. While much of the difference in Miranda’s and my experience can be explained by virtue of the different roles that Miranda and I play in the family, the differential resources these roles give us access to, and the nature of the conditions themselves, we are certain that other parameters are at play as well.

By virtue of having a rare genetic disorder, Beckwith Wiedemann Syndrome, that virtually no-one has ever heard of, Miranda is more isolated in her experience than I, who has a disease that affects one in eight women in the United States at some time in their life. In the  twenty  years that we have been interacting with the medical profession over concerns related to Miranda’s syndrome, only a few have ever personally worked with a child with her disorder. By contrast, all my medical providers have other patients with breast cancer. On a daily basis, I never feel alone. There are women right on my block who are going through what I am. Miranda always feels singular.

Many people understand the aetiology, pathophysiology and the course of my illness. No-one understands Beckwith-Wiedemann Syndrome. It is a disorder with multiple manifestations which can affect a number of organ systems and no one can predict what is in store for any one person with the Syndrome. The name I use to define my medical situation – breast cancer – is defined as a disease and this fits with my experience of having had breast cancer.  Each time I was diagnosed with breast cancer, the treatment that followed corresponded with my ideas of what having a disease entails.

Miranda, on the other hand, carries a diagnosis that has no obvious implications.  We know that she has BWS, but nothing inevitably follows from that diagnosis the way surgery, for example, follows from the diagnosis of breast cancer.  When I told others I had breast cancer, most people could imagine what I was experiencing. When Miranda says she has Beckwith-Wiedemann Syndrome few people have any idea what that means for her.

Nor have we been able to find a word that conveys to us, much less to others, what she experiences routinely. Does she have a disease, an illness, a condition, a disability, a chronic disability, a chronic illness, a handicap, a disorder, a genetic disorder? We are baffled. No designation maps the territory.  Without language, experience dissolves. Without language, experience cannot be shared and community cannot be formed.

Drawing on narrative theory, we now use three concepts routinely to make sense of our experience (Chatman, 1978).  These narrative concepts are not neutral but are loaded with cultural specificity. There are class, ethnic, religious, perhaps even national biases embedded into this classification schema.  The schema has been very effective in making sense of our illness experiences.  It has been effective in helping Miranda feel empowered in her life, both with friends and medical personnel. The schema obviously fits with values and discourses that shape our lives.

Narrative Coherence

Narrative coherence is established by the interrelationships between plot, character roles, and themes or values.  In an illness narrative the patient, the patient’s family and medical personnel all play parts.  With the diagnosis of breast cancer, a plot sequence unfolds according to fixed and known responses to data derived from the analysis of breast tissue.  The patient will likely have visits with an oncologist, a radiotherapist, a surgeon and ongoing relationships with them depending on how the plot unfolds.  Family members can be given a likely set of events to expect.  The feelings of everyone involved are likely to include sadness, anxiety, worry and fear. This was so for me. Though at any moment, I may have felt confused, the story I could tell was not particularly confusing.  In fact, it was quite coherent.By contrast, these elements applied within the context of Beckwith-Wiedemann Syndrome have the feeling of a deck of cards thrown into the wind.  Having such scanty criteria available to us to guide our selection of cards — choices — it always feels just shy of random that we are proceeding, playing, with one hand of cards and not another. The significance of any event is unknown, thus the plot unfolds chaotically.  Nor is it clear who the players – beside Miranda, Hilary and me, that is — should be.  Do we go to a geneticist or a paediatrician?   Do we find a specialist for each affected organ? How should we feel about it?  Is this a disaster waiting to happen? Has a disaster already happened?

Narrative Closure

The second feature of narrative that applies to illness narratives is that of narrative closure.  One aspect of narrative closure is cultural resonance. The more familiar people are with the situation described, the higher the cultural resonance will be and the more likely that others will be able to participate with the person whose narrative it is in a way that supports, endorses and elaborates the story the person has to tell.Breast cancer narratives have a high degree of cultural resonance. It would be unthinkable today for a woman who has found a large breast lump to have a friend or physician respond “Oh, gee, don’t  worry about that large lump”.  One way of conceptualising why such a response is almost unimaginable today has to do with the high degree of cultural resonance that breast cancer narratives have.On the other extreme, Beckwith-Wiedemann Syndrome has low cultural resonance.  Few people know how to respond when faced with the name of the disorder or even the names of the physical manifestations.

