What’s the point of doing my best when I’ll probably die from this disease anyway?
What's the point of spending every moment of my life dealing with an incurable beast?
What's the point of having dreams when they seem so unattainable?
Some people would say “Well that’s a defeatist attitude!” Until you have a terminal disease like cystic fibrosis, it’s difficult to judge a person for that opinion. These were the questions that filled my head throughout my early college days.
I have a doctor's appointment this Thursday and I don't know how it is going to do. I work my tail off each day to fend off the effects of cystic fibrosis but honestly during some of the more exhausting days of working out combined with the trials of having CF, that question still pops into my head a time or two.
It's taken me a long time but I do understand now "What’s the point?”.
The point is that there are no dress rehearsals in life. You’re dealt a hand and those are the cards you have to work with. You could give up and die. That’s your prerogative but you’re not getting a second chance.
I look at cystic fibrosis as an opportunity to do something great. I look at it as an opportunity to build a legacy. I look at it as a way to create hope for others.
My parents were told I wouldn’t see my teens. When I was 8 years old, I read that I wouldn’t see 25. Most of my life I’ve been chasing the median life expectancy. Now it’s chasing me. I prefer to live my life like anyone else. I have dreams. Heck, beating CF is a dream in itself. I’m not adjusting any of these fantasies because of cystic fibrosis. Yes, the path to achieve them may take longer and that path may involve some obstacles and U-turns but it’s not going to change my motivation to get there. My wife and I had to go through IVF to have children, but fortunately it worked out and we have two beautiful kids. Not the ideal way to have kids but it worked. Dream accomplished. I wanted to run the Peachtree Road Race. When I train, there are times that I have to stop and spit and catch my breath. I've run it 18 consecutive years. Dream accomplished. I wanted to go to college. I had to understand compliance with my meds, deal with my depression and learn from emotional and academic failure. I graduated college in 5 years. Dream accomplished. Not the ideal route for any of these things but the end result was all that mattered...although each journey taught me a lot.
When I was a kid, I was scrawny and sickly - the ideal picture of cystic fibrosis.
As I got older, I realized that the ideal picture could change.
“What’s the point?” The point is anyone can die but not everyone can live. I want to live. I have a dream that my tombstone one days says "Andy died from natural causes." BUT even if I do die from cystic fibrosis, I hope that no one says I lost the battle to cystic fibrosis because I will fight everyday to ensure that CF never beat me. By the way, I don't think anyone has ever truly lost the battle to cystic fibrosis. Each of us fights at some point at varying degrees.
We were always taught that life isn't a fairy tale but with hard work, maybe it can be.
"What's the point?"
We each have a terminal disease. It's called life. Whether I die at 45 or 95, I'm going out on my terms not the terms of the disease that has been affecting my body for more than four decades. Cystic fibrosis has given me amazing opportunities. I've gotten to run with the Olympic Torch and tell my story to tens of thousands of people. I've gotten an opportunity to help people who were void of hope. I remember the line from Spiderman. "This is my gift, my curse." That in one sentence is cystic fibrosis to me. Yes, CF is a curse because I deal with pain, hours of therapy and taking copious amounts of meds every day. It's a gift too though. It helps me to appreciate every single day which a majority of people cannot do. It gives me opportunities that other people my age will never have. It also made me focus on some things that I otherwise would not have been interested in. I got into working out because I knew it might be the only solution to save my life. Now I'm a workout fanatic. I don't think I would have had my heart set on helping a charity if I didn't deal with the struggle of fighting the disease that the charity supports. I don't think I would have developed my sense of humor if it wasn't the best defense mechanism in my arsenol. One of the reasons I was introduced to my wife was because of my story...and for that reason alone, I cannot regret having cystic fibrosis.
"What's the point?"
The point is that I'd rather spend my life living than concern myself every moment with dying. And who knows? We might just see a cure in our lifetime...and I definitely want to be in the best possible situation to take advantage of it. I just refuse to give up on that possibility.
That is the point.
Live your dreams and love your life!
Andy
