For Kate, Caroline, Debs, Toots and Sammy – may all happiness be yours
There are so many parallels between the microcosm of chronic illness and the macrocosm of the converging crises of our time. I’m not such an egotist to imagine that they’re of anything like equal consequence (although of course when you’re in a body that feels like it’s falling apart around you, it does feel pretty central) but the one does seem to be a small, dim echo of the other. When I got sick there were a whole bunch of warning signs. I had a strong family history of the same chronic illness I ended up having. On top of this, the people who love me were telling me for months or years that the way that I was living was dangerously unsustainable. For whatever reason, I was unable to hear them. I was a compulsive over-worker, deeply committed to the co-operative I was co-running and totally fixated on the work. Towards the end, my body and brain were cracking under the strain, but I still ploughed on.It’s only too easy to draw the parallels.
The interesting question is why. In setting up the conditions for my particular plummet into ill-health, the reasons I behaved so compulsively are probably wrapped up (rather like everyone else’s compulsive behaviour) in my childhood experiences, as well as in my first (abusive) relationship. The provenance is probably also rooted in a kind of unacknowledged internalised capitalism, an obsession with productivity as the only real measure of value – the killer was that my productivity obsession was focused on creating social and ecological good. I thought I’d escaped the monster, only to find out too late I’d already been swallowed whole. Anyway, for a complex bundle of reasons I was trying to exert my right to exist in the world. Perhaps we all do this in some way. My single-pointedness, my compulsiveness, turned inwards and, combined with unfortunate genetics and sheer bad luck, resulted in my getting sick. Some other people’s single-pointedness and compulsiveness have turned outwards to create or augment the structures that are ravaging our world. We are all at least to some degree a product of our culture, and our culture is sick.
I think in some ways our great catalogue of human horrors and injustices are just manifestations of this one big brokenness. My sickness and the great sickness of our culture are not two separate, unrelated things.The recent outpourings of rage and increasing awareness around big single social justice issues, such as the ‘Me Too’ movement, BLM and the ongoing refugee crisis, are all manifestations of the endemic violence in our culture – of course these specific issues are desperately important and need addressing, but in a way each one represents only the tip of the corporate-capitalist iceberg: this paradigm that through deifying competition and individual gratification encourages domination, control and exploitation in many forms – not just of women by men or black people by white people, but of the global south by industrialised nations, of animals by humans and of the rest of the biosphere through human-created pollution, habitat destruction and climate collapse.
Similarly, in a very real way the chaos, alcoholism and sporadic outbreaks of domestic violence I and my siblings lived with as children, my horribly predictable teenage stumble into a long and abusive relationship with a much older man, my own feelings of lacking value or agency as a young woman – together with infinitely repeated similar experiences of other people – are one small symptom of the same great sickness that is now threatening all life. We are not somehow separate from these problems, either from their provenance or their effects. It’s like that adage about traffic jams: You’re not stuck in traffic, you are traffic. It’s easy to cast ourselves as either victims or perpetrators, as if it’s a binary split.
What I’m trying to say is that it’s more complex than that. Those of us living in the industrialised West are ourselves an expression of the culture that is destroying everything – not just our getting into cars and driving to supermarkets to buy some plastic-wrapped imported whatever: our thinking, our beings, are to at least some extent an expression of that sick culture. I know this all sounds pretty desperate, but I don’t believe that humans are innately irredeemable wastes of space. I still feel that it’s possible for us to find different ways of being, of relating, of collaborating, and arguably it’s through first seeing and then daring to name the problem(s) and bring them into the light that we can start that shift, if indeed we do start to shift at all. There is, to wildly understate the point, a lot of healing to be done.
A theme crops up in talking to people who have been ill a long time – not with life-shortening illnesses, but with life-limiting ones. There’s this subtle balance to be struck between not giving up hope that you’re ever going to get well and accepting that this is the life that you’re actually living in, with all its frustrations and limitations. Within that new life there’s still a huge amount of beauty and pleasure and joy to be experienced, and to be given, to be shared. This is a delicate thing, and not something I can pretend to be particularly skilled at. But amidst the bitterness and frustration at the unfairness of everything, at your own shocking lack of capacity, at the strange happy-sadness of watching your contemporaries start families or get promotions or go on holidays while your precious and limited hours tick inexorably past in the strange stasis of the sickroom – a muffled timeless cocoon where you seem, against nature, to age without growth or change – there are real joys. I find that it is possible, at least at times, to focus on these and to be both happy and grateful for all the wonderful things that remain to me, here in the ashes of my former life.
