Once upon a time
Different things make different people feel like themselves. For me, that has always been the written word. Even though I can appreciate many forms of art, it is the narrativity, imagery and performativity that lives within the world of text that makes my heart beat a little bit faster.
During my first degree in Croatian language and (world’s) literature, I dreamed of teaching students the work of Kafka, Cervantes and Dostoyevsky one day. If you watched Dead Poets Society that is exactly how the scenario was playing out in my head. We don’t read and write poetry because it’s cute. We read and write poetry because we are members of the human race. And the human race is build with passion – the words of Robin Williams’s character echo in me to this day.
But just how it often happens with those early-adolescence-borne-loves, there comes a point when the extent of discrepancy between the reality of how things are and the reverie of how you expected them to be becomes too heavy to bear. Seeing art merely through theoretical lenses tears art apart! After four years of studying, nine years of obsessive reading, and much soul searching and deliberation, I left my college.
One year later, I found myself living in London embarking on a part-time integrated master’s degree in osteopathy. The ego bruise caused by going from writing literary essays about traces of Homer in Joyce’s Ulysses in my mother’s tongue to learning a whole new language through physiology and anatomy books was real. Nonetheless, I plodded along as a good and eager student, but it was not until my fourth year that I felt like something in me had come to life, a feeling long familiar. It was the year I started my osteopathic placements – the year I started to work with patients, real people, people from all walks of life and many, MANY people living with persistent pain. It was also the year that I discovered the field of narrative medicine, as I stumbled across Dr. Rita Charon’s TED Talk. And it was the year when I decided to do my dissertation about Medical Humanities poetry.
The silenced but ever growing voice in me was heard. The patterns started to build a shape.
I am now four weeks into my first semester as a student of professional achievement in narrative medicine at Columbia University. Not a day goes by without someone asking me what it is that I study. Even though I strongly believe that narrative medicine needs to be experienced, here is my best attempt in trying to explain what it is and what it has to do with pain care.
What’s in the name: Narrative Medicine?
Put plainly, narrative medicine is an interdisciplinary field where humanities meet healthcare. Put more academically, it is a discipline that blends elements of narratology, literary/aesthetic theory, phenomenology, narrative ethics with health and healthcare. Put for friends and family – narrative medicine teaches one how to be a better listener and a better person altogether.
Currently, there are different terms and flavours of narrative healthcare so you may have heard of narrative medicine, narrative-based practice by Dr.John Launer (which I am yet to experience), narrative therapy, narrative reasoning. Even though these are all branches of the same tree there appear to be some nuanced distinctions. I believe my present thoughts best resemble form and shape of narrative medicine that emerged from Columbia University in 2000.
Narrative medicine is often defined by Dr. Rita Charon’s term narrative competence: the ability to acknowledge, absorb, interpret, and act on stories and plights of others. It recognises the centrality of storytelling in healthcare; be they the stories we tell each other, the stories we tell ourselves, or the wider narratives that surround and infiltrate us, with or without our awareness. Nested within the person-centred framework, narrative medicine places value on the relationships between people-selves-world(s).
To further understand the relational foundation of narrative medicine, one has to understand the epistemological pillars upon which it rests: narrative listening and narrative humility.
Open your mind as widely as possible, and signs and hints of almost imperceptible fineness...will bring you into the presence of a human being unlike any other Virginia Woolf, How should one read a book
The way we listen informs the way we live says narrative medicine scholar Julia Schneider. I had been thinking about this notion last week when Columbia faculty asked us to think about the story that has “worked on” us. I remembered a novel I read when I was 17, The Unbearable Lightness of Being by Milan Kundera. I remember devouring the story as I recognised my young self in the character of Teresa. At the same time, my mind also embraced alternate possibilities shaped by another character who is pure antithesis to Teresa, Sabina. I ended up making choices in my life based on what Sabina’s character had inspired in me. Listening truly does inform how we live our lives and what kind of persons we become.
At Columbia, narrative listening is practiced by the process of close reading. Each week we close read different forms of art together. This means that one week I will be gazing at the painting from the 16th century, alongside somebody who lives on an opposite hemisphere, embedded within a culture and history completely different to my own, and in that process of gazing together at the work of art, our worlds will intertwine beckoning us into connection. In that process of polyphonic gazing, we will make ourselves available to see things differently, to adopt different points of views, to enter into what is possible. This is not different to what happens in clinical practice, as we gaze together with our patients at the mystery of the human body, movement preference or the nature of pain.
