Artist and poet Alec Finlay discusses chronic illness’s crisis of narrativity and the process of creative recuperation with Katie McLachlan and Brighid Ó Dochartaigh, who both have Long Covid. Part one of a two-part series.
Alec: I wanted to begin our discussion with a poem of mine, inspired by the I-Ching:
The image – and the I-Ching is primarily a book of poetic natural images suggesting the transformations we undergo in life – is of a mountain that is topped by a lake, or loch. Rather than a peak, the masculine thrust or jut, we find the rock holding gentle water.
I’ve found ways to write about mountains, as someone who has never been able to climb one and, in that sense, limit paradoxically liberated my creativity. Finding, or creating, or rediscovering, a sense of belonging in a wild place which is traditionally defined by the things an active self can do – hiking, climbing, planting, building, surveying – is not simple. Losing access to those places inevitably brings experiences of grief, confusion, alienation, hurt, pain, and loss. I found one path back to belonging was using the meanings of place-names – words reflecting the sense of belonging of those who once dwelled in a place. So, this is a discussion of how, as disabled people, we heal belonging.
We can imagine that lochan – in a later version of the poem I gave it a Gaelic name, Loch a’ Nochdadh nan Speur, meaning The Loch the Sky Reflects in – as a dark peaty Highland loch, and look into its reflective darkness, admitting experiences of loss, and whatever other emotions we have each felt in terms of wild places. Since the pandemic I term those experiences: ‘not-walking’ – that is, not being able to do what most people would define as ‘a walk’, while still having legs that can, in a hesitant way, walk.
The emphasis is on the not-, which includes relapses, PEM, and the harshness of learning the fluctuating limits of Long Covid. I know these experiences are painful, but would you be able to describe them?
‘I sometimes see my illness ‘journey’ as analogous to an extra-long solo wilderness journey’
Brighid: Before the onset of Long Covid, three years ago, I was (very privileged to be) healthy, and extensively in the wilds – hill/mountain walking, running and swimming. In the few years before I got ill, my wild outings were increasingly solo, often for more than a day, sometimes remote camping.
Your poem, Alec – the loch as a mirror to reflect our loss and other dark feelings – I see this image clearly too. But when I read it, and your elaboration, I also feel something more positive – maybe because I do have past experiences of mountains and have recently been finding these something of a comfort as well as a loss that I grieve.
In the early days and months of illness, the physical restrictions – not being able to challenge my body, train it, make it stronger by doing physical activity (I was training for my latest ‘ultramarathon’ runs when I got ill) – were a huge loss. Right now I don’t feel this so keenly – maybe because I am forgetting those physical experiences.
What is still a huge loss, emptiness, sadness, source of grief – is the loss of freedom, space, independence; of solitude in wildness, of that freedom of being on my own in a wide, largely empty (of humans) landscape; of making my own way, of interacting with the world as a healthy moving being, of being able to choose where to go and what to do and to see it through without damage to myself.
More recently I’ve started to find a measure of peace and comfort in my memories of being in the wilds. I get some comfort that I was once able to do those things which gave me such immense joy, reward, happiness. But, for a while, it was impossibly hard to think about my old exploits and confront the idea that I’d never be able to do them again.
I sometimes see my illness ‘journey’ as analogous to an extra-long solo wilderness journey, and the skills I learned from preparing from and making those actual journeys in my past, are still useful today to help me navigate & cope with illness – self-reliance, self-belief, how to keep moving (metaphorically too) when you’re scared and uncertain of the route and your own abilities.
Maybe I’ve tried to replace some of the experience of being in wild landscape with looking closer at what’s around me now; by noticing the local ‘wildness’ – like so many people did when we were all in lockdown (westill are of course). I spend hours sitting by my window watching the birds in the backgreens and on the roofs and flying overhead; and the clouds moving in the sky; and the trees changing through the year, and how the sunset moves around the horizon.
‘Through creativity I can start to bring back some wildness to my inner landscape’
Katie: Unlike Brighid, I hardly think back to wild times before. I find it hard to connect. I’ve had to crumble my peaks to fill the depths. It feels too distant, looking at that person who used to love popping her bike on a train to cycle somewhere found on a map with a black bag tucked away in case all the hostels were full or her wandering took her where there were none and she had to sleep outside. It’s only recently, talking with you both and seeing your work, that I feel I might try and seek wildness in words and my own memories again.
My story of discovering ‘exercise intolerance’, or ‘not-walking’, is so familiar that I imagine it doesn’t bear repeating. Those early months when healthcare professionals kept saying “walk a little more each day“, and trusting them more than my own body, because my body and I had always loved moving and I couldn’t get my head around the new messages it was sending. Being scared, because I thought I wouldn’t make it home again, even though it was just the end of the street. Thinking it would be better the next day, but it was much MUCH worse. Shortening my walk to just the neighbours and, even then, looking back and seeing helpless impossible miles to get home. Horizons shrunk. I was on a leash that got shorter the more I strained at it.
