This is Airing Pain, a programme brought to you by Pain Concerned, the UK charity providing information and support for those of us living with pain and for healthcare professionals. And this edition of Airing Pain has been funded by the Arts and Humanities Research Council. I want my mum. A pain that just backs off for a while. The difference between the morning pills and the afternoon pills and the evening pills and the night pills and the pills and the pills and the injections and the appointments and the pain. A rookery, long abandoned now, had been built inside my body. I don't know where the birds went or why one day they uninhabited, leaving only their barbed wire residues strung across the bowels of my hips. This deep stabbing pain in both temples, the buzzing flight of sugar-fuelled hummingbirds, the way my entire body is filled with pain and unable to move from this chair.
In the previous edition of Airing Pain, we talked about how pain is measured, measured that is, by scientists. As patients, however, whilst doctors may be able to assess our pain, rarely, I suspect, do we have the ability to communicate our private and deepest feelings about living with pain at any one given moment. As Pain Concern's own Breaking Barriers research project illustrated only too well, people living with chronic pain repeatedly report being marginalised and stigmatised by healthcare professionals, their personal networks and the wider public. This invisibility, according to researchers at Lancaster University, is partly because chronic pain can be hard to turn into a story because of its unpredictability and resistance to clear cause and cure. So rather than offering life story narratives to make sense of living with chronic pain, the university's Translating Chronic Pain critical creative project focuses on representing fragments or moments of chronic pain experience through what they call flash illness writing. Sarah Wasson is a lecturer at the English department in Lancaster University. She's leader of the Translating Chronic Pain Project. Well, the project is really quite broad and has many components to it, but the bit that I'm going to talk about now is the creative project. And in that, there are two particular sections that the most significant has been the online anthology. We've asked people around the world to write short fragments of between 5 and 150 words.
that respond to or capture something about the experience of living with pain or caring for others with pain or working through some aspect of pain experience in the broadest sense. So it's a very broad call. The call for work was, we made it into a poem after a collaborative project with pain charities and others. I felt very strongly that if we were going to do a project like this, the goals of the project had to be... specified and formed collaboratively right at the beginning. Among many of us living with pain, pain charity representatives, medics and academics. And it's very important to me that the whole way through the project has not been about academics in one box and people living with pain in another. Almost all the academics involved have either lived with pain themselves or care for others who do. So there's a lot of overlap between the creators and the academics and the people living with pain. Many people are all three.
We brought lots of people together and explored what short writing form might do, how it might be good, how it might be dangerous, what might be promising and the perils of it too. After that, I wrote the poem, which is kind of a call to arms, a manifesto. Shall I read it? Yes, please. Call for creative work, creative manifesto, translating chronic pain.
Since people living with persistent pain often suffer invisibility and struggle for legitimacy and credibility. Since long-term pain is often assumed to be temporary and unnatural state. Since pain experience is diverse and must be understood intersectionally through interweaved categories such as gender, race, sexuality and class. Since pain's causes can be cryptic, multiple, personal, social, environmental, transgenerational and hidden. Since pain's science is neither widely understood nor well-funded and requires widely dissemination. Since pain experience exceeds the language of medicalization.
since pain undercuts illusions of human autonomy and self-sufficiency showing all people are vulnerable and interdependent since pain may impair the ability to work in which case those living it may be seen wrongly as not living a useful life since witnessing pain makes profound claims on and poses challenges for carers family members and healthcare practitioners and since chronic pain affects every dimension of life i call for creative work that engages these invisibilities these lacunae these intersections moments in public or in shadows in loneliness or connection yet Pain experience may not lend itself to established forms of either illness narration or survivorship story.
The experience may lack an ending, where resolution is reached. It may lack a beginning, its cause is hidden. It may break the positivity imperative, to be hopeful, a warrior, a survivor, a meaning finder. It may be incommunicable, resisting representation, yet may simultaneously engender language. It may be a story, not only of a personal journey, but of wider social calamities and inequalities. And it may resist plot, instead being a thing of fragments, glimpses and moments.
