I know there is a lot of division in the CF community regarding the latest teen drama “Five Feet Apart.” People with CF are either excited because their disease is finally exposed to a bigger audience and then there are some that feel like Hollywood is making money off of a deadly disease and then there are some that say the movie does not depict what it is like to have cystic fibrosis.
Let me say this. I think the film Five Feet Apart is great for cystic fibrosis regardless of how it portrays it. What’s the old expression? Any publicity is good publicity? Awareness is being raised big time. That’s huge. One of the warriors from our book was the inspiration for the movie and that’s Claire Wineland. If you don’t know about Claire, google her or better yet, read the CF Warrior Project in May.
Anyway, my publicist said it would be great if I could see the movie and give my opinion. There have been several days over the last few weeks which I have tried to take a few hours and go to the theatre to watch it. It reminded me of being in college and being embarrassed by my disease and I could not for the life of me open the door to my room after doing my treatments in fear that people would ask what that loud noise coming from my room was. I couldn’t understand for the longest time why I couldn’t turn the knob but over time it has donned on me that I didn’t want to stick out because of cystic fibrosis. Regarding this film, it’s not about feeling alienated. It’s about the fact that this movie hits way too close to home.
I have cystic fibrosis and have known this fact all my life. I’ve seen patients that were on death’s doorstep and I’ve had so many friends pass away that I can’t even count. Seeing a movie with two CF patients and watching them slowly deteriorate is just not something I’m ready to do. I might be a CF warrior but that doesn’t mean I’m not a human being and have real emotions. Now that doesn’t mean I won’t see the movie tomorrow or the next day or when it comes out on Netflix but I have a fear that for someone like me who deals with anxiety and clinical depression that a movie like this can have a major effect on my attitude. Then I worry…what if my wife sees it one day and it really hurts her? And what about my children? They know what daddy has. It’s so difficult for me to sleep some nights thinking about this.
I have ordered the book and plan to read it over the next week. The advantage of a book is that you can take breaks. I will need them.
The tough part about watching people die with this disease is not just the heartbreak of losing friends but it’s also knowing that these people share my disease. I could very well have the same struggles one day and I’d prefer not to think that way but rather enjoy every day that I get on this earth.
I’m still an advocate of the movie and the book because both are creating amazing awareness for a disease that only affects 30,000 Americans and 70,000 people worldwide. This is an opportunity to raise some eyebrows. Look at Ali and Christina from America’s Got Talent, both in The CF Warrior Project. Their appearance on the show crashed the CF Foundation website. Then there’s “Alex: The Life of a Child.” The 80’s TV movie along with the book with the same name brought millions of dollars into the CF Foundation. I saw that movie as a young boy though and it absolutely crushed me knowing that Alex had the same disease as me and later finding out she did not even make it to her ninth birthday. Great awareness for CF but not great confidence for me.
I just want a cure for cystic fibrosis for everyone who fights it and in memory of those we have lost who fought so hard to battle. Whether it takes a movie, a book, a social media movement, or whatever to help fund a cure for cystic fibrosis, I am on the bandwagon.
I am just not ready yet to walk in the theatre.
Live your dreams and love your life.
Andy