a conversation between Alec Finlay (A), Katie McLachlan (K), and Brighid Ó Dochartaigh (B), on Long Covid and creative recuperation.
A: I wanted to begin our discussion with a poem inspired by the I-Ching, followed by one of Brighid's.
31, Hsien, Requiting, Loch a' nochdadh nan speur
leave off the peaks
and you may
find your way
to the high
hidden reflections
in the loch of sky
Real life
Sometimes
it seems like you have a choice
but there is no choice.
Sometimes
it seems like you have no choice
but there is always a choice.
Will you take the red pill, or the blue one?
One, you go forward
Leave this flawed life
Rejoin the world.
One, you stay the same.
But is the staying, continuity?
Or is it going on?
Going back, to go forwards?
Which is your real life?
The image in the poem–and the I-Ching is primarily a book of poetic 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 imagine it’s probably very cold!
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. Sometimes I wonder how I would have worked in the landscape if I could access it freely.
Finding, creating, or rediscovering, a sense of belonging in a wild place, when that is traditionally defined by the things an active self can do–hiking, climbing, planting, building, surveying–is not simple. Losing access to wild places inevitably brings experiences of grief, confusion, alienation, hurt, pain, and loss. First, we cease to view the landscape as a place we go to, out of love and the habits of active leisure, because of the collapses and relapses that result.
I found one path back to belonging was using the meanings of place-names–words reflecting the sense of belonging of those who dwelled in a place. So, this is a discussion of how we, as disabled people, 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 you 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, post-exertional malaise (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?
B: As a background to my ramblings – before the onset of Long Covid, 3 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. Those solo journeys in the Highlands and islands were hugely important to me. I had planned many more, not knowing, of course, that illness would come & mean losing all that. I’m using the word ‘wild’, aware that none of the hills and mountains I spent time in are truly wild anymore, but they’re what most of us mean by wild!
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 felt 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. I imagined the loch – or perhaps the sky itself as a loch – seen as I look out from my illness seat by my window, wishing to be out there again – as showing me reflections (memories) of my mountains of the past. I also smiled because I have good memories of swimming in actual high lochs in the hills, some of which were indeed very cold – not all, though!
How do I feel about ‘not-walking’, not-running, not-swimming?
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.
I was not exactly an athlete – I was a very slow and non-competitive runner! – but I found great reward in recent years in physical activity and training, both directly in physical terms – becoming fitter and stronger – and, more so, in what my fitter body allowed me to do – be free in the hills. Right now I don’t feel this particular loss so keenly. Maybe physical / bodily experience and the viscerality of sensations is something we forget faster than memory and emotions?
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. I feel smaller now, ‘weaker’, not (only) in a physical sense, but the loss of agency.
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. It is still painful, can be an ache in my belly and chest. A longing that feels physical.
How do I manage this loss? 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.
The isolation of being ill is also in some ways comparable to being solo in the hills, although more intense, more extended, and – ironically – more cut off from the world. Where I used to be physically alone on a trip to the wilds for a day, or 2 or 3, before returning to the city and my familiar job, friends, and colleagues – now I’m physically alone most of the time, for weeks and months and years. Socially I’m more connected than I was in the hills because of virtual contact – through text messages, phone or video calls - but although this connection is vital and I hugely appreciate it - it’s different from the face to face contact I used to have hourly, daily, unthinkingly when I was well – easy, unfiltered, on equal terms, not felt as an exertion, not having to be planned and managed to avoid (over) exhaustion.
There’s also a similarity between not being able to explain the experience of being solo in the hills to people who don’t know what it’s like (and maybe especially a solo woman in the hills), and not being able to explain to healthy people what it’s like to be chronically ill.
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. I’ve had this window for 20 years, but I can confidently say I never really noticed most of these things before being ill and largely static! Maybe I’m trying to replace my own ability to be an active body moving through the world/wilds by vicariously living through the local birds – I observe their dramas and interactions and routines and lives. The birds I keep my eye on, and become invested in, embody the freedom to move through the world that I don’t have anymore? (Interestingly I recently read Rob Macfarlane writing about the author of The Peregrine, who had lifelong illness, saying something similar).
On place-names as ways of approaching and accessing actual wild places – the mountains and so on – yes – naming a place to bring it closer to mind and, in imagination, physically closer? I like your Gaelic name for the invented loch in your poem. Place-names also give me a strong sense of connections with people as well as landscape – thoughts of the peoples who lived and/or travelled there throughout the past, and what their relationships were with the land.
