I saw Five Feet Apart last week, and I’ve been wanting to see it ever since I saw its trailer back in January. Cole Sprouse is devastatingly handsome, that I must say, but it’s their nasal cannulas that sold me. Living with an autoimmune disease for more than six years now has made my heart ache for sick flicks, and live precariously through the characters’ triumphs and misfortunes in romance.
Stella (Haley Lu Richardson) has been spending her teenage life in the hospital as she’s a cystic fibrosis patient, and despite that, she’s trying to live life as much as she could. She was under a medical experiment along with her fellow patient/best friend Poe (Moises Arias) when she meets Will (Cole Sprouse), another cystic fibrosis patient–a rebel and without a hint of care in the world. They try to survive their romance by defying the six-feet-apart rule, by making it one foot short, hence, the title.
Cystic fibrosis is different from myasthenia gravis, apart from the fact that they’re both conditions that are rare and non-curable. Living with a lifetime disease, on the other hand, gives you the same experience, which made the movie too relatable for me that I cried inside the cinema. The movie isn’t just about two sick teenagers falling in love. It’s also about the challenges that people with lifetime diseases have to fight each day, things that are way beyond the challenge of being sick for the rest of their lives.
Hospitals are basically your safest place. 2013-2014 was the height of my myasthenic symptoms, and I never thought there’d come a day when I would feel safer inside the hospital rooms with oxygen tanks and doctors and IV bags, and needles. When I could no longer swallow liquids, I had to be taken to the emergency, because my breathing muscles would be affected in no time. No, I never had a personalized room just like Stella’s, but I used to have a bag with all my essentials and also, a folder that contains all my medical records.
Your fellow patients will be the strongest part of your support system. Poe is a gem in this story, and I cried for him. Harder than I cried for Stella and Will’s happily never after. It’s a total relief to know that I am not the only one in this battle, and that’s important. Someone knows how it feels exactly to be sipping water only for it to come out of my nose. Someone understands the kind of weakness I feel when I walk and the ground doesn’t seem to hold my weight. Someone laughs with me when I brush my teeth by shaking my head instead of moving the brush because it’s too damn hard to move when you’re too weak.
It’s a challenge to be a good patient most of the time. Barb (the nurse) doesn’t fully trust Stella and Will that they’re gonna be able to administer all their meds by themselves, and it’s because it’s too hard to follow the schedule. I used to have a written schedule of my meds tucked on the wall, and my meds are arranged in a way that I won’t miss them. I even have an app on my phone and an alarm just to make sure I’ve taken them. Also, there are times when I don’t feel like taking some of my meds only because I’m not sure if they’re working because I still feel not right and all of them are just a bunch of lies and wasted money.
Survivor’s guilt is real. When Stella’s survivor’s guilt was revealed, I could only stare at the big screen and wonder how many times I’d felt that way. In 2013, I stayed in the ICU for three weeks fighting for my life thru a mechanical ventilator. My mom’s a faithful church volunteer worker, and naturally, her co-volunteers have become my prayer warriors. Surviving that ordeal made me feel like I owed all of them my life like I had to take care of myself not because I had to, but because I might feel so undeserving with that much attention.
Depression is more real. Okay, I am not clinically diagnosed with depression, but I feel frustrated when there are things I used to do that I can’t do anymore. I couldn’t go out with friends on an all-nighter for obvious reasons. No matter how good I feel about my physical well-being, the fact remains that what I can do is pretty limited and that sucks. The thought that I can be a burden to someone sucks even more. The idea that I might end up living and dealing with this all by myself for the rest of my life is the worst, and it’s too scary to even consider. I felt sad all the time, despite the things I’ve done to justify and redeem myself again. I felt too scared that my friends would get tired of dealing with me and they’d just leave. I feel like there are a lot of things that are wrong with me, that maybe my entire life and existence is wrong and offensive that I sometimes ask why I am still here. And yes, this is all coming from the feeling of being confined and trapped under the claws of my condition.
Watching a fellow patient die could wreck you. Sometimes, beyond repair. What happened to Poe is too harrowing and too gut-wrenching I don’t know how else to describe it. Watching one of my fellow myasthenics eat fries at McDonald’s and laughing like crazy only to realize that it was her last laugh with me because the next time I saw her was at her own funeral – I don’t know what that’s called.
We are too busy with treatments and ways how to be healed, that we ultimately forget to actually live. I can’t remember how many times I’ve said no to wonderful opportunities just because I was too scared to challenge MG and it might win. I’m worried the symptoms would manifest while I’m on solo travel. I can’t even do yoga because the stunts have got me thinking about what damage it can do to my pyridostigmine-strengthened muscles. It was only when my doctor said, the whole point of treating your MG is so you get to live a normal life, that I got a little bit ready to dare try.
This whole time I’ve been living for my treatment, instead of doing my treatment so that I can live, and I want to live, says Stella, and I felt so attacked.
This whole time I’ve been living for my treatment, instead of doing my treatment so that I can live, and I want to live.
I wish I could already buy the book. It wasn’t available when I asked for it last week. Have you seen this movie? Tell me what you can say about it by commenting below.