Things are changing. Contrary to the idea that things are always changing, my life hasn’t actually changed for quite some time. It’s not been so much a repetition of the same things each day, more like a kind of trudging circle, like walking a slow circuit round and round, seeing the same shifting view, the same enduring landmarks rising to meet me, the same patterns of quiet and challenge. But now there is… not something new yet, no, but markers of familiarity are dissolving. Instead, when I look up at what was known, I find the landscape blurred and blank. I am not where I was. I don’t know where I am.
On the surface, everything is much the same, but I can lay out my findings in front of me, evidence to me and to you that I am somewhere different. Look: the soles of my shoes are muddy after years of pristine un-wear. My daily walks have continued and expanded. I lean on my red walker, up the street and back again, my eyes straining under my glasses as I try to follow the edges of things, finding shapes, movement. The view is different on foot than when I'm in my wheelchair. The new landscape is slower. It jolts and moves with my unsteady gait, my heartbeat beating its hard time in my ears. I feel the word ‘grounded’ in a new way and realise how disoriented I often feel in my chair as I squint to see without the sense data of my feet to guide me. As I walk, I unravel hope behind me like a red carpet until I stand right at the edge of its length. I lift my face to the sky, eyes closed, feeling the space above me, behind me, leading all the way back to my door. I don’t know what it means yet, this progress, only that for a long time I couldn’t do this and now I can.
Just as blurred and unknown, there is other evidence of change. There are new notes in my medical files, an emergency hospital stay — that in itself its own sudden transformation from the known to the unknown, metallic, antiseptic, artificial, the polar opposite to home. There is new biology to learn: cervical spine, spondylosis, cerebellar tonsillar ectopia. A new and persistent pain rings in my head like a bell. I take new medication to numb and mask it which makes me feel strange and not myself. As my range improves, my vision and light sensitivity worsen. I hold the old, sweet hope of my body’s healing power alongside the reality of new diagnoses, new difficulties, and all this ‘new’ means change, like it or not. I am learning that you can heal in one direction while losing ground in another. A lesser-talked about manifestation of change is not a movement from A to B but something less direct, something more all-encompassing – shifting, dripping, morphing – more like the forces of geology than a car journey. We are frequently, simply, just altered, in many directions at once, in ways we don't always understand.
As if to hammer that point home, I have suddenly found myself facing a substantial loss in income — a landscape and self re-shaper if ever there was one — via a complex mixture of circumstance, bad luck, hard choices, unfairness and my body’s inevitable limitations. Change rarely ends up affecting you alone: you must watch as everything else alters around your epicentre, and that makes it harder. I try to hold the centre still, to stop the spread, to protect the people I love from my own crumbling. I turn over possible next projects like Tarot cards, trying to read my future. I research grants with a hole in my stomach, wishing that I could support myself and my family without always having to prove our worth to some faceless stranger. I try to conceive of new ways to earn while reluctant to add to the disillusioning noise of everyone trying to sell things to each other, all clamouring to be heard above everyone else.
Yes, I am in flux, through and through, sitting between what was and what might be, grasping for a new direction like a shrew in the dark trying to feel vibrations with its body. And yet, grappling with scarcity and lack, I end up feeling more and more certain that abundance might already be here. I feel, bizarrely, extraordinarily lucky. As I notice the pull to achieve, to be successful, important, I also feel with something like a free-fall that ultimately my personal achievement might not matter at all, that it might, in fact, miss the point entirely. Whenever I catch myself worrying over my situation, I’m struck by the embarrassment of my dissatisfaction and complaint when held against the reality of the rest of world’s suffering, Gaza’s in particular. Everything about me feels up for debate — nothing feels certain — and I can’t help but wonder if that might be a good thing.
A grimness had crept into my face and my walk this morning, I admit, and I had to consciously let it go. I drove my legs on to the point I’ve decreed the turnaround point with a painful, pumping ferocity, my walker rattling on the damp pavement alongside the harsh call of magpies in the dark winter morning. I wondered about pushing further, perhaps to see if I could speed this whole business up, push change beyond this aching, waiting tipping point, but there is making wise choices and there is deliberately making things worse or more complicated just because you can’t stand the tension, and I have learnt now, thankfully, the difference between those two things.
Back at the door are two small pebbles I’ve placed on the wall, each with a straight band of white which I’ve arranged up to make a continuous line. Each time I return home, I put my fingers to them. Under this compression, this alteration, I realise how easy it is to begin to harden myself like stone too, to clench around the change, perhaps hoping that in doing so, a new, clear line might appear more quickly in me too, giving me something to follow, something to align myself with, but I don’t believe hardening is the way.
What to do in the middle of multi–directional change like this, when you realise you are lost? Just embrace being an edge-being, perhaps. Accept you don’t get to be anything solid right now and wait and watch. Be something of the ground before it hardens, something softened by weather; be a creature of the dark, sensing your way through. Be malleable, be open, accept not knowing, feeling what it is really like to be alive, stripped of all stories and illusions. I am trying to smile at all this. I’m trying to laugh and say, ‘welcome’. That is the power of the in-between, I think. When you don’t belong anywhere, you can start to belong to everything, to hang over and under it all like a full and warm spirit of the land.
There is hope here still, and a lot of gratitude — I can feel it here with me in the dark. I wait. I walk, on stronger legs for once. That will do for now.
💬 I’ve been sharing…
My daily walks in my Instagram stories, partly as a way to hold myself accountable and partly as a way to celebrate this new achievement. I’ve also been sharing this year’s sewn advent calendar by designer Corrine Lapierre! You may remember last year’s sweet woodland scene. All my progress so far can be found on my highlights reel if you’d like to catch up.
❤️ I’ve been enjoying…
On the theme of advent, I have been so enjoying my tea advent calendar: two bags of some delicious and different flavour every day. I’m already wishing there was a year-round one. There’s something about surprise tea every morning that really lifts my spirits and, more and more, I’m enjoying embracing the randomness of chance. I’m sure I’ll write more about that soon.
🎧 I’ve been listening to…
The World’s Beyond Number podcast, which has quickly ricocheted to the top of my most favourite things ever. It’s a long, narrative, cinematic D&D campaign with the vibe of a Studio Ghibli film, told by four world-class storytellers. I’m trying not to race through the episodes.
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Oh …… Ah …….
I marvel at the common thread. The knowing of the darkness, the finding of an edge, the understanding that the it’s OK to stay there, if you need to, or maybe move on if the body has enough resource.
Knowing the moment when you can lift up
a corner of the comfort zone and push a little further - just as valid as the choosing or the needing of total rest. There must be a mysticism behind this that we all feel and share, there must be a knowing and a learning going on as a group, or why else would I think - Oh, so you know this territory too?
And hope, when you would think it should have been extinguished by now, still surprises you when you emerge like a mole blinking up into the light, and feel a wellspring of joy in your heart. You doubted you might ever feel peaceful with the sun on your face ever again. Yet here you are …… Or should I say - here I am ….
Your writing leaves me breathless. May the force (and whatever it else it takes) be with you for a long, long time.