An Open Letter to the Ones Who Think We’re Just Rebels

Growing up, every kid has a hero. Some girls watch The Little Mermaid, flick their long hair over their shoulders, twist their ankles around one another, and flail around as if they’re desperately immobile on dry land. Some boys scoop mud onto their fingers and drag it across their cheeks preparing for battle as Rambo. Batman, Belle, Spiderman, Cinderella… Name any given one, and they’ll resonate with a child somewhere and give them a sense of belonging far before they’ve reached an age where they can tackle the world for themselves.

Even in my Dinglehopper days, my clan was The X-Men.

Over my almost two decades of involvement with the Cystic Fibrosis community, I have been blessed to know a handful of patients whom I affectionately refer to “as my fellow mutants”. I didn’t grow up in the age of social media… Didn’t have a computer with internet until I was 16 years old, or cell phone until I was 19… So the “sick kid” part of me remained very isolated. I knew my mutants had to be out there, wading through the rest of humanity looking for each other, but it was a long time before I met my first CFers on MySpace, and then finally, years later, in person. CFers who, like myself, chanced living against the rule of staying apart for fear of the potential risks involved for an opportunity to feel wholly understood and accepted. CFers who I have traveled with, traveled for, opened my home to, stood beside while they got married, and held onto while navigating survivors’ guilt for others like who were taken too soon.

So when asked by those on the outside why we would defy a rule like that – A rule that, for all intents and purposes, was designed to keep us alive – It’s easy to say, but difficult to truly convey that this bond is not borne of arrogance, rebellion, or an “it can’t happen to me” Superman complex… It comes from a deep-seeded longing to be understood and accepted as “normal” while leading a lifestyle that is anything but. And it comes from the overwhelming comfort that comes with experiencing firsthand, in the midst of CF hell on earth, how it feels when someone who truly gets it reaches for your hand and refuses to let go.

Eight years ago, I learned this on a whole new level.

I met Zack in October 2014 in a Facebook Cystic Fibrosis forum, where I suggested that while Western medicine is absolutely beneficial in staying well, it should be our last resort, not our default go-to. Over 250 fellow CFers weighed in on how foolish and irresponsible I was for thinking outside of the box, and for trying to take others down with me. All except for one: Zack stood up to every single one of them for a stranger half a country away that he had never met, and in doing so, he changed my life. It may have taken nine months for us to meet face-to-face and agree to give dating a chance, but ever since the first time I walked off of a plane into his arms at Tampa General Airport, I’ve never looked back.

Over the last eight years together, seven married, we have faced our fair share of criticism for bucking the system. We have been openly embraced by most, but vehemently disagreed as well by many whom we’ve put our lives in their hands. We’ve been told it was hoped we would die, and that if we ever had children it was hoped they would die too, so an end would be brought to our selfish and insensitive sucking of the economy dry. We’ve been loved on by far more, and had more opportunities than most to share our unique life and love for a purpose we believe is far greater than ourselves. But no matter how hot the fire, it has never been enough to give “us” up. Because hear me when I say, the most invaluable piece of living my life day by day, minute by minute, breath by breath, and hand in hand with another CFer is that with “us”, we are not mutants.

There has never been fear that the other will lack understanding and bail. There has never been a sense of false neglect between us due to the hours spent concentrating on the therapies required to keep us healthy before Trikafta came along. There has never been awkwardness in sharing even the most stomach-worthy of CF circumstances. There has never been judgment. There have certainly been hard moments, and moments of feeling the other deserved a better, an easier life than the one we’ve chosen, but there has always been conversation combatting those lies and bringing us back into the teamwork that keeps us thriving. And there is, very intentionally, no going to bed angry.

breath of life handmade tyler texas blog an open letter to the ones who think we're just rebelsThere is, however, seeing him at his worst and still considering him my best friend, my greatest gift, and the love of my life. There is feeling ashamed to show him my worst, then finding out more and more every day how unconditionally loved I am. There is him pulling me into the kitchen to dance in our sock feet as I whistle a tune we’ve both come far too familiar with – The hold music for the cafeteria at our hospital in Dallas. There is beauty in not only days at the beach, at dinner with our friends, and at theme parks and concerts, but in breathing treatments, grocery shopping for two people whose caloric intake rivals a football team, organizing medical bills, and living for weeks at a time by each others’ sides when the time comes for one (or both) of us to go inpatient. There is taking the disapproving glances and the unsure future with a grain of salt because at the end of the day, we know that we know that we know that God has kept us alive and put us together for a reason far greater than ourselves, and that every day we draw breath on this earth, we get to tackle all life throws at us with our love, our best friend, our rock, our encourager, and our teammate in believing that the risk factor is no match against our power to change things for the better.

Truth be told, there is no senseless rebellion that is worth risking your life over.

But there is a love. And for me, without one like ours, there is no life anyway

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