I’m not going to live forever. That’s my big revelation for the night. But it’s true. And it has taken me a great deal of time to realize this. I’m not.
I think of my age, 48, cystic fibrosis, and past events. Two collapsed lungs and the small scars on my chest from the chest tubes. A skin cancer removed that left a scar like a bullet hole on my chest because the Vest pulled the stitches apart. A blood clot in my neck that will never go away and required a year’s worth of shots in my stomach to prove its permanence. It too has left a mark on my chest, though this one is different from the penetration scars. Blue veins zig zag to create new pathways for blood flow and look like a map of highways across the USA. So my doctor says, the reason they’re there, not what they look like. What I know is that when I take my shirt off there is a story – not all CF scarring is invisible to the human eye.
And there are the hospitalizations. And the episodes of hemoptysis and bouts of C diff. And my irregular heartbeat and mild pulmonary hypertension. And the fact I’ve reached an age that kills healthy people. Cancer, heart attacks, strokes, bad eggs. You name it.
But I need to live 10 more years, to see my daughter graduate high school. That’s my goal. To see her graduate. That was my mother’s goal, to see me graduate high school. She had it easy thanks to my set of defective genes. But now I have my goal and I look out at 10 years and think that is a long time to go and a hard road to travel. How many hospitalizations will there be? 20? 30? What unexpected events will rock me? How many collapsed lungs and how much hemostysis?
How can I even have the nerve to tempt fate and think that I could make it another 10 years with what life and cystic fibrosis have in store for me? I might as well climb Mt. Everest. Which goal has a better chance of happening? Well, obviously, I can’t climb, so I guess that’s an easy one to answer. But just surviving 10 more years is my mountain to climb, my impossible dream. I may not make it past next month with what’s brewing inside my guts right now.
The question I’ve been spending a lot of time thinking about lately is how I am going to spend the remaining seconds, minutes and hours I have left. I won’t presume to think that I have days left. I’ve learned how the karma of this disease works. Pride and hope and ego get crushed fast and hard. If I just string some of these seconds together, perhaps I’ll get a day. If I’m lucky.
Tonight, denial no longer protecting me, I realize I’m standing at 26,000 feet above sea level in what climbers call the death zone. It’s one step at a time now. It will be a victory when I wake up tomorrow morning. That’s how I’m going to look at it from this point forward.