Excerpt From Some Of Us Just Fall: On Nature and Not Getting Better
BY POLLY ATKIN
Maintenance 223-239
It is an early evening in early May. I go for a swim in the lake and it is glorious. I go in feeling sad and defeated, and the water does what it does – it holds me up, it shows me myself with a filter of sunlight and the odd clarity of lakelight – it reflects me back at myself, shows me flying above the fells and through the blue sky, how the sky is also in the water. It reminds me the body breathes in the inbetween, in the neither one nor the otherness of the warmer water just below the membrane of the lake’s surface, that the body breaches this surface, links water and air. That the body is only one creature amongst many. That the body is permeable. The leaky cup of the body overflows and is refilled by the leaky cup of the lake. That permeability is life.
What it doesn’t do is heal me. What it doesn’t do is make me better.
Swimming does what it always does: it moves my muscles and joints, gently, and without the drag of gravity making my blood pool in my hands and legs. It allows me to move more easily, less painfully. It lets me feel joy in movement.
What it doesn’t do is erase the pain. Not during the swim, certainly not after.
*
In Brilliant Imperfection, Eli Clare describes the ambiguity of cure, how ‘cure is slippery’, how ‘cure saves lives; cure manipulates lives; cure prioritises some lives over others; cure makes profits; cure justifies violence’. That it is ‘embedded in understandings of normal and abnormal, natural and unnatural’.
That ‘cure requires damage’ and locates the damage only in the individual.
That ‘the belief in cure tethers us not only to what we remember of our embodied selves in the past but also to what we hope for them in the future’.
Cure relies on undoing the abnormal, the invalid, the defective, and restoring the healthy, the whole, the natural.
Depending on your relationship to the past and future, cure is either a fantasy, or a threat.
*
Every time I crawl out of the water it is like pushing through a stage of evolution again, when that evolution only makes you unfit for pur- pose. Discussing this with E – a year-round swimmer, a genuine lover of the cold – she says that knees prove the implausibility of intelligent design. They aren’t fit for purpose.
Every time I come out of the water, gravity falls on me so hard I’m not sure I can get myself upright: to pile one joint back on top of another. Standing, the pain of downward pressure re-establishes itself. The pain in my hip, or my foot, or my ankle, or my shoulder. Ah yes, this is my body after all.
*
My relationship with Grasmere is a relationship with water.
I was sold on the Lakes, as William Wordsworth described them in his Guide, as a miniaturised Switzerland: an idealised landscape of glacial mountains, meadows and cool, clear lakes.
My first year here I felt myself leaching away in the rain. I felt the rain refilling me, with everything it brought from its journey. I under- stood my body as permeable, and the things held within the thin membrane of my skin as in flux, moving within a greater system, in a way I had not quite grasped before. Not as anything other than a strange, distinct moment. Here I understood this to be life, to be the state of our daily existence.
When I waded into the peaty brown water of Easedale Tarn on a hot day in my first month living in my attic bedroom, it sealed the con- tract I had already made with the Lakes. It had been a long time since I had swum in fresh water. I had risked a lot, given up a lot, changed things that made me frightened and uncomfortable to be there, but I felt what I had to gain.
I thought that Grasmere was curing me. I fell for the lie, without even articulating it.
I ignored my body’s mutterings. In my first spring in the north, just a month or so before I moved into my Grasmere attic, I walked the Langdale Pikes with a group from my university. It was my first fell walk in years. I thought I was going to faint or throw up on the ascent. I had to keep stopping to catch my breath. Afterwards my knees swelled up like overripe persimmons. But I was amazed at myself, and at this place I had come to. I thought I was making myself better, that Grasmere was making me better.
I thought if I walked and swam I would keep getting better. I would get stronger. Grasmere was my physiotherapy. Someone told me about a yoga class that turned out to be the best class in the world, and I started practising yoga for the first time in years. I felt good.
