Naked resignation
I need to clean my bedroom. It’s a mess. Dust, clothes on the floor, stuff everywhere. I cleared the floor yesterday, dusted and hoovered, and today I need to clean under the bed. I remove the mattress, pull out the bed as much as there is space to, and begin the work of clearing and cleaning beneath it.
And I quickly faltered.
There’s a wild juxtaposition between my physical strength and my damaged spinal cord. Pulling out a double bed frame across the carpet is easy. Bending to pick something up from the carpet is nigh impossible.
I pull out the bed, I'm strong enough now to lift it fully if needed. But I need to get beneath the bed to clean and bending low, especially crouching, pushes trains of impulses through demyelinated spinal nerves. They’ve adapted, and they do their best with the extra sodium channels they’ve created to keep the messages flowing through. But those sodium channels are working overtime and leeching potassium ions as they do, which makes it impossible to polarise. Imagine your car runs out of petrol, but it has adapted to be able to use rubber for fuel, with the upshot being that your tyres are balding as you drive. Sure you can drive for longer, but you’ll be running on the rims before long. I’m running on the rims, sparks flying out of the sides of my body every time I bend over to hoover another mote of dust.
I bend low one last time. There is so much more to clean and I refuse to stop before the task is done. Somewhere inside I hear a sword being drawn. But there is no more power in my legs and I crash onto the barren rungs of the bedframe.
I start to panic.
Being unable to move parts of yourself elicits a very particular emotional response. The more you panic, the less you can move, and the more vulnerable you feel. Indeed the more vulnerable you are. And so a cycle begins where your body begins to fail, you begin to panic, and one by one additional systems start to tumble into ruin. So I lie there desperately trying to contain my feelings.
I hear that part of myself, sword drawn, call my name: ‘listen to me’, she says. And then simply ‘stop’.
I’m reminded that this thing I’m trying to do is not important. That maybe right now, in the way I’m trying to do it, this task is impossible. There are few experiences more disabling than this realisation. A naked resignation.
I take some moments and just breathe a little. The valves of my respirator, necessary when cleaning while immunosuppressed, click in and out rhythmically with each breath. After several moments I find my resolve. I grab hold of the furniture and heave myself to standing, and I start the slow, sad shuffle back to my desk. I sit. And I start to write.
Caz messages that she will help me and we decide to book a chance to do some of it together.
And gradually I begin to piece together the fragments of myself.
As I reflect upon the total disaster that was my effort to clean my bedroom I’m struck with the realisation that this challenge is not like other challenges I’ve faced. It does not respond to effort.
Getting my doctorate, transitioning, pushing the wheelchair up a mighty hill, were all difficult. But they all responded when I put in the work. I’d be up late at night in the post-graduate room at the University, music playing, drinking coke and eating pasta from the student union, writing my thesis until the sun came up, and I’d get through it. I’d learn how to dress for my changing body, I’d learn to do makeup, I’d train my voice, to look and sound as close to how I saw myself inside as I could, and I’d get through it. I’d look at that beefcake hill ‘the widowmaker’ with envious eyes and I’d train every day to overcome it, and overcome it I would.
But cleaning my bedroom, walking up stairs, bending low to organise the fridge, are all challenges that do not respond to effort in the slightest. In fact, effort that pushes my body and makes it hotter actually makes it less possible to complete the tasks that require those damaged spinal nerves.
When I’m confronted with cleaning the bedroom, a task that requires legs, I cannot face it with characteristic determination. My legs will fail despite every effort, and I’ll hurt my back trying to lift without leg strength, trying to stand upright without core strength, and I’ll injure myself long before I get anywhere near finishing the task.
So what is left? When determination fails, what do we then turn to?
Acceptance.
I must accept that despite all of my efforts, despite Saturday pushing myself in my wheelchair offroad, uphill, thousands of metres to a golf course, I cannot stand to drive a ball. Despite being able to carry my wheelchair in and out of my car easily when I’m in hospital, I cannot walk independently so far as to get a simple blood test. Despite being able to lift a double bed with my bare hands, I cannot clean beneath it.
But I find that really hard. My instinct, even now, when I think about the mess that remains beneath that bed, is to confront it. I’m not built for humility. When I think about tacking the bedroom again I hear that vigilant part of myself slowly draw her sword as she says to me quietly: