I'm going to preface this post with the fact that there will most likely be some spoiler alerts in regards to the movie. If you read the book, honestly, the movie very closely follows it, so there won't really be any spoilers for you. If you haven't seen the movie, you plan too, and you don't want to know what is going to happen, don't read any further.
Chris and I read the book together. So I expected to ugly cry more than I actually did! As I said before, the movie very closely follows the book, so I think knowing what was coming, I could mentally prepare myself and didn't cry as much as I had originally thought I would.
I did cry at parts, parts that really resonated with me. Quotes and moments that I could feel as part of my own story, those inevitably brought tears. A few times they rolled down my face and I didn't even recognize at the moment how poignant what had just happened was, until I felt the hot sting down my cheek.
I liked the movie, as much as someone can like a movie about a terminal illness. If you have it in your head that it's going to be like A Walk to Remember, or The Fault in Our Stars, you're wrong. I don't know, maybe you're not. I walked in to those movies, having read those books as well, but I didn't have the disease the movie was portraying. It felt heavier, less cinematic to me, more real...
This was different for me.
I walked in to a theatre to see a movie trying to pay homage to what I live with on a daily basis, knowing full well it wouldn't 100% stand up to my life and the 30,000 other Americans living with CF. I knew walking in that what I saw on the screen was going to be a Hollywood adaptation, but also, knowing they had worked with Claire Wineland (a prominent person in the CF community) to try and get things right, I had high hopes.
In the book, Stella (the main female character) has a lung function of 35% (if you read my previous post, you know that's where I am). Unlike me, she's on oxygen pretty much all the time, and is on a lung transplant list. Will (the main male character) is also on oxygen, but he has B. Cepacia and is therefore not eligible for a lung transplant. *While many transplant centers will not transplant for people with B. Cepacia, there are some centers that will, so this was a little bit of a false piece of info from the movie.
Stella is very organized, she makes to do lists daily - my sister, Heather, leaned over to me and was like, "OH My Gosh...She is YOU!" Ha!
Chris, Heather and my brother - in - law Shawn all went with me
Will is completely over CF, he's come to the point where he believes he's going to die soon no matter what, so why try anymore. He's on a trial drug to help with B. Cepacia, his Mom wants him to do it, so he is.
I grew up in a time before the Cystic Fibrosis Foundation had all these rules about being six feet apart. My Mom joined a CF Mom's group when I was diagnosed. All the Moms were stay at home Moms at the time, so they got together once a month, YEP - we kiddos came along, and they chatted about how life was going, their struggles, their triumphs. While the kids ran around and played together...breathed on each other (no doubt). Once a year we went to a CF conference in Indy. It was a weekend long thing. We stayed at a hotel, our parents went to break out sessions to learn about new medicines, treatments, etc. And the kids? We played together, we went to our pow wow's, we swam together...we were most definitely not six feet apart.
I think this was a huge part of why I view CF the way I do. I made lifelong (some shorter than should have ever been) friendships with people who absolutely know exactly what I go through every single day. I can't really speak for Heather, but I would guess that being with other Siblings of CF was a major plus for her. She had other people to talk to about what it was like to have a sibling deal with things she doesn't have to, and how sometimes it's could be a bummer and hold her back from fun stuff if I was sick.
So, while I understand the point of these cross contamination rules, I don't want to say I don't care, but honestly, I think it's almost more detrimental in some ways, than helpful. If someone else doesn't want me within 6 feet of them because they want to follow that rule, I will respect their wishes, but my dear sweet CF friends, if you need a hug, and I am there, please know, my arms are wide open and my airway is facing the opposite direction!
Okay, back to the movie:
They explained what CF is, cross-contamination, and a few things that people with CF go through. But it was all based in the hospital. I wish there would have been more info about how those things are done when you're at home, and healthy. Treatments don't stop when you get out of the hospital. They start day one of diagnosis and continue daily until you leave the earth.
I've mentioned my regimen on Facebook multiple times...
Not everyone has a g-tube, I don't, but some do.
They didn't mention that some people have CF Related Diabetes, and how this brings a whole other bag of tricks to deal with it. I'm on an insulin pump because of CFRD.
They didn't mention that after a while, some peoples bodies become resistant to the antibiotics they're on and there aren't a lot of antibiotics out there to treat our specific bacterias.
