Metaphorically speaking

As we crash land into 2017 – and the start of my “serious” research year – I am starting to feel the weight of this doctorate settling on me. Perhaps like the famous elephant being felt by several blind men in search of THE TRUTH. I remember this feeling from my time as CAMRT president, looking back I have a sense of wonder that I actually worked full time, carried on raising two children and simultaneously managed a huge work load as board chair (including hiring a new CE in complete ignorance of executive searching and an inordinate amount of travel).  I am in awe of my past self, and wondering if that was a fluke or I can manage something similar with this next stage of research – despite having less brain cells, fluctuating hormone levels that make me doubt my sanity and no letup in the demands of an equally hormone-raddled 15 year old and a 10 year old entering the years of sarcasm and parental-loathing.

But when all else fails, there are always books, and stories, and language to give us solace. Reading any blog, or listening to people talk about their doctorates you can’t help but trip over the word “journey”.  We communicate with metaphor – after finishing my narrative inquiry course I am constantly struck how much we explain something by using another thing! Even my EdD notebook has the words “Go your own way” on the front*. Illness narratives – or any kind of quest – are often framed as journeys. Arthur Frank described the “shipwreck” metaphor that people with serious illness often use. Picking up the pieces, losing their compass, feeling adrift, rebuilding the boat, getting back afloat…. The doctoral journey metaphor is a well-worn path (see what I did there?)  – we encounter bumps in the road, sudden and unexpected turns, the journey may be arduous and long but we can often see the end of the road and feel triumphant when we reach it.

For your education and amusement, then, I have collated an initial list of other metaphors used by my EdD cohort and professors this weekend. Enjoy them and feel free to post others you have used/know in the comments!

The builder: the research process relies on a strong foundation; a good blueprint is essential, take time to lay the foundations well before you move ahead because you want your final edifice to be sturdy and strong.

The oil slick: your project may look amorphous and unformed, you may need to contain the boundaries, don’t let it spill over or you will lose control.

The dance: you need to start slowly and learn the basic steps, once you get into the rhythm you will gain confidence, eventually you will throw yourself into a whirlwind of artistic self-expression that is uniquely yours.

The sculptor: out of the raw clay of passion and intent will emerge the idiosyncratic and beautiful piece of work that is your contribution to the academic world. Take care to hone your tools, and think twice before you chip off a chunk, you may need to measure twice and cut once (OK, that one is a tailoring metaphor….)

The party: picking up the basics of your theoretical framework and positionality is like coming late to a party (except probably there is no wine, and you don’t have to dress up). There is a conversation going on around you (probably about Foucault) and you have to place yourself within it, figuring out what you need to say to add to the ongoing discussion.

The lightbulb: this is a bit of a cheat but one member of my cohort suggested her dissertation should be called “fumbling around in the fucking dark”. I liked it so much I decided it needed to be kept for posterity.

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*The only excuse I have for this is that it was 50% off.

So this is Christmas – you should be writing

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This week I wrap up my narrative inquiry course and look ahead to the very last (!!!) class in January. We began the EdD last summer with a doctoral seminar (aka: this is what you are letting yourself in for, and here’s a film about Hannah Arendt smoking on a couch). This January’s class is the second and last doctoral seminar (aka: I hope you were paying attention because this shit is about to get real). In June we have “comps” (aka: stand up there and prove you know what you’re talking about, and we’ll let you do some research for reals). Just in case you thought it was smooth sailing after that, there’s the research proposal next and then the infamous institutional ethics hurdle and then…… we are deemed ready to go off and gather data followed by a long period of writing, crying and dark nights of the soul. Next, that fledgling dissertation runs the gamut of revisions and re-revisions before a final submission. Oh, and then a defense. But yay, last class….

The narrative inquiry course has solidified my thinking about how I want to do my research. I knew that my story would be part of the work, but didn’t have a good idea of whether that was possible. Now I do. I am going to write a series of stories using the data from my participants, and my narrative will be part of that. I’ve also become increasingly interested in poetry. I am thinking I might use it as several placeholders or introductions to sections in the writing.

The research is on “coming out”, I have been reflecting on and reshaping some of my memories – in part to prepare and practice. Here is a gift you didn’t know you wanted – a glimpse into negotiating LGB disclosure with patients having radiation therapy treatments for cancer.

Happy Christmas – see you next year!

 He is one of them and all of them, my next patient

The bluff King of Orangeville, or Orillia, or far away Bobcaygeon

Doesn’t like the traffic, supports the Jays (don’t we all) and this disease

This indignity has caught him, like a poleax, right between the eyes

He’s warming up on day 3, unlike my hands – but you know what they say

We cover the weather (seasonal), the traffic (catastrophic) and his daughter’s wedding

He needs a suit, the wife is asking if he’ll be well enough, will he, will he?

How about that diarrhea, that pain, will he last, will he last, what do I think?

I demur, I support, I encourage. I pat his hand as we leave the room

Not long, keep still, we can see you on the cameras, wave if you need us.

Then we’re back, he smiles – my girls, my girls, you take good care of me.

How lucky your husbands are, to have such kind and clever girls.

I pull up his pants; lift him as he grips me tight, catching his breath

He looks at my bare hand, smiles. I should introduce you to my son.

By the time the words come, he has left the room. Same time tomorrow.

I move the machine back around. Seen and not seen, there and not there.

