Cf on the Big Screen

Great Divide

A contentious red hot debate is smoldering in the cf community over the movie Five Feet Apart, now in theaters. Cystic fibrosis (cf) is the central feature of this feature film. And it has polarized patients and their families in a way almost reminiscent of American politics. It’s been interesting, if not unsettling, to see sparks fly in the public arena among our relatively small population of individuals who normally just knuckle down fighting the good fight for their health with diligence and dignity. What’s got people so riled up? Why is the movie so controversial?

In one camp we have naysayers, a group of vocal high profile patient advocates (including Gunnar Esiason and friends). They’ve used their platforms to pan the movie from the start. My take is they legitimately feel disrespected, perhaps endangered, too, by the notion of a forbidden love between two star-crossed teenagers who both have cf. Their argument is Hollywood will not only romanticize the disease and capitalize on people suffering with chronic illness, but promote a dangerous disregard for infection control practices to the cf community. The critics resoundingly say, “no, this is not the real cf.” A media blitz this past week leading up to the opening resulted in a veritable PR war between outspoken critics and the film studio.

In camp two, other community members are abuzz with excitement and emotion. Fans post support for the arrival of the first ever mainstream production about cf. Above all, supporters value heightened awareness thanks to the film. They feel it will start and enhance conversations about what life is really like for people fighting cf. Of any inaccuracies, they’re likely to say, “folks, it’s only a movie.” And no matter what, this movie gives everyday people a clear, though narrow, window into the isolated and grueling world that is cf. What The Fault in Our Stars did to elevate the plight of a different patient population, this one’s for us.

We can’t forget about a final camp. Of course, people with a firsthand connection to cf are not the only moviegoers. Fans of romantic weepie dramas starring a heartthrob like Cole Sprouse of Riverdale popularity are bound to be at the theater. Plenty of young people will show up at Five Feet Apart for sheer entertainment, but they will leave with an enduring impression – probably their first – of what cf is all about.

Where We Stand

Our hearts guide Av and me to align mostly with the second camp of supporters. When the first trailer came out, she squealed “OMG, Cole Sprouse has cf!? This is 14. She has invited me to go with her (which is pretty sweet), so our plan is to watch the movie together as soon as the moment is right.

Av told me of her first positive Five Feet Apart effect. A school mate caught her popping pills when she was eating a snack during History class. He whispered, “why are you taking those?” She said, “because I need them.” He asked, “OMG, are you alright?” Her answer was, “All good. Ya know, ‘five feet apart.’” She gestured towards herself. His eyes popped, but then he nodded at her in awe with fresh understanding. We’ve got genuinely interested kids as well as those who’ve merely heard about the movie who now recognize the words cystic fibrosis. I’m grateful Av and other teenagers with cf can use their enlightenment as an ice breaker.

At first it seemed strange, random even, to imagine someone making a romance out of a decidedly unsexy medical condition like cf. But to know some of the backstory is helpful. Five Feet Apart is dedicated to the late Claire Wineland, a young woman who fought cf, a popular vlogger and advocate. She died last fall at 21. She was close friends with the movie’s filmmaker, actor and director Justin Baldoni, through an earlier making of a documentary about Claire’s real life. Justin was so inspired by her, he joined the ranks of cf allies to help carry on her legacy. In my view, Claire’s involvement in the early stages of the movie gives real credence to the idea of sharing an inside look at cf life with the wider world. It’s easy for me to stand behind a force like Claire and her enduring messages of positivity in the face of her own demise. It’s easy, although incredibly heartbreaking, to see her reflected in the female lead in the movie.