This is the first time we've met. I don't think that somebody who wrote that would not have experienced chronic pain. Well, I can't take full credit for writing it because it emerged from the Creative Summit. But yes, I definitely do live with pain myself. I've got about, I think at the last count, eight different ways in which, conditions in which that is part of it. I don't generally share that as the first thing in the project though, because I felt very strongly right from the beginning that I don't want to limit the pain story or in any way to set myself up as an authority. So I tend to be in the background with that. It's very interesting. You were talking about storytelling involving chronic pain. I can't think of many...
great stories in popular fiction or television dramas in fact that feature chronic pain. I was thinking about this this morning actually when I was looking again at Virginia Woolf's famous and amazing essay on being ill and there's that extraordinary line there where she talks about how when it comes to describing a headache there isn't really a long lineage of literary representation and instead what she says she wants to do is to grab the pain in one hand and a lump of sound in the other and squash them together to create something primitive sensual and obscene which is an extraordinary kind of call for innovation and There are many ways in which poets, and I'm thinking again of Emily Dickinson in particular actually, have tried to bend language in the way Virginia Woolf called for, but there's still more to be done because there is something so subjective and delusive about that experience, and to get it to be taken seriously. One of the things that probably drove me to bring all these different activities together was the profound sadness at how much social science research has shown people living with pain feel invisible.
And the word de-legitimate gets used a lot, somehow not rendered valid. And this came out through so much research across all the other countries I was looking at. And it's a tiny response to that, I guess. It's a way of trying to find ways of vividly communicating in short form, also for the hearers, to try and help the reality of that experience more available to people who perhaps don't have that experience. It's to try and help people in all parts of the continuum. That's the hope.
Holly Hurst is a PhD associate lecturer. She has chronic pain and contributed to the Translating Chronic Pain Project. I wrote two pieces about different aspects of living with pain. One was about the spiritual aspect and one was about communication, I guess. So one that I wrote was the exorcism of spasmodic torticollis, which is what I have. Spasmodic torticollis, what is that? It's an inherited neurological condition, which is one of the dystonias. It means that I can't control the muscles in my neck frequently and so that they spasm.
and causing pain and it can also spread through the body, so my arm and shoulder and top of my back are also spasmodic. So this is my best exorcist impression, I tell you with a grimacing grin. I tell you it's a horror movie to make you laugh, so that you can laugh at the girl controlled by demons, as her head turns full circle on her neck, as her smile screams with silent blasphemy, because if you don't laugh, you turn away. You'll never follow Karas through the window, you'll turn and walk downstairs, sit with Chris and hope it goes away. The other fragment is doubt, there is no God.
So doubt there is no God. I know it. And I feel it in this agony, this violence, as my brain tricks my body into ripping itself apart. There isn't. There can't be. Please, God, there can't be. One of the things that I really appreciated about this project is the ability to convey a moment rather than to convey a narrative. And this idea that this could be a moment of thought, of experience that you have, that it doesn't have to be a summary of your whole story.
But those moments of desperation when, you know, you wake up in the middle of the night and your body's screaming and there's nothing you can do about it. When you're trying to achieve something that you simply can't achieve because your body won't obey you. When you've been spasming for a couple of hours and you can't do anything about it. And people tell you things like, well, it's all in God's plan. I know how you feel. I know how you feel. And what your brain tells you, what your body feels, is that that cannot be true. Because this is so horrendous. When people say things like, you know, the creation of the body is a wonderful thing. I don't know what went wrong with mine.
So it's that kind of experience, that kind of moment, without trying to put it within the context of humour or telling a story about my whole journey of faith, but just that moment that's very real, I think, when you're in it. The fragment of time, the moment. We're not talking about this is my illness, this is how it affects me from day to day. It's my thought at a certain time. Yes. One of the pieces that moved me most, one simple phrase repeated multiple times. And that spoke to me a great deal because that is the experience that you have. I mean, I don't know about everyone else, but my brain skips when I'm in pain. So I can't think I get stuck.
