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Cystic fibrosis doesn't have to define you

By Gunnar Esiason, Special to CNN
updated 11:03 AM EDT, Mon August 18, 2014
STORY HIGHLIGHTS
  • An estimated 70,000 people worldwide have cystic fibrosis
  • Disease causes mucus to clog the lungs, making it very difficult to breathe
  • Gunnar Esiason was diagnosed with CF when he was 2
  • Now 23, he says the disease has taught him to be resilient

Editor's note: Gunnar Esiason, son of retired Super Bowl quarterback Boomer Esiason, has cystic fibrosis. His dad founded the Boomer Esiason Foundation to fight and find a cure for the life-threatening lung and digestive disease. In over two decades, the charity has raised more than $100 million. Now a Boston College graduate, Gunnar works as a CF advocate and program director at the non-profit that was founded to save his life and the lives of other CF patients. The views expressed are solely those of the author.

(CNN) -- Breathe in.

Breathe out.

Simple, right? The first thing anyone does in this world is take a breath of air -- it should be effortless. For me, and nearly 70,000 people across the world like me, it's not so easy. I have cystic fibrosis (CF) and I have never been able to take a full breath of air.

I was dealt a certain hand of cards at birth and I am making the very best of it. It's not anyone's fault I have CF. It isn't a curse. It isn't bad luck. It just happened
--Gunnar Esiason, cystic fibrosis patient

Every day for 23 years, it has been a struggle to breathe. I often get asked what CF is, or what it is like to live with CF. There is no one true answer. The best I can come up with is, imagine living every single day with something like bronchitis, or, a little more simply put, imagine having to breathe through a straw all day, every day.

The mucus that fills my lungs and traps some of the most deadly bacteria imaginable as a result of my genetic defect has always been inside me. So, how do I live with it? I never feel bad for myself. When it comes to living with a chronic illness, self-pity, in my opinion, is the root cause of failure.

I was dealt a certain hand of cards at birth and I am making the very best of it. It's not anyone's fault I have CF. It isn't a curse. It isn't bad luck. It just happened.

I have every reason in the world to stay in bed all day and feel sorry for myself, but I don't. I get up and carry out my day like most people. I graduated college in four years, have a job and take care of all of my responsibilities. I don't hold anything back.

Between all the inhaled treatments, mucus clearing therapies and the 80 pills or so that I ingest every day, the amount of time I spend taking care of myself is the equivalent of a full time job ... and that's only when I am healthy.

The physical treatments themselves may only take about two to three hours total, but every single decision I make throughout the day has some impact on my health, one way or another. Am I going out with my friends on a Friday night? Is it OK to skip a treatment because I am too tired? Can I go away for the weekend, or am I starting to feel sick? Questions like these constantly go through my head.

As far as I am concerned, this is all just a part of my life. I don't know any other way.

Gunnar Esiason with his sister Sydney at a Boston College football game tailgate.
Gunnar Esiason with his sister Sydney at a Boston College football game tailgate.

When it comes down to it, I don't have any complaints; I think I live a great life. I have the best friends I could ever ask for. I have an amazing sister. I had the best four years of my life at Boston College. I am able to work a few jobs and I was an athlete growing up. (I might still consider myself an athlete, but the jury is still out on that decision!)

There is a difference between being alive, and truly living. In 70 years, when I am 93 years old, I want to be able to look back on my life and know that I have an enormous collection of unforgettable experiences. I think the experiences and memories we create for ourselves are what define our personalities. I want people to say, "Wow. That guy Gunnar Esiason has lived a great life."

I realize I am still pretty young, but I like to think that I have a pretty good understanding about the value of life and how fragile it can be. I could be having the greatest day of my life one day, but the next I could be hunched over coughing up blood. It is just the reality of the disease I live with. Every day, good or bad, has shaped who I am.

Gunnar with his dad Boomer and mom Cheryl at a recent Boomer Esiason Foundation event.
Gunnar with his dad Boomer and mom Cheryl at a recent Boomer Esiason Foundation event.

The bottom line, though, is that cystic fibrosis has taught me how to be resilient. I don't take no for an answer and I know I can be whatever I want to be. I was sort of born into a unique situation. Because my dad's a national figure and my parents' were willing to take on CF in a public way, I have been given the chance to make a difference.

Some may call me the poster boy for cystic fibrosis, but I don't think anyone should have that title. We're all in this together. Every family that has to carry the CF burden is in this fight. All I want to do is give CF patients a voice, so that one day we aren't dealing with the pain that comes along with the disease. One day, it will be behind us.

Breathe in.

Breathe out.

Earn the air.

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