3 Steps Back

People constantly ask me what it’s like living with Cystic Fibrosis, or what it’s like to breathe with CF and those questions always puzzled me. I always stop and think about it and try to find the answers that I know they’re looking for.  When people ask me what life with Cystic Fibrosis is like I know they’re looking to hear the worst things, no one asks a question like that with the intentions of getting the highlights of my life.  After years of being asked and being curious myself I think I finally have a decent explanation.

One thing I’ve learned in the past few years is that as time moves on I seem to slow down.  It can be so easy to overlook CF from an outside perspective. There isn’t much that shows visibly for people to see, so it can be forgotten.  It happens quite often that I am left to follow because I can’t keep the same pace as everyone else. I fall behind a lot. For a long time I tried walking faster, but that only made things worse because then I would have to stop and catch my breath. I got into a the routine of just  falling behind, sometimes my friends would stop and wait for me to catch up, more often times they wouldn’t seem to notice my absence. It is fairly upsetting to think that you’re not worth the slower pace to others, that wherever it is we’re going is so much more important than the time we’ve taken to get there.  It’s a very isolating experience to see the value of your friendship reflected through people in this way, realizing that they may not even notice when you’re not there or they don’t even look back to see.

That is what it’s like living with Cystic Fibrosis, it’s like living three steps back. I spent a long time trying to keep up with other people, but that never really works.  I’ve learned to find comfort in my own pace; sometimes walking a little slower just means you get to enjoy the view a little longer. You really learn to let your senses override your thoughts and you get to notice and enjoy everything.  I know people say that life is more about the journey then the destination, but I think it’s more like a maze. You don’t know where you’ll end up until you reach the end.