Midlife, legacies and the death maths

I recently taught a session for the University of Toronto’s MHScMRS program on “Professional Legacy” as part of their leadership course. The (frankly a bit pompous!) title and invitation came from a dinner conversation with my old friend Cate in Toronto a few months ago. We’ve both had our 50th birthdays this year. The midlife crisis is a well-worn trope, it’s become a running joke in my house (where my wife is close behind me in age) that anything and everything can be attributed to hormonal fluctuations (just try Googling “menopause”). For a few weeks after “the big 5-0” nothing seemed to be different, just a number, right? But after a couple of months I started to fret, to worry about my health, my work – my internal compass seemed to be spinning. I started to do the “death maths” – statistically speaking; we’re past our midpoint and on the downward slope – I joined a gym, introduced myself to chia and almond milk. I talked a lot to women around my age – did they feel like they were going slightly crazy? Not just the physical symptoms, did they feel like they were becoming somewhat unhinged? And, resoundingly, they did. Forgetfulness, feeling overwhelmed, health scares – and lots and lots of wondering “My God, how did I get here?” Despite the metaphor of being “over the hill” it seems that, in reality, happiness is U-shaped. Middle age is our saddest time, with the late 40s being the lowest ebb psychologically speaking After that it is actually uphill! So perhaps less of a comedy midlife crisis, and more like a normal life condition.

Gail Sheehy famously pointed out in “The Silent Passage” that women after menopause often enter a new phase of creativity. The hormonal storms that have rocked our mental boats for the past 30 or 40 years die down, and in the calm that follows we can pause and examine what we have accomplished, and what there might be left to do.  Cate and I talked about this over dinner, and how we suddenly feel that (career wise) time is running out. What we do, what we leave behind, should be meaningful if at all possible. To paraphrase William Morris, we want to devote our energy to nothing that we don’t know to be useful or believe to be beautiful. In reading for my EdD narrative inquiry course, I also came across Erik Erikson and his theory of the stages of psychosocial development. From your 20s to around 40, according to Erikson, your life work is “love” (how great is that?). We labour to develop intimacy and connections, and to build the foundation for a life well lived with people that we care about. During middle adulthood (from 40 to about 65) we start to wonder what we will leave the world. This stage of “generativity” could be work, children, pastimes – but it is important as we move forward and if we feel that we haven’t done this well, we regret, we stagnate and, ultimately, wonder where it all went wrong. Sounds like a midlife crisis to me.

So, all things considered, I was due for a bit of introspection. Talking to Joanna, Winter and Tasha (the MHScMRS students) was a great opportunity to do that. My “work-life blend” is always busy, often difficult but usually joyful. I realised my job and my professional identity are not the same. When I bump up against the reductionist, managerial side of health care and get frustrated, I can refocus on research, education and the things that get me up in the morning. I realised that the undergraduate English degree that I turned down thirty years ago for “science” and job security, and my ongoing love of reading, and writing have been integral to where I am now in the EdD program at UBC. I realise, looking back, that the year I stopped being a radiation therapist because my father died and I just couldn’t do it anymore was the most important year of my professional life – when I started an undergraduate degree, and had the time and space to look around, to think about what I wanted to do with the rest it. I am not sure how much my own reflections about my “professional legacy” or journey were helpful to other people, but the opportunity to start thinking about it was invaluable.

Informed by:

Holstein, J. A. & Gubrum, J. F. (2012). Varieties of Narrative Analysis. Thousand Oaks, California. Sage

Sheehy, G. (1992). The Silent Passage: Menopause. New York, New York: Random House

Sawyer, M (2016). Out of Time. London, England: Harper Collins

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The power of stories

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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

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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

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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

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What’s the question???

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Our last summer course was intended to get us to take the first steps towards our research question. We looked at conceptual frameworks and methods, literature reviewing and tried to find a “home” – or a way of thinking about research that felt right to us. We all vaguely knew what our fellow-cohort members were thinking about investigating but we workshopped, we brainstormed with flip charts, we picked holes and (sometimes) we patted backs. A few people have thrown out the research thoughts they started with and found new ones, job roles have changed, interests have shifted and the cold light of day is starting to show some of the cracks in our idealistic initial ideas.

One of the reasons I wanted to do this degree was the luxury to be able to focus on a substantial piece of research. I had always wanted to re-examine my experience as a queer health care professional (HCP) – partly for me, as I get older I find I want to look at things from another angle, perhaps to see what I missed the first time. The other reason is that quite a bit of attention has been paid to making the experiences of LGB patients better – but almost all research that looks at HCPs is from a deficit perspective – focusing on negative experiences such as bullying or homophobia in the workplace. I think it is a lot more nuanced than that – I know that LGB staff can help LGB patients feel more “at home” –  but I also think that the delicate and daily dance of coming out still looms large in many HCPs’ lives and that we can do a better job at understanding, and supporting, us/them.

So after a brief dalliance with patient experiences (see last blog!), and a pretty hot and heavy flirtation with Dorothy Smith this summer (of Institutional Ethnography fame), I am back to the beginning.  Last year I was thinking of using interviews, and phenomenology – but the further I travel, the more I want to bring my own experience into the mix. Isn’t that why I got into this? In one of my assignments I talked about this process being like a “late life coming out” and after having stood up a few times and “exposed myself” as a lesbian behind a podium talking about my recent paper…..in front of my actual work colleagues, peers and friends…..that is exactly what it feels like.  I wrote in February about finding my research voice – it’s clear that my voice is critical, and very personal.  I mean critical in the way described by Kinchloe and McLaren (2005, p. 304) in that research can never be entirely neutral or value free, and that “mainstream research practices are generally, although most often unwittingly, implicated in the reproduction of class, race and gender oppression.”

This fall I am looking at narrative inquiry (my last elective) – and reading a lot! In health care storytelling pops up in narrative medicine (described in this Ted talk by Rita Charon) and in illness narratives like those of Arthur Frank in “The Wounded Storyteller” where he explores the very human need to make sense and meaning from illness (interestingly, he says that he wrote it partly as an exercise in “self-healing . . . to assure myself I wasn’t crazy”).  As a lifelong lover of reading, I think I may have found the perfect fit for my research approach!

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