Narrative Interdependence

Narrative interdependence refers to the interrelatedness of one person’s narrative to another’s.  In families, one member’s narrative is usually interrelated to the narratives told by other family members.  For better or worse, my breast cancer narrative is related to the stories other women in my family with breast cancer can and do tell.  Miranda has her own story that relates to my breast cancer because, as the daughter of a mother with breast cancer, she worries about her own increased risk of acquiring breast cancer.Miranda’s illness narrative has no connection to the illnesses of anyone else in our extended family. Though Beckwith-Wiedemann Syndrome is genetic, she is the first person in the family to be affected by it. This probably means that in her case BWS is a new mutation that appears for the first time in her.

However, along another dimension, neither Miranda nor I could tell an authentic account of our lives without reference to the illness experience of the other.  In this sense, our illness narratives are profoundly interdependent.This classification schema helped us. We used it to try to create a  context in which the fact that Miranda’s BWS narrative was often incoherent, had little cultural resonance, and little interdependence with others’ illness narratives, would not matter. We created our own audience of loving family and friends as a way of creating legitimacy for the story we could tell about BWS, coherent or not; increasing the cultural resonance of her story of BWS;  decreasing her sense of isolation due to BWS, even if it were to a small group of people; and linking her story of BWS to those of others by creating listeners to it.We designed a ceremony and invited a group of friends and helpers to it. The invitation went right to the point:

Please join me and my family at a ceremony to witness the history of  my living with Beckwith-Wiedemann Syndrome. I am hoping that you will become members of an “opposing despair/nourishing hope” team to help me deal with the ongoing trials of my life.2

 

The ceremony and the awareness that it produced has changed our lives.  Not only does Miranda feel less alone, but Hilary and I feel less alone taking care of a young person with BWS. These terms help explain interactions we have daily and weekly.  And they are not enough.

II. Restitution, Chaos and Quest Narratives

The next set of terms I offer came too late for me.  After I finished treatment for breast cancer, an ordeal often sarcastically described by survivors as slash, burn, and poison, I entered a period of profound silence, believing that no-one could tolerate listening to my actual thoughts and feelings.  They were repetitive, irrational, cosmic and trivial, selfish and altruistic … they made no sense.

Years later, I read Arthur W. Frank’s important book, The Wounded Storyteller: Body, Illness, and Ethics (2000) and I found a classificatory schema of illness narratives that made me realise my thoughts and feelings – even my silence –  indeed made sense. Frank classifies illness narratives into three basic types, always cautioning that the purpose of classification is not to pre-know or pre-judge, but rather to enter into mutual storytelling as a “gift relation.”  That is, “stories are not material to be analysed; they are relationships to be entered” (p.200).

Yet there is a challenge.  Some of these illness narrative types are easier to engage than others, for most people.3 The restitution narrative is perhaps the most preferred illness story form in Western cultures, and thus perhaps the easiest of the three types to listen to well, if not deeply.  In the restitution illness narrative, the person tells about the details of the illness from the perspective of the diagnosis and treatment: all that has been done, is being done, and will be done if treatment fails.  It is a story in which modern medicine is the subject and the star, the ill person merely the habitus on which the practice of providers is inscribed.  For those who cannot tell their story in this form (those, for instance, whose illnesses are not understood and therefore they have not had a stunning sequence of treatment, those for instance in the early 1980s who had HIV or Chronic Fatigue Syndrome), there are micro-processes of withdrawal to contend with from medical personnel, family and friends.  Some people whose illnesses  fail to follow the form of restitution narrative or who themselves refuse to package their illness narratives in this form are found deficient and they may be marginalised along with attention to their illness.

