“As a young adult I had a small number of friends with cystic fibrosis, but then we grew older and they started getting really sick and died. I promised myself that I would never again have friends with CF because It’s just too painful.

Time passed; then I met Ashley

I had stalked Ashley on instagram for a while before I decided to write her. She is a vocal teacher offering singing lessons to people with CF, and I have long nurtured this dream of becoming a decent singer (she’ll tell you that I already am, but I beg to differ). We swiftly became close friends and through her I gained a small community of singers who also have CF, people who are also now my friends and part of my support network.

Earlier this week I showed three of those friends, Ashley, Erin and Linda, this video. Partly because I wanted to show them the part of my life where I’m climbing (at least attempt to) rocks. It’s a way of giving this disease the finger, something that gives me so much joy and they can understand profoundly. But also because I wanted to show them what role they play in my life.

I look at the boulder before me, for something to hold on to, and take my first step up. I feel steady and balance. This particular problem starts out with a pretty high step. The thing about high steps is that they demand a lot of breath, something I don’t have an abundance of. The thigh and butt muscles requires plenty of oxygen to do their thing.

Almost immediately after the first high step there is another highish step. I push up and start feeling how I’m losing control of my breath. Ashley’s taught me the power of practicing breathing cycles (I do them daily) and breath control. And 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 and not the ground in case I fall.

I continue climbing, but paying the price for the high steps earlier my legs start shaking; and the holds on the top 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 can jump, they’re there, prepared to catch me so I don’t roll off the outward sloping pads.

My CF community are filling 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 really tall steps and how slow the recovery is. They understand 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. They understand how those backwards steps often are the most terrifying ones.

They get it all. They understand living with an acute awareness of that life is fleeting, and always finite. I owe them my life.” - Johanna Jaffa Snellman