My name’s Sarah, I am 32 years old, and I am in companionship with pain . . .
I am trying to listen to you.
To get to know your qualities, character and atmosphere.
To mark you.
To see what you have to say.
And let you take centre stage.
I have lived with chronic back and neurological pain for over 18 years. Until recently I viewed my pain solely as a barrier to my life and work. During the last two years I have been exploring how to turn towards my pain differently and how to work creatively with it through my arts practice. I am a performance-maker, and I devise movement based live art performances in response to my experiences of being alive in the world today. Through working with, rather than against or in spite of, my pain I am realising that living with pain can provide ongoing lessons in vulnerability, unpredictability, openness and precarity. Arguably, these are key lessons when it comes to the various crises we are living in – the pandemic, the ecological crisis, and more. Many disabled artists and activists have reflected that the realisations many are having during the pandemic are lessons that sick and disabled people have (out of necessity) known about for a long time – for example, how to navigate limitations and unpredictability, and what it means to live in a vulnerable body.
Through reframing living with chronic pain as an experience that has validity and knowledge, what can pain teach us? What kinds of knowledges do people with chronic pain have, where these knowledges might provide particular insights into, and lessons about, what it means to live with, and relate and respond to, wider ecological pain and the pandemic crises? What follows is a critical-creative response to these questions, which includes performance text from a solo performance I created and presented in 2020 at The Work Room (Tramway, Glasgow), Pain and I, which explored my relationship to my pain, autoethnographic accounts of my experiences of chronic pain, and wider critical thinking in relation to pain, ecology and precarity.
I am scared of this body.
I am scared of its unpleasant ways,
of its threatening, dizzying, draining and unpredictable ways,
its depleted and loss-of-life ways,
of its troubling and weaker-than-it-was ways.
Donna Haraway argues for the need to ‘stay with the trouble of damaged worlds’ (2016, p. 150). She proposes that ‘all of us on Terra - live in disturbing times, mixed-up times, troubling and turbid times’, where the task is to become capable of relating and responding to a damaged and wounded earth (2016, p. 1).
I am scared of what has been worn away and is unrecoverable.
I am scared of this damage .
Haraway explores radical methods, from human-pigeon collaborations to science fiction, for humans to learn to ‘inhabit . . . [the] vulnerable and wounded earth’ (2016, p. 10). Haraway argues that it is necessary and ethical to ‘stay with the trouble’ of the damaged Earth and with human and nonhuman suffering, where staying with the trouble is how we can become capable of responding to ‘devastating’ environmental events (2016, p. 150; p. 1). Haraway implies that turning towards (as opposed to ignoring, denying or being nihilistic about) the painful realities of widespread ecological suffering is the most realistic way to develop radical methods for contributing to environmental ‘recuperation’ (2016, p. 7). Haraway implies how it is necessary to find ways of being, as it were, ‘truly present’ with the damaged world and ecological suffering.
I am scared that I am to blame and that I could have done more to help before it got so bad.
I am scared that I have pushed this body too far.
That this body forgets about its possibilities, enthusiasm and alive-ness.
I am scared of being stuck in the past, and yearning for how it used to be.
Of being attached to an ideal of this body and wishing it would return to it’s former glory.
I am scared of living with too much regret.
Furthermore, for Haraway recuperation is not about recovering ecologies to an idealised ‘natural’ state but about the possibilities for ‘finite flourishing’ within a damaged earth (2016, p. 10). For me, finite flourishing is the condition of living with chronic pain – there is an ongoing process of loss, and of acceptance that my body is finite in its capacities and possibilities.
I’ve spent a lot of time hating you and a lot of energy to carry on hating you. I’ve hidden you, ignored you, played you down and planned many times that this time you will disappear for good. But you’ve hung around. You’ve stayed with me for 18 years - you’ve seen me grow into an adult, study, make friends, fall in love, fall out of love, work hard, be sure of myself, lose my confidence, grieve, become an aunty, welcome in a new sexuality and start to grow grey hair.
Even when you’re not loud, not making yourself so known, I think about you every day. You’re never not here. You are so committed to me.
You have a pattern that you don’t stick to.
You are ever so present and ever so ungraspable.
You are too real and you are not always believed.
I feel as though I know you very well and that I don’t know you at all.
Living with chronic pain can be an experience of everyday precarity, where stability – if it exists at all – is a kind of constantly crumbling bridge. Anna Tsing explores ‘the conditions of precarity, that is, life without the promise of stability’ (2016: 2), where she proposes that it is ‘only an appreciation of current precarity as an earthwide condition [that] allows us to notice . . . the situation of our world’ (2016: 4). Can chronic pain experience involve the development of skills in living with precarity where this might lead to skills in noticing the precarity of the world that we live in?
You might never leave me.
You are my intimate companion.
My unwanted lover.
You know about rage, shame, anxiety, panic and overwhelm.
You know about kindness, fragility and calm.
You know about those lines that go ‘ring the bells that still can ring, ring the bells that still can ring, forget your perfect offering, there is a crack a crack in everything, there is a crack a crack in everything, that’s how the light gets in, that’s how the light gets in, that’s how the light gets in’.
You contain power.
You contain love.
Because of you I care more.
I respect you.
Perhaps what is needed when it comes to engaging with, and responding to, the crises of the pandemic, of wider ecological pain, is an art of ‘staying with the trouble’ (Haraway 2016), where what artistic practice might offer is the exploration of creative methods for acknowledging and relating to pain?
Haraway, D. (2016) Staying with the Trouble: Making Kin in the Chthulucene. Duke University Press: Durham and London.
Tsing, A. l. (2013) The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruin. Princeton & Oxford: Princeton University Press.
 My personal and performative reflections on living with pain are written in italics and indented.