It's like my brain stutters and that thought will just come again and again and again. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. I want my mum. Those feelings, I think many people with chronic pain have actually felt that. We know all the management techniques, this, that, the other, but there are times when you just think, I hate this. Yeah.
This is something that I was so grateful to see happen. I didn't know what kind of range of work we would get, but the emotional range has been colossal. So there have been works of a hopeful moment, which we all have also. But somehow the fact that it was a momental glimpse meant people were freed from the compulsory optimism of the long story, which is a bit of a fierce way of putting it. People living with pain do have to internalise certain kinds of management strategy that do tend to orient more towards the hopeful. But this kind of seemed to give a safer space where people could explore a range of emotions, which weren't always totally just upbeat. They were a range. One of the poems that came early in...
and I would love to read it, was Roseanne Watts, The Diagnosis. I thought this was such an extraordinary work because it captures that suspense and fear that can attend on a diagnosis, which of course, on the other hand, many people living with pain do not get one, do not get a diagnosis and really would like one to be taken seriously as well. So this is what Roseanne wrote about with diagnosis. A rookery, long abandoned now, had been built inside my body. I don't know where the birds went or why one day they uninhabited, leaving only their barbed wire residues strung across the bowels of my hips, all sticks and spit, all hollows meant for holding something small, still desperately alive. I'm sorry, I'm afraid. I know only my own dark canopy, its filtering bones of light. It's very, very...
moving and obviously very, very personal. I don't know what condition Roseanne lives with, but there is a common feeling. I thought when I found out about this, well, I'm going to write something myself. I couldn't do it. Because it's almost like learning to live with a condition, you are conditioned to that condition, and I don't want to step off that condition and let my barriers down, if you like. Yeah, very interesting. Because a lot of these are pretty dark. Something that's been very striking in the way people have responded to the project, the email and the feedback we've had, which has been very moving, has been relief at the validation of those moments, actually, of the not feeling alone in the waking at 3am, as you said, Holly, without saying that despair is the only way in.
I think it sometimes is part of the moments and fragments. And I guess if part of that's what this anthology is showing, then I'm glad. Pain and Pain by MSY from the United States. The difference between lowercase p pain and uppercase p pain is huge. Bigger than just a shift key should make it. The difference between, yeah, let's go on a hike today, and I can't walk today. The difference between pain that ends and pain that just backs off for a while. The difference between the morning pills and the afternoon pills and the evening pills and the night pills and the pills and the pills and the injections and the appointments and the pain.
the differences between the screaming in your head and the screaming locked in the gilded cage in your throat, and the knowledge that it is a bird that will never die, it will just remain in you, like a bird throwing itself against a windowpane. Yes, pain and pain are so completely different. I can't believe they're even spelled the same way. One of the ones that I found rather moving, and I think, perhaps I'm wrong here, it's about relationships, it's about loneliness. Yes, this beautiful fragment, and by Lucy Goodwill. She is struggling with the concept of her body as a sensual object. She lifts the covers, brings her feet to meet the floor, and winces as she stands. Legs laced with his, now buckle, as she walks, and shockwaves sparked by his touch are replaced by short-circuiting pain in her nerves. Soft lips, coarse hair, hot skin, cool sweat, forget the pain, leave that till morning.
She makes it to the door, tries not to wake him so he won't see her transformation. From time to time she indulges in the mythology of her beauty, an existence where physicality means something other than her suffering. She pours the coffee that will focus her, swallows tablets that will soothe, takes a shower and embraces the heat that reaches deep into her bones. She follows the steps that will make her feel human, and symptom by symptom she rebuilds the myth. It's written in the third person, but I'm assuming it is that she is the person. To me it appears it's somebody looking in a mirror.
