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As some of you might know, a big part of why I started a blog was because of how much Claire Wineland inspired me. Claire was a young woman who got dealt a rubbish hand in life but still won. She lived her life despite having cystic fibrosis. And although she died last year at age 21, she achieved so much. She inspired thousands, reminding a lot of us with chronic illness that we aren’t alone; she even set up her own charity to help others living with chronic illness.
When I found out that Claire was a consultant on the movie “Five Feet Apart” about chronic illness and long term hospital stays as a teen. I couldn’t wait to see it. I was so sure that she wouldn’t let the right messages be lost. And although she unfortunately died before the movie’s release, her influence is clear throughout the entire movie.
As a fan and follower of Claire. The hidden Easter eggs throughout the movie which related to her made me smile. Stella makes her own YouTube videos like Claire did and in one scene, you can see a video titled “Claire’s Place Foundation” (the name of the charity that Claire set up). Haley Lu Richardson completely nailed her performance as Stella, doing Claire, the producers and every chronic illness sufferer out there justice. Stella’s inspirational speeches throughout the movie are unbelievably reminiscent of Claire’s on talks. They completely encapsulated Claire’s energy, optimism and determination.
A little spoiler
However, Stella wasn’t the only relatable character in the movie. Her love interest, Will, portrayed incredibly by Cole Sprouse, appears to be the brooding bad boy that is so irresistible. However, to those of us who know better, his attitude toward life is much more than that. Having lived his entire life with the knowledge that he will die young, Will has decided there isn’t a point in fighting it. His careless rebellion is a sign that he doesn’t seem to have anything worth fighting for.
What is the point in spending years in the hospital fighting for life when you will die at the end regardless? It doesn’t really feel like living; in fact, it is barely surviving. Will’s perspective is one that every chronic illness fighter will go through at some point, sometimes even more than once. The challenge is to find that something worth fighting for. In Will’s case, it is Stella that reminds him that his life can still have purpose.
Don’t worry. It’s a joke
Another character who I could find closely relatable is Stella’s best friend. Poe, another teen with chronic illness who is played by Moises Arias. Poe provides much of the movie’s comic relief but also has his serious moments. Soon to turn 18, Poe is concerned about who will pay for his hospital treatment once he is an adult. He has broken off a serious relationship so as not to be a burden on them, but is aware that the burden then falls to his parents. Although I know that I am not a burden on my friends and family. There are times when I can see how heavy the impact of my illnesses is on them and so I completely understand where Poe is coming from.
I have also been wary about getting into relationships knowing the impact that my illnesses can and will have on my partner. The things that these characters voice are things that have went through most, if not all, chronic illness fighters’ heads at some point. Hearing them spoken aloud is difficult, but also reminded me that I am not alone in this fight. There are others who feel like I do. There are lots of people willing to support us no matter what.
One final way that the movie really connected with me was through it’s key message. The movie tries to convey how isolated chronic illness can make someone. The main way it does this is by explaining how people with cystic fibrosis have to stay at a distance from each other so as not to spread bacteria. Everyone with a weakened immune system will understand this to some extent, although for those with cystic fibrosis this is even more vital. However, one of my medical conditions affects my nerves across my entire body, causing me all over pain 24/7.
It’s difficult to judge how bad the pain is, but all I can think to compare it to is whenever I have broken bones, which was nowhere near as painful. When anything touches me it makes the pain even worse; this can be my clothes, someone brushing passed me, or even sometimes just the air blowing on me. There have been countless times when I have been curled up in a ball. Crying in pain, and all I have wanted is a hug and yet I cannot bear for anyone to come near me. Hugging, holding hands, all those usual comforting things are taken away from me. It sounds silly, but until you cannot be touched you don’t understand how vital a connection it is. It’s like being isolated from the world, from life.