As a young adult I had a small circle of friends with cystic fibrosis but as we grew older they started to get really sick and die. Illness is a funny thing; I guess it either brings you together with other people in the same predicament or it forces you to search with urgency for unlikeness. After losing my friends I refused to recognise any affinity with other people who have CF. I simply didn’t want to surround myself with them, perhaps because in doing so I would be forced to accept that I was like all other CF patients I knew of: ill and with no real future. It’s just too agonising and, quite frankly, destructive.

Time passed.

Then I met Ashley.

I’d followed Ashely on Instagram for a while before I decided to write her. I have long nurtured this dream of becoming a decent singer (she’ll tell you that I already am, but I beg to differ) and she is a vocal teacher offering singing lessons to people with CF through her program sINgSPIRE. We became close friends in less than no time and through her I gained a small community of singers who also have CF. People I am lucky enough to be able to call my friends and who part of my support network.

I showed three of those friends; Ashley, Erin and Linda, this video. A while ago I showed some of those friends this video. Partly because I wanted to show them my rock climbing self; climbing is a way of giving this disease the finger which makes me feel so triumphant, something I know they understand profoundly. But mostly I wanted make it into a story in order to illustrate the role they play in my life.

As I approach the boulder I look at what’s before me, for something to hold on to, and then I get into position to make my first move. I feel steady and balanced – in control of my body. This particular boulder problem starts out with a pretty big step. The thing about high steps is that they claim a lot of breath, something I don’t have an abundance of. The thigh and butt muscles demand a great amount of oxygen to do their thing!

Almost immediately after the first step there is another highish step. I push up and start noticing how I’m losing control of my breath. Ashley has taught me the power of practicing breathing cycles and breath control. I do them daily so I start repeating my breathlessness mantra “in, two, three, out, two three, relax the shoulders and expand the chest, in, two, three…” This is also when my friends who’re spotting me step in, making sure I land safely on the crash pads in case I fall.

I continue to climb but am beginning to pay the price for the knackering steps earlier. My legs start shaking and what’s more, the holds on the top of the boulder are covered with moss. I get scared. Scared of my legs giving out or sliding down the boulder together with the moss. Too afraid to jump, I decide to carefully climb down. My friends guide me, letting me know where to put my feet, which edges are good and can be trusted. Eventually, when I decide I am in a position to jump, they’re there, prepared to catch me so I don’t roll off the outward sloping pads.

My small community of people with cystic fibrosis fills the same function. They are my spotters. Always there to make sure I land safely when I fall and to guide me down when I have to take a step back. But also, and maybe more importantly, they celebrate with me when I top out. They truly understand the struggle of those huge steps and how slow the recovery is. They know the fear of not being able to press on, to have the body give out on you, and having to take a few steps back. These friends also appreciate that those steps back often are the most terrifying ones.

They get it all. It is our disease and so there is a heavy knowing in this circle. They know the specific frustrations of being in a body that has so much extra to contend with. And, they know living with an acute awareness of how life is fleeting and always finite. I owe them my sanity and my life.