Point of View

Written by: Zack Stephens

In the spring of 2013 I was invited to say a few words at the CFF Spring Fling on behalf of my father, a 60-year-old CF patient, who was being honored by the Cystic Fibrosis Foundation. I was grateful for the opportunity to reflect on some of my favorite memories and thoughts about my dad, but also challenged by the knowledge that our family’s story isn’t like that of most CF families.

Part of me felt I owed it to those families to relate the more difficult experiences, the daily grind, the grueling routine. All of those things have played a big part in my father’s life to this point and in my point of view towards CF. The truth, though, is that I’ve never thought of my dad as a guy with CF who’s managed to make it this far – but as a guy who’s made it this far, who, on top of it all, has CF.

In the end I felt I owed them that story, or at least a few bits of it.

Those who know my father at all know he’s honest, hardworking, mostly fair, fairly intelligent, finds himself funny and truthfully so do we. I can attest to the fact that he has always been a loving father and a devoted family man. He’s reliable, he’s decisive, he’s been successful in life by just about any measure, and he’s becoming a better golfer.

As a role model for my younger brother and me, he is, in many ways, hard to live up to, except that the blueprint he’s laid out is actually pretty well traceable. There’s no magic in it or at least there doesn’t appear to be. He’s extremely grounded, and I know I might have that perspective because he’s my dad, but my sense is that that’s how he comes across to most people – as a pretty level guy who’s just good, for all of these reasons and countless more – and these are things that my brother and I can strive for.

It’s only then that we realize that he’s done it all with cystic fibrosis, and that’s when the model soars to un-traceable heights – for as much as we tend to overlook it, every day for him does start with CF, and that means an unremitting regimen of treatments, check- ups, and more. I’m sure there are days, maybe more than we know, that he finds himself wishing he didn’t have to deal with it. But he’s never complained, at least not to us, though I’m sure sometimes he may feel inclined to, and perhaps has every right to.

And yet here he is now – with a beautiful wife, two knucklehead sons, an exceptional career, and all the other fruits of that labor. Add to it all that he hasn’t merely reached this point in his life, but by my count he’s enjoying himself as much as he ever has – and he actually looks better and healthier every time I see him. I struggle with how that’s even possible but it doesn’t change the fact that it’s true.

I’d been thinking about that recently and ultimately decided it must just be wishful thinking on my part and that I simply wanted to believe like anyone else that my dad was only getting younger and stronger each day when of course that’s impossible.

It was around that time that I got a text from an ex-girlfriend of mine who had developed a habit of running into my father at the local coffee shop just about every time she went there. She and I don't keep in touch a whole lot these days but I typically do get a message when the run-in happens and typically it'll say something along the lines of: "OMG, I just ran into your dad AGAIN at Starbucks." And she adds: "He looks great by the way".

So this last time when I got the message: "It happened again..." I replied back: "Handsome as ever?

"Handsomer," she said.

Now, take that for what it's worth but this is coming from a girl, who, at least at one point in her life, had pretty good taste...and who was never wrong about anything as far as she knew. So there you have it. All the proof we’ll ever need!

Inevitably the question comes up as to how has he done it, and the answer of course begins with him. As anyone familiar with CF knows, the level of discipline required to stay healthy is extraordinary, and my dad is the most disciplined person I know. Likewise, as any CF patient surely knows, it can’t be done alone, and so just as much of it begins with to the two most important women in his life – his mom and my mom.

But neither my dad, nor my mom, nor his mom, nor any of us can take too much of the credit for him still powering ahead, looking as good as ever. My father would be the first to tell you that we have also been extremely lucky. For too many of the kids and young adults out there with cystic fibrosis, the incredible discipline, the unending support, and the ever-improving treatments still aren’t enough.

My uncle Tommy who I never knew, and who never saw his first birthday, was one of them. My uncle John who I was fortunate enough to know until he passed away at the age of 51 was another – and though 51 is quite a long life by CF standards, it is still far too short by the only standard that really matters.

My dream is that we can help give these kids and their families what a lot of good luck has given to my family – and that, as my brother once expressed it to me, was a chance for my father not to define himself by CF but by the things he loves and by the great things he has done.

I hope that one day this disease will be curable – I know it will be – and in the meantime, through continued advances in treatment that are only possible through sustained support, my wish is that we can give more people with CF the opportunity to grow into mothers, fathers, and role models like my dad.