I wasn't diagnosed with cystic fibrosis until I was 21 years old, but it moved in like a flash flood. Before I knew it, I had spent more than 200 days in the hospital, experienced over 20 bouts of pancreatitis, and lost about 40 pounds. At the time, there were a lot of unanswered questions -- mainly, what the heck was going on and how do we stop it? Before my 22nd birthday, I had an experimental pancreas transplant surgery. Needless to say, many moments in my life have been dictated by CF.
In 2000, I played in a charity golf event called 100 Holes to Cure CF (well, I played 56 holes that day). It was the middle of September and there was a light drizzle and some major wind. I remember standing on the 18th tee at Fairlawn Country Club at the end of my first round with a strong wind blowing in my face as I thought, “Okay, just try to get this one past the red tees.”
I finished the hole and walked up to the clubhouse where my mom and dad were waiting for me with much needed dry socks. As I put them on, a guy with a beard made his way toward me and introduced himself as Leo Jacob. Leo played about 18 holes with us that day. Leo had received a double-lung transplant a couple months prior, so just like anyone else who had a new pair of lungs -- and in true Leo fashion -- he hit the golf course, and to raise funds for CF to boot.
In 2001, I played in the same event. Instead, I completed 61 holes with a good friend, Robert Kilo. He and I were just about the only ones there. We looked at each other and said, “Let's see where we can take this.” Our new Passion Fundraising event, the CF Open, started the following year with a 54-hole, one-day golf tournament in 2002. We had a couple of simple rules: Play your own ball, push yourself to new limits, and play every shot.
Leo passed away in May of 2004 and the event was renamed the “Leo J. Jacob Classic” in his honor.
We had a saying for Leo -- it's “go the distance.” You have to finish what you start, and in golf, that means you finish every hole. You know those darn two-footers that you want to just pick up and take (called a “gimme” -- that's good, right)? There are no gimmes today and no gimmes with CF.
Although our event grew over the years, it always came down to one question: If Leo could play 100 holes today, would he? So, I played to honor Leo, my friend Bruce Baskin, and others in the CF community who fought battles with CF.
The thing about CF is that it never really goes away. It's a lingering, daily battle that you don't want to fight and yet you must fight it, every day. I've always attempted to choose a positive outlook when it comes to my CF and focus not on what it has taken away, but what it has given me. And gosh … look at what it has given me.
The moments of our lives are fleeting. We are constantly chasing the moment but always wanting more. How many moments did you have today? Which ones can you hold onto and which ones can you share?
Time moves fast. I've learned that you need to grab as many moments as you can along the way.
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