In the winter, I walked the coffin path every afternoon after I finished work in the museum or cottage, drawing circuits around Grasmere and Rydal before coming in to work on my doctorate by the fire. In the summer I went on walks with friends that lasted into the long gloaming, and swam, and laughed.
Grasmere was my medicine. I believed in it. I had faith. I had love.
When it began to fail me, I thought I just needed more, more tree, more lake, more mountain. I couldn’t understand why it wasn’t working any more, why I was getting sicker and sicker, despite the mountains, the water, the trees. Even after all those years, all that sick- ness work experience, I still fell for the oldest line. I still fell for the impossible pill.
*
Clare unpicks cure to its root as restoration, as an effort to turn back time. That ‘it grounds itself in an original state of being, re- lying on a belief that what existed before is superior to what exists currently’.
A few years ago I worked on a collaboration with a climate biologist, for a poetry project on climate change. The scientist told me you can never truly restore a habitat, just make a different one. She was talking about fenland restoration. She used the phrase ‘not better, not worse, just different’. Or that’s how I wrote it down. One set of insects will have died or dispersed as their old habitat was removed. After restoration, a new set comes in. Different. Not better, not worse. Never the same. ‘You can’t go backwards in time,’ she told me.
Cure assumes there was a time when things were unproblematically well to go back to, when the body was benign, polite, did as it was asked with enthusiasm and courtesy. I don’t have such a time to return to, not in my body.
Say the body is a body of earth – a small planet in which we live like a molten core, or, no – a mycelial network in the soil – what is there to be restored?
The ideology of cure makes a cultivated garden of the body, a small-holding, a landscaped park. It wants the body weeded, the soil enriched, the pests controlled. It wants the high yield of the body. The neat verges of the body. The municipal lawns of the body, mowed into tidy stripes. The flowerbeds of the body, tulips blooming in intricate patterns just as planned.
But the body was never a garden, unless by garden you mean the be- ginning of everything. Our first and only home. The place we have been sent out of. Though I don’t believe in this origin story.
Now I see talk of rewilding the body, but this too is only an attempt to restore a health you think you lost when you put up all those fences, when you pulled up the growth you designated unproductive. You think wildness will save you. You think nature is essentially good and fair.
Nature doesn’t care about the integrity of your wild body.
If it restores you to wildness, it will be through feeding you into the earth.
*
Maintenance is the name for the stage reached in the treatment of haemochromatosis when the levels of iron stored by the body have been reduced to a level deemed safe. It is the level they want to keep you at, for your own good. They want to keep you level. They want you well maintained, like a sports ground or a shared-occupancy building.
As with anything, deciding when to stop is vital.
There are many ways to measure the amount of iron in circulation and in storage in the body, but for haemochromatosis the most important indicators are the levels of serum ferritin and the transferrin saturation.
Ferritin is a protein that stores iron in the body’s tissues, releasing it as required, but a much smaller amount in circulation in the blood acts as a transporter for iron, carrying it to organs. Iron is bound to the protein, carried through the blood, and released at receptor sites. Ferritin is a courier. The amount of ferritin acting as a courier is what is being measured in a test of serum ferritin.
Serum ferritin rises as the amount of iron in storage in the body rises, but it can also be raised by inflammation, so alone cannot be used to diagnose haemochromatosis. Once diagnosis is made, though, it is a good indicator of the quantities of iron in the body.
Serum iron is another measure of the iron content in the body, combining the amount of iron circulating carried by ferritin, and the amount carried by transferrin, another protein which transports iron around the body. The total iron binding capacity is a measure of how much iron the body can carry through these proteins. Transferrin saturation is a percentage calculated by dividing the serum iron levels by the total iron binding capacity. It shows how much iron is currently bound to these carrying proteins.
In most people, you would expect the transferrin saturation to hover around thirty per cent. When I was diagnosed, mine was in the high nineties, meaning almost all the iron carriers in my body were being used. My couriers were all occupied, on zero hours contracts.
