I have been in touch with her recently, as a result of writing this blog / book, and she reminded me of some of the details of how that meeting went twenty years ago. She recalls thinking that I looked "incredibly 'normal'" and that when my mother took me home, I left with her a sense of relief and some hope for the future. Even though I never visited them again, she and my mom stayed in close touch, sharing stories about how their respective CF kid was doing. Hearing about me becoming a father, working full time, and other details of my "normal" life continued to make her hopeful for her son's future, even though his childhood experience with CF had been much different than mine.
She told me recently that when my mom revealed my need for a double lung transplant, she was shocked and distraught. Not long after finding this out, she wondered what this meant for her own son. I know exactly what she means by this: the person with CF who I've remained closest to since CF Camp is the same person who, for years, I compared myself to in regards to my disease's progression. I always told myself I was "on his track," just a few years behind, since I'm three years younger than Ryan. Then, five years ago, he had a double lung transplant at U of M. I had been teaching for four years, had just had my son, and yet, was unfazed by this news. Regrettably, I did not deepen my connection to Ryan via social media whatsoever. I made the requisite supportive comments on Facebook, "liked" the progress updates, and went about my marry way, having decided I wasn't "on his track" after all. Apparently I only bought into comparisons when they benefited my outlook.
I told Ryan all of this when we met for lunch along with our wives once I learned I was going to need to go on the transplant list. He understood the concept of me comparing myself to him; it is a natural part of human nature to seek a measuring stick among our peers. He gave me a gift that no one else could, walking me through so many scenarios and answering so many questions, not just while we had lunch that day, but for the next year and a half. I can't actually repay Ryan, but I will do so symbolically in the only way I know how-- by finally admitting that, in the four square rivalry that has existed between he and I for the past 25 years, he is, and always will be, the King. (Even though the certificate the counselors at Camp Onkoi Benek gave me says I am the all-time champ. If I ever find that piece of paper, I'll mail it to him or something.)
In writing this book/blog, Wendy tells me that I continue to offer her both a sense of relief and hope. And while that's part of the point of this whole endeavor, my post-transplant success, just like the rest of my journey, is not about blazing a trail that can be followed at will. So many variables, ones we can identify and those we are blind to, impact the health of a chronically ill person. Rather than a blueprint, what I hope I can contribute is a conceptual template. One that starts with "attitude" and ends with "zeal, " one that recognizes the things we, along with those who support us, can and cannot control. Letting go of the latter while medical professionals and loved ones hold our ladder. At the end of the day, comparing myself to others and wondering about "what ifs" and "could've beens" are merely distractions from the goal. No one is going to take the steps for me-- it's my job to take the rungs all the way to the top.