I shift through phases where I feel the need to describe my world, because living in an undescribed world is too lonely. I’ve spent so much time grappling with this disease, and naturally, it has shaped me. Yet, I can’t quite suss out how to integrate the complications of it into the world around me. The phlegm, bloody coughs, infections, pain, and fears don’t fit neatly into a society where health and productivity are the norms. My body is too quick to breathlessness and too slow to recover from exertion to manage more than a few hours of work a week.
There’s something about cystic fibrosis that feels so inevitable, and at a certain point, it all becomes about unlearning – realigning reality. I’m tired and out of strength. I keep losing my grasp despite holding on with all my might. The truth is, I’m scared; just as I’m sometimes scared of falling while climbing.
Recently, as I was practising falling while lead climbing. I got so petrified that my hands would not let go of the hold, even though I kept telling myself it was safe. I was at the top of the wall with the rope clipped in just a metre or so below my harness. The distance of the fall wouldn’t be very dramatic – I knew that. My friends below did everything they could to reassure me, to no avail. Eventually my hands were so exhausted that I realised I either had to let go voluntarily, climb down to the clip, or fall off anyway. So, I let go. I’m not quite sure what the moral of the story is, other than it being a story about fear. And perhaps, about letting go and being okay.
Anyway, I keep fighting for it (life, existence, or whatever “it” really is) to become easier instead of learning how to be content despite the pain. What does everyone else do with their pains and fears? I can’t even fathom how to articulate it into words. Or as Leonard Cohen put it, ‘the day wouldn’t write what the night pencilled in’.
The Hills
by Leonard Cohen
I can't make the hills
The system is shot
I'm living on pills
For which I thank God
My page was too white
My ink was too thin
The day wouldn't write
What the night pencilled in