Celebration or sentence…

TODAY’S FORECAST: Tired

Yesterday I had my regular check-up at Cystic Fibrosis clinic. I have to admit, clinic days are not always my favorite, because as I get older and more complications arise, I never know what new issue will rear its ugly head. Yesterday’s visit was no exception, as there were a host of new issues we needed to address. Comparatively, I walked away moderately unscathed, with an extended trip to the lab, two scheduled procedures, one new medicine and an appointment to come back in 10-14 days to see if I am “feeling better.” This is basically code for, “If you don’t improve by then, it’s back on IV meds for a while.” Ick.

I was thinking back this morning about clinic days during my younger years, which were loads more fun than they are now as an adult. I used to skip into the office, get fussed over by the doctors and smile sweetly for the nurses who clapped for every pound I gained and every inch I grew.  I’d leave with a sticker and a lollipop, wishing that every day could be “clinic day,” totally oblivious to what CF was really all about. In those days, clinic day was a definitely a celebration.

During my teenage years, clinic was an eye-opening experience. I began to take notice of the people around me in the waiting room. They looked a whole lot sicker than I ever felt. I heard stories of how they missed so much school because they had to go into the hospital all the time. I tried hard not to stare at their fingers, clubbed and deformed from the lack of oxygen, and even silently congratulated myself that my own fingers did not look like theirs. I listened to them cough in the waiting room and I wondered if perhaps someone had made a mistake, and maybe I didn’t have CF at all. Call it denial, call it teenage rebellion, I still don’t think that I really knew what CF was then, and I wasn’t really sure I wanted to find out. Find out I did though, as I had my first major CF infection hit right as I was beginning high school. Still, after it was over, life went back to “normal” for the most part and my visits to clinic did too.

About the time I went to college and decided to get really rebellious, CF clinic wasn’t much fun at all. I transitioned to the “adult” patient clinic, which was a relatively new concept in the world of CF at the time. Instead of lollipops and stickers, I got lectures and added therapies that were a real drag on my budding social life. My new doctors weren’t nearly as impressed as my old ones. Someone had apparently forgotten to tell them that I was the “superstar,” and no one was clapping. Clinic now seemed like a sentence and I didn’t like the verdict.

As I’ve grown up, I’ve come to appreciate CF clinic days for what they truly are; meetings of the minds to strategize how not to let CF win and how to treat the indelible, growing list of impacts it unfairly doles out. While there’s a lot of physical examination involved, the CF team deals with the psychological and emotional impacts as well. I have an unwavering amount of respect and love for my CF team who has dedicated their life’s work to keeping me alive and improving the quality of the life I live, for whatever is left of it. These doctors, nurses and techs who I’ve now seen for almost 20 straight years have seen me through every high and low imaginable to this point; yet unimaginably, I know there’s so much more to come. Over the years, they’ve delivered good news and bad. They continually introduce me to new therapies and remain optimistic that I will be able to live long enough to partake of the “cure” that is closer to being than it’s ever been. Alternately, they aim to honestly prepare me for a realistic future with CF and deliver words no one really wants to hear such as “life expectancy”, “living will” and “worsening lung disease.”

In spite of the serious nature of these days and all that needs to be accomplished, we still manage to have fun. We love to tease one another, celebrate each other’s accomplishments, share stories of family, faith and goodwill. I take comfort knowing that when the news will not be what I want to hear, at least I have some amazing people to help lift my spirits and help me get a handle on what the necessary next steps are. Clinic may no longer be lollipops and stickers, but I have been blessed with a group of people who make it their life’s work to care about me, my longevity and quality of life. Celebration or sentence, you decide.

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4 thoughts on “Celebration or sentence…

  1. Jen–this is fantastic. The chronological narrative of CF clinic is astounding in its truth, its reach, and your exquisite memory recall (expounding on your feelings at every stage). Despite the typos ;) it’s my favorite to date…(Ha! Given the serious perfection of it, I had to throw in some necessary humor…perhaps only necessary to me :) LOVE YOU! PROUD OF YOU!

    • My goodness that was awfully quick feedback, you jumped on that thing lady!!! LOL I’m glad it reached you, and I love getting your feedback not only because of your professional experience, but because you’re you. Love you too and thanks for being proud of me, that means a lot.

  2. What a wonderful story you tell! I am sure that CF team loves seeing you come through the door! You are amazing all around!

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