Friday, September 26, 2014

pain demands to be felt.

I've been pretty late to jump on the "The Fault in Our Stars" bandwagon, given that the huge hype about it mostly crested earlier this year, when it came out in theaters.  I read the book when it first came out, so I was already familiar with it, and I have a strong aversion to the majority of movies that are based on books.  In my opinion, most movies do not adequately translate the feelings of a book onto the screen.  Sure, I'm a book snob -- that's no secret.  Anyone that knows me knows that I have, at any given time, at least twenty books in my room waiting to be read, that I have way more books that I have anything else in my life (including -- shockingly enough -- clothes), and that if you spill on or fold a page of one of my books, our relationship is pretty much over.  All of that being said, I think most readers, even the casual ones, would agree with me that books are not known for translating well onto screen.

Now, there are movies and books that I both like equally, and can separate in my mind because I feel like they are two different entities... like Harry Potter.  The movies are so freaking amazing, that I would be pretty stupid to not like them just because they aren't the same as the books.  On the other hand, they leave SO much out that is in the books, that you kind of just have to like the movies as a completely separate Harry Potter, so as not to mix the two and get frustrated.  See what I'm saying?

With that whole rambling aside, I was pretty skeptical of how the movie version of The Fault in Our Stars was going to go.  It's not a long book, but there are a lot of feelingsy things that need to be portrayed correctly to make everything really jive on the screen, and feelings can be difficult to act out without being able to read the text (like in the book where you are inside the character's head). In a movie, you can only see it played out on their face which can be tricky.  So when it first came out, I avoided it.  I love me some Shailene Woodley, but I was just all ehh about the whole deal.  Until about a week ago, when I was feeling like I just needed a good cry (you know those days), and I rented it on iTunes.

prettttyyy much.  but in a good way.

....I may or may not have watched it five times since then.  And made my mom watch it.  Oops?  Honestly, I haven't read the book in so long that I don't even remember what is or isn't different regarding the book and the movie or what key facts they left out.  All I know is that I watched it so many times because it just resonated with me in so many ways about being sick, and how it feels to live with a chronic disease everyday.  It was especially touching for me because of my heart condition, identifying with Hazel about not being able to breathe or do normal things, like walk down stairs, without getting winded.  I haven't been able to stop thinking about it, and I thought it would be a great topic for a blog post.

(Let me first get this disclaimer out of the way:  I am in no way saying that any of the illnesses I have are even close to the level of cancer.  Cancer is awful and terrible.  I have had family members die of cancer, and it steals your life even before you physically die.  I am not saying that I'm like a cancer kid at all.  I am just sympathizing with Hazel about how it feels to always have an illness eating away at you, no matter what that is.)

There is a particular scene in the movie that really stands out to me the most.  (Obvious spoilers if you haven't seen the movie/read the book.)  Hazel just had a scary episode of more water filling up  her lungs and had to go to the hospital, where she found out that the medicine that had been so far keeping her alive and mostly functional may not be working anymore... Plus the trip that she was supposed to take with her "friend" Gus (who she really likes more than that but feels like she shouldn't get involved with because -- as she puts it -- she's a "grenade" and he doesn't deserve the aftermath) is cancelled because of her medical problems.

Before we even dive into the actual scene, let's talk about the set up.  How many of us sickos (not in the serial killer kind of way, just in the fifteen-pills-a-day kind of way) have had those days, those scenarios?  Not necessary the water in the lungs or cancer medications not working, but just for me, there have been so many times that the medicines that should have been helping me weren't, or they were and then they stopped.  Doesn't that seem to be a cornerstone of our lives?  There's not one single person I've talked to that hasn't been on and off at least a few medicines over their journey.  And on top of all that, I think we all struggle with feeling like a "grenade" to the people around us, especially when plans get derailed because of our sickness.  I know that for me, personally, I feel like I'm the one who was dealt this hand and that sucks.  But I don't like dragging other people into it, because they have a choice, and I wouldn't wish this on anyone.  Even though most of the time our people don't see us as grenades, it's hard to not feel that way when our bodies keep messing up so many things around us -- our ability to support our families, provide an income, run simple errands, play with our kids, make our spouses happy, etc.  I hate having to mess up plans because my bladder is making me pee every ten minutes, or my hip hurts so bad I can barely walk (both actual reasons I've had to cancel).  Yes, it does weed out your true friends quickly and the real ones stay and don't hold it against you.  But it doesn't make you feel any better about the fact that you, the grenade, are blowing up and taking out everyone around you.  It makes you feel very guilty and responsible in an upsetting way.

