Note: Originally written in 2014; updated in 2024.
Recently, I've spent a fair bit of time in a wheelchair. I'm lucky in a few ways: in knowing it was temporary; in knowing roughly how long it would last, and in being a writer.
The first two consolations, and the why, are quick to explain. My endometriosis flared up unexpectedly and fast. I went from striding forth every day to working on the sofa and being wheeled about, but I know the drill with endo and I know the timings. I'm now on the upcurve and getting back my strength. As for the third consolation, ahh, that is my soft cushion against all life's odds:
Live with a constant passion,
reckless with your heart.
Refuse to accept your ration.
Throw out the old and start
again, and in your fashion,
rebel, play your own part:
nothing so shit can happen
that you can’t make it art.
I first wrote that poem, with a few variations, in my very early twenties, about heartache. The final lines, though, "Nothing so shit can happen / that you can't make it art" has played in my head through very different difficulties.
I believe it's important to get the order right, here: you don't have to go through shit to make good art, but any shit you go through can become good art. And that glimmering possibility of art makes the shit more bearable: that instead of simply freezing, gut-sobbing, or despairing in the slow erosive forces of banality, you tell yourself, "I will write this," and you observe.
In my similarly early twenties, I was badly depressed and had recently lost job, boyfriend, home, and country. I got a carework job looking after a 95-year-old woman who, unbeknownst to me, was starting to lose herself in dementia. I'd done carework before and loved it. This woman was nit-picking, hostile, insulting, aggressive, dismissive, irrational, and sneering. I was in no place to cope with that. I kept begging the agency for a replacement, but they kept cancelling my request after speaking to her during my two-hour break (the only two hours I wasn't on call and in her home). I only recognised the dementia years later, retrospectively, when I read, Mother, Can You Hear Me? by Margaret Forster.
At the time, though, I couldn't cope and I had to. So I saved it. I saved up every insult, aggression, and accusation she threw my way, to write up that evening. I kept a sprawling, barely fictionalised document to which I added each day's nuggets, late at night. I knew I'd never be able to recreate the seventeen items that had to be on the breakfast tray, on pain of scathing attacks, remember the banana in the bathroom, or conceive a world in which the cooking bowl couldn't be rationally placed on the shelf below its rightful home. Saving it up stilled my tongue and buoyed me up when she mocked my upbringing or accused me of stealing the money I'd watched her give her grandson. Saving it up helped me keep patience with a once-kind woman who was losing her mind in a way I didn't recognise.
I would never wish that experience on my younger self any more than I would wish a wheelchair on my recent self, when I could've cried with longing to go walking and paint walls and plant herbs. But at least I know I can save these things up, and use them for writing, give them a purpose beyond enduring the moment, and for that I'm grateful.
It reminds me of my slow attempts to overcome arachnaphobia. Ten years ago, a housemate's friend, seeing my reaction to a house spider, bought me an illustrated book on insects with several chapters on spiders. If I could start identifying them and realise they weren't dangerous, he figured, it might help. Even the pictures were difficult to look at, but he was right: not because I was identifying the spiders as harmless (I already knew they were) but because through my terror I was applying pure, cooling observation. Interest, intellectual curiosity, is a powerful force.
I'm hesitant to moralise here, even when the "moral" is self-evident. I believe that no-one outside a situation gets to tell someone how they should feel about it at any given point. No-one gets to reassure or well-wish just so they can feel better about someone else's difficult situation. Just as no-one else gets to see me white with pain and mourning my walks and say, "Well, at least you can write about it!" That's for the person in the situation to think. But if one is a writer, or an artist, or writes, or makes art, or has some interesting means of observation and ekphrasis, at least there is that option: to observe, closely, and save it up, to use as art.
P.S. Wheelchairs are amazing. Needing one can suck, but wheelchairs themselves are brilliant. If you're ever struggling with mobility, for whatever reason, don't wait as long as I did. Use the chair! There are wheelchairs just there for the using in museums, art galleries, supermarkets, garden centres, IKEA, all over the place. And no-one minds that you can walk too: if you couldn't, you'd be arriving in your own wheelchair, and those ones would be superfluous. They're for people who can walk too. A clear moral: make art when stuff sucks; use wheelchairs when you need them.
