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  • ‘Five Feet Apart’ Resonates as a Patient with Pulmonary Fibrosis.

    Posted by Charlene Marshall on April 3, 2019 at 1:42 pm

    Typically speaking I am not someone who regularly goes to see a movie in theater. I am just as content staying home and watching a new release from the comfort of my own home, while using some kind of legal steaming app or movie rental connected to my TV. There are a couple of reasons for this:

    • The cost of seeing a movie in theater (to get the full experience, including snacks) can be quite expensive. I also find the theater volume incredibly high, and I have some fear around loud noises due to previous ICU admissions and Post Traumatic Stress Disorder (PTSD). Therefore, if I do attend the theater, I prefer to go with someone who knows this vulnerability about me and can support me through it if needed.

     

    • Since my diagnosis of idiopathic pulmonary fibrosis (IPF) I am very mindful of staying healthy and take extra precautions to avoid known exposure to illness. The theater is a perfect place to unknowingly pick up a virus/bug, so I try to avoid going whenever possible. Or at the very least, I wear my mask and overuse hand-santizers!

    However, upon hearing about the release of Five Feet Apart – a new movie portraying the struggles of young adults living with cystic fibrosis (CF), I knew I’d have to see this in theater. While I don’t have CF, I suspected that I’d be able to relate to the content of this movie; especially the difficulty of being tethered to an oxygen tank as a young adult living with a chronic lung disease. To say the movie was relatable as a young adult with IPF would be an understatement. I loved (and hated, for various reasons) this movie and have no regrets seeing it in theater. If you enjoy watching movies in theater, I’d encourage you to see this but bring some Kleenex with you.

    I wrote about my experience watching this film in a recent column titled Five Feet Apart Hits Home For Patients with Pulmonary Fibrosis. I also want to share a column from a friend of mine with CF (post transplant now) who shared his thoughts on the movie as well, in a column called The Scenes in Five Feet Apart that Tore My Heart.

    As a patient with PF/IPF: do you have plans to see this film?

    Why or why not?

    Charlene Marshall replied 5 years ago 4 Members · 8 Replies
  • 8 Replies
  • Katie Bagshawe

    Member
    April 4, 2019 at 7:33 am

    Hey Charlene!

    I agree with your perspective on the cinema trips, they can be incredibly expensive nowadays so I don’t go all too often. I used to go quite regularly with my Dad until he was on oxygen, we had monthly passes that makes it a lot cheaper if you attend regularly. Once he was sick we went a handful of times but I think he always felt a bit self conscious of being out in public with his oxygen on, though once we were there he did enjoy being able to sit in a different environment and eventually turn his oxygen off and enjoy himself. But the effort of getting to the cinema can take its toll when there are limited accessible parking spaces. I did once take him to the theatre though which we both enjoyed heartily as it was the GreenDay musical, the band of which he was a big fan.

    I believe I’ve heard of this film so would enjoy going to see it, although I fear I may be a wreck with such a sensitive topic that brings it close to home. I watched The Fault in Our Stars a long time ago as it intrigued me with the protagonist being on oxygen, but I do find sometimes these portrayals can be quite unrealistic. Have you heard they are making a film about Aisha Chaudhary called The Sky is Pink? I haven’t heard of her until I stumbled across a news article but you can read a little about it here on the Wikipedia page. https://en.wikipedia.org/wiki/The_Sky_Is_Pink

    To be honest, it would be nice of there was a proper documentary that shows the true impact of living with lung disease, especially since there has been a recent elevation in attention on the impact of air pollution which has triggered communities to become more mindful of our lung health.

    • Steve Dragoo

      Member
      April 4, 2019 at 8:57 am

      Hi Charlene – thank you for sharing this insight.  To answer you, I have not been to a cinema in more than 8 years because my sofa is more comfortable and I can pause whenever needed.

      Surely if something helps us and lightens the load even a little, we should strive to do it.

      Wellness to you,

      Steve

      • Charlene Marshall

        Member
        April 4, 2019 at 12:12 pm

        Thanks so much Steve!

