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By English Clemmons

Being born with Cystic Fibrosis means always having the thought of a double-lung transplant in the back of your mind. The idea is to push it back as far as possible. The idea is to do everything you can to not let I happen. The idea is always there, lingering in the words ‘Cystic Fibrosis’. That means, when it does happen, you feel defeated. For 19 years that idea haunted me… and motivated me. I tried every hour of every day (not always happily) to push my double-lung transplant back as far as possible. Then March 2009 came. Hospitalized on the 5th floor, at Children’s University of North Carolina Hospitals, Chapel Hill, sitting up tall with a smile on my face and an oxygen cannula in my nose, I was evaluated for a double-lung transplant. I was listed at spot number three for about three months. I stopped going to school. I stopped hanging out with my friends. I stopped living my life. I tried to teach myself to paint, and quickly realized I wasn’t an artist. I watched a lot of TV and basically lived through the characters that were in the shows I watched. Three months is nothing as far as time to wait for lungs in the transplant world—I was incredibly lucky. However, you never know how long you are going to wait until the day comes, so every day feels longer than the last.

I have a 1909 Olivetti Typewriter that was given to me by a dear friend. When I get frustrated about life, about the hand I’ve been dealt, the only thing soothing to me is the sound of those keys when I press down on them. Those keys were even loud enough to drown out the consistent humming of my oxygen compressor. I love to type on that typewriter. Even when I couldn’t make my legs take me from my car to my apartment, I could make my finders type whatever was on my mind. I wrote the first six drafts of my donor letter on my typrewriter. If ever there was an “out of the box” security blanket, that typewriter is it—my security blanket. Some people like to eat when they feel out of control, some like to run, some like to sleep. I like to type.

My birthday is May 14th. Last year, on May 14th, 2009, I typed a lot—random poetry, lists, stories…really anything that could be put into words. I know I wouldn’t have typed as much if I had known that exactly two weeks later I would be wheeled into the operating room for a 7 ½ hour surgery, getting new lungs put inside me. It was the best birthday present I have ever gotten (my boyfriend has some big shoes to fill as far as gifts go). 7.5 hours, four pints of blood, and two lungs later, I was awake, attached to more tubes than I can imagine, and writing wearily on a white board trying to tell the people around me what it’s like to breathe.

This is a frequently asked question when you’re a lung transplant recipient, “What’s it like to breathe?” After trying many different approaches, I have finally found the best way to answer this question. The feeling is like when you dive down deep in the water holding your breath, and then you attempt to shoot back up to the surface, making it just in time, and you inhale so vigorously and deeply that you can feel the air hit the bottom of your lungs; it’s on the of the most invigorating feelings in the world.

Lungs are pinkish-white, firm, like other internal organs, but not something most people look at and think “awe-inspiring.” I do, and so do the people that love me. Sometimes it is hard to be the only one that observes the beauty in situations. It’s not something you can ever explain to someone who hasn’t climbed stairs with bad lungs. I have to remember that I see things a certain way, and that I have enriched vision because of it.

I am in college now, almost a junior. I am majoring in English and Economics. I am on the Model United Nations Team; taking dance classes, rock climbing, and doing all the things I never though I would be able to do. I can sing along to the radio while I’m driving in the care now (one of my new favorite things to do). It’s been almost two years now, and I have been so lucky in every endeavor I have put my mind to.
I love my new lungs; I even have a t-shirt that says so. Not only do I have a second chance at life )i am at a loss of words to describe that feeling), but I also feel like I am part of a special, selective club. Like after 19 years of being inducted, I finally have my letterman jacket. This club is full of stress, hurdles, pain, emotions, guilt, love, support, kindness, meaning, inspiration, and one experience that encompasses all of that. Would I ever choose to be part of this club? No. Would I ever give it up now? Not a chance.

My dream is to show the rest of the world how amazing this club is. These people, the ones I am lucky to call my peers, would inspire the coldest of hearts. This book is an amazing stride for us as individuals, but an even more amazing bound for us as a group. Our wisdom and experience came at a price, but I know I am better for it.

English Clemmons, 20
Cary, North Carolina

Cystic Fibrosis
Double Lung Transplant, May 27, 2009
University of North Carolina Hospitals, Chapel Hill, North Carolina