9.15.2014

The Fault in Our Understanding

The world's most recent infatuation with the The Fault in Our Stars made me even more aware of the fact that many people have not the slightest clue what it's like to live with a chronic illness. Now, don't get me wrong. John Green is an incredible writer. I actually loved the book and am still dying to see the movie...but I feel as if though many readers and movie goers got a glamorized look into the life of someone with a chronic illness versus a real look at what it's actually like to live a life hindered by one.

Much like every other teenage girl, at the end of the book, I was crying. Not because the oh-so-perfect and completely fabricated character of Augustus Waters had died...but because I understood. I was crying because I understand. I know what it's like to wake up and realize that although you may be feeling "well" or while that day may be a sparse "good" one...you will not be cured and you will continue to fight the same pain of the chronic illness you've known for so long that you simply cannot remember what it feels like to be "normal."

When I first read the book back in February, I had no idea it would be such a big hit. I mean, how could it be? How could one make the story of living with a chronic illness into a fictional novel? And how could people who can't relate enjoy reading such a thing? The text is loaded with glimpses and analogies of what it's like to live with a chronic illness. It's jam packed with emotions and thought processes that are a reality for those with chronic disease (which is the sole reason I fell in love with the book).

"Don't tell me you're one of those people who becomes their disease. I know so many people like that. It's disheartening." 

"That's the thing about pain," Augustus said, and then glanced back at me. "It demands to be felt."

"She seemed to be mostly a professional sick person, like me, which made me worry that when I died they'd have nothing to say about me except that I fought heroically, as if the only thing I'd ever done was have this disease." 

"The body shuts down when the pain gets too bad, that consciousness is temporary, that this will pass. But just like always, I didn't slip away. I was left on the shore with the waves washing over me, unable to drown." 

"Most of the time, I could forget about it, but the inexorable truth is this: They might be glad to have me, but I was the alpha and the omega of my parents' suffering." 

"She just keeps fighting the battle, waking up every morning and going to war without complaint." 

"You're a hard person to comfort," Augustus said. "Easy comfort isn't comforting," I said. 

"I wanted to not be a grenade, to not be a malevolent force in the lives of the people I loved." 

"Some war," he said dismissively. "What am I at war with? My body. And what is my body? My body is me. This illness is made of me. It is a civil war, Hazel Grace, with a predetermined winner. There is no glory in illness. There is no meaning to it. There is no honor in dying 'of'."

"When you go into the ER, one of the first things they ask you to do is to rate your pain on a scale of one to ten, and from there they decide which drugs to use for your pain and how quickly to use them. I'd been asked the question hundreds of times over the years...after they'd given me something, the nurse came in and she was kind of stroking my hand while she took my blood pressure and she said, "You know how I know you're a fighter? You called a ten a nine." But that wasn't quite right. I called it a nine because I was saving my ten. And here it was, the great and terrible ten, slamming me again and again as I lay still and alone in my bed staring at the ceiling, the waves tossing me against the rocks then pulling me back out to sea so they could launch me again into the jagged face of the cliff, leaving me floating face up in the water, undrowned."

The quotes I listed above were some of my favorites from the novel. When I say "favorites" I don't mean I liked them, per se, I just mean that they were some of the truest and most relatable words I've heard since my diagnosis.

So, great. I loved the book because I found it relatable...but why did other people love it?

That's where my love-hate relationship with this novel comes in. You see, I think the main reason people today love stories like this one is because of that fact alone. They're stories. There's a plot line to follow, unrealistically perfect characters to get attached to, and eventually (even if it's tragic) there's an ending with some sort of closure that results in understanding and/or comprehending.

Unfortunately, that's precisely where the problem lies...because my story, along with the story of so many other individuals, does not have an end. There isn't closure and we are far from being one of the unrealistically "perfectly sick" characters society has become accustomed to through novels like this one. We don't always have the right words. Sometimes, we don't have words at all. And unlike a book that can be flipped through in a matter of hours, we live lives filled with pain over a much longer duration of time.