Until June 2018 there was variance in what was considered maintenance in the UK, but new guidelines for diagnosis and treatment are seeking to standardise therapy. The most important change in the new guidelines is to insist on measuring maintenance not just by the levels of ferritin in the blood, but also by transferrin saturation, keeping both below fifty: fifty micrograms per litre of ferritin, and fifty per cent transferrin saturation.
Both ferritin levels and transferrin saturation are relatively clumsy ways of trying to guess at iron storage and toxicity. They show one tiny part of a much larger picture that many haemochromatotics will never get to see. Although some people are given access to a special kind of MRI scan – a FerriScan – that shows the iron stored in organs – most aren’t. Most of us will never know with precision exactly what damage has been done where, how reversible it is, how reversed it has been as our levels have come down.
Maintenance is what it says it is: not a remission, but an attempt to keep things steady. An attempt to preserve what is good in the present, as best we can. It is a holding pattern, nothing more.
*
Moving my body on land is like dragging a dead body after me. My own dead body. It is a dead weight pulling me back downhill, downstairs, down to the ground. Sometimes I help myself by lifting a leg with my hands. Sometimes I ask my partner or a friend to push my back, to take some of the weight. It is as though I have two bodies and one of them is abnormally responsive to gravity, or an empty skin stuffed with rocks. I am a light thing and I have to carry it, and it is carrying it that makes me so tired, that makes me stumble and fall.
Gravity is my enemy. Water is the enemy of my enemy. Water is my dearest ally.
*
Sometimes, I limp all the way to the lake. I say ‘all the way’ and it makes the walk seem epic. To the abled it would seem a tiny distance, not worth thinking of as a walk, even. But when each placement of your foot on the ground triggers shooting pain in a foot or a hip, when carrying just a towel and a water bottle pulls too much on your shoulders and back, even a few metres becomes a marathon. Sometimes my legs aren’t too bad but carrying my bag feels like lifting the planet. If I didn’t live so close, I wouldn’t get there at all. This is the grace of proximity.
Getting there hurts, but I know being in the water will help. Short term, as it lifts me up into its kinder element, its more forgiving physics. Long term, as it keeps my joints moving, lubricated, and helps stop my muscles from becoming weaker and weaker. Some people believe the secret to managing EDS is to keep the muscles as strong as possible, that they will keep the joints together where the ligaments fail. But even our muscles are different, and respond differently. All I am certain of is that water is better.
When I step into the water – when I wait until my legs have remembered the water, and my sore ribs say they are ready to go under, when I have loosened my difficult shoulder as much as I can, when I dive under or glide along its surface – I slip out of my skin and into another one that looks the same but feels completely different. It is agile and confident. It is trustworthy. It trusts its environment. It trusts itself.
*
The Nature Cure is a distraction technique. If it works it is because it takes you out of yourself, the circuit of thought you have become trapped in, reminds you of something outside, bigger, more. It takes you out of yourself and puts you back in, differently.
The Nature Cure is a coping mechanism, a method of self-soothing, the kind you might be taught in CBT class or by a neuropsychologist, the equivalent to listing everything you see out the window, or counting, or pyramid breathing. It is a tool of management, of de-escalation.
The Nature Cure is Distraction Therapy with a greenwash, trailing all the colours of the rainbow, all the colours of the aurora borealis, all the colours of the sunset/sunrise.
*
Cumbrian poet Kate Davis describes swimming as an equaliser. She lives with permanent effects of childhood polio, which she wrote about in her first poetry collection The Girl Who Forgets How to Walk.
She tweets:
Being in open water is such a good feeling. I’m not brilliant on my feet, I trip and stumble a lot, fall sometimes. But you can’t fall over in water, it takes away my physical problems and makes me equal to other people.
You can’t fall over in water. This echoes so much of what I think about my own relationship with water, about my body in the water, and out of it.
I am fast in the water, often faster than my companions.
