So it’s now been a few days since our sixteen year-old daughter, Meg, and I went to see “Five Feet Apart,” the movie in theaters now about teens who are battling Cystic Fibrosis (CF). I wanted to share my thoughts because I know many of you have asked me personally how I felt about it. I’ve gotten a ton of questions, so I’ll try to address some of those here.
Should I go see the movie?
YES! PLEASE go see the movie (or rent it when it comes out on Blue-Ray/DVD). It will give you some good insights into Cystic Fibrosis and a whole lot of sappy feels! Get some Kleenex, and prepare to ugly cry if you are a crier. 😭😉 Tell your friends about it and have them tell their friends.
How were you feeling about the movie before it was released?
I was actually very excited about the movie and the awareness it would bring to CF. In full disclosure, I was experiencing a whole range of emotions about this movie before I even saw it. Some questions arose in the at-large CF community around the sensitivity of some of the advertising campaigns, whether or not we as CF-ers needed to wear masks to the theater in anticipation of more people with CF being there and the increased risk of cross-infection, what the general reactions would be to the film, etc. There were a lot of STRONG emotions in the community and a lot of conversation ensued. I guess I would say I ended up going into it a bit charged up. I also was a bit worried how it would impact our sixteen-year-old daughter.
Did you wear a mask to see the movie? Do you usually? Is the six-foot rule really a real thing?
I went to the movie theater WITH a mask and ended up taking it off when I got there. There were very few people in the theater on a Monday night. All of us patrons were more than six feet apart. (Yes, the six-foot rule really is a reality for CF patients, and is a recommended standard from the Cystic Fibrosis Foundation.) I’ll admit I was curious if any of the other patrons attending had CF, but that was just a momentary thought. 😷 I don’t usually wear a mask to movies. My own personal preference for this particular movie was to be cautious and see how crowded (or not) it was.
How did you feel about the movie after you watched it?
In all honesty, the movie WRECKED me. Even though I had read the book beforehand and had followed the movie campaign closely up through release, it really hit me emotionally in places I didn’t expect. Private thoughts and feelings that I’ve had about living with CF were right there on the big screen for all the world to hear and while it was comforting to hear them being said because I knew someone else had obviously had them too, it was also a bit uncomfortable. A little weird, I know. I’m still mentally digging through it all.
The movie made me very SAD for all my CF friends I have lost who didn’t get to see it. Add a huge dose of “survivor’s guilt” and it required quite a lot of mental “unpacking” for me over the past few days. I still feel like I’m grieving in some ways. To be fair, it probably didn’t help that I was already grieving the personal loss of a friend (not a CF-er) that passed away last week. So there was lots of emotional punch personally.
The best part of watching it was the questions our daughter asked afterwards and the conversation that ensued. She handled it better than I did actually. I was really proud of the maturity she displayed.
Does the film give an accurate depiction of CF and is it close to what you have experienced as a CF patient?
As for the accuracy of the film, there were some things that weren’t completely right, but a lot more that were done so very, very well. I give A LOT of credit to the actors who showed such empathy and respect in trying to portray people living with the disease.
The medication and airway clearance (vest) “regimen” seen in the movie is pretty much mine to a tee. I’m not on oxygen often; maybe as support for a really bad setback, but definitely not around the clock. My lungs just aren’t there yet which is a blessing, I know. I also don’t have a g-tube for nutrition because I’m able to hold my BMI well enough with eating extra calories and taking my pancreatic enzymes. Middle age helps a lot around the waistline too. 😉
I have colonized pseudomonas aeruginosa that two of the characters, are assumed to have in their lungs (not b. cepacia), and I often culture staph as well as some other random bugs that I can hardly pronounce, let alone spell. 🤔 I also have aspergillus which is a nasty little fungus that my lungs are highly allergic to.
In the movie, the characters roam the hospital between treatments and I don’t have quite that freedom. I often experience severe CF-related arthritis/joint pain that only impacts about 5% of the CF population. My last hospital stay I was in bed all three weeks on doses of IV morphine and oral pain medications, so I was stuck in my room, which I think makes it tougher when you have to look at the same four walls all the time. No exercise is not good for a CFer’s lungs, but exercise becomes difficult when you can’t move. This is unfortunately a dilemma I have to think about a lot.
On the other hand, if I’m not having a joint flare-up and I’m in-patient, you’ll see me, my family, and/or friends hanging out in the atrium/cafeteria or walking the hospital hallways. I’ll be in the exercise room on the treadmill too. So again, the movie had some pretty accurate insights here, though I’ve discovered that different hospitals definitely have different policies. For instance, b. cepacia patients are seen at different clinic times and are hospitalized on different floors at my hospital as a precautionary measure.
Do you have friends with CF or do you participate in online CF communities?
Yes! I have made some really special friendships with people with CF online and in person from the CF community. I have co-chaired and spoken at lots of local fund-raising events, counseled parents with children who have CF, lead walk teams, served on patient counsels and speaking panels. Honestly, I do tend to hold myself to a certain distance though, especially as an adult. It’s difficult to lose friends time and time again, and as I get older, it’s happening A LOT. 😔 It hurts to watch people you care about get sick and die. As I mentioned earlier, sometimes I feel a bit of survivor’s guilt just being here when some people I cared deeply about have lost their battles earlier on.
I switched hospitals and CF clinics after 43 years of being a patient in one place, so I really don’t know a lot of the people at the “new” hospital. Still, every so often, a curious CF-er will stick their head in my room to say hi and introduce himself or herself. Bring it on. Love meeting new folks and sharing our experiences.
Do you have hope that a cure for CF will be found? How do you stay positive in your own fight with the disease?
There is SO MUCH GOOD happening around new treatments and strategies right now in the CF Community. I am super pumped for all who will benefit from them and excited to see what the future holds for both the older and younger generations. It is sometimes bittersweet as an older patient knowing that I may not benefit personally from some of the future advances, but I think for the kiddos who are being diagnosed with CF today, they are gonna see that cure in their lifetime. My hope is that I get to celebrate it with them!
My personal faith gives me hope and strength everyday, no question about it. God has blessed me with a gift of inner joy that seems supernatural at times, and I love that I can genuinely celebrate life in the midst of such a trying disease. I have my “down” days, but honestly I feel really lucky to be here and hope to inspire others who also battle the disease.
I want to help find a cure, where do I donate?
Go to the Cystic Fibrosis Foundation website at https://www.cff.org/
GOD BLESS AND EASY BREATHING!! ❤️❤️❤️