I Have Cystic Fibrosis and This is What I Have to Say About Five Feet Apart

Hi. I’m Jenn. I have cystic fibrosis (CF) and yesterday I learned about Five Feet Apart.

A new-ish friend told me she had seen the trailer and burst into tears. After all, CF is a fatal disease and the median life expectancy is 35 years, depending on which source you trust.

So naturally the Five Feet Apart trailer was SERIOUS DRAMA because both the boy and girl have CF.

Of course, it’s a romance.
Of course, the girl needs a lung transplant.
Of course, the boy is a bad boy who doesn’t do his treatments.
Of course, they fall in love…

…but because they both have CF, they always have to be six feet apart.

OMG THEY CAN’T TOUCH EACH OTHER! FORBIDDEN LOVE! IF ONLY THEY COULD BE ONE FOOT CLOSER AND HAVE A MOVIE TITLE! I cringed so hard I got a cramp in my face.

Where do I even begin with something like this? I’m a copywriter and marketer, so thank you, I already know I am not the target audience for this movie (or book).

But since this book is supposedly ABOUT me, I do get to have an opinion. So take a seat.

My fatal disease and my pain are not a f — king plot device for your fantasies

Advocate Gunnar Esiason, who has CF and a famous sportscaster dad who raises money for CF, wrote on his blog:

Other people, like me, think it’s a pathetic for profit attempt to capitalize on a very narrow issue that gives a lot of people with cystic fibrosis extreme anxiety and stress: cross-infection between two kids with CF.

I am not famous and neither is my dad. But I know Five Feet Apart will become the prevailing narrative about cystic fibrosis and I just feel tired thinking about it. Tired, self conscious, uncomfortable, and embarrassed.

But, did you know? Five Feet Apart is a TRUE story! I have cystic fibrosis and I once dated a boy with cystic fibrosis!

So you better read my story if you’re going to watch the dreck that is Five Feet Apart.

I was diagnosed with CF at age 3, which is considered a late diagnosis. The year was 1982. My pediatrician refused to test me for CF because my mother was just being a “nervous” mother. Back then, “the doctor is God” was the prevailing wisdom. So don’t you dare criticize my mom for not taking me to another doctor. When Doctor Dumbass retired, she took me to different pediatrician who examined me and ordered the test right away.

My mom later told me, “Dr. Kelly called with the results, and he told us, if you’re lucky you’ll have her for a couple of years, so enjoy her while you can.”

That’s how dire the life expectancy was for CF. Most of us died in childhood.

But guess what, I didn’t die. In fact, I’m 39. When you have CF, you state your age with pride even when your youth-obsessed culture has left you for dead. Your age is a proud declaration of, “I BEAT THE ODDS, BITCH!”

Do I look like I’m dying?

Some day I’ll need a lung transplant. But not anytime soon. I have my mother to thank for that. Shortly after I was diagnosed, my mom told 3-year-old me,

“You have cystic fibrosis, and that means you’ll have to take pills before you eat. Okay, go play outside.”

Yeah, my mom was that matter-of-fact and low-key about it. That’s the greatest gift she gave me: the great attitude I have about having CF.

She also made sure I ate 3500 calories per day, which I hated doing. I kept daily calorie journals and eventually I said, “Screw this, just give me the feeding tube.” The feeding tube was worse, especially since I had it from ages 11–14, just the time you want to have something weird on your body that shows under your shirt. But it did have a big positive impact on my health — eventually.

Growing up, I was hospitalized about once a year for an “exacerbation” as it’s known in the biz. People with CF always have an infection. When the infection gets worse, it’s time for the reinforcements: intravenous antibiotic therapy, more breathing treatments, more airway clearance.

The food was so bad and I had to eat even more food, to keep my weight up.

So my mom and dad would visit and bring in actual food.

To this day, when I call my mom and dad to tell them I’m in the hospital?

“When can we bring you a grinder?”

So during one of these hospital visits, I met Dave

1993. I was a 14-year-old freshman in high school, kicking off the school year with a BANG: in the “clink” for one of my tune-ups. I headed straight for the play room, looking for my little hospital buddy Deirdre who had sickle cell disease.

Instead, I walked into the play room, and — across tables filled with board games, finger paints, and waxed macrame cords — my blue eyes met his blue eyes. I broke off our gaze and coughed a lot to hide my blushing face.

This was Dave, the other CF kid. He was a year older than me.

He was cute. Dreamy, even.

We circled each other slowly, trying to act like nothing was happening in front of the 5 other kids there. Eventually he expressed interest in the macrame bracelet I was somehow making. He sat next to me. He kept making me laugh.

All of this “six feet apart” stuff didn’t exist back then.

So I absolutely got to hang out in the play room with Dave.

Sorry, teenagers. No pontifications about the importance of human touch.

I also hung out in his room (door open, sorry teenagers) and he tried to teach me how to blow “smoke” rings with the nebulizer.

I wanted to kiss him so bad! But we were never alone. Should we break into the play room? Should we sneak off the floor and find an empty room? Dave had no qualms about getting caught, but I had qualms. And then I went home.

Instead I got his home phone number, and called him a couple of times before asking him to my Homecoming dance.

And we totally went.

It was so hot we burned up the dance floor and then we made out behind the school.

JUST KIDDING. It was incredibly awkward. Probably because we weren’t both strapped to oxygen tanks, forbidden from touching each other. If only we’d had the six-foot rule and an FEV1* of less than 30%. SIGH.

