Only 6 Years Left?

Yeah rizzzzight!!! I can't tell you guys how bonkers it drives me to hear that 37 number thrown around the community. You know the number I'm talking about right? 37 is the predicted median survival age for the CF community (here in America) according to the CFF. Since I'm turning 31 today, it got me thinking, should I just enjoy cash in my chips and enjoy the time I have left? I of course say that in jest as I would NEVER say that (and mean it), but to highlight an attitude that still is present in many of my close CF circles. We get fixated on a number that's thrown out there and then think we somehow have to live down to it or in some cases, spend our whole lives trying to attain it. Can I just say this, screw that number and screw statistics in general. I've never bought into the hype before and I certainly don't plan on buying into the hype now.

I was fortunate to develop this attitude at a very young age. I don't know why, but even as a youngster, I was able to see the forest through the trees. See, when I was born in 1980, that predicted median age of survival was hovering around 17. Even more so, there was an attitude present in the community to just "value the time you have" because "he probably won't see high school". Why do I remember this? Because I overheard a doctor say it. Not only did I hear doctors say it, but I saw many of my friends live it.

I'd like to introduce you to my friend Robbie. Robbie and I met at the hospital when we were kids and we connected right away. He was a few years older, but he was one of those "cool" CF kids that I longed to meet. You know, one who I thought was "just like me". There was one key difference however with me and Robbie. Robbie never did treatments. I used to question him all of the time as to why this was and to this day, I've never gotten an answer. Maybe it was because he was raised by a single mom who smoked in the house? I mean, she obviously didn't care, why should he. Maybe it's because they were on welfare and couldn't afford the latest and greatest in CF treatments? Maybe he heard the number 17 and thought to himself "what's the point"? I never did get a chance to get to the bottom of it, my friend Robbie died when he was 12. I still think of him to this day.

But this isn't a sad blog, see, even as a kid I knew I wasn't locked into Robbie's story. Shortly after he died, my mom cautiously approached me to assess how I felt about it all and to see if there was anything she could do. She asked if Robbie dying scared me at all. "I'm sad, but it doesn't scare me" I said "I'm not Robbie". "What do you mean?" she replied. I said, "Robbie didn't do his treatments and his mom never pounded him". Even back then I just couldn't buy into this whole "CF is CF" mentality and that we're all destined to the same fate or locked into some magical number. Again, screw that. Robbie should have never been included in any number or statistic that was ever thrown onto me. Sure, we both had CF, but that's were the similarities ended.

I feel the same way today. That 37 number means absolutely nothing to me. In fact, any number that includes the whole CF community means nothing to me. As long as those numbers include kids like Robbie who don't do treatments or have parents that don't give them a fighting chance, they mean nothing. We don't know what everybody else is doing out there. We do know however, that most surveys show that at least 50% of CFers do much less than or none of the treatments prescribed by their physicians. So I ask you, should they factor into any number that you hold up to yourself or your child? You obviously know my answer. Whether you pay attention to the numbers is up to you. I'm much more interested to hear about those who do what they have to do each day to have their lung function at it's highest possible position. If you don't care enough about yourself to do what you have to do to live a healthy life, then stay out of my statistics.

Now, inevitably, I'm going to get comments or emails saying something to the affect of "Ronnie, I hate you. I've done all of my treatments my entire life and I've exercised regularly since I was 4, yet my lung function continues to decline and I'm always sick. So just know that I do what I have to do and it still isn't working". Short response: You are in the minority. Not only are you in the minority of CFers that do all of their treatments everyday, but you're also in the minority of those that do all of their treatments and still can't get healthy. I generally like to focus on the majority, the majority of us who don't do everything we need to do to stay healthy and then wonder why we're sick. I've been there. I was living the "blind-folded excuse filled life" for many years. I know it's tough to own it and take responsibility for our own actions and choices, but man, once you do, it's just so much easier. You start to realize that we do in fact have a lot of control over this stupid cell disease and we have much more power than we give ourselves credit for. It's just a matter of biting the bullet and getting started.

With that said, on my birthday, here's my wish: I just want us all to commit to taking care of ourselves so in the near future we can see what the real predicted median age of this community. A community dedicated to treatments, exercise, self-worth and no excuses. I can guarantee you this, if we all committed, we'd see that 37 number WAY BACK in the rear-view mirror.