I shift through phases where I feel the need to describe my world, because to live in an undescribed world is too lonely. I have spent so much time struggling with this disease, and so of course, it has shaped me. Still, I can’t suss out how I’m supposed to consolidate the complications of this disease into the world around me. The phlegm, bloody coughs, infections, pain and fears don’t fit very neatly into a society where health and productivity is the norm. My body is too quick to breathlessness and too slow to recover from exertion to be able to work more than just a few hours a week.
There is something about CF that feels so inevitable, and at a certain point in life it all becomes about unlearning – realigning reality. I’m tired and out of strength. And I keep losing my grasp despite holding on with all my might. The truth is I’m scared; just like I’m sometimes scared of falling while climbing.
Recently, as I was practicing 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’s safe. I was at the top of the wall with the rope clipped in just a meter or so below my harness. The distance of the fall would not be very dramatic, I knew that. My friends below did everything they could to reassure me to no avail. Eventually though, my hands were so exhausted that I realised I either had to let go voluntarily, climb down to the clip, or I would 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, letting go and being ok.
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