There were dozens of other such occasions in those early days when the extent of the PEM/PESE slammed me without negotiation. I remember the first time lying in bed, totally unable to move my arms or legs, or speak, for weakness, just witnessing it with curiosity and enjoying the utter heaviness of it. It felt right. Blissful even. This has never happened again, or maybe my ability to view it with such kind curiosity is no longer there because I’ve been through it so many times, weak, crying halfway up the stairs to bed, or halfway along the corridor to the bathroom, or trying to eat. And after every major crash, not regaining previous levels of function.
The shock of this ‘not walking’ has never left me. My external landscape became flat – while I can walk for a few minutes, even gentle slopes are not possible – and my internal landscape got flat too. The highs had to come down and the lows had to come up. It’s been the only way to get by for so long. But I miss the variety! And I’ve felt such delight in the last few months in discovering the possibilities of poetry, art, creativity, and connection with others. It’s through these things that I can start to bring back some wildness to my inner landscape. Some of the adventurous spirit.
I’m very grateful to have a garden wildness that’s accessible, although even this landscape feels miles away many days. Last year, I read The Borrowers, on a mattress under the trees. If you’re miniature then the smallest patch of grass becomes a wilderness, a tiny slope becomes a hill, the stairs a huge mountain and the corridor is leagues long. Borrower Kate. It’s nice to be reminded of that mental shift that helped so much at the time. I’ve spent as many days as possible lying on that bed in the shade just watching and listening, reading, and drawing. Getting to know movements of the sun, wind directions, seasons of plants and tiny insects. Spiders have been very good, if cruel, company when indoors. All last year there was one at my window who used to dash nimbly for any unfortunate prey trembling in her web. And I have a very vibrant jar of pond water on the windowsill next to my bed which is endlessly changing with all its tiny creatures.
‘The cliché, ‘mystery illness’, isn’t an accurate description for a series of false narratives, lacunae, erasures, and prejudice’
Alec: These were moving and beautiful accounts to read. It’s uncanny how one seems to need the experience of ME or LC made concrete by the mirror of others’ descriptions. Of course, as a poet and artist who deals with these experiences in my practice, listening, writing down, and returning the imagery and language of relapses and limits to others – as I did with the two poems I’ve made with your words, Katie – this should be obvious, but I’m still struck by the ways in which reading your articulate accounts helped me make sense of what was happening in my body recently. And this is after 30 years of ME!
I find it especially remarkable how curious and responsive your accounts are, sending reports back from the scene of an ongoing personal disaster. Patient-led medicine is radical in its implications.
When one is in – ‘in’ isn’t an accurate term: engulfed by, at the nub of – a relapse, the ‘IT’ of illness – a phrase someone with cancer once used to describe their relationship to the mechanism of illness that had taken up residence in their body – eclipses the standard issue self. The fully formed version of the self is used to narrating what’s happening in everyday life but, when the signals of catastrophic fatigue emit in so many mitochondrial pulses, rushing from within and pouring through the body – the rhythm of breath entering a state of arrest, a journey to another room fraught or impossible – it appears to me that, sometimes, only an external account, given by a sympathetic medical expert or a peer, allows one to make sense of the experience?
I’m interested whether we can go back to a time before you could write such eloquent and detailed eye-witness reports. They ask a question: how you constructed these accounts, recognising, or mapping, the reality of your symptoms. Can you describe the process of creating convincing narratives of the ‘IT’?
Of course, I ask this as the experiences of people with ME and LC tend to be characterised by a crisis of narratability. Medical expertise has been, in a broad sense, not trustworthy. The cliché, ‘mystery illness’, isn’t an accurate description for a series of false narratives, lacunae, erasures, and prejudice. There are experts, some of them medically trained, but they tend to be people who also have ME or LC. You both speak as experts and I wonder how that expertise was, slowly, amassed?
‘What will my story be? I think I’m going to be working it out for a long time’
Brighid: First, I came slowly to start to understand what the illness was doing to me through a dual process of self-observation, and of learning and comparison with medical ‘evidence’, e.g. from journal papers (those I could understand!) and from personal evidence or stories from other ill people. For the self-observation, I think probably my experience of running training helped – on a practical level I was used to recording my training activity and observing or measuring my body’s responses; and I use similar methods in managing the illness. (On the other hand, of course I had to learn the hard way that everything I knew about training my body had to be unlearned – that now, if I push myself, I’ll get sicker, not stronger).
Other people’s experience and stories were critical to starting to understand what was happening to me. I most definitely developed the narrative I tell myself about this illness through the experiences of other ill people, and by reflecting my experience back from them. The most important thing might be just helping me believe that I’m ill – I needed the validation of recognising my ill self in others, because there was no definition or recognition coming from the medical system.
I don’t have a fully worked out personal narrative yet about the catastrophic fall into illness. Fundamental things are still changing. E.g, for 18 months, until recently, my narrative was ‘I was too sick to work for over a year but now I’m a chronically ill person who is working part time’ – but for the last two months my story is once again what it was in 2020/21 – ‘I’m too ill to work’ – except that this time, it’s more ‘I’m too ill to do my job and I may never be well enough to do it again’ . Maybe in another year it will be ‘I was a geologist for 25 years and now I’m too ill to do that, so I do…. (what do I do?)’. What will I do? What will my story be? I think I’m going to be working it out for a long time.
Part two of this discussion will be published on 20 December 2024.
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, 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.
