I’ve been thinking a lot about patience, lately, and what true patience means, and what this means for how I go about the business of living right now.
The reason for this is that I’m more limited in function than I’ve ever been. At the end of last year, I had to give up showering (and bathing), and using the stairs. Conversations have also become difficult. I can manage a few sentences, but it’s tiring, especially listening and trying to process what is being said to me; most of my conversation with my mum is by text.
But, slowly, very slowly, I’m trying to build my capacity back up again. Progress is measured in months, not days or weeks – perhaps every month or so, I manage to add a minute on to the amount of time for which I can sit upright. I recently hit 22 minutes; a minor triumph.
So, patience is key. It’s a hard and painful life. My back hurts if I lie down too much, but I need to be lying down almost all the time. There’s no easy solution to this. I can’t do physio to strengthen it up. I can’t not lie down. Plus there are the usual, weird ME symptoms – a tree of fire spreading across my back one day, burning skin the next. Getting through each day is hard; but get through them I do, and they slip away, taking me closer to recovery.
In the meantime, I have to practice patience. But what does patience really mean? I’ve been thinking about Sisyphus: the Greek king who crossed Zeus and was condemned to pushing the same boulder up the same hill every day, only to have it roll back down the hill so that he’d have to start over the next day. (In some versions, when it rolls down the hill, the boulder hits him in the face; if you can think of a better metaphor for ME, let me know.)
My question is this. It seems to me that we have a choice, Sisyphus and I, in how we approach this. We could maintain the same attitude from day one: this is awful, I hate it, I can’t wait for it to be over. Needless to say, this is not clever; it makes things worse. Even though it is, in many ways, awful, it doesn’t help if we make it so that the awfulness is the only thing we see.
We could try to make it as fun as possible. Maybe I can turn my boulder into a glitter ball, and play funky music in my head, and disco my way to the top each day. But this feels wrong as well. The experience is the experience. You can’t blank it out, or paper over it. I feel that pretending there is no difficulty would be as sure a route to depression as focusing solely on the difficulty.
So here’s where I’ve got to: in some way, I need to find a way to appreciate the experience for what it is. I don’t mean to say that pain can be enjoyable – it isn’t. But I can learn to love what it’s doing for me. The small moments of relief that come over me like I’m sinking down into a fresh, cold pool. The time I’ve had to focus on myself, my inner self, to really come to know me, what I value, what I want, who I love. The strange, deep connections I’ve made with people, now that I can’t speak to them or see them in the way that I used to. The ability to let go and accept whatever comes. And the knowledge of my own endurance, tested and tempered over time, which paradoxically has made me softer.
Still, it’s hard. And although I understand that the hardness is the point, I haven’t yet reached a state of non-resistance. That is: even though I can appreciate what it’s doing for me, I would like it to be over. But I think my powers of acceptance are increasing; I think I’m nearly there.
So for people who doubt that being Sisyphus can be worthwhile, for fellow ME sufferers and for anyone else who’s pushing that same boulder up that same hill and can’t see an end to it, these are my words. You may hate the landscape you’re in, but maybe you can learn to appreciate it, even though it’s pretty barren. Maybe you can learn to enjoy parts of it, even though pleasure is hard to come by. Maybe you can find some warmth and belonging, even though the air is cold and there’s no one around. Maybe you can find the appreciation and the pleasure and the warmth within yourself.
Maybe one night, you pass your hands across the rough surface of the boulder. You get to know every crack and every sharp edge. You find an indentation, a smooth curve, just the right size upon which to rest your cheek. And you realise: the night is cold, but the rock is warm.
Maybe you think about what being a rock really means. You become aware of the strength and the fortitude that’s being ground into your body and your heart, day after day, as you toil up the hill, together.
You fall asleep with your cheek cradled by your burden.