When I was first diagnosed with breast cancer, I quickly learned who the people were who wanted to hear a restitution narrative.  I was fortunate, ah irony, that breast cancer is a disease that can easily produce a restitution narrative.  But I also had another illness narrative and it was this one that consumed me.  Like a jewel, I hid this illness narrative, unwrapping it under special conditions of agreement about secrecy and safety, to only a few who met my stringent criteria of trustworthiness.  This illness narrative Frank calls a chaos narrative, named for its obvious feature: its plot is chaotic.  This illness narrative feels like being in a kayak in a class five rapid.  While you are going through the rapids, time and place shift so rapidly, up and down, right and left transpose so often, that one truly feels inside a vortex, the way out of which is entirely unknown in any one moment.

Ultimately, my chaos narrative pitched me into silence.  Unable to find any models of it, I assumed I was going mad.  Shame (and rage) silenced me.  Think about it.  What publisher would publish a book-length chaos narrative?  How could one truly convey the heartache of the chaos illness narrative without the shaping intelligence of the no-longer-chaotic mind?  How then can people who are in the heart of the chaos narrative find exemplars of their distress?  In my latest book, I have tried to slip in a few pages in the style of the chaos narrative. I have failed because there is more coherence than there was during that time. Still, I offer them here because they are a beginning at re-dressing the absence of the chaos narrative in print.

These days I can feel the interior of my brain. The neurons alternate between chaos and silence.  Eerie.  I have been shot from a cannon far from where I previously stood.  That person’s life was ordered and bound by a lattice of ritual.  Vomit, vomit, vomit. Sleep, sleep, sleep. Shabbat dinner prepared by my dear friend Lois, while I lie on her forest-green couch listening to the amiable conversation of our two families. Sleep, walk, sleep, walk. Blood counts checked.  Work. Work. Work.

It was a life. A fabric. I had medicines to taper. Sores to anoint with salves. Clients to see. Children to tend. Food prepared by others to eat.

End of chemo. End of being held in community.  I am on my own. September.  A new year.  Fifth grade for Miranda.  Eighth grade for Ben. Back to my life.  Able.  To take care of them.

Maybe I’ve been beaten up, raped, robbed, tied up, thrown into a back alley, found by the police, and just brought home.  Maybe I was lost in the desert for twelve days and I am still seeing mirages, still thirsty, still crawling on my hands and knees with skin peeling from my knuckles and legs.  Or maybe my head is really a pumpkin and the insides are full of seeds.  Shake me and you can hear the shlooshing sound I make.

I am lost. Awash. I have no words. The only images are those received ones for chaos and dissolution. I have sounds, but they are primitive, animal sounds and there is no place to make them except with Hilary. We meet twice a week and exercise.  We walk along the Charles River.  Hilary knows I am a ghost.  My purpose and my meaning have been surreptitiously removed. I know I look like a person, but I am not.

I am no longer good. I no longer think thoughts that good people think nor do I act like I did when I was a good person.  I have no idea how  what I am now can become what others are. I lack coherence.

I try.  I train for a mini-triathlon (swim, bike, run), so that I can attribute any aches and pains to my exercise. In the pool, swimming the crawl, I feel supported by the water.  It is the one place where my life is not effortful.

After I swim, I stand in the shower as long as I can. The heat is  comforting.  I feel almost calm.  Later, I read that showers deliver carcinogens through the skin because the water is not filtered.  I have decided, post-treatment, to be careful, not crazed, about my cancer vigilance.   Is a quick shower careful and a long one not?  What about the chlorine in the pool?  I decide to swim and take short showers.

I learn about supplements: retinoids, beta-carotene, the B, C, and E vitamins.  I buy them.  I learn about zinc and selenium and I am in over my head.  I cannot figure out whether they retard or enhance tumor growth, are antagonists to the cancer cells, each other or me.  I give them up.

The magazine cover says “breast cancer.”  Like the Woody Allen character in the movie “Annie Hall” who hears the word “Jew” everywhere he goes, as in “Did Jew..?”, I hear “breast cancer.”  It’s as if newspapers, magazines, and tabloids have suddenly gotten a memo from their publishers: “Do breast cancer.”  Statistics abound.  One in nine.  Then, one in eight.  Breast cancer research is drastically underfunded.  Momentarily, I think I have the energy to get politicised, but the burst of adrenaline is fear and I am reduced to unspeakable terror not galvanised into action.

