A CFer’s Thoughts on Five Feet Apart

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NOTE: If you have not seen the movie yet and do not want spoilers, I encourage you to read this post at another time.

This is your last chance.

OKAY. SPOILERS AHEAD.

 

Oh man, y’all. WHERE. TO. BEGIN.

I hope you’ve heard of the most recent film, Five Feet Apart, that officially comes out today, March 15th. If you haven’t-here’s a brief overview before I dive into my personal thoughts:

Two teenagers living with cystic fibrosis (CF)-a genetic, terminal illness-meet during their admission to Saint Grace Regional Hospital. Stella and Will. They are not friends. At first. But then, they become more than friends as they do breathing treatments together, take pills, and do all the things CFer’s must do to stay alive. They do it all together. Well, over FaceTime. You see, it’s strongly encouraged that people with CF stay at least six feet apart from each other. That’s right. Six feet, not five. This is a rule we are encouraged not to break so that we don’t share bacteria or germs with each other and get the other sick. It’s to protect us from each other. This is something that not many people know about CF.

So where does the five feet apart come in to play? Stella recognizes that she loves Will. But they can’t touch. Can’t even hold hands. She finally realizes that CF has stolen so much from her, that she wants to steal something from it-one foot. Just one foot, so she can be closer to Will. So that’s exactly what she does.

I’ll stop there. Really, spoilers are coming. Get out now if you don’t want them!

When I first saw the trailer for Five Feet Apart, I cried. I was just scrolling through my Facebook feed one day, and there it was. I was SO excited. Many people have no idea what CF is, let alone what it’s like to live with an illness that will most likely take your life sooner than you’d like. I was PUMPED to know that CF was going to be the backdrop for this love story.

As word got around about the movie, there were mixed emotions in the CF community. I felt it was half-and-half. Many were excited, as raising awareness for CF is a really big deal for our community. Like I mentioned previously, many are unaware what CF is. In fact, according to the director of Five Feet Apart, Justin Baldoni, only 3% of Americans were aware of what CF was prior to this movie coming out.

However, there were also many CFers out there that thought it was terrible they were using CF in this way. We are being exploited! They are making money off of our daily lives and every day struggles! Yeah. Money is being made. But that’s business. In my eyes, any publicity is good publicity!

Except for when the ad campaign started. Now THAT pissed me off. And it actually made pretty much the entire CF community pretty upset. I won’t go into that here, as I want this to mainly be about my thoughts on the movie. But, if you want more info, you can visit my Facebook/Instagram page, or message me directly!

Another one of the main concerns about this movie coming out, was that obviously, it was going to attract a lot of people with CF. We want to be the first ones to see a movie about our disease! But again, six feet apart at all times, people! So we had to make sure it was known that precautions must be taken.

If you (a CFer) choose to go to the theater to see the movie, you are encouraged to:

A. Wear a mask (a recommended, safe mask!)

B. Gloves

C. Use hand sanitizer

D. Use Clorox wipes to wipe down your seat

E. Wear purple (the color for CF) so other CFers know where NOT to sit

F. Sit at least six feet apart

 

Once tickets were for sale in my area, I made sure to buy tickets to the first showing (Thursday at 7:00 PM), and we got tickets for my parents, sister, Jason and I, with plans for me to sit in the middle, ensuring I wouldn’t be sitting by any other CFers!

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I also read the book in preparation for the movie, and I’m so glad I did!

When we got to the theater, we grabbed snacks and I put my mask on. We found our seats and I put on hand sanitizer and gloves, then wiped my seat down from top to bottom. Honestly, I’m probably going to do this any time I go to a movie theater. That seat was NASTY. Literally, the Clorox wipe was brown. Ew.

I watched as a couple of other people with masks came in. People I’ve only seen/talked to on Facebook. Not that I haven’t been around other CFers before. We have our Great Strides walk in May, and the Taste Tour event in October. We’ve talked and waved to each other from afar.

But this was different.

This was a movie theater. I was seeing a movie with other CFers! This is unheard of! We were actually doing something fun together (somewhat). It was, honestly, a really cool feeling. Any time that I heard coughing in the theater, I smiled. Not because it was funny-but because I knew it wasn’t some sick rando- it was someone else who had the same disease as me!

(As a cool side note, a friend of mine, Alex McLennan, also has CF and lives in the Dallas area. We bought tickets for the same show time, so it was really cool to watch the movie at the same time, and then talk about it over text later!)