And then we lost touch, because really, the only thing we’d had in common was our hospital stay.

I don’t know if Dave is alive now or not.

In 2017 I was in the hospital, and a member of my care team (we’ll call her A) came to visit me. I had heard that W, another CF patient, had died.

I didn’t know W very well even though we’d both been on the Adult Advisory Board together. The Board only met once a month on the phone. But W got me thinking about the patients I knew on the Board. I’d lost touch with them.

Were they still alive? I had no idea. So I started naming names, asking if they were still alive.

• The girl with the sodium chloride tattoo? Yes, she was still alive.
• What about R, one of the first to take the new gene therapy? Yes, she was still alive.
• What about J, who I hung out with during 3 different drug trials? A didn’t know her. Not a great sign.
• What about S, who passed the physical exam for the military with flying colors, but obviously didn’t enlist? Yes, he was alive too.

“Oh hey, what about T?” I asked, slapping my forehead. How had I not thought of T? And how we had bonded over how intense it was dealing with the parents-of-CF-kids online (it’s really intense)?

T was not alive. T was dead. I had to repeat it. “T died? When?”

A couple of years ago.

This one hit me hard. As far as I had known, he’d been doing well. His son had to be in college by now…it felt so weird and wrong and sad that I kind of shut down and listened to the incessant beeping and whirring of the hospital for the rest of the afternoon.

I have a very strict rule for myself: if I have a significant setback, or get a piece of really bad news, I am allowed one day and one day only to feel sad and scared. Examples:

• When I found out I’m developing cystic-fibrosis related diabetes (CFRD)
• When I blow a bad FEV1* on my pulmonary function test
• When I cough up blood
• When I have to avoid laughing because it’ll take too much out of me

Usually I only need an hour, if that. Remember my mom? “Go play outside.” So that’s what I do, because I eschew feeling sorry for myself. Look at celebrity CF-haver Claire Wineland. **

It was impossible not to love Claire. When I saw her video about why staying in the hospital was fun, I was like, “You FEEL me, girl.” I mean, how many times did the nurses catch me riding my IV pole down the hall?

Claire was so upbeat and funny and she died this year at 21, a week after she received a lung transplant.

She was so young. And she did not feel sorry for herself.

So I don’t get to, either.

Every CF story is different. I’m an extraordinarily lucky 39-year-old with CF. I’m healthy and my lungs work.

And I reject the “Five Feet Apart” narrative on CF.

You can tell our story without exploiting us. See: The Salty Girls project. See: The Transplant Troopers 2014 calendar.

You can read and hear our stories without exploiting us. Go to YouTube and discover the hundreds of videos done by young people with CF.

And, you can do more than just creep our lives. Help our lives!

Help people with CF: The 5 things never to say to a person with CF

The only thing creepier than Five Feet Apart is the stuff strangers say (to me).

My life would be so much better if y’all would stop.

1. “You can eat anything you want and not get fat. I wish we could trade places.” Please just shut the f — k up. This is a stupid, insensitive thing to say. Or actually, you know what, you said it, you deserve it. Let’s get our trade on.
2. “Well I don’t want the dying part, just the part where I can eat whatever I want.” Yeah, you and me both, sister. But see #1. Shut the f — k up.
3. “Are you SICK?” How does invading my privacy help either of us, stranger? If I tell you, will you magically be protected from germs? No. If you’re that worried about getting sick, go live in a bubble and leave me alone while I cough my brains out. REALITY: you are more likely to make me sick.
4. “Cover your mouth. You’re disgusting.” Thanks, stranger, I’m aware of public health messaging. Sometimes these coughing fits sneak up on me while I’m carrying stuff. You’re just trying to shame me so shut the f — k up.
5. “Have you tried drinking warm milk / drinking warm milk with honey / not drinking milk at all / drinking a glass of water / Vick’s Vaporub / cough drops / prayer?” Sometimes I don’t think I’ll die of CF, I think I’ll die of being so irritated with all of the dumb health advice that gets foisted on me. I have a care team of CF experts, let’s leave the health advice to them, okay?

But for serious, it’s Giving Tuesday. Give to CF, not Hollywood

My favorite charity for cystic fibrosis is Cystic Dreams. They make small grants directly to individuals with CF who need help paying for things.

A few years ago I was struggling to make monthly payments on my percussive airway clearance vest. They were able to cover two of my payments.

Help me help out my friends. Who knows, the life you save could be the one who writes the next teen romance blockbuster.

Points of fact.

• FEV1 is a measure of lung function. We want that number as close to 100% as possible. Less than 30% is “time to talk about that lung transplant” time. Last week, I blew a 72%. WHOO HOO!
• Clarie Wineland’s foundation has given Five Feet Apart the thumbs-up. That’s okay. We’re allowed to have different opinions. MISSIN’ YOU, CLAIRE GIRL.
• Read Gunnar’s commentary on Five Feet Apart here. Favorite part? The snarky titles he came up with for the movie. BE MY FRIEND, GUNNAR.
• Salty Girls project here.
• Transplant Troopers 2014 story here.
• YouTube is here.
• Help people with cystic fibrosis here.
• Yes, I’m a writer by trade — read more of my work (and hire me!) at ObsessionEleven.com.
• No, I cannot write your weird romance novel.