Wednesday, May 20, 2015

Show Me The Blueprints

     When I was 12, I was asked to meet someone named Wendy and her son, fellow residents of my small hometown.  I was told he had CF, just like me.  But, even by that age, I knew there was nobody who had CF "just like me."  I was not aware at the time that my mutation is the most common one, but that didn't really matter.  At CF Camp, which had been discontinued due to the dangers of cross contamination a few years before, I recognized that there was a wide spectrum of what life with CF was like, even though most of the kids there seemed to be having an experience much like mine.  I could tell some were having more problems, and some were in better shape than me.  (Camp also erased my notion that having CF and being short were inexorably linked.  The more you know!)  Even at 12, I had some trepidation about meeting a mom who had a baby with CF.  I recognized then, and I know even more clearly now, that the story of my CF journey was not offered as a guarantee, blueprint, or prophecy.  I was there to offer hope.
     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.



  1. Very nice Evin!!! I love it! ❤πŸ’™πŸ’œπŸ’œπŸ’›πŸ’š
    By the way, I don't always see your blog on fb. Is there an easier way to find them daily?

  2. Thank you so much, Wendy!

    Hmmm... you can "follow by e-mail"-- it's an option on the right side of the screen as you scroll down. Also, I think everyone who "liked" my Student, Teacher, Husband, Father page on FB (the link that I shared on your wall takes you there, I think) that should make my daily updates pop up...