Myth-busting

I confess the reason Av and I already have a pretty good read on the plot and setting in Five Feet Apart is we already devoured the book. Between the book and trailers, we know basically what to expect from the film. We do understand where some of the trouble lies with the depiction of cf in a fictitious, romanticized, hospital-based storyline. While we and other insiders can distinguish what’s fact from what’s fiction based on firsthand knowledge and experience, how about folks in the third camp – the general public – who decide to take a chance on Five Feet Apart? This is what I would want them to know:

  1. Hospitals are not like a cruise ship or Melrose Place for cf patients. We used to call Av’s inpatient stays “hospital camp.” We would decorate her room with twinkling lights, artwork, and special pillowcases to seem as homey as possible. We brought in sketchbooks, games, and movies; and spoiled her with care packages. Ordered all the treats she wanted from room service. We got friendly with doting nurses, respiratory therapists, and other caregivers. At moments, she could feel like her hospital room, along with hidden attractions she explored during exercise with physical therapists, were a cherished haven away from home. That’s the extent to which we can relate to the characters’ hospital life in the movie.
    Here’s the real deal: patients who are admitted for treatment for cf would not be hanging out five feet, six feet (the actual rule), or any feet apart. They would instead be isolated in their rooms on contact precautions and probably never lay eyes on the living, breathing beings on the other sides of the walls. Five Feet Apart does a decent job presenting the premise of deadly cross-infection. I guess it’s plausible that stealthy teenagers with crushes might sneak around, but hospitals would never knowingly allow patients infected with all manner of cf bugs to roam freely in and out of newborn units, swimming pools, or multi-purpose rooms. Patients with cf don’t go to the hospital gym to work out together. It’s pure fantasy that a patient would get away with “renting out” his bed so friends from home could come and make out. Patients with cf don’t get to sit around under the door jambs of their hospital rooms shooting the breeze from across the corridor. Truly. Sadly. This is a Five Feet Apart reality check.
  2. Not all cf parents are messed up and absent. I’m sticking up for my cohort here. As far as I’m concerned, it would be highly irregular to see a cf parent click through the halls of the hospital in heels before jetting away for weeks on end without once visiting her terminal kid. Granted this story is told from the perspective of teenagers, who we know on rare occasions to be self-absorbed and annoyed with parental types. (Ha.) The parents in Five Feet Apart serve as convenient secondary figures. Their primary role is to add further grief to their children’s already fragile psyches because of their own heavy personal issues, including anxiety, grief, and marital problems. What I’ll say about this is, aside from a shared hyper-vigilance, cf parents are as fiercely individual and complicated as our children. We come from all backgrounds; we have different interests and occupations. We approach parenting children with chronic illness in our own unique ways. We try our best, but we disappoint sometimes. We are also more than likely wearing yoga pants as we are camping faithfully, night after night, by our children’s bedsides in the hospital. And we’ll be there still, even once those children morph into sleepy, sneaky, snarky teenagers.
  3. Sudden and scary health emergencies rarely happen without warning to people with cf. Spoiler alert. Someone in Five Feet Apart is going to die. (Because, of course.) We know it’s true that cf is a killer. Young people tragically pass away from the condition far too early. Claire Wineland is one of countless angels. But the typical way cf progresses is insidiously slowly, albeit with intermittent sharp declines. From what I know, patients suffering from end stage cf would be quite sick and quite immobile; they either succumb to failing lungs or must undergo lung transplantation, which carries its own inherent risks. Maybe the plotline will play better on screen than in the book, but I’ve never heard of someone with cf being well enough to cook dinner and hang out with friends within hours of collapsing and perishing. The loss in the movie feels like a so-called cf ghost story.
  4. Cf is a thief. This theme is 100 percent true. Cf steals time, time, and more time. Time and again. It steals precious hours and years. It steals school days. And trips. It steals freedom. And dreams. And hearts. Breath. And life. Yeah, Five Feet Apart nailed this one.

Av and I are going to see the movie. It remains to be seen whether we’ll give it two thumbs up, but we are hopeful. Strategically, we’ve decided to wait and try to go next week when the early rush will probably have quieted down at the theater. As usual, we’ll bring enzymes for snacks. Hand sanitizer, always. We’re bringing tissues. And something more. Because we know other curious souls with cf may be there, too, Av will have a mask to wear. If we suspect a close encounter with another person with cf, we won’t hesitate for a second. Av will need to move away surely and remain no less than six feet apart. It’s just another day in the real life with cf.