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'Five Feet Apart' Portrays the Grueling Realities of Cystic Fibrosis

"CF is also disease I’ve fought bitterly for 32 years since being diagnosed at six months old...'Five Feet Apart' acknowledges the hard truths of fighting a losing battle."

by Kyle O'Tain
Mar 19 2019, 5:24pm

Photo by CBS Films

When I first watched the trailer for Five Feet Apart, Hollywood’s newest sick-lit adaptation, it concerned me. The film follows two star-crossed lovers with Cystic Fibrosis (CF)—Will (Cole Sprouse) and Stella (Haley Lu Richardson)—who develop feelings for each other while confined in a hospital. We've seen this sort of story before, with The Fault in Our Stars, Me Before You, and plenty of others. CF is also a disease I’ve fought bitterly for 32 years since being diagnosed at six months old.

Cystic Fibrosis is a genetic terminal illness where the body’s mucus fails to pass through cell walls—keyword here being mucus, which we’ll come back to. CF affects about 30,000 people in the US and is relatively invisible from the outside. It’s a fatal disease with no cure, where the lungs progressively deteriorate from increased mucus and chronic infections, leading to either a slow suffocating death or a double lung transplant. But a double lung transplant is still only a temporary solution, since the body will reject the organ—only 54 percent of people will survive five years after a transplant. Considering all this, the trailer felt too peppy.

Will and Stella are constrained by one of the most isolating aspects of the disease—the “six-feet-apart rule” whereby patients must stay six-feet-apart or risk contracting one another’s infections. (You’ll have to watch the movie to figure out why it’s titled Five Feet Apart, not six.) Such infections are chronic, and quite aggressive, because they can be caused by antibiotic-resistant bacteria that colonize the lungs. They can also be extremely contagious, in some cases, ending in death. When I watched the trailer, I worried the film would be exploitative or become inspiration porn (#insporn)—stories that show people overcoming their disability in a feel-good, against-all-odds way that affirms and inspires the able-bodied. It’s an idea that’s damaging and harmful to people with disabilities, suggesting they shouldn’t accept chronic illness but thrive to overcome it.

But the movie immediately showed me it would be otherwise, thanks to its honest depiction of CF treatment. Early on, the film showed Stella coughing, a deep congested cough that sounded like how smoking several packs a day for over 50 years might sound—wet and sticky. Here’s where mucus comes into play—because our bodies can’t pass mucus through cell walls and can’t carry it out in our excrement, we have to clear it manually. “Manually” means spitting it up. We need to do breathing treatments and airway clearance devoted to spitting up loogies, which can disgust anyone unfamiliar with our disease. Then we look at what we cough up, because the color and consistency tell us how bad the infection is. Light yellow and loose is good; dark green and thick is usually time for a hospitalization and round of IV antibiotics. Blood means go to the ER. In the hospital we often keep a cup bedside to fill with loogies and measure the output. Describing a cup full of mucus may sound disgusting, but this is as natural to CFers as wiping your ass, and as important to CFers as breathing is to everyone else.

Seeing Stella cough up a mouthful of mucus into a cup and hand it to a nurse was a profound moment for me. The filmmakers weren’t shying away from the “gross” parts of CF that have made me feel ostracized and alienated. Imagine having daily coughing fits that sometimes make you vomit in the middle of class, and you can understand how much embarrassment and shame CF can cause. The disease itself leads to coughing fits and surgical scars from collapsed lungs, partial lung removal, and intestinal restructuring. The accompanying digestive problems—the digestive system also has mucus—make for some pretty wretched farts. It’s not pretty or romantic, and the filmmakers showed the disgusting aspects in a non-judgmental way. This “grossness” is authentic to the experience of CF.

Cole Sprouse in 'Five Feet Apart'
Photo by CBS Films

Will and Stella’s relationship is complicated because they both have CF, and can’t be close to one another or risk transmitting infections. But more than that, it’s complicated because Will has Burkholderia cepacia, a particularly nasty bacterial infection that, once contracted, eliminates your option to have a lung transplant. It’s no joke. If Will gives B. cepacia to Stella, he’s eliminating her last option to live, effectively killing her. It’s a bacteria strain that everyone with CF knows well, and seeing a mainstream film about the complications of having contracted B. cepacia was both mind blowing and a testament to the care and research that went into the making of the film.

Five Feet Apart also delves into the nuances of everyday life with CF. Things like feeding tubes, chest catheters, and even a sinus polypectomy—a surgery so common among CFers that I had the exact same surgery the morning following the screening. The film destigmatizes the use of masks and gloves to prevent infection in crowds. It’s also empowering because Five Feet Apart sexualizes its characters, despite the way films usually portray people with disabilities asexually. Characters with disabilities got to be the stars of their film, rather than having their story told from the perspective of the able-bodied.

Five Feet Apart also shows the emotional struggle that comes with fighting CF. Early in the film, Will stands on a rooftop ledge—presumably wrestling with the choice between slow, painful, inevitable death from B. cepacia and ending his own life. Such ideation happens in CF because depression and anxiety are so common. Not taking your medication is considered self-harm by a lot of psychiatric professionals who deal with CF. Unlike the general population where suicide is an action to take one’s own life, with CF, simply stopping medications and treatment is enough to die. Everyone with CF has their own prerogative, and their own method of coping. Will is apathetic about his meds, non-compliant with his treatment, and welcomes death. Stella is self described in the film as having OCD—she consequently follows her regimen meticulously and is completely opposite of Will in that regard.

This difference between the two CF patients is representative of a battle within us all. I watched my own cousin become non-compliant and die at 18. While fighting an antibiotic-resistant infection in a high-rise hospital in New York City, I found myself holding a chair and watching pedestrian traffic below, waiting for an opening to toss out the chair and jump. At a certain point, you fight so hard to live that you forget to live, and quitting—or ending your own life depending on how you look at it—becomes a measurable alternative. It’s terrible. And it’s part of what this disease does. Five Feet Apart acknowledges the hard truths of fighting a losing battle—the depression, the anxiety—and it captures the joyful junctures of this chronic illness alongside the hardest moments poetically.

Perhaps the most honest part of the film is that it never claims Stella and Will are going to live. The film acknowledges that CF has no survivors, only warriors. No doctor intervenes for a deus ex machina ending; no miraculous cures deliver a picture-perfect resolution. Stella never even gets to hug her best friend with CF, a devastating idea that is made worse by his death. Like Cystic Fibrosis, there is no happy ending. This fact alone rebuts most films presenting portraits of people with a disability. They’re fighting to live on their own terms. It’s bittersweet, and hits home even harder with its dedication to real-life CF activist Claire Wineland, who passed away last year from complications following her lung transplant.

It is absolutely not inspiration porn. It’s a portrait of the ugly realities for those of us fighting CF, and that is a good thing. And I hope this film opens the door for more movies about chronic illness, addressing everything from the exclusionary villainy of pre-existing conditions to the ADA loopholes that allow for hiring discrimination. I hope this film is just the beginning.

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This article originally appeared on VICE US.