When your life involves Cystic Fibrosis, it also involves death. Unless a CFer dies in another premature way, they will die because of their CF, until a cure is found. And, there's no way to know when.
CF is an unforgiving disease that takes no prisoners. Nobody chooses to be a CFer, and there is no easy road for a CFer, even the most healthy. Death is a harsh reality, and those who choose to ignore it tend to die much younger than they should have. To attempt to prolong death means considering incredibly painful and risky surgeries, medications, and other treatments.
And, it's incredibly unfair and unpredictable. The same common cold that might kill one "healthy" CFer might go unnoticed with another. The same drug that could help prolong one life could irreversibly damage another. Some are diagnosed early and live for 30+ years without any major issues, while others aren't diagnosed until their 30's and die a few months later.
When Haley was born 12 years ago, her parents were probably told that their daughter had a 50/50 chance of living to see her late 20's. She didn't even make it half that far. Yet, there are a few thousand other 12 year old CFers living right now who will survive into their 30's.
In the time we've been at Duke during the past 6 months, no less than three people we have met and known personally at Duke have died because of their CF.
One was in her early 20's, just months removed from her second double lung transplant, the first one having failed her after only a few years.
Another was much older, diagnosed just last year, hoping to work her way onto the transplant list before her body gave out on her.
The human will can only take one so far...unlike most cancer and many other diseases, CF is one that simply cannot be "beaten", and even the most determined person can't do a single thing about it when their body turns against them.
Yet, despite all of this, I have never witnessed a CFer complain. I've never heard a CFer say, "I can't". I've never seen a CFer not be able to smile. I've never known a CFer who didn't love and care for others more than themselves.
Perhaps it's the closeness to death that gives these people so much life. Maybe it's the pain and frustration that causes them to find such joy. All I know is, at the end of the day, they are blessed if they choose to be.
And those of us who know them are as well.