The power of stories

I’ve been thinking a lot about stories lately. After finishing (and loving), Frank’s “The Wounded Storyteller” I’ve been looking for restitution narratives, chaos narratives and the rest in the stories that I now see all around me. The approach of narrative inquiry rests on the foundation that life is storied; we make sense of who we are through reflection and telling tales. Also that the story and the Truth (in the pre-post-modern sense) may/will differ, and that there are thousands of versions of the truth – and they may change every time we retell our stories. Pretty intense for someone steeped in the world of “evidence” and the mono-culture that is modern health care.

Examples abound. I’m involved in a project to re-design our old “tick-box-Likert-scale” patient satisfaction tool. We read the literature on patient experience, talked to patients and designed it with some wide open space for people to tell us their stories. We’re told now that this is “hard to quantify” and “not useful for automatic data reporting.”  I’ve also been honoured to be reading a friend’s cancer treatment story, and to see firsthand how she (with grace and humour) finds meaning in her experience in her dual roles as radiation therapist and patient. The multiple points of connection with what I do at work (e.g. write recommendations for skin care for patients) with her lived experience (using a 99p pot of cream and some cabbage leaves) has shifted something fundamental and led to an opening of new possibilities. How can we move forward and reconcile, or entwine, these two viewpoints? How can we offer these stories to future patients and caregivers?

Moving focus to my reading at home/on the bus/at the hairdressers – the wonderful and painful memoirs of Jeanette Winterson and Dorothy Allison who literally write their way out of abusive childhoods that would break most of us. Both of them equate their ability to move through the world, and their subsequent success, with reinventing themselves through stories.

Compare this (from Winterson):

“I believe in fiction and the power of stories because that way we speak in tongues. We are not silenced. All of us, when in deep trauma, find we hesitate, we stammer; there are long pauses in our speech. The thing is stuck. We get our language back through the language of others. We can turn to the poem. We can open the book. Somebody has been there for us and deep-dived the words.” (P. 9)

To this (from Allison):

“The stories that other people would tell about my life….those are the stories that could destroy me, erase me, mock and deny me. I tell my stories louder all the time: mean and ugly stories; funny, almost bitter stories, passionate desperate stories – all of them have to told in order not to tell the one the world wants, the story of us broken, the story of us never laughing out loud, never learning to enjoy sex, never being able to trust and love again, the story in which all that survives is the flesh. That is not my story. I tell all the others so as not to have to tell that one” (P. 72)

Both authors talk about “writing over” – Winterson calls this a ‘fossil record” – a retelling of the same stories but the imprint of the common theme, the lesson, is still visible.  The words we chose, the language, has been used many, many times. No story is truly unique. They move us and teach us because we know them deep inside. Coming back to health care, Frank tells us that

“No story stands alone. Each story weaves threads that are original in that person’s experience. Yet everything that is said carries the resonance of previous stories, because every indignation and aspiration, every expression of despair and act of courage has been told before” (P. 220)

Whether it is published work, a blog from a friend or the stories of our patients – stories have power. And we ignore them at our peril.

References:

Allison D. Two or three things I know for sure. Plume. New York. 1995

Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Pres

Winterson, J. Why be happy when you can be normal? Vintage Canada. Toronto, Ontario. 2012

Coming out: a family dinner drama

This month I am trying out different ways of personal writing and narrative  – here is a poem for #NationalComingOutDay. It’s a lovely memory I have of my Grandfather – who saved the day when my mother finally put two and two together!  

Home from Canada, an extended family dinner

My granddad, parents and us all with

The best dishes, wobbly spare chairs

Gravy and fags, with roast potato top note.

Dad promising again to clear the attic

Stuffed with car coats, rugs and old TVs

A dusty Aladdin’s Cave, if Ali Baba collected

Shit that no one else would want.

Unthinking, in a Yorkshire pudding fugue

I ask for a duvet, there’s loads of doubles begging

“We need one”. I say, remembering

The fight and tussle over the single we have now

In our Toronto flat, second bedroom window dressing

For parental visits, when we rush around

And “straighten up” – flinging the lesbian lit,

Big bellied Goddesses and “Queer as Fuck” t-shirts under the bed

Silence. I look around. Rewind in my head.