I know even as I enjoy my slick speed that it is internalised ableism that makes me relish the fact that in the water I can outmanoeuvre friends who are fitter, stronger, more agile than me on land. Friends I am always trailing behind, or apologising to for being so slow. It is internalised ableism – mine, not theirs – that makes me apologise, that makes me embarrassed by my awkwardness, my pain, by the time I have to take thinking about where and how I place my feet, the turn of my ankle. I know it comes from something that hurts me, that hurts us all, but to glide away in the water, to outpace them . . . sometimes it is too sweet.
*
In Waterlog Roger Deakin writes, ‘When you enter the water, some- thing, like a metamorphosis happens. Leaving behind the land, you go through the looking glass surface and enter a new world in which survival, not ambition or desire, is the dominant aim.’
But none of these is my dominant aim. To see swimming as a way to remind the body its aim is survival requires that the body isn’t constantly struggling for survival, which the sick body is. Which my body is. I never leave survival mode.
This has to do with risk, with what is at risk when. I swim to avoid risk, not court it. Sarah Jaquette Ray has recognised that, ‘At the heart of adventure sports is the appeal of personal challenge. The individual – usually male – pits himself against Nature and survives.’ This acknowledges the dominance in nature writing of the figure Kathleen Jamie famously called ‘the lone enraptured male’ – ‘here to boldly go’.
Jamie suggested, ‘It’s only recently that we, with our (almost) guar- anteed food supplies, motor engines, vaccines and antibiotics, have begun to make our peace with these wild places, and to seek recreation in land which was once out to kill us.’ Jamie’s lone enraptured male is also necessarily ‘bright, healthy and highly educated’. Ray calls this figure the ‘wilderness body ideal’. Stacy Alaimo recognises it as ‘the abled, hyperfit body’ that dominates environmental writing and thinking, and is clearly at the centre of the majority of nature writing.
For people who are in continual pain, the relationship with bodily risk is different. Pain is not a healthful by- product of healthy exertion or impressive effort: it is a constant companion. You want to limit your time with pain, not encourage it.
For people who live with fatigue, the relationship with effort is different. Exhaustion is not a healthful by-product of healthy exertion or impressive effort: it is a constant companion. You want to preserve yourself from fatigue, not create it.
Ray asks, ‘If getting close to nature is about risking the body in the wild, what kind of environmental ethic is available to the disabled body?’
When being outdoors becomes about survival instincts, about risk, those who experience risk differently are sidelined, erased.
It’s a lot easier to think of bodily risk as an adventure, rather than a crisis or a bad thing to be avoided at all cost, if you are healthy, resilient and able-bodied. If you might shiver all day after you get out of the water, but not if you shake so violently you slip a rib out of place, and spend weeks in agony, or wake up unable to move a limb the next day. It can seem beneficial to push your body to the point of pain through sporting endeavour if you are not in pain every moment of the day. If you don’t dislocate joints or break bones just walking across your living room, or packing shopping at the supermarket.
Ray finds ‘the only place for the disabled body in the wilderness ideal is as an invisible, looming threat – symbolic rather than actual’. The body the literary swimmers are splashing away from, as they round the bend of their fantasy river.
*
I have to be careful. I choose places I know I can enter and exit the water without un-due risk of injury. There is no frisson for me in the notion that I could break a toe, or more: I know what that feels like. I know the cost, short and long term. I’ve done it. I’ve done it just crossing a room, time after time. I know the frustration of having to unplan weeks. I live with the adjustments breaks have made to my gait, my strength, I live with their continual low hum.
The challenge is not swimming, but everything else. The risk is not swimming, but everything else.
I don’t experience a cold water rush. Maybe my broken thermostat forbids it. Maybe my autonomic dysregulation undoes it. I get no high, no rush of dopamine, no intense feeling of aliveness. If anything, I feel the reverse – a deadening sensation after movement ceases and the unpleasant sleepy shutdown that cold of all kinds always brings – before the ceasing up begins, before the muscle cramps set in.
