By Beth Sufian
I saw the movie Five Feet Apart and LOVED it. It was an incredible experience. It has a beautiful message of hope and the importance of friendship and accepting yourself and your situation.
Wipe movie reviews and online comments out of your mind. Create your own opinions about the film, but first, allow yourself to feel the incredible experience of sitting in a movie theater, watching a major motion picture with the three main characters who have CF, just like you.
Honor the memory of Claire Wineland who consulted on the movie and made sure the director and actors knew about how she lived her life with CF. The actress in the movie does an incredible job conveying what it is like to live life as a person with CF. I felt the spirit of Claire whenever the character Stella was on the screen.
The male lead character, Will, reminded me of so many teens I met when hospitalized in the 1990’s. The character is affected in positive ways when he connects with others who have CF. The other character with CF, Poe, expresses his fears and shows how one can have a deep love for a friend.
I thought I would cry a lot during the movie but actually I was so engrossed in the story I think my brain didn’t want any tears to block my view. At the end when a picture of Claire came up on the screen the tears started to flow. Today I saw the movie a second time with my staff who work tirelessly on the CF Legal Information Hotline. My staff cried so much that their noses were red and their eyes were puffy. Everyone was deeply moved by the movie.
The depiction of what people with CF endure daily is extremely accurate and the director takes the time to show scenes with the characters doing breathing treatments, using the Vest, accessing their G-tubes, and wearing oxygen.
I thought the characters taking off their masks at different points in the movie was very realistic. Many people with CF do not want to wear a mask in the hospital or in CF clinic. This is a reality. Some people with CF follow cross infection rules set by their hospital or CF Center but other do not. I think the movie raises many important questions about the effect of cross infection rules/concerns within our community. Some people are terrified of people with CF and others find safe ways to be friends like meeting outside or communicating online.
Our CF community is made up of all types of people with varying levels of health. We need to share the stories of those who have serious health problems and not just stories of people who run marathons and climb mountains.
The movie shows us that a person with CF can be sick and still have a successful life. In fact, Claire spoke about this often in her videos which can be found online.
Every day I speak to people with CF who call the CF Legal Information Hotline and tell me they think their life will be worthless if they stop working. I tell them their life is valuable regardless of their ability to be employed. Being employed should not be the way we measure success in the CF community. I think those who retire from employment to spend more time taking care of themselves are extremely successful! There are many ways a person with CF can help others in retirement. Join us at CF Roundtable and you can do great things.
In 2019, let us join together and support each other and embrace our differences.
*For those of you who would rather watch Five Feet Apart at home when it is released online but want to watch a CF movie now I suggest watching the Power of Two Movie. It is a documentary about the incredible twins Ana Stenzel and Isabel Stenzel Byrnes.