Linking humanities and sciences to think about painful experience

If I feel physical pain, anguish, or anxiety, and I want or need to explain to someone else what I’m feeling (maybe you are a doctor and you say, ‘tell me what the pain feels like’), I need to use modes of expression that stand outside of my sensations, and serve as proxies for those sensations. For example, you might ask me, ‘on a scale of 0 to 10 how bad is the pain’? You are asking me to translate an individual experience into something socially knowable, something outside – both – me and you. 

In making that translation, my original understanding of my pain may be altered – remediated. For instance, I say, ‘I think it’s about a 5’. Now, I have a new way of imagining my pain – it is, at least, not a 10…. So you then say, ‘well that is reassuring since last week you said it was an 8’. 

These are, of course, what we might call, ‘on paper realities’. The pain is ‘not’ a 5. It is not an 8. It is not a 10. It is, ‘this pain’ and, in real time, over time, in different places and situations, I am experiencing it. It is, in other words, what it is, because as some sociologists who study pain have observed, pain is private and unique. But if we represent pain to others whether in numbers or in words, we begin to craft narratives about that pain, and our relation to it. These narratives might be short: for example, ‘it’s getting better’ As we speak such words, and hear ourselves speaking them, we might then feel grounds for (some) optimism – we might think to ourselves, or say to others, ‘maybe, eventually, this pain will improve’…. That optimism might in turn help us relax, make us feel (even if slightly) more secure, more confident of our future. From there, we might find we begin to think of things other than our pain. So, the production of a narrative, or story about pain can lead to a kind of virtuous circle: we gather, increasingly confidence, optimism, mental distraction … And from that, perhaps, the blood flows, our breath slows, time flows, and maybe a sense of being (slightly) better grows. 

Translating pain into a number on a pain chart, if the pain can be charted as ‘going in the right direction’ can in other words, work in ways not dissimilar to how placebos work. We hang a narrative frame around our pain experience. That frame may operate to distract us and structure the perception of our pain, give the pain meaning, and shape our expectations of what might happen next. Such narratives can reassure us; they can give us hope. Indeed, when we get news from health professionals (‘this will hurt for another week but then, gradually, you’ll start to feel better’) we are being offered grids within which to make sense of what’s happening, within which to expect certain things to happen, and to change. Such narratives us not only help us to endure, but, often, to improve, to the extent that a positive outlook may be linked to physiological matters. 

But it would be a mistake to focus only on the importance of remediation in terms of individuals who are ‘in pain’. Finding ways of framing pain is simultaneously finding ways for those individuals to share their pain experiences with others. It is about drawing others into expectations about that pain, into empathic relationship with the person in pain, and into becoming corroborative witnesses who can then say, ‘I feel your pain’. In other words, through remediating pain (being able to lodge it inside narratives that can be told and shared), the problem of pain is itself shared. And as the adage tells us, often, ‘a problem shared is a problem halved’.

For these reasons, how we communicate about pain (the words available, for example) in turn shapes our understanding of pain (gives it meaning and significance) and in turn can frame pain perception. This framing can matter hugely to the pain we actually feel, both its quantity and quality. Studies in perceptual psychology have demonstrated this point repeatedly. They have shown how sensations can be diminished and augmented through different ways of framing or setting up situations of perception. While these findings most clearly apply to relatively minor pain, they have also been shown to apply – under some circumstances – to pain of greater severity. They highlight how we can experience fantom sensations (I might ‘feel’ you touching my hand when in fact you are not) and, conversely, we may be unaware of actual sensations (for example, I might not ‘notice’ that the water is cold when I swim in the sea in January). Where our minds (and hearts and emotions – see below) are will frame how we understand both situations of pain and thus ‘our’ pain. They may affect our perceptions of our own bodily sensations and thus our overall self-understandings of being well or ill.

Pain remediation is, in other words, an important feature of ‘getting better’. But what if the prognosis is poor, for example in the face of life-limiting illness or the very end of life? There, too the remediation of pain is important, as important as in any other case even if, ultimately, things cannot ‘get better’ (for after all, we are alive until we are not and quality of life, pain management is always important). Remediating pain can help people who are dying to find ways of bearing physical pain (as already discussed). It can also address the sorrow that is  so often associated with impending leave-taking – for the person who is dying and for their loved-ones and others who care for them. In all cases, with all kinds of pain, it is important to think about strategies for drawing pain on to a socio-cultural – shared – terrain. This is the ‘medical’ way of thinking about the importance of culture in healthcare. But it could be put differently: we could also say that the things that can help to mitigate pain are the things that are at the core of human being, namely, to find ways of supporting and making meaning together. And that, ultimately, this is what medicine is doing: assisting us to find ways of being and staying together until the end. That meaningful being/being with can – often – be transformative, for everyone involved… And the remediation of pain – both the individual’s sensation of pain and the social relationships involved in ‘sharing’ pain – can happen through many things that come before, or after, words. 