When the movie started, my eyes already had tears in them. It was so overwhelming!

The movie starts out by showing Stella (Haley Lu Richardson) with her friends in her hospital room. She’s helping them pick out bathing suits for the school trip they are going on, without her. Why can’t she go? She got sick and is now admitted into the hospital-story of a CFer’s life. I’m not admitted to the hospital very often-only twice in the last 20 years for CF tune ups. I’m lucky. But that doesn’t mean I can’t relate. How many times have I missed out on something fun, or had to cancel plans because I don’t feel good? Too many times to count.

Stella then meets Will (Cole Sprouse), who is a rebel and hates doing his treatments. He hates doing them so much, that he just doesn’t do them anymore. He says, “It’s just life. It’ll be over before we know it” and “we are breathing borrowed air”. Some perspective, huh? But that used to be me.

Growing up as a teenager, I was rebellious. Didn’t do my treatments. In fact, I went to severe lengths just to FAKE doing my treatments! Being hospitalized my sophomore year of high school did nothing for me. My parents begged me to do them. I didn’t care. It wasn’t until I suffered from depression the summer before my sophomore year of college, that I finally realized my purpose in life. And I began to do my treatments.

If you know me, you know I’m a planner. I’m organized. I’m what you call, “Type A”. I’m a one on the Enneagram, if you’re into that. I love me some organization! That’s how I relate most to Stella. She is on top of her treatments (and Will’s) at all times! She created an app to help keep her pills and treatments organized. She has control issues and she knows it. Hiiiii. Meet Jordan!

If I wasn’t so organized, I’d probably be dead. Seriously. Okay, maybe not. But I would not be as healthy as I am right now! Organization is key for me to stay on top of my pills and treatments! I haven’t always been perfect at it, but it truly helps, and I’m more on top of my CF than I’ve ever been!

Then, we meet Poe, played by Moises Arias. Stella’s BFF. Poe brings a lot of hilarity to this movie. Jason and I both agreed he was our favorite part because everything he said was hilarious! But, halfway through the movie, Poe dies. Right after he spent time with Stella and Will. He was fine just hours before his death.

And that, y’all, was so real.

I know way too many CFers whose life was taken far too early because of this terminal illness. And you know what? For a few of them, they were fine. Sure, their lung function was declining, but they were fine. When Poe died, all I saw were the faces of the ones I knew and loved with CF who had already passed. Christian Lincoln (my cousin). Claire Wineland. Lea Faraone. Elyse Montanez. I couldn’t stop crying. Tears ran down my face and neck before I could catch them with my tissue, as I thought of those women whose lives were taken by this disease that I still have to live with. It hurts just to write this.

Going back to before Poe passes, Will and Stella go on their first date. It was on this date that there were two sensitive topics addressed between the two. As Will and Stella sit on the hospital pool’s edge, with their feet dangling in the water, they talk about dying and what they think it might look like, feel like. They imagine what that last breath is like. Will says he thinks about it all the time. Here are Will’s words, taken directly from the book:

“That’s how we are going to go, isn’t it? We drown. Just without the water. Our own fluids will do the dirty work. ”

“I think about that very last breath. Sucking for air. Pulling and pulling and getting nothing. I think about my chest muscles ripping and burning, absolutely useless. No air. No nothing. Just black.”

Shivers run down my spine when I read those words. But truly, if CF is what takes me home to Jesus, that’s how it will be. That’s what happens.

AH! This is getting intense, and a little sad. But, y’all wanted to know my thoughts! When you live with a terminal illness your entire life, you have the right to have thoughts like this and it be okay. I’m okay! I promise!

The second sensitive topic during their first date, is in regards to the scars. Will tells Stella how beautiful she is, and how much he just wants to touch her. Stella is shy and tells Will she doesn’t want anyone to see her. She has too many scars. She has a feeding tube. She isn’t sexy.

Girrrllll. I feel ya! I’ve always been thin. I remember once, my freshman year of high school, a peer of mine asked if I was anorexic. You can imagine how that made me feel. I don’t have a lot of scars like Will and Stella have, but I do have the feeding tube. And I agree. It’s not sexy.

