You have played many roles in my life. Each one has played a pivotal role in the person that I have become.
10. Thief – You stole my childhood away. That’s the one thing that every person holds sacred. While most kids were dreaming of what they wanted to be in life, I was worried I would never live long enough to have a life. On the bright side, I realized at an early age what was truly important.
The face of a child with no childhood
9. Captor – While most people wake up and are free to do almost anything, I have been forced into a monotonous routine for the last 43 years of taking enzymes, administering therapy and inhaling aerosols. On the positive side, you have taught me how to be regimented and that vacation days are only for corporate America.
8. Difference-Maker – You made me feel alienated. I couldn’t go certain places like summer camp or overnight trips without my parents when I was younger. When I was older, I couldn't have kids like everyone else nor could I just pack a toothbrush and clothes when I traveled and be done with it. I've been wearing nebulizer masks since I first put on a diaper. The positive spin is that you turned me into a leader. When you’re different you have two choices. You can cry about it or make the most of it. The first two decades plus of my life, I did the former. I’m proud to say I now practice the latter.
I prefer the term "unique" to the word "different."
7. Enemy – I’ve hated you from my 8th year on when I learned who you were. On the positive side, it has allowed me to put all of my anger into one thing and to use those emotions to fight harder in the gym, raise money to defeat you and to not sweat the small stuff in life except possibly the continuous demise of my sports teams.
6. Coach – You have been yelling in my ear from day one. On the bright side, I can hear you now. Without you, I would not put such an emphasis in fitness and competing in sports. I also believe your coaching has helped me to see that I love to help others who may be in the same predicament as me while fighting a terminal disease. I've also learned to transfer those skills into my own coaching which is something I really enjoy in kids’ sports especially with my own children.
Making a difference in someone else's life makes a big difference in mine.
5. Excuse/Motivator - From my mom sending notes in gym class to me not doing something because I blamed you, you have become the ultimate excuse. I have now reversed that into you becoming the ultimate motivator. Whenever people or statistics tell me I can't do something because of you, that pushes me to try even harder. I've learned to relish the role of the underdog.
January 2016
November 2016
4. Competitor – I always knew that you didn’t take a day off. Now I look at that bit of information as a positive. I will work just as hard every day. Neither of us has had a vacation day in 43 plus years.
3. Comic relief – For years, just the mention of you scared me. You were the elephant in the room. Now I literally tell jokes about you. If I can laugh at my own chronic disease, I can do anything. Laughter cures most things. I know that now thanks to you.
Laughter truly is the best medicine.
2. Killer – I know that most people grow up having no idea how they will die. I’ve known for several decades but I’m not afraid anymore. In a way, it takes the surprise out of things and I've never liked surprises. To be honest, I kind of think I may kill you first.
1. Realist – You’ve taught me that life isn’t always fair and though I didn’t like learning that lesson, it has taught me some invaluable things. Each of us is dealt different cards but it’s how we use those cards that matters. Anger and sadness are normal emotions but don’t harp on them. Take advantage of celebratory days and just accept the fact that not all days will be full of sunshine and rainbows. Just be grateful every day that you get.
For years...
I wanted to blame you, cystic fibrosis. Now, however; I want to thank you. I wouldn’t be the person I am without you and I’ve come to learn over many years that I really like that guy. By no means does this signify that I like you but what it does mean is that I am at peace with you. It also doesn’t mean that I still don’t want to kick you in the rear end every opportunity I get but I’ve accepted the fact that you’ll get a few punches in too. Essentially I may not win every battle but I do intend to win the war.
I know you don’t hear this often but “Thank you cystic fibrosis.”
Without “you,” there’d be no “me.”
I am who I am because of cystic fibrosis.
Live your dreams and love your life.
Andy
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