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 Ashley 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 rather 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 are part of my support network.
A while ago, I showed some of my friends a video. Partly because I wanted them to see my rock climbing self; climbing is a way of giving this disease the finger – it makes me feel triumphant, something they profoundly understand. But mostly, I wanted to illustrate the role they play in my life.
As I approach the boulder, I scan for something to hold on to, then position myself for the first move. I feel steady and balanced – in control of my body. This particular boulder problem begins with a pretty big step. The thing about high steps is they claim a lot of breath – something I don’t have in abundance. Thigh and buttock muscles demand a great deal of oxygen!
Almost immediately after the first step, there’s another highish one. I push up, feeling my breath slipping away. Ashley taught me the power of practicing breathing cycles and breath control. I do them daily. I start repeating my breathlessness mantra: ‘in, two, three, out, two three, relax the shoulders and expand the chest, in, two, three …’ At this moment, my friends step in to spot me, ensuring I land safely on the crash pads if I fall.
I continue to climb but am beginning to pay the price for the knackering steps earlier. My legs start to shake, and the holds at the top are covered in moss. Fear grips me – I’m scared my legs might give out or that I’ll slide down with the moss. Too afraid to jump, I decide to carefully climb down. My friends guide me, pointing out where to place my feet and which edges are reliable. When I finally decide to jump, they are there, ready to catch me, ensuring I don’t roll off the sloping pads.
My community of friends with cystic fibrosis fills the same role. They are my spotters – always there to ensure I land safely and to guide me when I need to take step back. But also, and perhaps more importantly, they celebrate with me when I top out. They truly understand the struggle of those immense steps and how slow the recovery is. They know the fear of not being able to press on, of having the body give out, and needing to retreat. These friends also appreciate that the steps back are often the most terrifying.
They get it all. It is our disease, and there is a profound understanding within this circle. They know the frustrations of being in a body with so much extra to contend with. And they live with an acute awareness of how life is fleeting and always finite. I owe them my sanity and my life.