“Do you want to be healed?”
To someone battling a chronic illness day in and day out, it sounds like such a foolish question.
But when you’ve been fighting that illness for the entirety of your life…So much so that it becomes the very core of who you are…Is it really so crazy?
Today wraps up Cystic Fibrosis Awareness Month, hot on the heels of National Donate Life Month in April, and honestly, I’ve had extremely mixed feelings about it. On one hand, CF is obviously a giant part of Zack’s and my life, and one that affects many whom I love and love to advocate for. I can’t even begin to count how many dark days the CF community online carried me through as I navigated new experiences like PICC lines, hospital admissions, and survivors’ guilt for all too many who have been taken too soon. There’s a special kind of immediate camaraderie that blooms in the face of adversity like ours, and it’s not uncommon to witness strangers coming out of the woodworks to encourage and embolden other patients they don’t even know, just because they understand on a deeply personal level what they struggle with from day to day.
On the other hand, I have come to understand more and more over the last two years that CF is not my identity, nor do I want it to be, nor is it anywhere near what I consider most important to me. I have come to understand on a whole new level that what we dwell on, we give power to, and I’m not at a place any longer where I want to give any more attention to it than what’s necessary to survive. So while on May 1st, part of me felt the familiar tug to change my profile picture to a Cystic Fibrosis-bannered shot of Zack and I in surgical masks and dive headfirst back into our CF May Photo-A-Day challenge from 2017, the majority of me has remained remarkably at peace by ignoring it altogether.
Growing up, Cystic Fibrosis was the farthest thing from my mind. My parents were diligent to raise me knowing what my limitations might be, but to test them and see if they actually applied to me. I maintained a healthy balance of taking breathing treatments and visiting the school nurse for my enzymes, but I also played sports and rode bikes and climbed trees and jogged the trails that wove through the woods behind my middle school, even though my doctors often told me not to. I held down jobs, three at one time when I was 18, only calling in sick when it was true. As far as I was concerned, and as far as my life experiences were showing me, I wasn’t different, so it never occurred to me to hold myself to any kind of special standard.
When I found the CF community online, however, things changed. Suddenly, before my pulmonary functions even began to see decline, I was getting attention just for being part of the community. I noticed the more I highlighted my illness, the more seriously I was taken; the more I posted about being sick, the more I was publicly complimented as “inspirational” and “courageous” and “amazing”. It was a self esteem boost that I’d never experienced before, and it didn’t even matter that it was attention for something negative. Before long, I had let CF become my identity – My self worth teetered on whether or not my illness was supported or rejected by others. For the better part of five years, I went from never being hospitalized, even when ill, to being either inpatient or on home IVs every couple of months. And if I’m totally transparent, it became a crutch. It became something I could easily fall back on if I didn’t feel like busting out of my comfort zone. If I didn’t want to put in the effort to be better, I didn’t have to. I had an excuse.
When I met Zack, things changed again. While living in Florida, we created the social media project Team Debo vs CF, and while it was centered around our battle, it wasn’t primarily focused on the enemy itself so much as how we chose to fight it: With love. With fun. With pushing our limits. With sunshine and the ocean. With CrossFit (moreso him than me…I do not enjoy ticking myself off into lifting heavy things). And most importantly, with God at our helm. And I can honestly say that the only times we really think about CF are when we’re plopped down in bed, either having a coughing fit or doing meds to prevent them from happening, or when someone outright asks us about it. And in four years, Zack has been on home IV medications two times, and myself, none.
I often hear the infamous line, “I have CF, but it doesn’t define me” among fighters in the CF community… Yet the vast majority of their social media posts and conversations they participate in revolve around CF in some form or fashion. Do I believe that their hearts fiercely want to believe that? Absolutely. What I don’t think some of us realize is that we are what we do, what we talk about, and what we keep at the forefront of our minds, no matter what words come out of our mouths.
I get that our treatments can take up at least a third of our days. I get that many of our medications travel with us everywhere that we go. And I get that some of us wear oxygen 24/7, and it’s impossible to ignore the questioning eyes that we come into contact with. But there I think is where it becomes the most damaging: If your identity is in Cystic Fibrosis, or any chronic illness or unfortunate circumstance really, and that’s rejected, do you consider yourself rejected, too? Where is the line between who we are and what happens to us really drawn?
Last winter, Zack and I were staring death more closely in the face than either of us ever had before. That may sound melodramatic to some, especially those who only know us by our social media presence, but those who walked and prayed with us through that valley in our personal lives can attest to the reality of the conversations we had about what to do if things didn’t turn around. And while yes, most of those days were monopolized with CF by how we felt, we fought even harder to keep our eyes and focus on God than we did for our lives. Our Chromecast steadily flowed with YouTube sermons by pastors all over the globe and encouraging videos on faith and healing. We never missed church or our fellowship small groups, even if those two days were the only days of the week that we left the house, and in many cases, they were. We turned our attention away from CF and toward our Abba as much as humanly possible, and within 90 days, we were for all intents and purposes back to our “normal”.
What’s even more remarkable, though, is that all we had to work with at the time was an inhaler, a steroid, and the power of prayer. Today, our lung functions still haven’t bounced back to our baselines, but by God’s grace, we function like they have.
And in July, only six months after the picture of myself on oxygen was taken, we climbed Exit Glacier in Alaska during a summer mission trip that was fully funded by friends and family around us.
Many days still present challenges… Some more than others… But we intentionally aim to live every day in the truth of who He is – Our Jehovah Rophe, our Healer – And who we are in Him over what the numbers on the clinic spreadsheet say. And it’s a non-stop adventure in a way I have no idea how to describe.
This post is not meant to shame, or to wound, but to make everyone who comes into contact with it think outside of the proverbial box that many of us have become accustomed to surviving in.
So my biggest question to you today is: Who are you? If you struggle to answer that, ask yourself what the most important thing that you make sure others know about you is. Do you make it a point to introduce yourself as a chronic illness warrior? A parent? A musician or an actor or an athlete? I remember the first time that this question was presented to me, I immediately realized I didn’t like the answer. Because while those may be things that we do, or that we choose, or that we enjoy, none of them shape the core of who we are. Since then, it’s been a slow transition to fully accept that I am proudly nothing more, nothing less, than a child of God and a warrior for His love, and that everything that swirls around me in this lifetime does not define me… It simply happens to me.
And the same thing goes for everyone who believes ♥