There’s this subtle balance to be struck between not giving up hope that you’re ever going to get well and accepting that THIS is the life that you’re actually living in, with all its frustrations and limitations.
These are, in many ways, skills that I would rather not be developing. I would rather be blithely living out the innocence of good health, at least for a few more years, but that’s just not my lot. There is no return from experience to innocence. Similarly, here we all are confronted with the reality of an ailing biosphere, and with the horrible knowledge that the sickness was on some level avoidable, and that we didn’t act in time to avoid it. Even for the mass of us who have spent our lives trying, in our many and various forms, to strive for planetary and social justice, we must live with the knowledge that however hard we might have worked we ultimately didn’t do enough. It is very painful, but here we are.
I can’t help but see these two situations – microcosm and macrocosm – as virtually identical: in both we must grope for this subtle balance between hope and pragmatism, between realism and action, and all with an urgency of appreciation for what does remain for us, for everything that is not – yet – reduced to smoking cinders. There is so much that is still so beautiful. We are still alive, and none of us for all that long.
Chronic illness strips a lot away. My fellow DM editor, the essayist and poet Mat Osmond, describes this as ‘everything that our society would recognise as personhood’, and I think that’s apt: in gaining sickness I have lost vocation, employment, status, income, beauty. You also often lose a lot of relationships – it’s hard for people to see illness, to deal with the terrifying reality that anyone can get sick, at any time: that it could happen to them. Also, more prosaically, you’re not so fun anymore. Fair-weather friends drop from your life with startling rapidity. But if you’re lucky (and I have been lucky), you’re left with a solid core of people who love you deeply and who don’t turn away from your pain and incredulity and disorientation. It is an immense blessing to know that the people who love you are there for the long haul.
So all these joys and sources of meaning – the markers of social ‘personhood’, if you like – have been withdrawn. This initially left a terrible gaping vacuum where my whole sense of self used to be. I felt like the absence of a person, as if I’d fallen through the floor of my life into an underworld that must have always existed somewhere beyond my previous ability to perceive: a cramped, murky, silent space where your voice falls dead from your lips and no movement is possible. I could look up and see everyone else still walking around in the surface world, all getting on with their normal days, only I was no longer there. Like a perverse reversal of the film The Truman Show: a world where absolutely nothing is about you. It was absolutely terrifying, deeply disorienting. I felt like a ghost of myself, like I’d disappeared.
Two or three years later, and if I’m honest I still have days (or sometimes weeks) that feel like this. It’s still true, but it no longer feels like the only true thing. Other ways of seeing have started to open up alongside this one, and there is mostly a bit more space to move in this parallel world, a bit more light. I’m left with two deep sources of joy and meaning that illness hasn’t touched: that core of extraordinary relationships, which have actually been reinforced by difficulty, stripped back into their most loving and most honest forms; and the seemingly endless procession of simple, reverent joys that are just inherent in being alive in the world, and which our social ordering – our busyness – often makes us deprioritise or ignore. It’s hard to be in bed for six straight weeks without noticing the way that the light moves around the room, even if you’re in pain or you can’t really move, or your brain won’t work so you can’t think, or you’re utterly miserable about your shattered life; it’s hard to look out at the same tree all day every day for a year without noticing its quiet incremental changes, its wild moods and quiet moods and stream of small visitors.
In some ways it’s undeniably true that I am now more or less just the ghost of Cate Chapman, haunting my own ruined life, but it’s also true that in some ways I’m more alive in the world than I ever was before I got sick. So much of the bullshit values of social conventions have been ripped away in this rude, sudden, painful descent to the underworld. Ill health can bring with it a deepening of compassion, solidarity, and a felt appreciation that both our joys and our sufferings are subject to changes utterly beyond our control. Of course I wouldn’t wish myself chronically ill, any more than I’d wish anyone else chronically ill, but there is nonetheless a real and deep blessing in this. Equally, few could wish to live through these end-times, watching a civilisation slowly implode and in doing so taking so many others down with it, but here we are.
I listened to a podcast recently where a Buddhist prison chaplain described an excited inmate leading him to the tiny window of his cell – a window that faced out onto nothing but an expanse of concrete yard ending in a high blank concrete wall – to show off a single dandelion that had somehow found purchase in a crack next to the window frame and grown there. No-one could wish for such a view, such a life, but we can still appreciate that that dandelion must have been deeply beautiful, deeply precious in its emblematic tenacity. We have to take the joys where we find them.
