"Five Feet Apart" Book Review

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Background

For those of you who aren’t familiar with “Five Feet Apart,” it is an upcoming movie that centers its plot around a romance between two teenagers who are in the same hospital battling cystic fibrosis (CF). What makes this different from other teen movies involving characters who have chronic or terminal illnesses, is that there are unique infection control guidelines in place for people who have CF, suggesting that they stay at least six feet apart at all times to avoid the spread of potentially deadly bacteria. So, in other words, the main characters in this story are “forbidden” to touch one another.

Because I am a person who lives with CF, this movie has been on my radar since the beginning of November 2018, when the teaser trailer came out, and everybody and their mothers decided to send me links or ask if I’d heard about it yet.

I hadn’t heard of the movie then, but my friend Gunnar Esiason had.. and he had already written a blog post warning about the dangers of romanticizing CF, endorsing risky behaviors that could result in death, and marketing it to teenagers. I agreed with him in a lot of ways. Of course adults who have CF can consider the consequences of their behaviors and make their own decisions, but teenagers? That seemed highly unethical, and they are obviously the target audience here. I felt like this movie could influence teens to make some awful, irreversible decisions.

Aside from my initial disappointment with the premise, I was a tiny bit hopeful too. There were reports that Claire Wineland had collaborated with the creators of the movie to ensure that their portrayal of CF was as accurate as possible. That made me hopeful that this movie could help spread awareness about the condition I fight every day, and I hoped that maybe it could also help bring in more charitable donations to support the community and fund research that could one day lead to a cure.

Sick Lit

As much as I hate the concept of “sick lit” because I recognize that it’s inherently a little.. sick.. to be entertained by suffering, I do think there’s beauty in some of the stories.

At their best: These stories can teach us things about illnesses that we might not have known before. These stories can help us become more empathetic and compassionate people. These stories can help us remember to pull our attention to the present moment because it’s all we really have.

At their worst: These stories can reinforce negative stereotypes about “sick people.” These stories can spread misinformation about illnesses or medical practices. These stories can exploit vulnerable populations. These stories can be harmful.

So when I found out that the screenplay for “Five Feet Apart” was being made into a book, I pre-ordered it right away. I needed to know whether this story was going to be one of the good ones.

Once the book arrived, it only took me three sittings to devour the entire thing.

Relatable

The first opinions I gave to my friends and family about “Five Feet Apart” revolved around how relatable some parts were, especially some of the parent-child relationship dynamics in the book. Take this excerpt:

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This was one of the places I had to put the book down and take a break. I cried. I went and hugged my dad. I cried some more. As many of you may know, life expectancy for CF has been steadily increasing as medicine and technology advance. When I was born, in 1985, a nurse told my dad that I likely wouldn’t see my 16th birthday. I’ve outlived that estimate times two. What Stella’s mom said to her there.. is just so familiar.

If you’re a person who has CF, or if you have a family member or close friend who has CF, you will likely find parts of this book relatable. There’s bits about feeling like a problem that needs to be solved, bits about wanting to withhold health information from loved ones to spare their emotions, bits full of melodramatic teen angst:

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and honestly, all kinds of juicy emotional bits.

Aside from being relatable on an emotional level, a few of the medical aspects were relatable too.

Some things, though, were obviously altered, omitted, or made up for the sake of the plot.

Truths

  • The medical devices (ports and gastric feeding tubes), breathing treatments (nebulizers), and physiotherapy (high frequency chest wall oscillation vests) included in the story are realistic. They’re not the options that all people who have CF utilize, but they are actual options. I would have liked to have seen some more variety there, since we meet three different individuals who have CF, but I suppose a limited accurate representation of these things is better than the inaccuracies we have seen in many other media depictions. I understand that this could have been a conscious choice made for the sake of not overwhelming the audience.

  • Some oral medications (modulators and digestive enzymes) were presented accurately too, but I’m really confused by the pills-in-pudding thing. I know some people who have CF do have trouble swallowing pills, but that’s usually dealt with by opening capsules and pouring the contents into something spoonable (like pudding) - not the whole pills. I think it would have been more realistic to have the characters swallow a handful of pills in one gulp, because that’s a skill that most of us have honed by the time we’re teens. Or again, it would have been nice to present more variety; they could have made one character a pro at swallowing pills, and another need pudding. I don’t think there was any mention of other oral medications (like steroids, pain meds, anti-nausea meds, or even fat soluble vitamins), which maybe was done on purpose for simplification too.

  • When admitted to the hospital, people who have CF get their own rooms as part of the cross infection precautions. This is accurate in the story, but there’s no mention of the reasoning.

  • The thing about B. Cepacia disqualifying you from receiving a lung transplant is mostly true, but there are some transplant centers that will do it. So actually, I guess that leads us into the next part of my review..

Lies

  • The clinical trial that Will is participating in.. does not exist. Nor do the others for which his mother has traipsed him around the world. The writers disclose this at the end of the book, and I really hope they do so in the movie too.

  • In my experience, patients who culture B. Cepacia are not allowed out of their rooms if they’re located on the same floor as other patients who have CF. Usually, they’re located on separate floors entirely, and still not allowed out of their rooms. Obviously, this reality had to be ignored for the sake of the plot. The fact that one character cultures this bacteria is a pivotal part of the conflict.