at somebody who's not there. The extraordinary thing that strikes me through a lot of the writing in the project and indeed in a lot of the other writing around chronic pain in memoirs is the strange play of absence and presence to the self, the ways in which in some ways one's experience becomes so overwhelmingly alien and one's body becomes deeply estranged sometimes and I think that the third person captures it so well. What I love so much about this poem also is it shows how pain affects subtle intimate parts of life. And in this case, both her romantic and her sexual relationship is the persona and speaker, but also the sense of one's own appearance and the labors, the everyday ordinary labors that everyone does to kind of, you know, hygiene, that become much more complicated and interesting. And the myth of her beauty, the mythology of her beauty, is something that's presented as achieved with extra labor effort. It's almost a lie, yet a lie that she's invested in. Food for Thought by Ryan Michael Dumas. Just got a letter from disability insurance. Denied.
I'm not disabled enough to get anything, after months of trying to convince them. How do you prove you can't work? I cannot sit up, stand, or walk hardly at all. There's no job I can do while laying down without having to make phone calls. Just laying here, my back aches. But it's the most comfortable position I can find. It hurts my hips, but those aren't important. If I dared to sit up, my lower and upper back would scream in agony. It would not end until I laid back down. I couldn't keep working. I had to move back in with my toxic parents. I have no money, no freedom, and no chance. I have no future, and that terrifies me.
I'm a survivor. The world wants me dead. It's only a matter of time. The creative arts have been used as a way of managing pain. Music, go and sing in a choir, group participation in the arts. But this is much more digging into yourself, private self. On their own, each one as a kind of separate jewel can seem quite perhaps introspective and kind of individual. But the mass of all nearly 90 of them together and the way that one navigates through the site using the randomiser button, for example, makes them feel like they come into interesting points of tension, conflict and reinforcement. So it's a very vibrant...
encounter I found and the credit for that must really go to Zoe and our other colleague Jen Ashworth who had the idea for having that navigation interface. I'm Zoe Lambert, I'm a writer and lecturer in creative writing and run one of the workshops to help develop writing in pain and chronic pain. Sarah asked me to be involved because I've done quite a few community-based workshops, also because I come from an experience of pain as a carer and having witnessed the unusual forms of pain of multiple sclerosis that my mother's had for 20 years. Sometimes she'll try to describe the strange sensations and really struggle because it's not just, oh, it hurts, it's not different. And that really influenced my approach to the workshop because I was thinking around touch and ways of describing sensation and feelings and brought that in in different ways and the kinds of activities we ended up doing on the day. As a carer, highly involved with something, an outsider in many ways, looking into somebody's pain. Yeah, I kind of appreciated what you said before around finding it difficult to start writing about pain. And in the workshop, I kind of wanted the activities to offer ways in, in how you might describe pain through metaphor and images.
I did a warm up exercise around fabric. which hasn't really got anything to do with pain. I was thinking more about sensation because even how do you describe sensations and how things feel like isn't easy. So I brought in lots of pieces from fabric, you know, cutoffs. I saw some kind of scratchy soft things, fluffy, feathery, and use that as an opening exercise to write about the fabric and how it made you feel and the sensations and then kind of words that you associate with that feeling and the sensation of touching it. And then if any images or memories were then generated from that. So kind of using this idea of touch as a way to think about our body and how we feel because you're not having to write anything personal there. It's more about...
the fabric and I often find that objects are very useful for tricking people into writing without worrying about it and overthinking. From that, thinking about how you can write about pain through images and metaphors and getting the participants to write lots of different ones so that you don't feel like every word has to be precious. So pain is a colour, an object, a place, a number, a city, a time of day, a sound, and what pain isn't. And so with the same ideas, pain is not a colour. Pain is not a certain object or place. If you write quite a few of them, you'll have lots of different ones. And maybe just one stands out and you like that and you're like, oh yeah. And then running.