A sudden fracture in your normal functioning, such as a sudden descent into illness, leaves you utterly groundless. It’s like you’re walking downstairs in the morning to make a cup of tea, still in your pyjamas, and you miss a step. Except that you then just keep falling. You’ve parted company with the habitual interpretations with which we all usually overlay our realities and instead you are faced with the rawness of an utterly unfamiliar and unmediated experience without the cushioning of narrative. You don’t know what to do. Obviously this is horrible! But it does provide an extraordinary opportunity to really face life head on and – eventually, once you’ve realised that you’re not going to stop falling and somehow land back in your kitchen with the kettle just boiled – to radically reprioritise, to work out why on a deep, felt, pre-intellectual level, you are engaged in whatever you’re engaged in, and to starkly assess what actually matters in your life, precious and time-limited as all our lives are. I think that in some ways we would all be well served by doing this. Jump, now, if you can figure out how to – how I wish I hadn’t waited for the push.
There’s this line in Alistair McIntosh’s Soil and Soul where he says, …no place is more sacred, no peoples more worthy of honour, than those that have made beauty blossom anew out of desecration. It makes me want to weep every time I read it. Like many others, I started off with grand plans, as a teenager and young woman, about the difference I was going to make in the world. In fact, my triumphs – such as they are – have been more or less commonplace, unremarkable. My locus of agency just isn’t that big. And now this illness has humbled me, shrinking my world down small. This work of beauty-making can take place in many contexts, both with and without an audience, praise, recognition; with and without far-reaching impacts. Perhaps my part of this great work of remaking will only ever be trying to make sense of my own health and life now, the small space and community I find myself in, the echoes of collective and individual trauma still sounding right here. But that is still part of the work. We are part of the world, not something separate superimposed onto it; though this is easy to say and far harder to live.
Our cultural legacy of hubris and dominance has spawned the idea that we’ll be able to stop all the devastation our species has made in its tracks
In the same way, our cultural legacy of hubris and dominance has itself arguably spawned the idea that we’ll be able to stop all the devastation our species has made in its tracks. But this sickness of culture is deeper than our single generation, though we may feel justifiably poised on the absolute knife edge between living and dying. It’s deeper even than the industrial revolution, or – further back – the advent of farming, which often gets gloomily referred to as the beginning of the end. The movement of early humans from the ‘cradle of life’ in Africa was marked by the extinction of other species, particularly large mammals, wherever we roamed. Perhaps we have always been like this – adapting to new surroundings far quicker than our brother and sister species, spreading too far and too fast, taking up too much room. It’s only where we have settled for long periods, growing in sensitivity to and understanding of place, that we seem to have been able to live in more balanced and non-destructive ways. Again, I’m not saying it isn’t possible for us to live better, but this isn’t just a blip, with everything that came before haloed in a rosy glow of harmonious co-existence.
So what do we do with this? The sanest response that I can find is that our work remains to make beauty blossom anew out of desecration. We don’t get to choose either the context or the impact of that work. Healing needs to happen, and we all have our own part to play in that. If you are lucky enough not to need to urgently engage in this on your own account, then you have the opportunity to focus on the externalised manifestations of our culture’s sickness. But if the healing you are responsible for right now is only your own, that is still part of the work. So this is how I have attempted to square this utterly devastating curve ball of my body’s sickness and everything that came before it, and perhaps this is also a way to approach the great converging crises of our times: to keep moving in the direction we know to be truthful and just and holy as best we can, to keep deepening into veneration and reverence and wonder, and to work to peel away the compacted, muddled layers of hubris and trauma and distraction and wrong-thinking that seek always to blinker and misguide us. Our time here is short and precious and beautiful, despite everything. I don’t want to say anything about hope or about optimism; I’m not sure how relevant they are here. I will say this: Take courage – don’t lose heart.
IMAGE: ‘I read this painting as being about the body in its wider natural context: the whole environment vibrant with life around us no matter what is going on in our own physicality’ (CC)
Soft Rain (acrylic on canvas) by Kate Williamson. Soft Rain was inspired by the more gentle power of nature, painted intuitively to capture the energy and fleeting spontaneity of the sky and reflective pools. I live next to a large tidal bay and at each low tide the shape and size of the pools left behind are constantly changing. This painting is part of my ‘Emotional Landscapes’ series which aims to express an internal dialogue that speaks to the viewer through intuitively layered paint, and to capture human reaction past the ocular experience.
Kate Williamson lives in a nature reserve in the South Island of New Zealand surrounded by native trees, birds and rushing water. Williamson describes herself as ‘a humble cave painter trying to capture the unrivalled splendour of Nature (the real artist) on canvas’ at a time when the body of Gaia, our home is under threat of collapse. katewilliamsonart.com