  • The writers ignore that HIPPA is even a thing. If you’ve been to a doctor’s appointment in the last 26 years, you’ve likely signed a form designating with whom (if anybody) your providers have your permission to share your protected health information. Healthcare providers are not allowed to disclose information about any patient to anybody else, without consent of that patient (or in the case of children, the consent of their parents). I get that this is also a necessary omission for the plot, but I feel like the writers could have at least nodded to it.. like, by having the nurse who is somehow assigned to all three of the characters who have CF mention that she could get in trouble for sharing.

  • Which brings me to the next inaccuracy: the nurse is assigned to all three of the characters who have CF. No nurse or pulmonary tech is ever assigned to more than one patient who has CF, as an additional “isolation procedure” precaution against cross infection. Admittedly, because I’ve only ever been admitted to hospitals that house CFF accredited care centers, I don’t doubt that this might happen in some other hospitals.

  • There is no mention of doctors, nurses, or anybody else putting on gowns, gloves, and masks before entering the main characters’ hospital rooms. In real life, every single person who enters the room of a patient who has CF is supposed to “gown up.” There are special gowns that are supposed to be worn on top of clothes, along with masks and gloves, as part of the “isolation procedure” as well. I don’t know why this would be omitted. Aesthetics?

  • In the story, the characters who have CF store their medications on carts in their rooms, and administer them on their own. While I, an adult, have had approval to store and administer medications and vitamins that I brought from home (because I knew my hospital’s pharmacy didn’t carry them), I don’t think anything like that would ever be the case for children. I know some people have had to bring their own modulators to the hospital (because of access? cost?), but because those situations are exceptions, I don’t think it makes sense to portray them as the norm. Other (less serious) props could have been used to underscore Stella’s use of control as a coping mechanism.

  • There’s a major part of the story where all the teenage characters (three of whom have CF) gather for a meal, prepared by one one of the characters who has CF, in the hospital cafeteria. The character somehow gains access to the hospital kitchen, then wears and mask and gloves to prepare the meal, and presents it to the group on a table adorned with fancy-restaurant-style candles. This is just all around fantasy. It’s cute, and provides a setting for an important part of the plot to play out, but.. it’s not realistic by any means. It would have been slightly more realistic to have the character create something gourmet out of vending machine foods and things brought in from outside the hospital.

  • I’m not going to spoil anything, but the ending is also complete fantasy.

  • There is a very serious lack of sputum expectoration (spitting up mucus), a lack of gastrointestinal symptoms, and just a lack of all the things about CF that could be considered “gross” that I feel the writers should have tried to normalize if they wanted their portrayal to be helpful to the CF population. I know there are probably many people who have CF out there who are thankful that these things are omitted, but.. I’m a fierce advocate of shedding stigma.

  • There is also a lack of representation in regards to severity/progression of CF in the movie. Would it have been too much to include a fourth character who’s only there for a few days before heading home to finish their IV treatment at home?

The Review

I didn’t like the premise of “Five Feet Apart” when I first heard about it. But I gave the book a chance anyway, and I am still disappointed.

I found some things relatable, but that feeling of connection was betrayed by the inaccuracies, poor character development, and lazy handling of the premise.

I get that the screenplay was written before the book, and that a movie has a limited amount of time to develop characters.. but every character in this story lacked depth.

I hate the treatment of Poe’s character. They used him as a prop for Stella’s character. It felt a lot like they tokenized him too. He has an interesting backstory involving immigration and deportation, and is now a ward of the state, because his parents wanted him to stay in the United States for access to better healthcare. He has an exboyfriend who he has distanced himself from to spare him from dealing with the severity of his illness. But those things don’t lead to any emotional depth in his character, which they would, and should.

Will’s character is the “bad boy” cliche. He’s built up emotional walls because his living situations have never been permanent enough to allow meaningful or lasting relationships. His character has a lot of real and valid emotional issues surrounding his life and his illness.. but.. he falls in “instalove” in this story.. which makes it all seem like an act. I don’t like the implication that coping mechanisms can be so easily shed.

Stella’s character might be the most developed. She exerts control over lots of things to compensate for the things she can’t control. She has had some traumatic family experiences. She carries a lot of guilt. She has a weird obsession with staring at newborn babies, which may allude to fears that she has about post-transplant life in the movie, but is a totally undeveloped non-starter in the book. Stella also falls in “instalove” and invalidates any emotional depth we briefly thought her character may have had. Then near the end of the book, she makes (what I think is) a profoundly stupid decision that seems 100% out of character, in the name of “instalove.”

The “instalove” thing doesn’t work in this story. It doesn’t really work anywhere, but especially here, where there are huge risks that would realistically give two people who have CF major qualms. Also, seeing as how the creators keep saying that they made this “for the CF community,” they really should have put much more effort into this premise. They should have had the relationship develop slowly, at a pace that would have readers actually believing when Will and Stella make their choices near the end of the book. Since they didn’t, it just feels like lazy exploitation.

Frustration

I know this was long. I appreciate if you read this far. Seriously, thank you!

Now I can tell you: I wrote this for me, to make my life easier. I know that once the movie comes out, I’m going to get even more messages asking for my thoughts, and now I have a link to copy paste.

I will write one more (much shorter) update after the movie comes out, and then I will never write about this story again.

I want you to know that my life with CF doesn’t look exactly like any of the characters’ lives in this movie. I may eventually write some blog posts about my care plan, but for now, I’m keeping that information private. Thanks for your consideration and understanding.