Re-telling of stories, lived versus living experience

Last updated on August 30th, 2019 at 10:58 am

When I had to repeat the story of the X-ray that led to suspected cancer, I began to feel after multiple tellings that a voice outside of me was talking, and I was listening to that voice. I was not speaking of how I felt; I was addressing the interests of particular listeners in rhetoric appropriate to our relationships. I felt written on from the outside, but my own voice was doing the writing. ~ Arthur W. Frank (2013). p.71

One of the challenges I have with looking at illness narrative, and pathography specifically, is that things seem to need to be published as books in order to be considered pathographies. David Elpern has created an entire website dedicated to the listing and reviewing of pathographies told in the form of books.

I am a little challenged by the idea that something must be in book form to be considered pathography – or illness narrative. I think there is an issue with inherent privilege that happens when stories are required to be translated into a book. I also think there is an issue of needing to translate the illness experience into a narrative that aligns neatly with the format of a book. I think there is something lost in that translation.

I should unpack the idea of privilege first. There is privilege in telling the illness narrative in blog form, just as there is in book form. I just think that blog form is a little bit more accessible than book form is. Writing a book requires a lot more dedicate time. It requires skill. And getting a book published requires a lot of skill and a fair bit of knowing the right people at the right time. It reeks of privilege. Blogging requires privilege too – just different privilege. You don’t need to be a good writer to blog. You don’t need to be too terribly technically literate – although knowing a bit about technology certainly will help you get started. I know many people who use free blogging platforms like Blogger and So, in many ways blogging has fewer barriers to entry than publishing books.

The act of converting a blog to a book feels a little like retelling of the story. As Arthur Frank says (above), it feels like you are being written on from the outside. For me there is something of the authenticity lost in the retelling. There is also the question of how much ‘fiction’ you add to the narrative in order to make it a good story. How much of the illness narrative changes when it is translated into a book?

In discussing my new dissertation topic with my new supervisor (yay), we talked about the difference between pathography as books versus pathography as blogs. One of the differences is that blogs are living documents. Books are static. There is a discrete beginning, middle, and end to a book. Blogs on the other hand may have a beginning, but they don’t really have a middle or end. Blogs stay alive as long as there is someone to continue with the writing. There is no end, until the end. Perhaps a book is a good way to talk about a “lived experience”, where a blog does a better job of describing a “living experience”?

NaBloPoMo November 2015

One response

  1. scottx5 Avatar

    Agree that lived and living experience are different and things are lost when we retell experience as an event that has ended. I get a chill when my doctors state after the fact of an experience: “Really, you can now see this is all that it was.”

    Some hopefully useful things:
    Narrative Identity and Meaning Making Across the Adult Lifespan: An Introduction
    Jefferson A. Singer Department of Psychology, Connecticut College

    From: “The Primacy of Caring, Stress and Coping in Health and Illness by Patricia Benner and Judith Wrubel. On control and I think the limits of things told after-the-fact. It didn’t feel that way at the time but might seem like it could have in retrospect.
    “…points to the crisis in the control paradigm—that faithless position that seeks as much autonomy as possible and must control as much as possible to feel safe and secure. The problem with the control paradigm is that the premise of full autonomous control over one’s destiny, including one’s internal operations, is flawed. It overlooks the limits of autonomy and control.”

    Also in Primacy of Caring, the authors point to Antonovsky’s view that health relies on a sense of coherence as an awareness we carry with us all the time and not just something written down and set aside on a shelf. It’s great that we learn from experience and then in our wisdom compile this knowledge but isn’t it more true that life is a continuum of things yet to be known?
    “….a global orientation that expresses the extent to which one has a pervasive, enduring though dynamic feeling of confidence that one’s internal and external environments are predictable and that there is a high probability that things will work out as well as can be reasonably be expected (p. 10).”
    Antonivsky A. “Health Stress and Coping. San Francisco: Jossey – Bass, 1979

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