with one and developing that idea and oh look you've got a poem and without even trying and also I was interested in medicalised spaces as well if you're ill or care you often spend a lot of time in doctors surgeries and waiting rooms and hospitals which are very particular and they smell certain ways don't they and there's a certain kind of look to them so I've got participants to kind of write about that and I think that's another way in and that sense of a moment a moment of waiting. The way the sense of the air changes as the day goes on the warming sweetness of the morning the sharp resin of fir trees as the sun heats the day. The cool, soft, evening air with the ground and lake and all the waving leaves mixed in. The way the early evening light strikes the birches and makes them chiaroscuro dramatic. The way my feet burn. The smudged charcoal underbellies of terns over the green water. Their sliding paths through the air. This deep, stabbing pain in both temples. The buzzing flight of sugar-fuelled hummingbirds. The way my entire body is filled with pain and unable to move from this chair.
In Stillness, a fragment, a moment, contributed by Dee Phoenix from Canada to the Translating Chronic Pain Project. Now, I just need to remind you, as I always do, that we in Painkinson believe the information and opinions on airing pain are accurate and sound based on the best judgments available. You should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you, your circumstances, and therefore the appropriate action to take on your behalf.
You can download all editions of Airing Pain from Pain Concern's website, which is painconcern, no gaps, painconcern.org.uk. The Translating Chronic Pain project is ongoing, so we can carry on submitting our own moments or fragments at the permanent website, which is wp.lancs.ac.uk slash translatingpain, or just put Translating Chronic Pain Lancaster into your search engine. The site has a lot of resources on it that are of interest including pain support and information on the academic dimensions of the project but the absolute priority of the site is the anthology and the creative manifesto and we welcome submissions from anybody who feels moved to contribute. We don't mandate that they have certain kinds of pain or that they are living with pain or that they are specific carers or practitioners and it's international.
What sort of advice would you give to people who are listening to this now, who would like to write something, but they don't know how to do it? Get a nice new notebook, first of all. If you've followed the metaphor ideas, and then kind of the idea of listing different images, ways in of describing pain, and doing a lot of it, and then writing lots of different images. There's a lovely writer called Natalie Goldberg who's written a wonderful book called Writing Down the Bones. And I think that's an amazing book for helping people to start writing and throw off the shackles and fears and any little voice in your head that might be saying, oh, you're no good. You've got terrible marks at school in English, you know, or anything.
like that and because it's all about practice and starting a diary can be really good the daily practice of writing of just getting your thoughts and feelings down and not judging yourself as well not letting that little voice in your head say oh no no one wants to listen to what you have to say anything like that but just getting it down and I think building up a writing practice of writing every day is really important we always expect ourselves to write brilliantly the first time that's not true so you have to let yourself develop your voice and just get words on the page there's a lovely poem that's occurring to me now by Ruth Victoria Chalkley who's submitted several beautiful works and it's a response to getting new splints so taking just a moment thinking of the moments in as an empowering framework, you know, just a moment in her day. She gets new splints and she thinks about how they rattle and kind of scrape, especially when they're new and scritchy, as many of us will probably remember. So little details like that, so taking a detail and just hanging out with that detail at a moment of time, without the burden of trying to make sense of one's whole life in prose. Just where are you right now, sitting in your chair, standing, moving, thinking about something, just that moment. Let's have that glimpse, let that glimpse breathe. For me, the thing that I would say is...
Take the thought that you keep having that you can't tell people about, that you don't express to people. So for me, for example, there is no God. That's a thought that's gone through my head multiple times. But it's not something you talk about because then it becomes a narrative and a drama. A phrase that you know that the people who you're with won't be comfortable with you saying. Things like, go away, don't touch me right now. And you can use that and develop from that. Use those things that you're not allowed to say or you're not allowing yourself to say.
and work from there is another sort of place to start. Or take the thing in the other poem that I wrote, take the thing that you always say, but that you're hiding behind, and let yourself be seen behind it. And what I would say, whether you write something or not, just read them, and that might inspire you to write it. I think it really will, because there's so many different ones, aren't there? There's such a range of voices, and so inspiring, many people using photographs and artwork alongside it too, each really giving you a momentary glimpse, and the more the better, because pain needs to be seen, needs to be heard.