Decorate.

Even the pits, troughs and ditches.

Content note:

Dear disabled friends - I use no medical language in this essay, but I do describe a difficult flare in some detail. I know you know the drill and I’m sending love and solidarity. You don’t have to read this today, or ever. You can also skip to the second half and read about art on its own, if that’s better.

Dear non-disabled friends - What I’m describing is an experience that happens for me from time to time as part of my experience of chronic illness. Things like it happen to varying degrees for up to 42% of the working population in the UK (people noted as living with long term health conditions, 24% identify as disabled). I recognise that reading about it might provoke feelings - I hope you can be with them and offer a smile or a cup of sugar to your neighbour tomorrow.

---

‘Flare’ means different things to different people. The dictionary acknowledges both its slow and striking, noun and verb shapes. A sudden blast, blaze or flash - Perhaps a warning shot. A gradual widening in shape, an offering that goes beyond the basic; With flare. Blazing, glaring, bursting, glimmering, unsteady flickering.

In my shape, a flare widens. Joints throb, sinew taught, nerves zing and panic in webbing circles. Heavy limbs, heavy eyelids. Mouth dry, eyes dry, skin dry and stretched. Stressed. Tight, tight, pop. Quick, quick, still. Stiller. Stomach turning, heart racing, calories burning, appetite absent. Not always, but this time, morale dips, sense of self wavers. Frustration, anger, grief, delirium make their stops. A wave of acceptance when there’s nothing else.

She escapes to the forest. The forest and the lake and the trees and the air. Bare feet on spongey earth, moss, soil. Takes steps to immerse her shape in cool water. She focuses on sensation, one at a time. Warm day, cool breeze, woodland smell. Entirely fictional with space enough to be real. Nothing else to ‘get back to’, so let’s be here.

There is a limit to ‘listening to your body’. After the point at which core messages have been communicated, it can be right to escape. To the forest, perhaps. In such thin places, movement happens by osmosis; between real and imagined, known and unknown. I don’t mean this literally. I am not losing consciousness. I am surviving by losing unnecessary divisions, unnecessary distinctions. Someone throw me a life ring. But also leave me here ‘cause I’m learning. Incomprehensible contradiction.

I share carefully. “Hope you feel better soon”, or worse, “hope you’re feeling better by now” are well meaning but unbearable messages to receive. Words are short and energies are so timid, I send up a flare to one or two who I know have the landscape for this to land in. We’re in touch over the coming days and every message is a glorious object. A cacophony of colour and contact that lives in the room in a tone I can choose. This storm is longer than usual, deep rest taking the edges off the widest parts eventually. A week in, five minutes into a steady stroll that throws daylight directly onto my face, a perfect voicenote arrives:

“I hope you’re seeing moments outside the trenches by now, and if not I hope you’ve started decorating.”

---

Things to Do in the Belly of the Whale
Dan Albergotti

Measure the walls. Count the ribs. Notch the long days.
Look up for blue sky through the spout. Make small fires
with the broken hulls of fishing boats. Practice smoke signals.
Call old friends, and listen for echoes of distant voices.
Organize your calendar. Dream of the beach. Look each way
for the dim glow of light. Work on your reports. Review
each of your life’s ten million choices. Endure moments
of self-loathing. Find the evidence of those before you.
Destroy it. Try to be very quiet, and listen for the sound
of gears and moving water. Listen for the sound of your heart.
Be thankful that you are here, swallowed with all hope,
where you can rest and wait. Be nostalgic. Think of all
the things you did and could have done. Remember
treading water in the center of the still night sea, your toes
pointing again and again down, down into the black depths.

---

My greatest fear is that artists will give up. Every fear I considered on my way to this realisation horrifies me, turns my stomach inside out and back on itself just to think about. And yet. And yet. It’s this: My greatest fear is that artists will give up.

It’s never happened before in history. Prisoners made things and hid them in their bunkers at Auschwitz. Handmade trinkets have been carried thousands of miles in migrant pockets. Medieval hoards gathered by everyday people show over and over again that we are no different from magpies. Stories and songs have been told and sung for generations, defining whole countries and cultures. Even in the most oppressive landscapes, human’s innate desire to enact our ability to create, to engage with beauty and connect with one another has always pervaded. I think it always will. I have to hope it always will. There has always been threat. There has always been pushback to this kind of freedom. But it’s true that the threats are more organised, insidious and interconnected than they have perhaps ever been; The age old tools of fascism operating a hyper capitalist context with Ai fooling folks on the daily. And an arts sector that only knows to stay alive by following the business plan, to more degrees that keep artists safe. My recent months have been full of the whispers of artists giving up. A background note of the interaction. I hear it’s not a fully formed thought or a wholly simple decision, but the toxic seed of an exit strategy is planted and, as much as I value autonomy, I uproot it as fast as fucking possible. No. There is plenty you can leave, change or choose not to feed. But do not mistake what you are putting down as your artistry - as your ‘artist’.

The blank page is a trench. Confronting, terrifying, if properly comprehended. The truth waiting to fill that space has no value to ‘the system’, the rules of the wider world as they are currently written, and that is frightening. As state control increases, the artist becomes more and more dangerous. It’s exhilarating and awful and completely disorientating to be deemed dangerous while enacting something that brings most artists a sense of place, safety and connection to a world beyond themselves. Burrowing, furrowing, enclosing all emerge as options. Or perhaps the opposite: Exploding, expanding into shapes and situations previously not envisaged, giving away all the treasures and promising them to people who don’t see them like you do, just so they live somewhere in the daylight. I understand all of these responses. They are all rooted in a biological need for safety, which is the most understandable thing in the world. Perhaps this is one of the many ‘lessons’ I’ve learned by living in a chronically ill body, which undulates between feeling like home and hell in response to no one thing I’ve done: All states are places to create. To decorate. To be, to be alive in, to be alive to. Magic is made in the trenches. Not because of the trenches - please be absolutely clear that I am not romanticising struggle, pain or poverty - but because the trenches are still ground. It is one set of conditions for exploring beauty on altered terms. Beauty is not always beautiful. It might also be. Not knowing is so important. In a world of colonised knowledge and certainty as progress and profit, thank goodness we don’t know what beauty will emerge. Thank goodness we can be sure it will, if we are alive enough to notice.

---

If I Was a Painter
Lisa O’Neill

If I was a painter with colours no end
I'd paint the whole thing simply again
Where everything runs into everything
Where every colour is born without sin

Red be a roaring river in my veins
Green be the beat of the heart in the trees
Blue be the pull of the moon on the tide
Let brown be the base of some true love's eyes

Special thanks to Erin Williamson, Letty McHugh and char for being such generous, supportive and safe places to explore these languages and knowings. You are all woven through this essay, and everything else.