Being chronically ill isn't as glamorous as our society believes it to be after reading books or watching movies solely based on fictitious circumstances. In fact, it really isn't glamorous at all. The physical and emotional pain of fighting a daily battle against your own body is both exhausting and inescapable. We learn to tolerate the pain and to make our lives go on despite it...but we can never dodge, bypass, or depart from the suffocating feeling of living with it. The future is a giant question mark and we eventually learn to be okay with that...or at least pretend to be.


I don't know how to accurately (and healthily) display, share, or communicate my emotions/pain 100% of the time and I'm not claiming to be any more capable of relating to others than anyone else in this world...but I do believe that fighting an autoimmune disease for just over 5 years has given me a unique sensitivity for others and their struggles. It makes me want to understand the things I don't even when it's difficult to. It's made me realize that only when we take the time to put ourselves in someone else's shoes will we discover that the fault isn't in our stars after all...the fault is in our understanding.

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6 comments:

Amanda aka Manda said...

Kenzie- I'm crying! This post is SO beautifully written. It expresses feelings/emotions I've been wanting to articulate but couldn't! Thank you for sharing your heart!!

Kate Mitchell said...

Kenzie, this is an INCREDIBLE explanation. I think that if people read this, they will have a better idea of what it is we live with, and not just the actual experience of living with an autoimmune disease.

katielookingforward said...

Gorgeous writing! God is using you in the best ways.

Jennifer said...

one of the best posts you've ever written. I love this. I don't claim to understand at all what you go through, but just from watching your story unfold + having a sis with type 1 diabetes, I've come to understand that...I won't ever fully understand. + it's okay. sometimes, I guess, it's enough just that someone tries to understand, or at least that they care.

love you, Kenz.

Rebecca Jo said...

Preach it young sister!!!

msorsomething said...

While I definitely see where you are coming from, and understand the frustration of feeling like people who don't live everyday with a chronic illness like we do can never understand what it's like...I don't think that The Fault in Our Stars does something negative for the chronically ill. I don't think that people actually ever think deep down that being chronically or fatally ill is glamorous. Sure it can be a popular storyline in Hollywood but the reason it is popular is because we make it popular...it means there are so many people out there either struggling with this first hand, know someone who is struggling or trying hard to understand what it's like to have that kind of life. It's popular because so many people can relate, but I don't think that glamorizes it per say. I think it's great that there is something so mainstream that either people with chronic illness can relate to or people without it can open their eyes a bit to life with an illness and then maybe that will lead them down a life of less ignorance and more sympathy for others. I sometimes feel like there are people who can't understand what I'm going through too, but I know that I'm surrounded by people who are TRYING to understand, which is the best we can ask for from them. And this helps them understand in a way. So that's why I think the story of living with a chronic illness can be made into a fictional novel, and also why people who can't relate enjoy reading it. It's not only a touching romance but it's a glimpse into a life they might not understand but might realize they could just as easily as anyone else encounter someday. It also gives hope that there can be some sort of normalcy to people living with such terrible illnesses as cancer. Sure, we don't always have the right words for our pain or frustration, but it's certainly nice when SOMEONE does and we can read that and think "yes, that's how I feel right now, maybe I can show this to my friend so that my friend can understand that's how I feel."

Like you, I hope someday that everyone can understand our struggles more, and if it's through art that they come to these understandings then I will do what I can to promote such art to thrive.

On that note, you are a great writer, maybe you can write a teen novel about a young girl who is chronically but not fatally ill, whose story doesn't have a glamorous Hollywood ending like that in The Fault in Our Stars. Maybe your voice can be added to the others that help us find the words when we are struggling to find them within ourselves. Maybe you can create a heroine for all of the chronically ill girls to look up to. Just a thought :)

All the best to you!

Lisa