The Cystic Fibrosis community waits in anticipation this week for the release of Five Feet Apart, a new movie about two teenage CF patients who meet in the hospital and fall for one another, but aren’t allowed to come within six feet of each other because of a long-standing rule put into place to prevent CFers from potentially transferring life-threatening bacteria. As expected, the fanfare surrounding it among those living with Cystic Fibrosis is high; CF is relatively unknown and highly isolating for most, so any awareness that shines light on the formidable fight that takes place mostly behind closed doors is often welcomed. Even still, the feelings so far over the silver screen portrayal seem to sway to either extreme approval or outrage, with little ground in between.
If I’m honest, I’ve had extremely mixed feelings about it myself. It took me until this afternoon to even bring myself to watch the teaser trailer. Not because I fear I won’t be able to handle it, or because I’ll be offended if they get the details wrong, but because as many of you know, I have Cystic Fibrosis and so does my husband. I live the very rare plotline, albeit a very different path, that Five Feet Apart conveys. And it is stunningly beautiful in a way that no actor or script could ever re-create.
We have never entered into anything about it lightly, and we certainly didn’t choose it because we were caught up in the idea of forbidden love. There were many weeks of prayerful consideration and preparation that went into Zack and I deciding to be together. There were countless talks with each other and with our families. There were talks with our CF centers and talks about the possibility of future complications, like transplant ineligibility due to non-compliance. There was even a week-long period right before we met for the first time where we all but called it off because it just didn’t seem like it would ever work.
To this day, we still fight criticism of the most ignorant and ugly kind. Criticism that openly remarks to us that we should die because of our choice. That we should die because without either of us able to work full-time right now, we’re nothing but a taxpayer liability. That we should die because the world as a whole would be better off without “weaker links” like us present. That if we ever have kids, they should die, too. And while ideally, we shouldn’t care what others think or say, that kind of hate cuts to the core. But in the end, we checked “yes” because this is the path that our Father God has led us on, and we will continue to follow where He leads, regardless of how that may look to the world. And that is a side of the fight that the over-romanticized star-crossed lovers narrative will never bring truth or justice to.
All of that being said, I’m still excited for Cystic Fibrosis to take more of a national stage than it’s ever been given before and for it to receive the awareness it deserves. I support the premise of the movie and I appreciate the filmmakers who took a stance and made a movie about our li’l orphan disease at all. I don’t know if Zack and I will end up seeing it – We’ve had a handful of friends request to go with us if we do, so maybe we’ll make a group date out of it. Maybe we’ll decline and let them experience it on their own. But one thing we ask of all who decide to see it is that you pay more attention to the individuals in the film – To the depth of their faith, hope, love, tenacity, resilience, and determination to overcome every personal hell thrown at them – Than the tragic Romeo & Juliet twist. Soak in the reality of the battle that 30,000 people in the United States wage war on every day just to experience a taste of what most consider a normal life.
But don’t feel sorry for us…Stand ringside with us. Pray us through the valleys. Rejoice with us on the mountaintops. And come to find out for yourself that faith, hope, and love, no matter how near or far they’re allowed to co-exist, truly are the cures for everything.