Cystic Fibrosis Life

Embracing the Box of Cystic Fibrosis

“You gotta stop putting me in this box of cystic fibrosis!” I said forcefully while choking back tears.

“Mandy, you’re already IN that box! I’m not the one putting you there. But you’re there and you’ve got to be realistic about it,” my friend said back with equal levels of force. There was, however, an underlying tone of care and maybe a smidge of compassion in his voice that made me lean in and face what he was saying. I’ve known this friend for two decades and this topic has never been breached before, only tiptoed around. What he said struck a nerve; a deep one.

Quick warning: this is more of a Thursday Thought kind of post instead of a Monday Motivation. There’s a healthy amount of rambling here because I’m basically coaching MY OWN DAMN SELF – and you get to read it because sometimes this is the rawest form of vulnerability that I can share. Unedited words from my own journal as I process my life…

I never wanted to be in the box of Cystic Fibrosis (CF).

In fact I’ve always taken pride in the fact that I have CF but I don’t let it have me. This conversation made me realize something: I’ve been trying to keep CF at arms length. Which is tricky because, well, it lives inside me.

We’ve had a delicate dance, CF and I. There’s the years where I was compliant and basically the poster child of what being a healthy, responsible CF adult looks like. And then there were the years where I tried to pray it away and believed God for a supernatural healing of this incurable disease. I walked that out by throwing away my meds and not doing treatments for about two years. Spoiler alert! It didn’t end well. There’s a ton of things I can say about that whole experience – and I have actually, in chapter eight of my book. I think I’ve spent the last seven years just coming to terms with what happened during those years and who am I really…and that brings me to today.

The conversation with my friend happened earlier this afternoon, on March 13, 2019. That’s significant to me because it was on March 13, 2010 that I threw away my medicine and decided to walk by faith, believing God for a supernatural healing of this disease. I don’t think this is a coincidence…

Today is the day that I fully realized that I’m IN the box of cystic fibrosis and I will never be outside of it. No matter how hard I try. And here I’ve been trying to have one foot in and one foot out. Yes, I’m overcoming CF, but don’t you dare use it to define me. Don’t look at me like I’m sick or treat me like I’m a victim or remind me of what I go through every day and how I should be careful. And for goodness sake, let’s only talk about it when I feel like it! That’s kind of been my internal battle since as long as I can remember. And I honestly feel a bit like the fool right now because, well, I think it’s been clear to everyone but me.

I’ve been keeping CF at arms length. And today I’m choosing to stop that. I am putting both feet in the box of cystic fibrosis and standing firm and strong in it for maybe the first time ever. I’m choosing to do the one thing I’ve never been willing to do wholeheartedly – play the CF game.

“You win Cystic Fibrosis! YOU WIN!” She screams while looking up to the sky and spreading her arms wide while twirling.

Maybe this is why I love The Hunger Games? The reason I am drawn to the heroin stories where she rises up and leads the battle that she never wanted to be in. Maybe this is why I haven’t fully succeeded in my big dreams…yet. I’ve been trying to write my own rules to a game that is already pretty strict: the cards are dealt. Play those cards and make the best of it. May the odds be ever in your favor.

I’m in the box of cystic fibrosis. Nobody put me here. It’s just the way the cards were dealt for me. The odds have never been in my favor; but I’ve beaten the odds a few times already. So now what? Am I going to suddenly become pessimistic and live my life by fear and statistics? No. I’m still going to do my best and shine bright as an example of what it means to overcome something you had no choice in.

But here’s where it changes: I’m going to be more visible in the CF community online by sharing MORE of my life – the good AND the bad – with the people I hang out with online. I’m going to lean in and get more involved in the CF Community. I will start making new CF friends again, even if I’m afraid I’ll have to face the pain of losing them again. And I’m going to stop avoiding the harder questions.

Instead, I’m going to play to win and ask MYSELF the hard questions so I can learn, grow, and get stronger.

Questions like:

  • What’s realistic and what’s not and where do I want to fit within the possibilities?
  • How long do I hope to be able to actually work?
  • When would I maybe like to retire?
  • What do I need to be prepared for that I might not see coming?
  • And what about the fact that I’ve never asked myself these questions before actually bothers me?

I’ll tell you the answer to that last one. It bothers me that I’ve never stopped to prepare for the future financially like an adult should. And why haven’t I? Because in the box of cystic fibrosis that future is kind of like a pie in the sky kind of thing. It’s abstract. Yes, medical technology has improved immensely but I don’t actually know any seventy-year-old CFers living on their retirement funds right now. Do you? They might exist, but I don’t know them. And because I don’t know them and I have never wrestled with what a “realistic retirement age” might be, I’ve avoided the entire subject all together. Like a moron.

Another hard question as I prepare to step out into bigger arenas as a speaker, author, and a coach is this: what have I been afraid of and why haven’t I done this sooner?

The answer: I haven’t been willing to let my guard down with CF. I’ve been afraid of what I can handle and what I can’t. Up until the last year I just lived in that tension of doing nothing and thinking that time passing would fix it.

It doesn’t. If I’m going to test what I’m capable of, I’ve got to DO IT. And I have been for a year now. I’ve been testing my abilities physically by working out with a trainer, running further than I ever have before (or should be able to), and challenging myself to speak longer than I ever thought possible. And I’ve done it. There have been failures along the way but I’ve gotten back up each time and done it again and again.

But I’ve yet to wrap my mind around what it means to partner WITH CF instead of trying to run away from it.

So I’m done now. I’m partnering with it. CF is what has made me a fighter. It’s what has made me so passionate about being an overcomer. CF is not my foe – it’s my friend. Without it, I don’t really have a story. Trying to hide it and only talk about it from a stage when I’m paid to is quite frankly stupid and living a double standard that I didn’t even realize I was in.

I can’t tell people on a stage or in a coaching program that I’m an open book and then get offended or frustrated when someone catches me by surprise in the supermarket and asks super personal questions that I wasn’t ready for just because I don’t feel like it at the moment. People are desperate for HOPE; they are desperate to connect with someone who is rising above. I can’t be both thankful for the story of rising above CF and frustrated by the challenges it brings me. Pick a side Mandy!

I’m embracing the box of cystic fibrosis and honestly, it’s about damn time.

This is going to evolve over time, I’m sure. Embracing any box is always a process. For now, one of the first ways that I’m embracing the box of cystic fibrosis is this: I’m using my voice to speak up and speak out. The CF Box is filled with statistics and daily routines but I’m going to speak up and redefine this box as I push through to overcome my own limitations because of CF.

One way I’m doing this is by launching a brand new podcast! It’s called the She Who Overcomes Podcast and we will be sharing the first episodes next week. For now, just know that the first 13 episodes will be my story, read to you chapter-by-chapter from my book, She Who Overcomes: Rising Out of the Ashes of Your Circumstances. After that, we will grow together and get the word out about overcoming EVERY obstacle, not just CF. My vision for this podcast is to reach people around the world and help share their stories, too. I can’t do it alone, so I’m gonna need your help. Are you in? Because guess what? I’m all in.

All. In. You’ll hear more on the podcast. Until then, be encouraged to embrace your own box. In fact – let’s redefine ALL the boxes! Together.

Much love,

~Coach Mandy

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