precious little injuries
in which i repair my boat and the goblins send me messages
My recovery continues apace. I took The Long Tube of Freckled Chaos for a bike ride. I did this because I thought it would be distracting having to manage a crazed dog on the end of a lead while peddling, distracting in a way that prevented me from meditating too much on whether I can ever really trust my legs again after what I’ve been through. I am pleased to say that it worked; the experience was just as chaotic as anticipated, and before I knew it I was flying along the road thinking of nothing but bike and dog, peddling as hard as I could while TLTOFC ran beside me at a leisurely 70% of full capacity. To exercise this dog fully I think I would need a motorbike.
Each passing day brings me further into my recovery and brings back more of my former vigour. This simultaneously uses up another day of winter, another day of low UV, another day of safety. The more well I get, the closer I get to probably running out of wellness. It’s a strange position to be in. It feels like I have sailed a great distance in rough seas and landed on this island, and here I am now resting on the beach, catching my breath and patching my battered boat after the intense voyage, relieved to have made it this far. But I know I can’t stay here forever, and ahead of me the fog has closed in, so I can’t even see how far it is to the shore or what the conditions are like. It could be something I can paddle through or it could be waves the size of houses and treacherous shoals hiding beneath. I won’t know until I set out again.
I saw my rheumatologist and he asked how I was. I said, “I walked twelve miles this weekend,” and he looked at me as if I had announced I had flown into his office on the back of an eagle. Even I find the enormous variation in my level of ability to be kind of mind-boggling – I seem to inhabit only the extreme ends of the physical activity spectrum. This year recovery has been slow by my own standards, and it has taken about six weeks of steady improvement to go from wheelchair to bicycle. After multiple muscle-involving flares both experiences of the world feel familiar, so I live as two people who take turns occupying the same body: Celandine-the-flaring and Celandine-the-well.
Systemic disease is weird because it affects every part of you, such that Celandine-the-flaring and Celandine-the-well have almost nothing in common. We both make art but the art is different. Celandine-the-flaring is very limited in their use of materials – nothing involving much setup or cleanup – and can only make things in short sittings, largely lying down. Celandine-the-well can be more experimental and more expansive. They can follow a project across multiple days but often don’t, getting distracted instead by the large number of other things that can intrude on your attention when you have the capacity. Celandine-the-flaring has the better attention span, I think, in spite of the brain inflammation. I have tried, as I return at least temporarily to the land of wellness, to keep some fragment of the deep focus that illness and stillness can create. People often tout “saying yes to things” as a way to live more expansively but at the moment at least I seem to be finding that saying no to most things and yes to only one or two brings a new sort of illumination to my experience of the world.
Nettle bought me a horse-bow (Scythian style, which makes one feel like someone on the side of an ancient clay pot) and a few times a week we go out in our wild paddock and shoot arrows at a straw target. I don’t have any protective gear so the bowstring often skins my thumb, and so do the arrows sometimes when they fly by. I find these little injuries – stinging strips of raw skin, tiny beads of blood – to be very precious, and I look at them a lot. It feels wonderful to have damage on my body that was inflicted by the outside world instead of myself.
As I move out of physical illness I seem to have expanded capacity for emotion – either that or I am finally far enough from the more intense parts of my most recent flare to have some feelings about them, instead of just sailing on and on in survival mode. I have cut up some of my paintings into the shape of leaves and I like to write messages on them, mostly to Nettle and Dandelion. I made myself a mailbox for my bedroom door out of an old cardboard box and labelled it “goblin mail”, and I think of myself now as the entire goblin mail service, so when I deliver leaf-post to the rest of my household or occasional visitors I consider these to be from the goblins (which I guess means I refer to myself as “the goblins”, which actually feels rather appropriate). Anyway, sometimes the goblins send me mail via my own system. Yesterday I wrote “I am afraid” on one of my painted leaves and put it in my own mailbox. It was not exactly comforting but calming in some way to notify myself of this fact.
I asked my rheumatologist what we will do if I flare again in the spring. He said, “I don’t want to talk about that right now. We will cross that bridge when we get to it.” I have been trying to do the same, but it’s hard. As I write this all of my knuckles are lit up red, like a line of warning buoys on the horizon.
Thank you as usual for reading and wishing you an Odde week,
i want to see the mushroom goblin box!