Poetry – home to complexity, ambiguity and uncertainty

I am delighted to share that my undergraduate dissertation “Understanding patients’ narratives” A qualitative study of osteopathic educators’ opinions about using Medical Humanities poetry in undergraduate education has been published in the International Journal of Osteopathic Medicine. Link below (open access until 29th June 2021): https://authors.elsevier.com/a/1d2Ry6D0fPoY43

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Why poetry?

During my first narrative medicine semester at Columbia University, Dr Rita Charon said golden words that patients speak in poetry and when we listen to our patients’ narratives, we listen for the truth in language. I couldn’t help but feel warmth around my heart as I recognised the astonishing parallel to my undergraduate research paper.

Human beings speak in poems. My pain is walking all over me / I don’t know how to describe this experience, if it was music it would be like Black Sabbath, do you know what I mean? / it’s like it’s hidden in the parts of me that don’t want to be found – are just some of the verbal verses I heard in my clinic recently. When we, as healthcare providers, ask people to describe or explain their painful/illness experiences, we are asking them to summon their world into being; to give concrete expression to something that is novel and unbeknown to them, something that can feel elusive and, as many writers from Virginia Woolf to Elaine Scarry pointed out, is oftentimes utterly resistant to verbal language. This is not an easy thing to do.

Poetry as a medium brings ontological questions to the surface, questions like: What is a person? What does it mean to be alive? What does it mean to suffer? And these questions matter to all of us, regardless of what our medical/healthcare speciality might be.

Unlike prose that often hinges on narrative predictions, poetry offers continual surprise through its unique blend of imagery, mood, metaphors, synesthesia. Poetry refrains from describing and explaining, it simply says This is… – and from this point we are already sucked into the world of feeling, seeing, experiencing, remembering.

For me, poetry has always been about paying a different kind of attention… About activism and social justice, about personal voices as well as communal, about the power of imaginative thinking and (self) compassion. Poetry saved lives, gave voices to oppressed, connected humans through centuries and across cultures, it shaped languages and built nations. If it wasn’t for Dante’s La Comedia Divina, there would be no Italian language in the shape and form we know it today! Pushkin not only created modern Russian language, but invented literary genres so that ordinary Russian people can express their voices. If Rilke didn’t listen to Rodin and went to the Jardin des Plantes to stare at the poor animal until he was unable to do anything else but to write about it, he would have never found a way to express how it felt to live trapped in one’s own body. And many others wouldn’t have felt seen by reading his poem. 

Poetry makes us feel seen and by making us feel seen, it makes us feel connected. It reminds us of our shared vulnerability and humanity.

Poetry also makes us feel uncomfortable. By entering the world of a poem, one enters a world of infinite complexity, ambiguity and uncertainty. A scary territory of vulnerability, felt-ness, and recognition. There is no logic in poetry! I have always thought in order to study creative (and therefore critical) thinking, one should read Rimbaud, Lorca, Lorde, Akhmatova, Plath…

Because of all this, poetry is like life itself (another pearl from Dr. Charon): initially plotless; feels better when you truly surrender to it; it lives and gets born in the body; it is personal and shared but never, ever general! 

Read & write poetry, the world needs it!

Sanja

Between the Borders of Who We Are

Recently I had the pleasure of co-producing a creative writing workshop “Your Story Matters” as a part of the Footsteps Festival, a volunteer-led, collaborative year-long festival that celebrates people living with pain through the means of art and education. Eighteen of us came together, all across the globe, to meet in togetherness, behind our screens. Just like ten characters from Boccaccio’s Decameron who, wrecked by the horrors of the plague in 1348, found refuge in the villa just outside of Florence, learning how to survive by telling tales to each other, we retreated into virtual storytelling in the time of Covid-19 pandemic. Even seven centuries after the inception of Boccaccio’s masterpiece, the stories have remained the fire that kept our lived bodies warm.

But unlike Boccaccio’s characters who had a privilege of inhabiting the same physical place, we were “restricted’’ to the virtual space grounded in the world of social distancing. Covid-19 crisis ineluctably turned all of us into students of space, more precisely of distance, whether we want it or not. One cannot move freely and uncaringly in space anymore without developing an awareness of physical closeness that those around us are comfortable with. This notion of distance thus brings with itself sub-notions of awareness, attention and recognition. 

I began to ask myself if there is an ethical lesson that we, as healthcare providers, can learn from practising distance? Can space in distance be a fertile ground for recognition? What else can flourish in that space? Some of the answers to my questions I found in our writing workshop. 

Our workshop was based on the principles and practices of narrative medicine: narrative listening, narrative humility and narrative competence. Writing and knowing that your story will be shared is inherently an act of risk taking. With this in mind, my co-producers and I decided to start by reminding our participants that we too are stepping into this space as fellow human beings. My friend Clair, a physiotherapist, tenderly laid down cobblestones of confidentiality and choice, for those that would wish to share their stories and for those who would not. Jenny, our collaborator who lives with pain, generously shared some of her personal writings that we exercised together, and I shared my elaboration on what I had received by listening to her story. Whilst we danced to the music of meaning-making, an instant leap of connection and humility percolated the space between our participants, permeated with smiles, interest, sense of safety. The virtual distance between us transformed into a space of holding, seeing and discovering.