When I swim in very cold water, all my old breaks burst into loud, throaty song, as though they are new again. The cold unwinds time, peels apart the calluses I can feel under the skin. Cracks me open. There is no healing in this. Not for my body.
*
The Nature Cure is against treatment. The Nature Cure embraces wellness. The Nature Cure tells you all you need to do to ‘get better’ is to a) go outside more or b) be more active in a natural environment. If you remain sick you are doing so because of your own lack of commitment to getting well. You have not embraced The Nature Cure. Maybe you are still taking your toxic medicines, maintaining your toxic connections with the contemporary world. The Nature Cure looks both stern and sad. The Nature Cure wants the sick to give up their pills and their patches, their bottles and syringes because the birds will make every- thing better.
The Nature Cure wants you to tell your friends, ‘The Nature Cure is my only medicine!’ The Nature Cure forgets that it is cruel.
*
When our own bodies are presented as unnatural, as something to be corrected, both the word ‘Nature’ and the word ‘Cure’ take on sinister connotations.
The things that make me sick are genetic, are part of my own nature – written in and by the smallest parts of me, at the centre of my every cell, part of my diverse internal landscape – so how can any cure that wants to dig them out of me be natural?
Even if it were possible, which it isn’t, cure would be my enemy. Cure wants to undo me. To unmake me, in the name of ‘healing’, in the name of ‘wholeness’, in the name of ‘health’. In the name of natural and normal and well.
The dark side of cure is eradication. Cure wants to remove, to erase difference. Cure wants people like me to not be people like me.
*
Kate Davies, a maker and writer based in the Highlands, returned to swimming after a stroke. Her experience of disability is different to mine, but her words are words I could have written myself, have written myself: ‘In the water, my body is supported.’ In the water, she says, her body can move ‘with something that feels like ease’. On the land it is a very different matter. It is like being two creatures.
She is clear about the realities of what swimming can do for her and what it can’t. She knows it has improved her muscle strength, that it is helping her. Swimming has therapeutic properties for her body and in turn for her mind. But it cannot turn back time. It cannot restore her to an earlier self, and there is not expectation in her writing that it should.
*
I swim because I like it. I swim because my body is lighter in the water, because I move more easily in the water. I feel competent in the water in equal measure to how incompetent I feel on land, always stumbling, off-balance, having to think so hard about where and how I place my feet. It is easier to be in water. It is easier, and it is beautiful.
I swim because through chance I found a painkiller that works enough for me, with few enough side effects, to allow me to get that far, some of the time: to reach the water, to move myself in it.
I swim because of all the ways I can move my body, swimming hurts me least. I swim because it is good to move. It is good for all of me, for how I feel, and how I feel. I am more myself in the lake than at any other time.
I swim because under the water I feel like my body and I are working together, that it might do what I ask of it, that we could be a wonderful being.
I swim because I have feelings for water. At any given time I would prefer to be in water than on land.
I swim because when I swim I am part of something bigger and wilder than myself. When I swim I swim alongside the lake’s inhabitants. In the summer months swallows swoop over me and damselflies and dragonflies buzz around my ears. Ducklings cluster at my feet as I dry. The woods around the lake are full of birds – woodpeckers, treecreepers, flycatchers, long-tailed tits. Grey wagtails flit from rock to rock, their yellow bellies shining back from the mirror of the water. In the winter a hunched-up heron and a black-headed gull in its snow-white hood watch from the shore.
When I swim we are part of one body, the body of the lake, and many.
The lake does not cure me. The water does not cure me. Swimming does not cure me. Why would it? It is asking too much of a body of water to fix this inconsequential human body.
I swim as a means of maintenance. To keep myself as level as I can.