KMcL: How nice it has been to have Alec’s poem and this gentle, slow conversation turning in my head as I go about my days.
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.
As I prepare to dive into the waters of Loch a' Nochdadh nan Speur, The Loch the Sky Reflects I carry with me a picture that Alec’s poem brought to mind. In the black and white photograph, my biologist uncle crouches, with notebook and observation tools, next to a rainwater pool gathered in a hollow of rock atop a hill with the long-ago Malawian bush spread out below. He has spent many years studying the evolution of behaviour of the invertebrate biology and ecology of these pools, and there is a curiosity and patience to his posture that I want to emulate on my dark dive. Or maybe I hold this image so that I’m reminded you’re both there to pull me back up if I dive too deep.
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.
Having gotten really depressed in the previous two winters of Long Covid, in October last year I resolved to nudge my walking, slowly, so that I could be outside and move around, even slightly. I let go of everything else in my days and focussed on taking tiny slow steps. I think the sheer joy of feeling my legs slowly moving under me, their rhythm, and all the wonders there were to see in a slightly different location on my doorstep, enabled me to let go of any expectations or frustrations and just let it be what it was, achieved at the pace I needed.
The thing that instantly struck me was how, like Alec said somewhere, when a person’s walking circle shrinks, so do the thoughts they think, and just those tiny steps I was able to make, broadened my thoughts. I hadn’t realised quite how much I had shrunk inwards. So, it was glorious! Over months I built up to walking as far as 5 houses and then down to the 6th house. But whenever I tried to go further than that, the slope of the street punched me. I started to trespass in the strip of trees bordering Merchiston Castle. And that was thrilling. A little of the old me. It felt like a wilderness on my doorstep, a place I had never explored before when I was well. Where to my delight I regularly saw a pair of young deer at twilight. And to my relief have not yet been caught by a groundskeeper.
But inevitably all that tiny vastness shrank and, for months, I’ve struggled to leave the house again.
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 ice 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.
With enormous effort on many people’s parts, I made it out to Mull last year, to visit my uncle and aunt. My uncle showed me all sorts of astonishing things under his microscopes. That tiny world was the furthest I’ve travelled in a long time. Wild! Through this same microscope he showed me slides from his younger days in southern Africa, often with my father, both men very interested in the natural world. There was more wildness that I could be in touch with, in these well-loved family stories. But I couldn’t follow my 85-year old uncle with a heart condition and lung cancer on his little daily walk. ‘Not-walking’.
Some days I can still make it as far as my favourite salt box at the corner of the street where I sat many days in winter. At 10 in the morning, the low winter sun burst between two low buildings on the barracks parade ground, and, through the bare winter trees, I could see all the way to the Pentland Hills. I could sit there imagining I was on those familiar hills, walking the routes in my mind. I remember telling Brighid how lovely winter was because of the greater distances you could see. So it was lovely to hear Alec talk about sight being a way of ‘not-walking’.
Place-names have a little story of their own, which I wasn’t sure whether to share because it’s not mine. My partner, John, has had ME for many more years than I’ve known him, and he too now has Long Covid. He has always been fascinated by place, so when we moved here, one of the first things he did was discover that our road may have been named after Paddy, whose house was at the bottom of the street when the estate was built. With this drop of knowledge, Paddy has accompanied me across distances of time on the days when I can do my slow uncertain ‘not-walking’ up and down the street.
Thank you both for this belonging and holding out your hands to me after my dive.
41: Sun, Depleted, after Katie
even the highs must come down
crying halfway
up the stairs
even the lows must come up
crying halfway
along the corridor
unable to move
my arms or legs
witnessing, curious,
unable to speak even
for weakness
enjoying the utter
heaviness
which even felt right
blissful even
AF: These were moving and beautiful accounts to read, especially as this past 3 weeks has been hard for me, physically and perceptually, after the shadow cast by a third round of the virus.
It’s uncanny how one seems to need the experience of ME or LC made concrete by the mirror of other’s 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! One must intermittently recover a description of the real, that is, of what is happening, in terms of the prodigious outflow of signals from a mechanical bodily dysfunction.
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?
You’ll both be aware that the two mirrors I proposed, peer and medical expert, are not the same thing, and the latter may be a phantasm? I have sometimes been able to describe the extreme signal state from a place beyond relapse. Could anyone send a detailed report from within the wildly spinning capsule, as the sensory overload of extreme fatigue cocoons the senses? I doubt it. Aside from experiences of ‘not-walking’, I found myself focussing on PEM, which I call Lag, because it is such an extreme symptom. From a place of un-detached curiosity, I fantasised an experiment.