“What”? My mum’s face, thunderstruck.

“WE need one?” She throws her fork.

My face is burning -and I realise, this is it. Coming out day.

Not news, I think, for some at this table. But never spoken of.

I am 24, not bold, not proud. I want to kill her; and then after die of shame.

I mumble – yes, for us, for us, its love, we are together.

She huffs and puffs, “you’re not one of those….a his and hers – are you?”

My granddad shifts, clears his throat and pushes his plate away

He looks at me, eyes kind and sad as always, and he says

“Love, love is what we need; finding love is what it is about”

And stunned, we stumble onwards to the apple crumble, with custard.

What’s the story? Narrative inquiry 101

The appeal of using personal story as a focus for research is, I think, an inevitable step given my interest in looking at how people experience the world. I acknowledge the need for quantitative inquiry and have a deep respect for evidence – randomised trials have helped us refine and improve radiation therapy from a fairly scattergun approach when I qualified thirty years ago to the pinpoint accuracy with which we visualise and treat tumours today. But I also think that to treat people, we need to know who they are (to coin a phrase from advocacy for LGBTQ health) and we can do that by eliciting and paying attention to their stories or narratives. It’s often been said that humans are storytelling animals, it’s how we sort out what we’re feeling, how we make sense of the world.  There’s a growing interest in narrative inquiry (NI) in medicine – where currently the story that is usually prioritized is that told by the physician.  We tend to marginalise the patient’s own stories to an afterthought – interrupting, speaking over and jumping to fix problems rather than listening. For people who are ill “stories are a way of redrawing maps and finding new destinations” from the “narrative wreckage” of the illness experience (Frank).

Inquiring with narrative – narratology – also pops up in history, literary theory, drama, art, film, philosophy, anthropology, education and more. The narrative inquiry researcher is not neutral and apart – treating the “subjects” like, well, objects in an attempt to somehow extract the truth without external contamination. Thus this way of inquiry can have a feminist bent, with a firm standpoint in the camp of giving voice to those who were traditionally without.  Research in real life is messy, our canonical view of unbiased investigation is flawed and very much founded in the masculine, the heteronormative, the White and able-bodied – because those are the voices of privilege who don’t/can’t/won’t know that their way of seeing the world is not always our way/the only way. Narrative inquiry stands against this often false neutrality and the approach can be “a political, socially-just and socially-conscious act” (Ellis). In one type of narrative inquiry, autoethnography, the researcher weaves her story into that of her participants – also using herself (auto) to reflect on a particular issue/social environment (ethnography).  In other words it is back to “as I write and theorize the lives of my participants, I theorize my own”.

Good NI can tell a compelling story with aesthetic merit, provide a substantive contribution to a research area and help us understand more about the world and ourselves. It is also risky – writing stories that incorporate our vulnerable selves can open up a Pandora’s Box and feels transgressive to those of us immersed in the norms of scientific writing. Ethical issues abound – personal narratives often involve loved ones or others close to us, how far do we go in storying and restorying their lives? It is not an easy, or straightforward, option. Bear with me as I try it out over the next few months!

My NI academic crush for October is Carolyn Ellis – whose book “The Ethnographic I: A Methodological Novel about Autoethnography” was a surprisingly gripping read for a research methods text! Ellis considers blogging to be online autoethnography, which means I am hopefully on the right track.  She comments that those of us writing from from the margins “are people who seek connections, who have lived on the borders and who now wish to use whatever resources are available to make the world and their loves better”. What better reasons are there to do research?

Influenced by:

Connelly, F. M., & Clandinin, D. J. (1990). Stories of experience and narrative inquiry. Educational Researcher, 19(5), 2-14.

Ellis, C. (2004). The Ethnographic I: A Methodological Novel about Autoethnography. New York: AltaMira Press.

Ellis, C., Adams, T. E., &  Bochner, A. P. (2011). Autoethnography: An Overview. Historical Social Research/Historische Sozialforschung, 36(4), 273-290.

Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press