I do not approve of my thoughts.  I think, I want this or I don’t want that or I want to do this or I don’t want to do that.  Outloud, I say, “What do you want?” and “I’m not sure.”

I am in a bind.  Fighting cancer is a full-time job. I have to buy tofu and cook it without oil.  I have to learn to juice. I must swallow vitamins and minerals at prescribed times of day.  I have to meditate and do yoga. I have to be in group therapy, have individual therapy and talk to my friends to have “social support.”  I must express my emotions, particularly my anger, and above all, I must avoid stress.  Stress is now my enemy.  But it’s my life, no?

I  have a household to run, clients to see, classes to teach, presentations to write, supervision to offer, children to nurture, and a husband to love. I have a body to monitor and at the first sign of waywardness or lumpiness or acheyness I am to report it. I am not to notice what a doctor may tell me later is not there.

I am beyond exhaustion into loopiness which I conceal from everyone but Hilary. To the outside world, I am now doing all that I did, plus cancer care which, I tell people, is a part-time job.  I make nine trips to the hospital in September for various doctor’s appointments and scans. I park, wait, see doctors, take tests, have pre-visit anxiety and post-visit de-briefing.  I gag when I visit the oncology floor, so it’s disgusting too.

It is also lonely.4

Such is an episode from a chaos narrative. The third illness narrative form, the quest narrative, is the one I have spent the most time writing myself. Illness is lived as a quest to see if something can be learned which is of value to others.  In the quest illness narrative, illness leads to new insights. It is a form of care of the self and the trick is to tell the quest narrative without it becoming a technology of the self such that it reinstitutes a micro- process of power in the telling (Weingarten, 1997; 1999b).

In Frank’s book, The Wounded Storyteller, there is a sentence that perhaps conveys best the underlying hope I have for turning my illness narrative into a quest narrative. He writes: “The ill person who turns illness into story transforms fate into experience; the disease that sets the body apart from others becomes, in the story, the common bond of suffering that joins bodies in their shared vulnerability (p. xi).”  And later, paraphrasing Kierkegaard, he notes, “To tell one’s life is to assume responsibility for it (p.xii).” I write illness narratives, (and about them) because I discovered that I can turn pain into prose, pain into purpose.  This is now my work, whether I write for academic or popular audiences, to my doctors, my family or strangers.

As Frank makes clear, all of these story forms co-exist, often in relation to the same illness.  Each are subject to different discourses and call forth different kinds of listening.  Time circles inside each of them, creating interpenetrations of the story forms, more like an Escher staircase than a ladder.

I now work very hard to help people to tell the story form that fits their experience.  Often it is the chaos narrative that people have learned to censor.  I am trying to master the art form of helping to call forth the chaos narrative. I also work with many people who are trying to tell or write quest narratives.  Each requires a different kind of attentiveness and response.  In another context, I have written about the importance of listening for absence, for the moments when words fail.  “They are likely to represent moments in which lived experience falls to the margins of the dominant discourse.  I regard these moments as particularly precious; they have the potential for inventing what can be at the same moment that they may capture what is or what has been.  I try to give myself and/or the other the sense that we have all the time in the world to search for, try out, create, or bend language to serve the purposes of knowing and being known. The latent voice may speak the unspeakable, know the unknowable, if the voice feels welcomed. (Weingarten, 1995, pps.17-18).

III. Stability, Progressive and Regressive Narratives

Still, Frank’s classificatory schema was not enough for me.  I sought others.  Intractable pain goaded me to find an explanation for the sense I had that while the restitution narrative might be the most desirable illness narrative, I had entered the land of the pariah’s illness narrative, the narrative that contradicts, gives the lie to, impugns the Western notion that with work anyone can achieve success: pain will yield to individual effort.

I turned to Kenneth Gergen’s work on stories themselves.  The events in a story all lead to the story’s end and these “endpoints are weighted with value ( 1994, pps. 196-197).”  All plots then can be converted to a linear form in terms of their evaluative shifts over time.  I have applied his simple description of types of stories, classified by their plot, to illness.