'Join my endurance walk experiment. We set off, sceptical medics in white coats either side of me, or ME, politely encouraging. A tartan blanket’s draped over my shoulder. We continue together – I continue between them – across hills, through pinewoods, fording burns, until the moment comes. Is it on day one? Do I walk on into the night? Did I go impossibly far? Wherever we are, I can go no farther.
The medics nod. There’s no denying my effort and, in their minds, the experiment proves I can walk some distance, so I must be well.
Wait, I say: stay a while, this is my experiment, we need to parley. After so many years I’m determined they see The Lag take hold.
Day two, they become impatient. Of course you’re stiff, it was a long walk. Day three, bastard lactic, joints agony, cleugh across my diaphragm, mother-waves of fatigue.
Stop! I insist, you’re not leaving yet, laying across the doorway like a draught excluder.
Peak pain on day four, spindleshanks stuck with pins, shadowed eyes, feet cramping into gnarly roots. Pain forms its zone of exclusion.
I can’t describe the end of my fantasy walk. The medics crept away while I slept fitfully.
Long after a walk is over my cells collapse in a mitochondrial fizzle. Such alien pain insults the signature of medical care, which imagines fatigue, and its temporal slippage into Post-Exertional Malaise – what I call Lag and Marion Michell terms The Aftermath – as ‘an extreme response, born of health anxiety. If their conception of Lag were benign, we could have held its strangeness together and formed a description in scientific terms. Instead, tens of thousands with ME, millions with Long COVID, experience these energy crashes and are met with similar disbelief.'
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The passage is concerned with what medical reality can be described in a socially coherent way. I’m interested whether we can go back to a time before you could write these eloquent and detailed eye-witness reports, to when you were first ill. How do we construct these accounts, recognising, or mapping, the reality of our symptoms. Bright, can you describe the process of creating convincing narratives of the ‘IT’ of your illness?
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, demonstrably not trustworthy, corrupted even. The cliché of ‘mystery illness’ isn’t an accurate description for a series of false narratives, lacunae, erasures, and prejudice. There are a few experts, some of them medically trained, but they tend to be people who also have ME or LC–they speak from inside the 'mystery'. You both speak with such articulacy and I wonder how that expertise was, slowly, amassed? Did you understand what had happened to your body by self-observation, reading, listening to, and talking with peers – Katie, perhaps having a partner with ME was helpful, Brighid perhaps your training was useful?
Before you could speak in such detail, how did this narrative of the catastrophic fall into LC emerge, and do you have a description, a hunch, that speculates, ‘I think the repetitive dysfunction arises here, in this aspect of the body system’.
B: An interesting question and not one I’d thought to ask myself before. How did I come to understand what was happening to me through this illness? How did I come to create the narrative I tell myself about being ill, about me being an ill person?
First, I came slowly to start to understand what the illness is 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 did help – 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). But I couldn’t have put this self-observation in context without understanding what the illness does more widely, in other people. For that, possibly my scientific training helped – I’m a geologist – with the skills to seek out, assess and select relevant medical evidence, such as it exists. And that possibly also helped me sift through all the not-relevant and probably not-useful information shared by other ill people desperate for that magic cure.
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 remember the relief of messaging friends with similar symptoms in spring 2020, and later that year going onto the Slack and Facebook long Covid support groups and seeing my own symptoms. I still disbelieve that I’m ill sometimes – how can I still be sick with something that sometimes seems nebulous, unpindownable, after 3 years? And I still ‘reassure’ myself that my experience is valid by reference to others who are still sick with long Covid, or have had ME for much longer. And the same is true for most if not all my experiences of and because of the illness – the symptoms, the emotional effects, the social and professional implications.
I don’t have a fully worked out personal narrative yet about the catastrophic fall into illness. Fundamental things are still changing. Eg, 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 2 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.
A: 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.
I was in an unusual situation with ME, as my mother had the illness from when I was around 12. That ‘fall’ had entirely changed the family dynamic. I watched her struggle, try to continue the life she had before, then relapse, and endure great storms of frustration and despair. Katie, I don’t know if your partner having ME was helpful to you in terms of recognising what Long Covid was?
She also began to offer other people information and care and was one of the ‘cell’ of activists who set up the ME Action Campaign. 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.
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 knew the same struggle had entered my body and there seemed no way out. When you speak of the sense of accepting Long Covid as a possible life condition, well, I had my mother, always a decade ahead of me, still ill, and ME took on a quality of inheritance and even fate. (I am more hopeful of a cure now).