Narrative listening is, in itself, an epistemology. It is an ethical choice as my friend Corine Jansen taught me: a radical act that flattens hierarchies and transcends boundaries such as gender identity, language preference and colour of our skin, leaving us naked, covered “only” in our humanity.
Which brings me to the next pillar, sister of narrative listening: narrative humility.
Narrative humility is a term attributed to Sayantani DasGupta, another faculty member at Columbia University. Narrative humility is an epistemological position that recognises the impossibility of ever truly and totally knowing what the other person is going through.
By teaching the process of thinking with as opposed to simply thinking to, using relational prepositions such as with and alongside as building blocks that position patients and healthcare providers on an equal footing, narrative medicine training inherently teaches framework of narrative humility. Framework of trust. It reminds us that professional knowledge is a privilege of knowledge, not a privilege of power, and that professional knowledge needs to always be married with another, equally important knowledge – the lived experience.
In this way, as healthcare providers, we are starting from a “bottom up” position where we are about to learn from our patients, how that what we know can help them to move forward. The rest is dialogue.
Narrative medicine and pain care
As I write this, my mind brings up a memory of an avant-garde play by Luigi Pirandello Six characters in search of an author. It’s a story about six nameless characters stuck in an unfinished play searching for the author who allegedly abandoned them. The characters claim their story is incomplete. Sometimes I think this is all of us, as human beings, we all seek in various ways to reaffirm the authorship of our life. Deep down, we want to know that our story belongs to us. And pain… it seems to me that pain takes that signature of authorship away.
Pain dis-engages us with the world. It complicates our sense of time, sense of space and erases our sense of self. It robs us from what is meaningful as it paints the world in immutable colours.
Stories told by people living with pain are no fairy tales. They are complex stories, stories seemingly lacking form and meaning, anti-narratives. They make us, the listeners, feel uncomfortable unless we have a certain threshold to bear witness. My worry is that sometimes we, as healthcare providers, are held back by our commitment to be right and to always have the answer. Learning how to be with these “messy stories” is what the process of close reading nurtures.
The literature behind the biopsychosocial model of care supports the view that we should be asking our patients open questions, asking them to tell us their story. But I am not sure if we always have the skills needed to receive the story. I am not saying I have those skills perfected either, but I believe, in a clearly biased way, that narrative medicine has the potential to train the ability to hear the stories and know what to do with them. Tell me your story is a great question but only if the person sitting opposite is ready to step into the open. Learning how to recognise if the person is ready, learning how to be comfortable with discomfort, learning how to hear what is hidden in seemingly thin and untold stories is what narrative medicine is all about.
We know better these days that people living with persistent pain are undergoing testimonial injustice – an injustice of not being believed. Learning how to approach the person from a place of narrative humility is just another way of communicating “I will never fully understand what it means to be you” therefore “I have no other choice but to 100% believe everything you say”.
Not all “pain stories’’ are told in language, nor the metaphor as a narrative feature is the centrepiece of narrative medicine, but here is one example from my clinical practice where narrativity met pain care. Recently one of my patients told me that she feels like she is locked in a cage. I wondered aloud what would be like to not be locked in a cage? Together we elaborated on the possibilities of opposites. She shared hers, I even shared mine. By gazing at this metaphor together I found out so much about who this person is, what matters to her, what her values are, what is truly lying beneath the metaphor. I did not feel like I was stepping outside of my professional remit – I simply chose to hear what she said from a different angle. Her choice of words bewildered me as I turned a face of curiosity toward her.
So, what does all this narrative business has to do with pain care? Well, I think it has to do Everything!
I am perpetually amazed by what narrative medicine brings to my professional (and personal) life. Some days, it feels like it comes easy to me, some days accepting that “I don’t know” is the best I can do. There are amazing healthcare providers out there who already practice this type of work without knowing that they “do narrative medicine”. After all, narrativity is inherent to our identities and our sense-making of the world as wounded storytellers.
Until the next story,
Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust, Rita Charon, JAMA. 2001;286(15):1897–1902
Narrative Humility, Sayantani DasGupta, Lancet, 2008;371(9617):980-981
I also want to acknowledge women who inspire my thinking: Dr.Rita Charon, Julia Schneider, Clair Jacobs, Corine Jansen, Corina Breukel, Lissanthea Taylor, Sara Slack, and many more.