The heart of our workshop was conducted by our friend and collaborator Debra, an occupational therapist. Debra compassionately guided our participants into writing exercises, followed by an invitation to join smaller breakout rooms and hold space for each other’s stories. Our participants were invited to listen and pay attention to each other’s word choices, spaces between the pen and paper, evoked imagery, and to their own embodied reactions as listeners. Instead of launching ourselves into the land of opinion or prompting further questions, we all practiced the art of being with.

I am always amazed at what kind of visceral stories people are able to bring to the fore in such automatic, unintentional writing. I was taken back by the story that erupted from my own body, releasing itself from a hidden position of grip. Even though my listeners were my collaborators whom I knew well, it still felt uncomfortable reading my words aloud. Having them recognising rhythm and musicality in places I saw nothing but interrupted blubbery, truly felt like growing wings and catching myself falling. When somebody pays attention to your craft, they inherently recognise your position as a creator. This can be incredibly empowering. My listeners stimulated my agency as they un-hinged me from a seemingly trapped situation into the space of narrative possibilities. As some other participants noticed, after coming back from the breakout rooms, there was a sense of connection, validation, recognition and a true sense of shared vulnerability. 

One of the final crescendos of our workshop was the moment when we thickened our gazes whilst watching Kae Tempest speaking their poetry aloud. Breathe deep on a freezing beach / Taste the salt of friendship / Notice the movement of a stranger / Hold your own / And let it be / Catching… This line Notice the movement of a stranger strengthened an ethical foundation of our writing workshop – the one that values coming to know one’s own humanity in relationship with others. Our participants left the workshop feeling inspired, strong, empowered, awed, seen, touched. Even though the encounter was virtual which could easily be perceived as disembodied, it felt very much the opposite for it was our spoken stories that communicated our bodies. Our final destination therefore wasn’t in the virtual space, it returned us back to the essence of our very selves.

French philosopher Jean-Luc Nancy captured this in his philosophical concept singular plural, which is entirely grounded in the ontology of relation. Following similar thinking line as Levinas, Nancy points out that there is no being without being with, no body without bodies, no existence without co-existence. He recognises that human beings are borders they share with others, and relational actions (such as listening and paying attention) bring us closer to the edges of those borders, restoring our very relation to the self. 

As I write this, I am reminded of a story I recently read by Haruki Murakami, Samsa in love. In his story, Murakami re-humanises Gregor Samsa, a famous literary character who one day woke up in a body of a gigantic insect, by making him fall in love with an un-named woman (let’s call her Isabel). Isabel reminds Samsa that he is alive and relational. The narrative arc of alienation, commenced by Franz Kafka, is therefore recovered and reinvented by the means of love and desire in Murakami’s story. 

It is the very taste of Boccaccio’s medicine, the medicine of relationality, that saved Samsa, that sustained our virtual workshop and that keeps restoring our sense of humanity over and over again. 

Boccaccio’s medicine is what we do in clinical practice: we bear witness to stories. I would argue that practising some distance sometimes helps us to see each other in a brighter light. And I don’t mean distance in a form of spaceship ethics to reference Arthur Frank, but distance as a disposition of knowing how to hold space for the other by listening and by knowing how to keep our own stories at the bay when that means honouring someone else’s.

As we are all reconfiguring the new coordinates of space in our lives, let’s not forget the spatial poetics that imbue our clinical practice, be it face-to-face or virtual, and beyond. Let’s not forget our active role when it comes to creating spaces that allow for connection and recognition; spaces that honour the borders of who we are and what can flourish in between. 

End note:

Thank You to my friend Clair Jacobs who invited me to join her on this wonderful project. Clair and I met at the narrative medicine course (https://narrativerx.thinkific.com) last summer. Clair is a physiotherapist who works in NHS and I am an osteopath working in a private practice. What are the chances that we would have met had it not been for this course? I am afraid very small. Perhaps sometimes on the borders of who we professionally are, we build walls that separate us beyond possibility of relation. And in doing so we risk losing the sight of gazing outwards towards our shared space: people in pain and illness. One of the reasons that I love narrative medicine is its ability to flatten hierarchies and allow for multidisciplinary and truly person-centred care. Clair and I came to know each other not only as two healthcare providers passionate about working with people in pain, but as two women. I got to hear Clair’s sorrows as she got to hear mine… The product was this fantastic workshop that was possible only in collaboration.

Thank you, Clair, Debra, Jenny & all who attended our precious workshop. 

Our next workshop “Your Story Matters” is on the 30th of March at 5:30-7PM GMT:

https://my.livewellwithpain.co.uk/festival/explore-the-festival/

What is Narrative Medicine?

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 silent 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.

Narrative listening 

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  

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,

Sanja 

Further learning:

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

https://narrativerx.thinkific.com

https://corinejansen.com

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.