They didn't mention that many of the primary IV antibiotics used can cause Ototoxicity, which means, you end up with hearing loss from them. I now wear a hearing aide in my right ear daily...Thanks Tobramycin!
I don't bring my own comforter set with matching pillows, decorative lights, mug of pens, and art work for the wall of my hospital room. Others might, but dear Lord, that's a LOT of crap to pack up after a hospital visit.
A respiratory therapist never came in to the do their treatments either.
I haven't been inpatient since 2005, so maybe things have changed. Maybe if you're constantly in and out of the hospital you do these things and have more independence with your care...I'll plead the 5th on this one.
What they did show...
You become friends with the other people on the floor...patients and nurses, your roommate (if you have one).
You roam around the hospital together and find things to do and get in to that you probably shouldn't.
That stuff is true.
I used to do wheelchair races with other kids. We'd go in a big room and there would be a tutor/teacher that came in every day and they would help us with our school work. Other times we had crafts and snack times, etc. I'd take walks through the hospital, find the library, ride the glass elevators up and down.
The isolation is also true.
Heather mentioned how the parents/families didn't seem to come much and that surprised her.
You all know me and my family, that is NOT at all how my family would ever handle an inpatient stay with me. In fact, the only time I really remember not having someone with me every day or night, was when I did an enzyme study the summer after I graduated high school. I wasn't even sick, I just had to stay so they could watch my input and output...and I was flabbergasted that my parents weren't going to spend the nights with me. In fact, I think they went to the lake while I was in...
But if I was sick, Mom or Dad or a grandparent was always there. Heather even came and stayed with me a couple times.
But even with a very supportive family, there can be some isolation...
As Chris said in the middle of Central Park in NYC, "I live with CF every day, but I don't LIVE with CF every day."
It can be isolating to be the only one to know what it's like to live with these lungs every day.
To look at a flight of stairs and question what your lungs will feel like after you climb them.
To wonder if you can, in a year, go on a mission trip with your husband, because it's harder to breathe when you're hot.
To think you may not be able to continue working full time or at all, because you don't know what the future holds and you want quality as well as quantity.
At one point in the book and movie, you mourn Stella's friend Poe and her sister Abby.
Survivor's guilt is real ya'll. In more ways than one, I'd argue.
I know people in the CF community that have passed away. Friends, fellow Cysters and Fibros. Some I knew personally, some I knew only through CF and connections we made on social media.
You feel guilty because you're still here...and they're not. Why do I get to be here and continue my life...why not them?
Then there's the guilt I feel for those still living, but who are doing much worse than me...
I feel that. It may sound stupid, but it's true.
I'm in lots of groups on FB and people are posting daily about how they're back in the hospital for the 6th time already this year (it's still March people...the 3rd month of the year), or they're sharing information on a 6 year old waiting for new lungs on the transplant list.
In 2 months I will turn 39 and I'm still kicking it on the 2 lungs God blessed me with at Birth! Why me, and not them too?
They showed the rage that comes with the frustration of doing everything you're supposed to do and still getting sick.
CF is a progressive disease. Yes, the new treatments out are tremendous and have given people back function they had lost long ago. But they're not a cure. And no matter how well you stick to your regimen, and do what you're supposed to do when you're supposed to, you still get sick at times.
Poe dies and Stella trashes her room. Out of anger for this stupid disease that neither of them can stop from progressing forward.
I get it.
All too well, I understand what it's like to sit and do treatments, time sucking treatments, and still walk in and find my lung functions have dropped.
You're supposed to see positive results when you do what you're supposed to, right?
CF doesn't necessarily work that way! It Sucks!
There are many people with CF who deal with Depression and anxiety on top of all that CF gives them already.
I have spent my life telling people that I have CF, CF doesn't have me. I won't let it get in my way. I won't use it as an excuse. It's true! I believe all of that.
However, I also recognize that at some point I have to admit that there are limitations because of it. And that is HARD!
So, I guess that's where I'm at with the movie...all over the place. HA!
I liked it. It gave an okay representation of CF, but there was so much missed all at the same time...mainly because everyones CF story is so different. But I didn't hate it and I didn't feel like it made CF look like a breezy walk in the park.
If nothing else, I hope it helps people learn a little more about CF. I hope people that meet someone with CF will at least be able to say they've heard of it, and feel they can ask questions.
So, if you have questions, feel free to ask, I'm an open book.
