Fluxambol: Prototyping a Medicine of Uncertainty

In a hybrid essay, artist and researcher Sarah Scaife reflects on her prototyping of a medicine, which she calls Fluxambol.

Any new medicine needs a name and an information leaflet for the patient. In the first project of my practice-based PhD, I’m prototyping Fluxambol. This prototype medicine is manufactured by intentional local walking and dispensed in the form of podcasts and on community radio.

Practice-based research is a rich means to seek fluency and ceremony, to enable and evidence redistributions of agency in narratives of illness. This research seeks to explore ‘medicines of uncertainty’, asking how might polyvocal, practice-based performance methods develop new ways of thinking and speaking about spells of illness in a more-than-human world?

To give you a sense of this, may I invite you to come with me on a short listening walk. Then it will be back to the written page to investigate an associated ‘Information Leaflet for the Patient’ as a form of performance writing.

So come on, let’s set off… I invite you to close your eyes or settle back as you listen.

[Click here for the transcript, available below]

Thank you for listening. Back in more regular written space, let’s consider the ‘Information Leaflet for the Patient’.

These information leaflets follow a standard format which is a requirement of pharmaceutical licensing. They relate to informed consent. The format typically lists and quantifies risks and side effects such as – and here I quote from a treatment I received – “swelling or puffiness… difficulty breathing… these symptoms generally developing in a rapid fashion”.

The leaflets do inform the patient, but they primarily perform legal protection for the investors in pharmaceutical companies. As a legal documentation, the writing cannot be neutral; any text work, says Bergvall (2018, 89) is potentially fraught with tensions which, in her phrase “apply direct, difficult pressure onto each other”.

Such leaflets are now a feature of my life and I find them terrifying to read. Bergvall (2018, 89) speaks of “the psycho-social and political violence of any collective language”. By this I don’t mean the violence of actual war or colonization, but I do mean micro-violence often encountered in the imagery of dominant narratives of illness, for example in the notion of ‘fighting’ cancer with an 85% chance of survival after five years.

One reason I’m curious about medicines of uncertainty is that, unless there is a possibility of agency, there are some things – such as detailed statistical risk information – which I prefer, or choose, not to know.

Peggy Phelan (1997, 17) refers to ‘the cool violence of […] rationality’. The cool violence of rationality…

Let me be clear. I do not reject scientific medicine, it saved my life; but I wish to redistribute some agency in the healing process. That’s why, as an artist, I’ve also made a text work to sit alongside the podcasts. My version of an ‘Information Leaflet for the Patient’ plays with – and is an antidote to – the cool, violently rational writing of the pharmaceutical industry.

 

Koven (2012) writes that brand naming in pharmaceutical medicines is linguistically curious. Latin, and less frequently Greek, classical roots are put together to convey scientific status; particular consonants are used to imply gender of the potential user. Hard sounding Te, Ge, Ke, Xe [T,G,K,E] or soft sounding sss, mmm, vv, LLL, rrr [s,m,v,l,r] letters. You’ll have anticipated the binary stereotyping …

After some playing, I came to a name for my prototype river-radio-medicine: Fluxambol. The name combines two Latin root words, flūxus and ambulāre.

It is suitable for all genders and situated in an elemental, ecological understanding of health which involves care-ful listening. Like Phelan (1997, 17), “I am trying […] to hear the body and its symptomatic utterance, that which always remains its most intimate echo.”

Etymologically, flūxus is the past participle of fluere, ‘to flow’ and related to ‘fluency’. Flux- means a ‘continuous succession of changes’ and is thus a gesture towards both the qualities of a river and my experience of cancer treatment. There is also a pleasing nod to the situational wordplay of the Fluxus art movement, which I only noticed with hindsight.

Ambulāre means ‘to walk or wander about’. It is related to ambīre, to go about, to amble, and so ‘ambient’, meaning both surroundings and a genre of music, and ‘ambience’ – that is, atmosphere of a site.

A diagnosis of cancer is essentially a diagnosis of uncertainty. Rather than backing away or switching off, approaching significant health uncertainty through this wandering meander invites the patient listener to stay with what unfolds and receive the medicine which uncertainty might contain. Phelan (1997, 17) models the possibility of performance writing which, like life, “pushes against the ideology of knowledge as […] forever approaching a completed end-point.”

Through Fluxambol, initially personal, implicit themes imply approaches to being with significant health uncertainty. Thus, moments of flowing connection located in the Commons of the so-called natural world are configured as medicine which listeners and readers might recognise or adopt in their own lives.

A lyric, narrative ecology of life is inferred in the intimate honesty, potential for playful kinship and fragility of lived experience, shared by almost all who inhabit a human body. In this practice-based research, like Phelan (1997, 17), I make a “statement of allegiance to the radicality of unknowing who we are becoming”. Fluxambol contains all these ingredients.

 

Interested readers can listen to the podcasts here: https://soundcloud.com/sarahscaifeart

Sarah Scaife is a practice-based PhD researcher in the Department of Drama at the University of Exeter. Now in recovery from lived experience of breast cancer treatment, her research explores medicines of uncertainty. This PhD is funded by the AHRC through the South, West and Wales Doctoral Training Partnership.

 

Reference list 

Bergvall, Caroline. 2018. “Keynote: What Do We Mean by Performance Writing?” In Postscript: Writing After Conceptual Art, edited by Andrea Andersson, 86-92. Toronto: University of Toronto Press.