        Usually I am in full agreement with you – my sofa is much more appealing than the movie theatre. That said, going to see this film in theatre was a nice treat, and despite crying through most of it, I am so glad I went. I am going to soon write a post about priorities as a patient with PF, and I think I am going to start prioritizing more things that encourage my wellness, and I really enjoyed going to the movie so hopefully I can do this more often. Stay tuned!

        Charlene.

    • Charlene Marshall

      Member
      April 4, 2019 at 12:09 pm

      Hi Katie,

      Thanks so much for getting in touch and sharing your thoughts on this topic. There sure has been a lot of criticism among the CF / ILD community about this movie; just controversy on it being such a sensitive topic. If you feel up to seeing it – I’d recommend going with someone and it being on a day you’re feeling pretty strong as it does stir up a lot of emotions. However, I have no regrets about seeing it at all! I said to my friend that I’d never watch it again, after crying almost the whole film, but I flipped my mind on that and have wanted to go again with someone every day since seeing it a few weeks ago. If you treat yourself to a night out, I’d recommend it. It is nice to finally see a movie that accurately portrays the difficulties of life with a lung disease!

      I find this film much more relatable than the Fault in Our Stars, just FYI. I do like it still of course, but really enjoyed Five Feet Apart more.

      I will take a peak at the link you shared as well, thanks for leaving it for me to look at. I’ve never heard of Aisha Chaudhary, but I’ll look into this. Give me some night reading 🙂

      Take care and I hope this note finds you doing well.
      Charlene.

  • Cloud Mason

    Member
    April 4, 2019 at 8:28 am

    Hi, Charlene and Katie,

    I’m a serious film enthusiast and have put both films on my must-see list. I have encountered only two people out of all my family and friends who had ever heard of pulmonary fibrosis. I can’t begin to tell you how many times I’ve been asked, “What’s the name of that thing you have.”   Any movie that increases awareness of the IPF along with the issues involved for patients, caretakers, and family is a great thing.

    Thanks for sharing!

    • Katie Bagshawe

      Member
      April 4, 2019 at 8:59 am

      Couldn’t agree more! I love watching medical documentaries and was watching one a few months ago that was following teams working in critical care units. By chance a man was admitted with a serious chest infection, only in his early fifties I believe and it was first understood that it would be a reversible illness. Unfortunately as the episode progressed, the man got progressively worse, was intubated and after a series of diagnostic tests it was confirmed that he had Pulmonary Fibrosis. I was literally gobsmacked that they had covered it in their show, and to the extent of how cruel and sudden the disease could be. Unfortunately the man featured died a few days after being admitted. From the beginning of the episode he seemed fit and healthy, wasn’t necessarily relying on oxygen (he hadn’t been using it at home at all) and in the space of a few short days he had passed away. All in all it took up less than ten minutes of the hour long episode, but it was a double edged sword to see the sadness of his loss, but the bravery of his family for allowing them to feature his story and raise awareness. I’m not sure if it’ll be available outside of the UK but I’ll see if I can hunt down the episode to share just in case.

      • Charlene Marshall

        Member
        April 4, 2019 at 12:16 pm

        Wow Katie, thanks for sharing — I too am surprised it highlights pulmonary fibrosis! Despite it being a TV show, I hope it let folks know the seriousness of a lung condition and how quickly people can deteriorate. While it is really scary, it is important for people to know as well. I can imagine it stirred up a lot of emotions in you though, it would me too I think.

        If you do find it, please let me know, I think I’d really like to watch it.
        Cheers,
        Charlene.

    • Charlene Marshall

      Member
      April 4, 2019 at 12:14 pm

      Thanks for your kind words Cloud! Report back to me when you’ve seen the movies if you don’t mind, I’d be curious to hear your thoughts on how the film is portrayed. Five Feet Apart is focused on cystic fibrosis (CF) as a diseased as opposed to IPF, but still highlights the struggles of what it is like to live with a lung disease (being immune-compromised, managing medications, etc) and I was thankful for this!

      I also often get “hey, what is the lung disease you have called again?” so any awareness for lung disease is important. Curious to hear what you think of the films.
      Cheers,
      Charlene.

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