I am always curious when it comes to the questions people ask or don’t ask when they find out about Cystic Fibrosis. Life is all about asking the right questions, right? My good friend once asked me, “What does CF feel like?” Without giving the response much thought, I simply replied the common response; “It feels like breathing through a straw.” That answer doesn’t really do justice to the question. And, this question has resonated with me for a few years while I have articulated the answer.

When I was young I imagined an object being stuck in my chest. This was what CF felt like to me. I felt like I had some sort of musical instrument stuck in my chest. Some days I would hold my chest and feel what was stuck inside me. Some days it felt more like a religious cross. Other days I would imagine it as a brick.  Before I really understood the disease, I always thought one day the piano keyboard, brick, or cross would just be removed and I’d be fine. When reality sunk in and I realized I don’t have anything except mucus stuck in my lungs, the disease became real, but I continued to imagine…

So, what does cystic fibrosis feel like? Well, I can tell you that I wake up in the morning and feel my lungs. Do you? I don’t feel the rest of my body or give it much acknowledgment. I do feel my chest. I feel the air flow, or lack there of. I don’t take notice of my feet, legs, and head. I feel my chest though.

And then, there’s that morning cough. It feels like what I presume an owl feels like when dusk finally hits and it can come out into the wild world and see clearly. Or what a tired babysitter feels like when the parents finally return.

I like to imagine a white light in my chest. I see it breaking up the mucus and setting the musical instrument in my lungs free to help lessen the severity of disease. 

I also dress the disease up in a disguise sometimes, like an octopus. This allows me to not be as afraid of what is going on during difficult exacerbations.  Yes, CF feels like I have an octopus in my chest.

Did I answer the question? CF feels like a Taiko Drum, when it is played, the sound vibrates and hits every corner of the drum and extends out to the ears. When I hit my chest like a drum, I can hear the sounds of mucus being loosened up. It’s an earthy, wheezy, grounded sound and feeling. Cute, right?

I can feel CF. I know it’s in there, in my chest. It changes like the seasons. On the days that symptoms are less, I take the freedom and embrace it. I love these days. It’s like a fall day when the leaves are drifting off of the trees and the tress feel the wind and air on the tips of their branches.

There are other days, similar to a cold winter day, where CF is frozen inside me and requires to be defrosted with chicken soup.

CF feels like luggage on a long road trip. You so desperately want to leave it on the side of the road, but for some reason you can’t detach from it.

It feels like a secret you put in a time capsule. It’s buried deep underground and can’t come above ground because its location has been lost.

It can make me feel like I’ve won a marathon every single day, because lets face it, I have.

CF feels special, in a unique, distinguished way.

It’s hard to explain what CF feels like when it’s the only thing I have ever known.  Until the day when I know what CF doesn’t feel like, I can only answer the question with the response that cystic fibrosis feels normal.  So I leave you with the question, what does not having cystic fibrosis feel like?