Hinchliffe, Stephen, Mark A. Jackson, Katrina Wyatt, Anne E. Barlow, Manuela Barreto, Linda Clare, Michael H. Depledge, Robin Durie, Lora E. Fleming, Nick Groom et al. 2018. “Healthy Publics: Enabling Cultures and Environments for Health.” Palgrave Communications 4,57. https://doi.org/10.1057/s41599-018-0113-9.

Kimmerer, Robin Wall. 2020. Braiding Sweetgrass: Indigenous Wisdom, Scientific Knowledge and the Teachings of Plants. London: Penguin Random House.

Koven, Suzanne. 2012. “How are drugs named?” Blogpost, 14 July. http://archive.boston.com/lifestyle/health/blog/inpractice/2012/07/how_are_drugs_named.html.

Mitchell, Sherri. 2018. Sacred Instructions. Indigenous Wisdom for Living Spirit-Based Change. Berkeley, California: North Atlantic Books.

Nelson, Robin. 2013. Practice as Research in the Arts. Principles, Protocols, Pedagogies, Resistances. London: Palgrave Macmillan.

Phelan, Peggy. 1997. Mourning Sex: Performing Public Memories. New York & London, Routledge.

Scaife, Sarah. 2020. “Magical Aesthetics: Walking with Eight Legs.” In Walking Bodies. Papers, Provocations, Actions from Walking’s New Movements, the Conference, edited by Helen Billinghurst, Claire Hind and Phil Smith, 1–10. Axminster: Triarchy Press.

Soundart Radio 102.5FM https://soundartradio.org.uk/

Taylor, Matthew and Ilaria Capua. 2021.”‘In conversation.” RSA Journal, Issue 1, 2021. The Royal Society for the Encouragement of Arts Manufactures & Commerce.

Williams, Tina. and Havi Carel. 2018. “Breathlessness: from bodily symptom to existential experience.” In Existential Medicine: Essays on Health and Illness, edited by Kevin Aho, Chapter 10. London: Rowman & Littlefield International.

Wilson, Shawn. 2008. Research Is Ceremony: Indigenous Research Methods. Black Point & Winnipeg, Fernwood Publishing.

 

 

Appendix 1

Transcription of the spoken sound file. References are not spoken but are given in Reference section

There is increasing evidence to indicate that regular walking supports the body’s immune system to deal with and recover from cancer. During my own lived experience of cancer treatment, I set out to walk the path between environment and health. As you’ve probably noticed, Covid 19 continues to reveal connections between health and environment which are live and pressing. Virologist, Ilaria Capua comments on health as a system which links economics, environmental concerns and well-being; “the realisation of our interconnectivity”, she asserts, “is perhaps the greatest learning of the pandemic”.

Linking environment and health is not a new idea in most cultures: Capua, for example, refers to the Ancient Greek philosophical view of health as a balance between the elements of fire, water, air and earth. Ambling along the River Dart, where I enjoy health-affirming cold dips among kingfishers in summer sunshine, I give thanks for the elemental qualities of this water which quite literally flows into our taps at home to become our drinking water.

As an artist, walking is an established strand of my research practice. The walks I make are intentional, often prayers. In particular, I walk along the River Dart, near my home. The sounds, smells, rhythms and routines of this living ecological system are a healing habitat for me. The river ecosystem is a hospital in both the contemporary and historic sense of affording hospitality and shelter.

Each walk I make is a sonic and embodied action embracing entanglement between this body of water and the human body, which is understood here too as a porous landscape and fragile ecology. Rhythmic walking by the river becomes a means to make sense of, or at least accept, the as-yet unfathomable. Making the ritual walks activates the river medicine in me.

One aim of this first project is to find greater fluency around my research concerns, through Nelson’s practice-as-research processes of testing and prototyping. Making a series of six radio programmes and a written ‘Information Leaflet for the Patient’ enabled me to experiment with language, vocabulary, style and tone of communication in relation to my enquiry.

The term polyvocal might call up not just the voices of multiple beings but the varied ways a human voice can be used to connect with the wider world. The radio programmes and leaflet explore a range of registers including site specific found and encountered sounds, song, incantation, academic voice, rational – irrational voice and moments of quiet.

As indigenous scholars and activists such as Robin Wall Kimmerer, Sherri Mitchell and Shawn Wilson articulate so compellingly, vibration, dissonance, resonance, harmony and rhythm permeate the more than human universe.

The walking practice frames sound-based works. The walks are recorded, edited and freely shared on the digital platform SoundCloud. They are broadcast on Soundart Radio 102.5 FM, a licensed arts and community radio station born out of Dartington College of Arts in Devon. This is slow radio, walking pace, heartbeat pace. I speak to the medicine of the river: I conceive of the programmes themselves as medicine, made in the spirit of a participatory ceremony which invites others to join me, and the river, in their imagination.

In this way the river-radio-medicine becomes a bottled tonic or remedy – albeit outside the shareholder economy of the pharmaceutical industry – which (if you have access to the Internet) you might take wherever you are and whenever you need it. The podcast-making process distils these local, personal rituals and recasts them to become part of the commons.

Like Williams & Carel, I understand health as “a fluid, complex set of experiences” beyond the scope of evidence-based medicine. My enquiry seeks to change the stories we tell ourselves and each other about health and who or what claims the agency in these stories.

To investigate this further, I devised an information leaflet to sit alongside the river-radio-medicine. I want to explore the ‘Information Leaflet for the Patient’ format as performance writing.

Caroline Bergvall, who together with John Hall and others, set up pioneering degrees in performance writing at the former Dartington College of Arts, reminds us that the context of writing is crucial, as is the context of its reception. She calls us to consider audience and purpose.

So let’s now come back into this more mainstream academic space to speak about this leaflet.

[birdsong plays out]

 

 

 

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