One of the most highly researched areas around pain and culture comes from music therapy. There it is possible to see what music can offer in situations of psycho-social-physical suffering – Total Pain (Hartley 2914), in other words. 

Music Therapists know this very well. Tia has learned a lot about it from her Care for Music colleague, Wolfgang Schmid. He writes about this in connection with ‘Anders’, a man in extreme pain:

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Tuesday morning

Anders´ physician and nurse at the hospice suggest music therapy for him. They describe him as constantly distressed by both, an extreme pain in his lower back and the existential pain of dying, of having limited time to say farewell to his loved ones and coming to terms with a terminal diagnosis. His pain is complex, affects his bodily integrity, perception, emotional and social life. It causes restlessness and disorientation. It is difficult to handle with medication only. Anders hardly gets any rest or sleep, moves almost relentlessly from one side to the other in his bed to find a more comfortable position. 

When we meet the first time, Anders looks questioning at me with a doubting expression of “What? Music? Now?” and finally says: “Actually, I don´t care. Just do whatever you think you need to do”. 

I take a chair and sit next to him at his bedside and play on the Kantele. He sobers down, breathes more deeply and falls asleep. After some minutes, I leave the room quietly.

Later, Sandra tells, that Anders had asked her about the music. He was not quite sure, if it had been for real. We go back to Anders and he smiles, calls me the “German doctor” and asks Sandra to take a picture of us and the Kantele. He wants to have proof to show his wife when she comes to visit him in the afternoon. 

Tuesday afternoon

I get an e-mail from Harald, Anders physician “Hei Wolfgang. Vår felles pasient beskrev en kraftig betryggende effekt av musikken din. Effekten ligger jo ganske sikkert i spillingen og kanskje synkroniseringen med pusten, men av nysgjerrighet, hva heter det instrumentet du brukte? Hilsen, Harald”. (something like: “Hello Wolfgang. Our patient described a powerfully reassuring effect of your music. The effect is certainly in the playing and perhaps the synchronization with the breath, but out of curiosity, what is the name of the instrument you used? Greetings Harald”.)

Thursday afternoon

Anders just got a dosage of strong pain medication. This time, his partner is present as well. I play for the two of them. During the first improvisation on the Kantele, Anders relaxes. He keeps his eyes closed after I have ended the music, so I play a second and third time. His partner sits in a chair and says afterwards that the music was very calming. 

Anders explains: “I feel, the music is meant to be for me. It relates to me. I fly away with it.”

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Many scholars, across the areas of music therapy, medicine, medical history, sociology and philosophy have considered the role of music as a medium of pain management. They have described how pain is a complex experience not a universal neurobiological condition. They have suggested that pain should be conceptualised as a cultural, emotional, personal and situated matter. In short, pain is not an unmediated response to an injury or biographical experience. Rather, it is a multidimensional phenomenon that involves and takes shape in relation to how it is mediated and remediated – transfigured in other words.  How the mechanisms by which ascending pain signals reach the brain and come to be processed takes shape in relation to things outside the body. How music can affect this process involves many complex, interacting matters. A few of these are:  

• Music may prompt or hold social connotations such as relationships, identities, memories 

• Music’s ‘movement’ may encourage or support physical processes or adjustments such as breathing rates, heart rate, postures, movement patterns

• Music’s stylistic and genre associations may support forms of activity such as talking, sleeping, waking, eating, thinking, day dreaming

• Music’s various ways of ‘hooking us in’ may distract or divert attention from the perception of pain and/or negative thoughts

• Music’s temporal flow may repackage the perception of time, making an interval go more slowly or more quickly 

And of course, if music is being made, live, by a bedside, in one’s room, music is also demonstrating the care of the person, or persons, making the music (humming a lullaby, playing a kantele) for the person ‘in the bed’, for the person alongside the bed, for the music. And so, in the here and now, a further social, ceremonial feature of music-for-health is occurring – the two, or more people in the room, caring for music together, perhaps one might suggest, as ‘celebrants’ understood in a secular sense, is a bond. And perhaps too, it is a reminder to both that music shared, and cared for, will endure. It will outlast the here and now; it will reverberate. So, as with shared problems, but in reverse, we might say that music shared is – not music halved but – music multiplied, music ‘greater than the sum of its parts’. And learning from music therapy’s approaches to the management of pain raises major and very important questions about how we might best organise – socially and aesthetically, as well as medically – situations of suffering.

Further Reading:

DeNora, T. 2014. Making Sense of Reality: Culture and Perception in Everyday Life. London: Sage.

Hartley, N. 2014. End of Life Care: A Guide for Therapists, Artists, and Arts Therapists. London and Philadelphia: Jessica Kingsley Publishers.