Watch CBS News

Singing at the Top of My Crumbling Lungs: 25 with Cystic Fibrosis

By Rachel Whidden

(CBS) — Sitting in doctors' waiting room chairs is scary to me. I don't know what my labs will read or what kind of numbers will come up with my tests. I don't know how badly my lungs and body are going to be failing me this time around, despite how I feel.

The seats are cold and hard and the stares from other patients remind me that I am too young to be here. I'm too young to have this oxygen across my face supplying air that my lungs can't give to me.

I close my eyes. In my mind, I'm standing on a dock's edge, at a cabin my sister rented for us in 2013. I'm anxious to go kayaking the next morning through the magnificent sea caves of Lake Superior.

I don't have an oxygen tank. I don't have a feeding tube. I am standing alone listening to my family up the hill, starting a fire to relax before the big day. The insects play a song that lulls me off into another place. One where there is no sickness and I'm just a girl on an adventure.

This turns into music. I'm now at a concert standing on the lawn with a beer in my hand next to my best friend. Fireworks are exploding behind us as the band fires up their most popular song.

I sing at the top of my slowly crumbling lungs, getting out every sound I can even though it's nearly impossible. I smile because I'm alive enough to be there. I smile because my life has given me a small moment of clarity and of pure happiness.

That song is now on the radio as I drive through hilly Tennessee, the sun setting over the Smokey Mountains. I'd spent the day exploring creeks and old mills, sitting under waterfalls and taking in a beauty you just don't see anywhere else. My mom is cooking burgers in our cabin while I rest on the wraparound porch knowing that moments like this are far and few between.

My hands are cold but slowly heating up thanks to my boyfriend at the time, Jake, who has wrapped his hands around mine to stop the shaking and sooth the anxiety flowing through my body.

This man has never missed a procedure, appointment, or surgery when I needed him. I'm grateful for the time he's spent on his day off to be here. I again close eyes and focus on the love coming from him and the genuine support and understanding of what I'm about to go through.

My reverie is broken. I'm back at my seemingly simple doctor's appointment. Everyone goes to the doctor and has tests done and they all dread it, like the dentist. It's a necessary evil. But when it comes to lung transplant it can be tricky.

My lungs have been battling me lately. They are failing and they don't seem to be doing it slowly. The commitment to a new life with new problems is a big one. The pills and care for a set of transplanted lungs are tedious.

I wonder at times if I can handle this responsibility. I have a tendency to be impulsive. I get ideas and need to act on them. I've been going stir crazy without taking any trips or outings with my friends.

My name is called and I head back. Hands still shaking but held tight. Jake, my ex, is there with me. He tells me he's so proud of me and that I'm a strong woman. I don't tell him I'm not so sure lately.

To decline transplant based on fear is admittedly a bad reason, but one that's been in the back of my mind for a while now. The alternative isn't much better, but I'm tired.

I'm tired of fighting this battle every day. My white flag gets higher and higher with every setback. 25 is too young. 25 is for parties. 25 is for meeting new people and finding your career and for networking and making a successful life.

25 is not for a multiple appointments a week with all different doctors. It's not for hours of treatments. It's not for pills to counteract the side effects of the pills that should be healing me.

I'm know I'm in a rut lately. It's as if I have no shovel and am desperately trying to crawl out. The hands reaching in to pull me out, though, are disappearing slowly.

I need to find a way back to my stronger self. I need to find a way to beat my sickness.

I sit down in the room, hands still gripped tight. I close my eyes. I'm still here.

I'm not traveling through New York or swimming in the clear blue oceans of Florida. I'm in a plain room with a man I love by my side. I'm ready to make some big decisions about my future. This is where I am.

View CBS News In
CBS News App Open
Chrome Safari Continue
Be the first to know
Get browser notifications for breaking news, live events, and exclusive reporting.