In the Stability Narrative, the individual’s trajectory remains unchanged with regard to outcome: the illness is no better, but it is also no worse.  I could tell a stability narrative in which I am feeling quite good, just not completely well or my stability narrative could be at a very low level of wellness.  I feel terrible, day after day, with no improvement, but no worsening of my condition either.

By contrast, in the Progressive Narrative, there is movement toward incremental improvement.  Every day I feel a little bit better.  Or, a medicine I am taking is making a difference and I feel better because of it.  Or, I saw a therapist and now I see things differently.  I feel like I am getting my old self back.  Needless to say, it is the Progressive Illness Narrative that is the darling of others.  It is easier to find an audience for this narrative form than either of the other two, with the possible exception of the stability illness narrative, when one is stably nearly well.

Perhaps the most frightening illness narrative and the one that makes those who inhabit it most desperate and most uncertain whether they will find people to listen to it, is the Regressive Narrative.  In this narrative there is a downward or backward slide.  When I have been in a life circumstance in which the only story I can tell about my embodied experience is one in which I am not getting better, that is a regressive illness narrative, I have felt like I am holding on to a tiny piece of Styrofoam, splintered off from a raft, and that I am bobbing in the sea, waves rolling over me.  I do not know whether or not I have the endurance to hang on, nor whether or not the small, artificial piece of wreckage I cling to can keep me buoyant.  Nested in this image, though hidden and invisible, is the fantasy of rescue, from quarters unknown.

These narratives are not value neutral.  In my culture, the regressive narrative often produces isolation, both because the person who would tell it feels the potential of stigmatisation and marginalisation, as well as in the telling, the person is likely to experience both. A culture that values a progressive illness narrative, tolerates a high stability narrative and shuns a regressive narrative is revealing a great deal about itself.  For starters, there is the discourse of individual improvement; effort always pays off.

This discourse is rooted in class, although few who traffic in it would be aware that this is so. Improvement is possible for people with institutional supports.   In fact, pain does not always yield to effort and in the United States, at least, differential access to assistance with pain and illness is available based on gender, age, race, and class.

Making Sense of Illness Narrative Schemas

I use these illness schemas daily. I use them to help me tolerate my own experience.  I use them as a family member, friend, neighbour, colleague and therapist.  I use them when I do errands, walking down the street or driving my car.  There are no end of opportunities for me to appreciate the ways each person’s illness experience and the context within which it is socially manifested create differential opportunities for expression and representation. For instance, I am selective about the people to whom I tell a regressive, chaotic incoherent illness narrative, and the times I tell it to those chosen few.  I am lucky that I can package my experience in a variety of ways and still be true to my experience.

As a mother, no doubt, I have an intense longing to wake up some day and hear a progressive illness narrative from Miranda, but I also know our relationship is better served if I am open to exactly what is so.  My wish is to be as steady a companion as I can be to what she needs to say.  When I am overwhelmed by her pain, my job is to find resources to assist me in steadying myself to continue to be present for her.  At the same time, I believe that many others wish to help her contain her illness experience.  Helping her draw on the support of others is a way I can be helpful.  If doing this then alters the tale she tells, then it has happened in conversation, collaboratively, not through imposition.

The other day, a couple I know talked with me about trouble they were having in their relationship.  The woman had recently been diagnosed with a medical condition for which an experimental medical protocol was available. The husband was relieved to have a diagnosis and wanted her to enrol in the protocol.  He was frustrated by her reluctance to do so.  She, on the other hand, felt more not less “out of control” with a diagnosis that provided a known course and prognosis.  She was grieving the loss of a range of other possible diagnoses for her condition, many of which were less dire.  By signing up for the protocol, she felt less able to influence the course of her symptoms “herself.”  I felt I was hearing a clash between the husband’s desire to be in a restitution illness narrative – now – and the wife’s need slowly to let go of an incoherent, chaos narrative and gradually to try on a coherent illness narrative.  It was also not clear to me that she was going to find it comforting to place control in the medical protocol offered to her.  It wasn’t clear to me that she was going to find a restitution illness narrative appealing. She might enrol in the protocol and also continue self-healing measures, which she would express by telling a quest narrative. For her, tying the experience up in a tidy package with a bow, which her husband wanted to do, might never be desirable.

