In part two of a discussion on chronic illness and creative recuperation (read part one here), artists Alec Finlay, Katie McLachlan and Brighid Ó Dochartaigh reflect on art as witness to erased realities.
Alec: It’s interesting how people with ME and Long Covid tend to experience a false or inadequate medical narrative at the level of NHS care, and yet they are frequently proactive, and curious, in terms of reading medical research. Research does at least register the dysfunction in our immune systems – our reality – even if it can’t cure it. At the same time, the patient-led construction of reality is also crucial. Where it includes innumerable accounts of people doing too much and relapsing it helps me to curate my own limits. As humans we constantly need to know that the things we experience are real and that they have a social reality. I won’t go into it here, but I lived for some years with a violent partner, and the way in which that was concealed, and one was even told it couldn’t have happened, exacerbated the experience – and was, in a way, worse than the violence. There’s no doubt that the erasure of lived reality has been the most traumatic aspect of ME for many sufferers.
In recent years I’ve reflected on the role in art as a giver-of-witness – in particular, in terms of erased realities, whether domestic violence or illness – because art has the capacity to represent complex realities. I’ve also come to see human vulnerability as a catalyst to change: where a truthful description of an experience can be created, as in this discussion, I think a dynamic process of creative adaptation tends to follow – self-care, disabled access, medical research, all follow from a description of reality.
I watched my mother’s struggle with ME. When I became ill with ME, eight years later, I immediately recognised what had happened, in the way one might say: fuck, now I have entered the same myth.
‘I used my energy to try to understand the disease’
Katie: There are so many threads of “yes!” from both your accounts that I wanted to pick up, but I’ll start with just one and see where it takes my story.
Having a partner with ME brought all the fear and none of the knowledge. Intimately aware of the lines and limits it drew through John’s life, ours as a couple, and mine as a healthy person in that partnership. He never talked about it before I got ill, spending his energy instead on holding very tight boundaries of all kinds and dismissing any explanation or inquiry with humour. I understood it only so far as what I saw in his utter collapses, the ordinary things he held strict boundaries with and the dozens of habits/behaviours that were so beyond understanding as a healthy person.
As I moved through the first year after Covid realising I was getting worse not better, I felt intensely Alec’s fuck, now I am entering the same myth, but didn’t have the knowledge to stop it, or flow with its demands of rest and pacing. John didn’t know how to speak these into a language I could understand, if that is even possible – or if he even understood it himself in words. What little hints he did give towards pacing were not substantial enough for my hunger to understand the ‘why’ and, as we know, it is so difficult to actually implement ‘slow down‘, ‘don’t try so hard‘, ‘take all emotion out your voice and expressions‘, ‘try to care less‘. He demonstrated radical resting in those first few months as he eased out of Covid pneumonia into reading poetry outside, just sitting still and quiet. But I couldn’t see the wisdom of deep rest or feel it as something I was allowed. Besides, I was the ‘healthy’ one holding it all together.
In the first months I witnessed and wrote notes and was forced to try and describe the dysfunction regularly to my boss as I worked straight through Covid and into the first two major crashes at three months and then three months, from which I would never recover. I used these notes to try and get help from my doctors. As John watched, I learned, through relapses, how little the huge effort I expended explaining correlated to any real help or understanding. He didn’t seek help at all, he was too jaded by previous experiences, reverting instead to his old coping strategies, opaque to me. After the crashes, when I could no longer work or do very much at all, I used my energy to try and understand the disease in much the same way as Brighid.
Finding my way to the online Facebook groups in July 2020, I felt at first validated, then overwhelmed by the desperation, and all of the cures pulling in a dozen directions. The ME sufferers who braved this fray shone as bright beacons of hard-won wisdom. I found research papers truly fascinating and a couple of amazing online resources relating to ME or mindfulness helped the most in terms of daily living but the effort of finding these things amongst the mountains of distress was exhausting. So I switched to reading books. The first book I read, in Nov 2020, was from the 80s and it frustrated me that all this knowledge had been out there for decades. ‘This is new, we don’t know,’ was not an answer I had patience for after that.
By the time I finally saw the ME service, two years in, their offering felt so thin. The physios were still pushing Graded Exercise Therapy (GET) and the exertion of Cognitive Behavioural Therapy (CBT) sessions made me worse without giving me anything I wasn’t already trying to live. I gave so much more than I got in those all those months and left worse off than when I started.
In the last couple of years, John has, when I’ve been really broken down, brought out some pearls that I could tell came from dark places burnished with much turning over. I can’t remember them to relate here, just the sense of real meeting. Maybe this sharing is possible now we’ve both gathered experiences our own hard and different ways. Since I’ve started trying my hand at poetry, this is a place we meet often now, too, which has been hugely enriching, full of life. But there are difficulties too, as our coping strategies can collide, and often when one of us collapses, the other domino swiftly follows.