Knowing the disease from the outside, through the painful process of witnessing her relapses, didn’t help me to radically rest. I still went through endless cycles of relapse. It took a decade, perhaps more, to really understand how PEM worked, and it was two decades before I got to grips with diet. This is where the lack of an accurate medical narrative at the level of care is so damaging.
In a strange way, one can be aware of the disease as a concept, but the actual experience of symptoms, flares, crashes, and pain, remains strange, as if an alien mechanism had taken up residence. This is where the experiences of others are so affirming. Witnessing the symptoms being described by others allows one to grasp what is happening within one’s own body. One literally constructs a mental reality of the pain and fatigue through the confirmation that it is also happening to others. Symptoms can be overwhelming, but that doesn’t mean one understands the. Having ME or Long Covid is like being trapped inside a murder mystery, as Jimmy Perez exasperatedly mulls the clues, piecing together the pain as evidence. He needs his team to help, and he needs witnesses. A case must be built.
In the first decade, for me, this involved understanding the lag of PEM, and identifying what I’d done a couple of days before that had caused it. Then, over years, learning where to draw the line to lessen relapses. This seemed to require a second conceptual self, trained to observe, and make animated interventions – only walk this far, only draw at your desk this long, don’t eat that food. That self is created through a dual process of self-observation and the confirmation of observing others. I created the descriptions book, because I realised patient-led descriptions of ME play such an important role in terms of witness, culminating into an undeniable social and medical reality. With Long Covid we’re helped by the sad fact that so many medical practitioners have the disease, so it’s became much harder to erase our lived reality.
With Long Covid, I recognised it immediately as the same mechanism as ME, but I still had to learn my new limits. For me these proved to be astonishingly detailed. I can walk 200m, but if I walk 230m or more then I get severe PEM. With Long Covid the patient-led online groups accelerated my learning a hundred-fold, compared to ME – there were no online groups when I got ME and I chose not to engage with them when they did exist. I’ve never known a group as supportive, informed, and creative as the UK Body Politic community.
Going through the ‘discover and define’ period of ME, since 2020, has been a fascinating sociological study in co-created meaning, witness, and activism. Of course, medical care has proven to be almost as bad as for ME, but the sheer scale of the Long Covid community, and its skills in patient-led description, lead me to believe things can be different. Of course, we’re also seeing the resurgence of the Wessely school and graded exercise, allied to plans for a renewed targeting of disability benefits, so the struggle continues.
K: 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. I met John 10 years into his ME and we’ve been together now for 15. He always said I met him at a strange time in his life which I take to mean the point at which he was expanding into the outside world again with ME. He never talked about it, spending his energy instead on holding very tight boundaries of all kinds and dismissing any explanation or inquiry with offhand 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. He certainly never used words like pacing, or PEM, conceding only to the word relapse when he needed me to know he was collapsing/collapsed. 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 3 months and then 6 months, from which I would never recover. I used these notes to try and get help from my doctors. As John watched on, 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. TheME 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 which made me feel safer because I could see a whole curated arc of explanation. The first book I read in Nov-20 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 GET and the exertion of 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 and 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.
In slowly thinking over what to write, I realised that I hardly needed many words at all and could summarise my waking to understanding as:
grasping: trying to hold onto life as I knew it – the first 1-3 months
falling: major crashes which severely and, so far, irrevocably decreased function – 3-6 months
seeking: mostly outside for knowledge, help and solutions – 6-14 months
breaking: fighting for employee rights, benefits rights, medical help, and having every ounce of energy, confidence, and trust squashed out of me, adding severe anxiety to the mix, and further irrevocably decreased function – 9-24 months
turning: letting go of seeking, turning inwards, towards what I want to create, instead of away from illness, or getting lost in it, connecting through creativity, learning to live the good lessons with more ease – ongoing
I drew this on a graph thinking it would help to put it in my boss’s language, but even graphs can’t communicate the peaks and depths of the learning needed.
AF: It’s incredible to think that there are as many as an estimated 400 million people in the world with Long Covid (Danny Altmann's figures), every one of them going through the experiences we describe, alone. Katie, I think your summary would map onto the vast majority – tossed around by the confusing maelstrom of symptoms, losing friends and access to the places and activities they love, being desolated by lack of medical understanding, receiving medical care that’s useless, or worse, 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. People with ME lived with this erasure for decades, but to see it scaled up, exponentially, speaks in a profound way to an empathic chasm in humanity. It is recognisably an international phenomenon, to varying degrees, so it must reflect something about the human condition. Each individual struggles with their lonely journey, yet we also recognise ourselves part of a vast community, one which is, paradoxically, defined primarily by isolation and exile.
