Growing up I never saw birthdays as anything more than an excuse to eat cake, see friends and be a pain in the butt to my parents. I didn’t see them as any sort of tremendous accomplishment then because I didn’t realize the journey that it took to get there nor was I aware of the journey that was still to come. That was a credit to my parents who tried to make my life not seem so different from every other child my age.
I was born 47 years ago today. My parents found out I had cystic fibrosis (CF) because I had meconium ileus which meant a blockage in my intestines. I was soon taken away to have surgery to remove the blockage and so began my cystic fibrosis journey. I do not think my diagnosis would have been so clear that early in my life if my sister Wendy had not lost her life to the same disease more than two years earlier. Knowing that early medical attention can add years to a person’s life with cystic fibrosis, I will always feel a special bond with my sister.
My main CF symptoms growing up were a wicked cough, skinny arms and legs due to malnutrition and a problematic self-esteem which only elevated when I read about a short life expectancy for those with cystic fibrosis when I was just seven years old. I saw myself as weak and different despite my parents’ best attempts to prove otherwise. That feeling continued even as I reached college. I did not realize that not only was I carrying the load of having a life-threatening disease but I also had two more heavy “suitcases” called depression and anxiety.
Over the years, I have learned how to fight all three. I’d like to tell you that cystic fibrosis was the toughest to conquer because that would seem to make sense being that it’s a chronic disease but it’s depression and anxiety that have been the two most difficult to fight.
I have learned over time to look in the mirror and not see an ugly, pale kid whose life expectancy was a finite number. I have learned to see a determined CF warrior whose life expectancy is unknown so he better appreciate every moment of every day.
My daily medical accomplishments don’t seem like a big deal as I check them off every day but in totality they give me a sense of pride. Every 365 days I do approximately 35,000 minutes of chest therapy (more than 1.5 million minutes in my lifetime), take 15,000 pills (more than 700,000 in my lifetime) and 730 sinus treatments (nearly 35,000 in my lifetime).
This year I added the goal of working out with weights and running at least one mile every day for 365 days. It was a goal that I initially thought of as a fun challenge just for me but that soon changed after I started the life-changing drug Trifkafta.
The challenge quickly turned into a thank you to those who had worked so hard to research the drug, those who volunteered their time to fundraise and those who donated in order to secure its arrival.
The thank you slowly turned into a statement of resiliency after we went into quarantine in mid-March. I wanted to show people especially those with cystic fibrosis that they could accomplish all their goals despite being labeled “medically fragile” and being asked to shelter in place for nearly six months.
As I celebrate my 47th birthday, I no longer see this occasion as an excuse to eat cake, hang out with friends and be a pain to my parents. I see it as a time to hope for better days for everyone I love.
Today, I have three wishes. My first wish is for those who are not celebrating their birthdays to still celebrate their lives each and every day.
My second wish is for those who are locked in a hospital for various reasons without an advocate due to the pandemic to know that they are loved and missed and that they must continue to have hope that they will defeat whatever is ailing them.
My final wish is directed to my wife Andrea, my children Avery and Ethan, my mom, my dad, my sister Emily and the rest of my amazing support system both past and present. I want all of you to know that while I am not always good at voicing my emotions that you play a huge role in my life, I love you dearly and I wouldn’t want anyone else to share in this 47-year experience with me.
Thank you for all of the birthday wishes. Quarantine or no quarantine, I feel blessed.
Live your dreams and love your life.
Andy
We met working together at Diversitech. I didn’t know you had CF at that time. What drew me to you and still does is your amazing attitude and you are funny, you make me laugh. I have read your story and I know you have been through much but have you have a wonderful support system that loves you unconditionally. Since working in at a school system, I have made friends with people who have CF or a loved one with CF so now they are following cfwarriorprojects. If I didn’t know you, how could I tell others about CF Warriors? Oh, I have a copy of the CF WARRIOR PROJECT on my desk. It is a great read for an employee to pickup and learn about a real life story on someone while I (who is older and slower now 🤷♀️and I never saw it coming) help employees. See Andy, you are still assisting me.
Happy 47th Birthday to You. You will have many more!!!
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