Thursday, September 18, 2008


Someone I know recently pointed me towards a very old blog entitled "3 years to live." The premise of this blog was that a perfectly healthy individual was going to live his life, everyday, as though he had been given the news that he had only 3 more years to live. Then, of course, he was going to blog about all the adventures he had while doing so. This was just one blog, but I think we all know the premise here. Countless books, plays, movies, blogs, bad t.v. dramas, and pretty much anything else you can name have been written in an attempt to answer the age-old question: if you KNEW that you had only a short time left to live, what would you do with that time?

It's a nice question, in theory, and I think we all have a couple of stock answers. Reprioritize, stop caring so much about the little things, quit the boring day job, reconnect with old friends, eat two desserts BEFORE dinner, yada yada yada. But for a cystic I think this question is (obviously) a little different, and maybe that's why it intrigued me so much that my (healthy, non-CF) friend was pointing me in this direction.

Because, quite frankly, I have been told by a number of pretty skilled medical professionals that I will likely need a transplant sometime "in the next 3-5 years" - whatever that means. (And yes, I ABSOLUTELY know that a lung transplant is not the same as being told you're going to die, but it's still hard not to consider the very harsh realities of end-stage CF that factor into that statement.) The timeline really is anyone's guess, and there are no guarantees, but that's the number they gave me. It stuck in my mind, so that even months later I have a hard time not focusing on it. And lots of cystics, whether end-stage or not, have similar stories about being given a timeline, told a number, and then left to grapple with what that means for the rest of our lives.

Surprisingly, my hypothetical answer to the "what would you do" question (move to the south of France and fall hopelessly in love) is very different from my real answer: which is to do every single thing in my power to delay the inevitable, and in the meantime to maintain as much of my everyday life as I possibly can. I've realized I actually *like* thinking about the little things, or going into work everyday, and even saving my dessert until the end of the meal (although I still eat two of them - good thing I don't have CFRD!). In short, I really enjoy my life and all the normal, maybe even boring at times, things that make up its daily routine. I am, in fact, fighting as hard as I can to KEEP my job, much as that might interfere with my dreams of handsome Frenchmen. That's not to say I'm not making some time to do some fun things I've always wanted to try. It's just that when I think of the ways I would most like to spend these next "3-5" (or more, or less) years, what really tops the list is to just keep living and breathing, and keep on loving everything that comes with that.

I think other cystics can relate, but maybe that just means our priorities are a little better from the start.

1 comment:

  1. Piper--I am working on a blog entry about something very similar. As a spouse, I often find my mind going to what will happen "after" and how I am supposed to live this life now knowing that at some point it it going to end and I am going to have to start a new chapter. It is very hard to wrap my head around. So, thank you for your blog! It has encouraged me to continue my entry :)