‘It turns out that creativity is the best model of adaptation, and to adapt is our new life task.’
Alec: It’s incredible to think that there are an estimated 400 million people in the world with Long Covid, every one of them going through the experiences we describe, alone, often receiving medical care that’s useless or, at worst, damaging. To take one example, how is it possible that, at the very time graded exercise regimes are discontinued for ME, people with identical symptoms are being encouraged to exercise and relapse?
In this isolation, each person has no choice but to piece together a medical portrait of what’s happening within their body – one sees people losing their trust of medical authority at different speeds, but almost no-one describes a traditional model of benevolent care. Then there begins the struggle to receive benefits and employer support. These struggles occur within a society that has chosen not to develop an adequate representation of the sufferers’ new bodily reality.
Reading these three narratives we each recognise the others have been through an almost identical experience, and yet there is no cohesive picture of this is the media, NHS, or Government messaging. What is the explanation for such a profound erasure of lived experience? It surely goes beyond the limitations of medicine? My own yet to unfurl bud of theory is that it must reflect a deep-seated almost psychopathic antipathy to vulnerability and states of being which appear invisible.
In both of your accounts I recognise a universal narrative arc. We begin by trying to maintain old life habits, relapsing, worsening, putting on a brave face, hoping, pushing ourselves. Then we seek medical help and are plunged into a confusing non-conversation in which there is no common reality to converge around. We find ourselves amateur experts confronting people who have been trained to think of our symptoms as ciphers. Without a common medical reality there can be no adequate care.
Inevitably trust is frayed and we become more alone. Then, as the ill-person resignedly withdraws into a chronic state, there comes the next struggle with a mechanical, alienated, inhumane benefits system. So many people testify this episode as the most painful of all, inflicting the worst dents and ruptures in our trust in shared reality.
Finally, dismayed, people retreat from these exhausting arenas of conflict. Instead they make do with a regime of care which they figure out themselves, learning from peers, focusing on radical rest. Cure isn’t possible at this time, perhaps it will be someday? (Only if our symptoms can be seen). In that smaller, lonelier, but also more possible world, each of us meditates on the catastrophe and slowly adapts to the new life, putting off the habit of pushing through, settling in for the long haul.
We become gentle sitters-in-the sun, recalibrate joy, and find ways to be creative. It turns out that creativity is the best model of adaptation, and to adapt is our new life task.
Creativity has, to an extent, returned each of us to a relationship with doing, limbs in motion, minds creating reality, which is benevolent. We’ve become gentle makers and radical resters. This discussion has returned me to the reason I’ve spent the last five years gathering creative activities that almost anyone can attempt, as well as supporting disabled access to wild nature. Arts funders have rejected numerous applications dedicated to practices of creative recuperation, because the experiences of 400 million people do not register as a cultural phenomenon.
There is so much creative knowledge and vulnerable wisdom in disability, so much perspicuity in the thrawn task of energy rationing, such willingness to celebrate small joys. The creation of a low-growth AI society could do worse than starting over from the knowledge of those who radically rest, have expertise in creative adaptation, and ken how joy still dwells in limitation. It sings out in your words, and yet this is a lore entirely untapped by society.
About the authors and how each currently accesses the world
Alec Finlay is an artist and poet with Long Covid. He has an e-scooter which expands his 200m foot-walk to around a mile, reaching a beach and a corner of the Botanics. He has a wheelchair that he has never used. Beyond that, for work, he uses Uber and taxi, or the occasional welcome collaborator who can drive.
Katie grew up in South Africa but has now lived in Edinburgh nearly as long. Previously she was a workaholic, and is now unable to work or be active at all. Finding a way to creativity has been a lifeline. She keeps a car as a mobility aid. It allows her to drive to the park at the end of the street. She tried an electric bicycle but harshly discovered it was impossible. A friend offered to push her around the botanic gardens on one of their chairs; she’s been resistant to the idea but might try, just to see what it is about the idea that makes her resist it so much.
Brighid lives in Edinburgh. She used to work as a geologist and until contracting Long Covid in 2020 was very active. Since then she’s been too ill to work full time or sustainably. Brighid’s motto is go less far, sit more. Taken to the Lake District she went no further than the garden gate, but there was a river there to slip into for a quick swim. When she’s able she drives short distances to places she values – Craiglockhart Pond, Wardie Beach, Hermitage Woods – rather than attempt to travel further by mobility aid and increase the risk of over-exertion.