So, needless to say, I could totally see where Hazel Grace was coming from at this point in the movie because I'd been there, and I'd felt those feelings before.  After avoiding Gus' calls for a while, she finally calls him.

Gus:  Hazel Grace!
Hazel:  Hi, Augustus.
Gus:  Are you...are you okay?

Hazel hesitates a few moments before she answers, "No."  You can hear the dejection in her voice, and it just pulled at my heartstrings.  There are so many times that we try to be strong, try to pretend like nothing is bothering us, like even though we are in so much pain, that we're fine.  Everything's cool.  Nothing to see here, move along.  We don't want to be a grenade again, after all.  But then there are those times when someone just asks the right way, at the right moment and you just... crumble.  You know what moment I'm talking about, because we all have them.  Gus asks Hazel, "What's the matter?  Talk to me."

She replies, "I don't know.  Everything.  I want to go to Amsterdam, Gus.  And I want Van Houten to tell us what happens after his book.  I also don't really want this particular life."

That last line just hit me right in the gut like a ton of bricks.  I am not suicidal, nor do I want to die, because I love my family and there are plenty of things that I want to do with and in my life.  However, there are some days that, like Hazel says, I just don't want this particular life.  I've never been able to articulate it correctly, but the way she said (simple as it was) is so true.  I don't want this life.  I'm so sick of being sick, of all the drugs, the pain, the sleepless nights, sitting around the house because I'm unable to do anything else, the endless doctors visits, feeling so inadequate sometimes.  I hate it.  I know those of you that have chronic illnesses know exactly what I mean.  It sucks.  I don't want this particular life.  Do any of us?  I don't know anyone who would choose any of this crap, but this is what we have right now.  Hearing her say that, it felt like for once.. somebody actually understood.  There are days that I just want to crawl into a hole in the ground and just not exist.  Not die, but not be here, either.  This life is torture sometimes, especially to be living at a young age, when I am supposed to be in the prime of my life.  I feel trapped in a body that has failed me at every turn -- a soaring spirit trapped in a broken, weighted down body.  I have so much ambition and desire, but my body doesn't allow me to fulfill it at times.  It's unbelievably frustrating.

Fortunately, things get better for Hazel.  They aren't all cotton candy and unicorns, but nothing is.  It's real life, with ups and downs and in-betweens..  Just like our lives as people who suffer from chronic illnesses.  We have good days and bad days, days we just don't want the stupid bodies we're stuck in, and days we can go for picnics near giant skeletons (seriously, go watch the movie).  Just knowing that other people are out there that feel the same way, and know what it's like to be in my shoes, is very comforting to me.  As soon as I got sick, I immediately felt separated from everyone else, all the "normal, healthy" people.  Did you feel that way too?  We have to do such unusual, sometimes embarrassing, things to get through our day-to-day tasks that it often seems like there is an invisible line dividing us from "those" people.  In turn, it makes me feel an automatic kinship to someone when I find out they suffer from a chronic illness, especially if it is one that I also have, or if they are around my age, because then there is even more of an understanding without even having to specifically talk about it.

Although Hazel Grace is just a character from a book/movie, I know that some of you feel the same way I do, and it gave me comfort to watch this movie.  Just like music, it is easier to express feelings indirectly through a song or movie, and this film showed a glimpse into a bit of my struggle both emotionally and physically for my loved ones to see.  For just a little while, I felt like I was immersed in a world that I was comfortable in, because it's what I live everyday -- pills around the clock, hands that aren't so much cold as just under oxygenated, having to stop after walking down the stairs so I can catch my breath, watching my friends suffer for no good reason and the injustice of it all.  Being able to come on here and on Instagram and get to talk to you all even more about issues we all share as a community is also helpful in a way that healthy people can't really give us, because they just don't know what we have to go through.

As Hazel Grace's favorite book says,

But I'm hopeful that someday, hopefully this day, that pain will be less for you.  If not, take comfort in the fact that you aren't alone, and maybe this movie will be a comfort to you as it was to me.  Perhaps watching it will also make you feel like somebody else understands and that you aren't so isolated in your journey, because the things we go through can be very isolating at times.  Try to remember that things will get better.  They have to, right?  That's what I wake up every day believing.  Even if the day turns out to be really crappy and awful, tomorrow is always a new day, a new opportunity to feel better or try something new, or even just to make the best of the situation you are in.

As always, I would love to hear from you and what you think.  Did you watch this movie, and what did you get out of it?  Do you have a chronic illness, and what are your tricks for feeling less isolated?  Please leave your comment down below and if you haven't... watch the movie!  I promise you won't regret it.. but bring lots of tissues!!

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