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    • #15757
      Bailey Vincent
      Keymaster

      My husband has never seen the movie Five Feet Apart before, so I decided to finally show it to him last night since it’s free on Hulu right now.

      During the film, we kept gently joking about the fictional liberties of the movie (which make total sense: It’s Hollywood, after all), and the parts that rang profoundly true. I remember being so overwhelmed seeing a G-tube and scars on screen, that it was hard to not sob. (Why? Because representation matters.)

      One of the things that felt “real” to me is how the CF patients wander the halls of the hospital now and again – with a mask of course- and how they’re so close with their team.

      I remember getting snowed-in to my hospital once so no one could visit, even during the day, and I was so stir-crazy that an RT said she’d meet me for a “walk date” and show me her favorite spot. A few hours later, when on her break, she met me (as promised) and took me two floors down to a “secret” ledge, that let me step outside to finally get fresh air and see the snow, without actually going fully out of the hospital. I asked her a thousand questions and got to learn all about her and her life. After that, I tried to go see the ledge every hospital stay I had (until we moved a couple years later).

      What Is Your Hospital Personality?: When hospitalized, do you stay in your room, or get out when you can? Do you know nurses and RTs and team members well, or prefer to keep to yourself as best as can?

    • #15762
      Jenny Livingston
      Keymaster

      Bailey, I’m so glad you asked this! Five Feet Apart seems to have gotten equal amounts of love and criticism from our community, and I understand both. For all the inaccuracies (hey, it’s Hollywood, what do we expect?) some elements were so spot on, I was shocked. I first watched it in theaters with my partner and daughter. Then, as part of a Great Strides fundraiser, I watched with my extended family and some members of my local community. There were times when I felt incredibly exposed… as if all these people were getting a peek into intimate parts of my life.

      The things that stood out to me were the friendships between patients, and the relationships between patients and staff. I’ve had more than one Barb in my life; nurses who are more like mothers to me. I’ve also formed some of the most beautiful friendships with patients at my center. Between 2009-2015, I spent A LOT of time in the hospital. There were several other patients who were always in at the same time. The entire floor, both patients and staff, were like family.

      One of the criticisms I hear about FFA is, “patients aren’t allowed to just walk the halls. They’d never let you go onto the roof” and other things like this. But I’ve done some of those things (I even have pictures of a rooftop gathering to prove it). Some of my favorite hospital memories include IV pole races down the halls, having a movie night with several patients and RTs in a large waiting room across the hall from our CF unit (each of us sitting in a chair spread far apart from the other, wearing masks), and crafting at the nurses station with a dear CF friend while listening to Christmas music. Even though these were the “sickest” years of my life, we truly made the best of it and I treasure these memories.

      When watching the movie, the part that ALWAYS makes me ugly cry is when Stella says about Poe, “He was my best friend and I never got to hug him.” I’ve said this exact phrase! When my best hospital friend (who became one of my very best friends in life) died, I deeply mourned his loss and the fact that I’d never embraced one of the most important people in my life.

      These days, I pretty much keep to myself in the hospital. Many of my friends from that time have sadly passed away (of the 5 of us with CF who shared that movie night, I am the only one still here). I still have friends who spend time in the hospital, but we might grab a coffee from the Starbucks in the lobby, but that’s the extent of our adventures. Both the culture and policies in my hospital have changed enough that those kinds of things will likely never happen again.

      I’m so, so glad I was able to experience these things during a time when it was more acceptable (or at least more tolerated) and that I have so many amazing hospital memories!

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