*
I learnt to swim at Noel Street Baths, Nottingham. Opened in 1929, the Baths were closed in 2010, when a new leisure complex made them redundant. Now, half of the old Baths are occupied by Nottingham
Climbing Centre, with the shallow end of the pool I learnt in repurposed as bouldering walls called ‘the shallow end’. The other half of the building was taken over in 2017 by Living Faith, an evangelical megachurch founded in 1983 in Nigeria.
I remember my swimming teacher, her kindness and unrelenting insistence I conquer my intense fear of putting my head underwater. She used to make me hold my face in the water at the end of every lesson, but I hated it, I hated it. I tried not to be afraid, because of her calm faith in me, in her method, because of her determination, but it was only trying. I pretended it was helping, but nothing changed, not till much later.
I remember her face, her hair, her manner, but not her name – I have to ask Mum for that. Dad says she was boneless – if you shook her hand it felt like she had no bones under her skin at all. This could sound like an insult, but we know what he means, he means she was formed differently, that she was one of us. ‘Polly is boneless too,’ says Mum, stating the obvious. They argue about it a little. Dad insists she was more boneless than I am. Mum isn’t so sure. It is unresolvable. I phase out for a moment and hear us from a distance. We are arguing about how far outwith the bounds of normal human structure I am; the woman who taught me to swim when I was four was. I don’t re- member this about her. I just remember how much I adored her. We all wonder aloud whether her different structure was what drew her to swimming. We are all as bad as each other.
Mum wanted me to have the confidence in the water she never had. In her childhood the sludgy waters of the Solway Firth receded miles through bogs and archipelagos of grassy tussocks a careless child could fall and drown in. It was not a friendly sea to learn to swim in.
She learnt to swim at Victoria Baths in Sneinton, in her twenties, after she met my dad. In the summer, they would sail dinghies at Nottingham Sailing Club. It was an older woman who crewed for Dad in his National 12 sailing dinghy, who taught my mum to swim. Once a week in winter they would go to the swimming baths and then for fish and chips, in holding for the summer’s sailing.
There is a history of late learners in my family. May Antill, May Atkin, Dad’s Nana, learnt to swim in her sixties. She decided she wanted to learn, and she did it. One more challenge to meet. She would take my dad and his sister to Arnold swimming baths, and they would walk all the way, walk through the cavy house of Nottingham to learn to swim.
*
In spring 2018 I enter maintenance for the first time. In this new detoxified stability I am able to begin to decode the signals my body has been desperately trying to transmit to me. I thought I’d never be able to unravel the fatigue and pain that have dominated my life into different strands, trace them back to their roots, but now I know what causes some of them, I can begin to tell them apart. I learn the difference be- tween the zone-out blankness that means my B12 has bottomed out, and the mammoth unrefreshing sleep that means my brain is rusting up. I learn to distinguish continual micro-injuries of my joints from the pain caused by iron deposits around them. Most importantly, I find I can translate these signals into messages I can pass on, and those messages can be translated into appropriate actions. I know what I need to do to help us both.
By the summer my iron stores have begun to rebuild, and with them, their effects.
In the fortnight before my blood tests show the rise, I notice certain things. My hips begin to ache again, in a very specific way – a deep ache in the ball of the joint, and a pain around it. They are tender to the touch. In the night, when I roll onto my side, the pain of the pressure on them wakes me. It is only when this comes back that I realise it had gone, or had died down to background mutter, in the previous couple of months.
The first night I notice the pain around my hip joints, I think it is caused by swimming. There is a heatwave and I have been swimming most days in the lake. There hasn’t been a day of rain in months. Some of the lakes have blue-green algae in them. Grasmere hasn’t tested positive for it yet, but it is smaller and warmer than them. It seems at risk. I know one of the symptoms of blue-green aglae poisoning in humans is joint pain, and I worry that my hips are telling me that the lake is eating itself. That they are warning me of environmental catastrophe.
I am used to feeling things before other people do. A canary in the mine of everyday life. I feel everything. Why not ecological collapse?