I talked with them about why their reactions to the protocol might be so different and what each person feared would be the consequences of the others’ stated preference. That conversation provided ideas about how each could compromise without feeling panicky.

Last year, I gave a talk in California about these ideas and interviewed a woman in the audience whose request of me as interviewer was to help her stay in a chaos illness narrative, from which, she said, she was continually bumped by well-meaning friends.  A few weeks later, I got a letter from one of the conference participants, Jim Weinstein, who has given me permission to quote from his letter.  He did not find that any of the illness narrative schemas fit his current experience as a person who has been infected with the HIV virus for thirteen years.  He described his experience as a “Roller Coaster with Acceptance Narrative/Story,” a schema that specifically acknowledges the non-linearity of many illness experiences and which also draws on Eastern not Western philosophies.

I was delighted that the presentation of these few illness narrative schemas had provoked the recognition of another.  I assured him, as I assure my readers, that I have no doubt that there are many, many other illness narrative schemas.  I hope that this paper will be useful both because for some people there will be a fit and also because for some people, the lack of fit, as it did for Jim, will provoke the articulation of what fits better.

Conclusion

I could end this paper many different ways.  One point is pressing more than any other, but who knows what might bubble to the surface if I wrote the conclusion tomorrow, or two hours from now.  I think a lot about these matters, and what’s key shifts, depending…

At this moment.  A final thought.  The progressive illness narrative orients people to cure.  Yet, if there is one thing I feel I have learned from an adult life lived inside an unreliable body, it is that care not cure will keep us floating in the ocean.  It is my hope that understanding the different kinds of constraints facing people with illness, with regard to the stories they can tell, will make it more likely that care will circulate among us.  I hope that this will create, metaphorically, a variety of rafts and docks and buoys and life preservers for us to cling to – together – in the illness-waters that we will all face at some time in our lives.

Notes

1. Kaethe can be contacted c/o 82 Homer St Newton Centre MA 02459 USA. Email: [email protected]

2. Portions of the section above are adapted from Weingarten, Kathy and Worthen, Miranda Eve Weingarten.  “A narrative analysis of the illness experience of a mother and daughter.” Families, Systems, & Health: The Journal of Collaborative Family Health Care. 1997, 15:1, 41-54

3. Readers are referred to Frank’s book and article for a description of the illness narratives themselves.  In this section  of  the paper, I am commenting on the types, not explicating them.

4. Weingarten, K.. Unreliable Bodies and The Politics of Hope. Manuscript Submitted for Publication. 1999a.

References

Chatman, S. 1978  Story and Discourse. Ithaca, New York: Cornell University Press.

Frank A. W, 1995  The Wounded Storyteller: Body, Illness and Ethics. Chicago, Illinois: University of  Chicago Press.

Frank A. W. 1998   “Just Listening: Narrative and Deep Illness” Families, Systems, & Health: The Journal of Collaborative Family Health Care. 16,3:197-212.

Gergen, K. 1994  Realities and Relationships; Soundings In Social Construction.  Cambridge, MA: Harvard University Press.

Weingarten, K.1995   “Radical Listening; Challenging Cultural Beliefs for and about Mothers” in K. Weingarten, Editor, Cultural Resistance: Challenging beliefs about Men, Women, and Therapy, New York: The Haworth Press.

Weingarten, K. 1997  The Mother’s Voice; Strengthening Intimacy in Families. (Second Edition)  New York: The Guilford Press.

Weingarten, K. 1999a  Unreliable Bodies and The Politics of Hope. Manuscript Submitted for Publication.

Weingarten, K.1999b   The Politics of Illness Narratives: Who Tells, Who Listens and Who Cares in Narrative Therapy and Community Work: A Conference Collection. Adelaide: Dulwich Centre Publications, p.13-26.

Weingarten, K. and Worthen, M.E.W.  1997  “A narrative analysis of the illness  experience of a mother and daughter.”Families, Systems, & Health: The Journal of Collaborative Family Health Care. 1997, 15:1, 41-54.

Copyright © 2001 Dulwich Centre Publications

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