But it saved my life. And you know what? I got engaged two days before I received my tube. I got married a year later! My husband loves me and thinks I’m gorgeous and sexy. Do you know how I know? He tells me all the time. He loves me for me, and not what I look like (or don’t look like). It’s the best feeling to be loved by someone in this way, and I thank the Lord daily that he gave me Jason.

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So in all, what did I like the least about this movie?

They need to teach those actors/actresses how to cough like a CFer! Those coughs were so pitiful y’all.

That’s it. That’s my only complaint!

What did I like the most about this movie?

It was real. Raw. Powerful.

They had medical professionals on set to make sure that what was included in the movie was realistic. They did a great job! The pills, the AffloVest, the names of medications, the procedures, risks of procedures-it was all great! One thing I will point out though, was that the nurses did not follow HIPAA-the Health Insurance Portability and Accountability Act. This act basically provides data privacy and security provisions for safeguarding medical information. Essentially, don’t talk to patients about other patients. This was broken quite a few times! Also, I work in a hospital, and not many CF patients are placed on the same floor and allowed to roam the halls at all times. It could be different at other hospitals.

So, what are some things to keep in mind about this movie?

It’s not a documentary. Five Feet Apart is a chick-flick. It’s an American romantic drama. It’s not 100% about CF and it’s not 100% accurate. It’s about two teens who fall in love and just happen to both have CF, making it impossible for them to be together.

I’d also like to point out that CF affects every person living with it, differently. Some of us live in the hospital. We may be on a lot of the same meds, but not all of them. Some of us live long enough to contemplate starting families, going to college and working full-time, while others of us die way too soon. Some of us need double-lung transplants before we turn twenty years old. We are all so different. There is no way that the director could have included stories completely similar to all of ours. This is just a snapshot.

Another thing to keep in mind that my cyster, Alex McLennan pointed out, is that yes, these two teens weren’t allowed to be in a relationship because of the six feet apart rule. But the reality is, we can’t even have face-to-face friendships because of this six feet apart rule. We are forced to get to know each other via social media platforms, texting, FaceTime and other apps, like Marco Polo. Let me tell you. Nothing hurts worse than not being able to be around the only people that know what you’re going through. All we want is to be able to go get coffee, have lunch together, GO TO THE MOVIES-you know, just be able to do normal things that we do with the rest of our friends. But if we want to stay safe and not get yet another lung infection, or end up in the hospital, we must stay away. We are forced to stay away. Like my friend and cyster Alex said to me tonight, yes, Will and Stella fell in love. But I love my friends with CF…

Another thing-taking pills in chocolate pudding is gross. I tried it. No thanks.

 

Lastly, what do I hope you take away from this movie?

I hope you know a little bit more about what cystic fibrosis is and what some of our realities are as people living with this disease. It’s rough. Really rough. Some days are harder than others! Some days are completely normal. But every day, I take approximately 40 pills. I do 3-4 different breathing treatments. I have a vest that I use for 20 minutes/day to help loosen mucus. I cough up mucus. I tube feed at night. I s.t.r.u.g.g.l.e. to gain weight. Yes, even with the feeding tube.

But I hope you also know that I don’t want your pity. WE don’t want your pity! We don’t take any day, or any breath, for granted. We celebrate life on a regular basis! We love each other well, even from afar. We take challenges head on. We fight to live the best possible life, because anything is better than living with CF. We love deep, laugh often, and cry a lot.

I loved Stella’s idea to steal something back from CF. After all, it had already stolen from her. CF does put a lot of restrictions on us at times. Like Stella says, we are basically doctors by the time we are 12 years old. CF becomes our life. But, only if we let it. I choose to steal my life back from CF. I chose that several years ago, actually. I choose to live every day fully and without regrets. I’m not saying I do that every day, but it’s definitely a goal. I choose to steal joy back. It can’t take that away from me, even though it tries hard to every day!

I hope you are encouraged to read more about cystic fibrosis. I hope you share what you know about CF with others, because awareness is a big deal! Get involved with fundraisers/events in your area to help raise money for a cure for CF! Did I mention that? There isn’t a cure. We could really use one.

If you feel led to give to the Cystic Fibrosis Foundation and help fund research for a cure, please visit https://www.cff.org/ and DONATE!

I’d love to hear your thoughts on the movie, and as always, please feel free to reach out to me if you have any questions on Five Feet Apart, my life living with CF, or cystic fibrosis in general.

**Please note, this film is rated PG-13 for thematic elements, language and suggestive material.

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