Reading these three narratives we each of recognises the other has been through an almost identical experience, and yet there is no cohesive picture of this is the media, NHS, or government messaging. Each of us is left in an existential state of puzzlement what the explanation is 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.
At a human level this is evident in the examples of chagrin, where medical experts succumb to Long Covid and admit they wished they’d believed in ME and not been told to psychologise it.
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, focussing 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. We reluctantly accept most friends have forgotten us. It remains overwhelmingly alien, this phenomenon that our experiences of bodily exhaustion cannot be ‘seen’, even though they are so many people on the same raft. This illness is like a film everyone has vaguely heard of, but no-one has seen. Each of us accepts, with deep appreciation, small acts of care which reach us – help to post a letter, some shopping delivered, little things others wouldn’t think worthy of notice. Each of us is half-aware of being alone, but within a population of 400 million exiles. We are an audience in the shadows, watching on, appalled, as the ongoing pandemic broadcasts ‘The End’, without being anywhere near over. While people keep repeating that ‘it’s over’, they are unwittingly playing a world lottery, and we know the ‘prize’ – odds of 1 in 10 – is to follow us down this thorny path.
And what of hope, where can we find that? It seems to reappear in the last and ongoing phase Katie described, when people turn inward and renew the resources of the self, gentling exile into a home.
A few days ago, I received the two beautiful poetry booklets from Brighid. And Katie, we’re working on an art project exploring Day of Access using your potato prints. Creativity is one of the few fields in which we can still be active and create things that are in themselves complete – seeable, holdable, images of meaningful reality, descriptions we can trust.
I’m struck how the overlaying of our experiences reveals them to be identical, and no different to what I went through with ME 30 years ago. The inevitable realisation is of a mass exiling event. But also, to be hopeful, we also share a sense of solace in modest creative acts – possible for almost anyone. Unable to walk far – ‘not-walking’ – into the world, we’ve discovered that creativity offers a kinder, more possible, ratio of energy-use. It’s one of the least discussed characteristics of art, that so much meaning can be created with so little energy expenditure. It says everything about our society that it sees the ratio art makes possible in terms of monetary value: a few squiggles of paint worth X million dollars. The true magic is how creativity allows the energy constrained to regain a gentle and authentic expression of emotion, play, and love.
Katie, I think of the effort required to create your graph, beseeching your employer to grasp how radically your energy window had altered. Compare that to the soft delights of the creations you make now, their vibrant colours and playfulness. Illness is a form of childhood.
Brighid, your poetic presentification of ‘rest’ and all its meanings is an eloquent response to the loss of shared representation people with Long Covid endure.
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 5 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. Our descriptions of the physical burden of Long Covid testify to a vast archive of pain, exile, exhaustion, ‘not-walking’, brief joys, scratchy diets, and sensory overwhelm. Within this harsh truth there is stoic resilience and a rich vein of wisdom, which I define as creative adaptation.
Listening to you both, I have a distinct image of the cumulative worldwide wisdom of chronic illness projecting an architectural form. Imagine a vast archive, within its high walls there are troves on endurance, an entire wing celebrating the three o’clock nap, a basement of cold baths, and a corridor filing expeditions from bed to loo, or adventuring into the garden. The building has doors through which the powers that be could enter. Instead, they bricked them up.
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.
We write to insist the bricks be torn away and the doors thrown open.
Coda: a practical note on how each of us currently accesses the world
Alec 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 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’s motto: 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.
bios
Brighid: I’m a 50 year old woman living in Edinburgh; I used to work as a geologist; and until contracting long covid in 2020 I was healthy and very active: working and travelling around the world, and a long distance runner and hillwalker. Since then I’ve been too ill to work full time or sustainably, or to do most of the activities I love. I continue to try and find my way through the physical, professional, financial, social and emotional challenges of living with a disabling chronic illness in our society.
Katie: I’m a 42 year old woman who grew up in South Africa but have now lived in Edinburgh nearly as long. Exploring by bicycle was my favourite thing! But anything active and outdoors was my happy. Previous workaholic. Now unable to work or be active at all. I’m getting curious about other ways to be adventurous and connect with people; other ways to live in my body and emotions; and in society in general with a disabling chronic illness. Finding my way to creativity has been a lifeline.
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