06/26/2014 01:33 pm ET Updated Aug 26, 2014

The Fault In Our Stars and the Truths Behind It


The Fault in Our Stars is a magical book-turned-movie that beautifully captures the struggle of being a young person with a chronic illness. After reading the book a few months ago and seeing the movie this past weekend, I felt compelled to write about it because I am so thankful for a novel/movie that exposes the complexities of being young with an illness or a disability, an experience that is so rarely talked about. Let's be honest, if you're young, you're most likely healthy. Therefore it feels exponentially more isolating to be a young person battling a disease than an old person battling a disease.

In growing up with a chronic liver disease and undergoing two liver transplants, I have found very few things that feel like they tell the story of my experience.

Here's where TFIOS got it right:

Walking up the stairs
At the Anne Frank House, Hazel is confronted with a series of steep staircases that she must climb in order to reach the living quarters of the Frank family. The stairs pose quite a physical hurdle for her as additional strain is placed on her lungs that "suck at being lungs." Despite how difficult it seems to her, Hazel is determined to make it work. Not sure about all of you, but this is one of the scenes that really did me in (sobs). Hazel wants to be able to climb the stairs with everyone else. She wants to be normal badly enough to try to climb the stairs and to chance her lungs giving out on her. This perfectly represented to me the kind of decisions that people living with chronic illnesses or disabilities make all the time. Is it worth taking the chance in order to try and be like everyone else? Is it worth it to risk failing and causing a scene?

Concern about parents
One of the hardest things about having a chronic illness as a young person is the pain you put your parents through. In The Fault in Our Stars, Hazel Grace's mother is perfectly characterized. She hovers. She worries. She lives, sleeps, eats and breathes her daughter's every feeling. And Hazel feels incredibly bad about it. Hazel feels so bad, in fact, that the most important thing to her is to find out how the mother ends up at the end of An Imperial Affliction, her favorite book written by Peter Van Houten. She just so desperately wants her mom to be okay. I have to say that watching your life cause other people pain is really difficult because no one wants to be "the problem" and the source of the pain.

"Sometimes I really don't want this life"
My other serious breaking point was during the scene where Augustus Waters drives out alone to a gas station to buy a pack of cigarettes just because he wants to be able to do something for himself. Something ends up happening and he calls Hazel sobbing in a panic because he's bleeding and needs help. In the moment of his most emergent need, Augustus asks Hazel to not call 911 or his parents because he doesn't want to cause a problem. He is laying back in his seat in his car and sobs out this line: "sometimes I really don't want this life." Boy oh boy... bring out the Kleenex. The times that I've felt the worst and needed to be driven to the ER are the times where I really have felt the most hopeless. When my life feels so incredibly out of my control, I'm right there with Augustus. There is nothing more humbling and nothing that makes me want my life less.

ER Pain Scale
Anyone who has been to the ER more than a few times knows that one of the first questions that is asked of you in triage is to rate your pain on a scale of 1 to 10. I, for one, abhor this question. I typically try to refuse an answer until they coerce a number out of me. It's not just a number. It's this weird psychological thing where you play games with yourself because you know you cannot possibly be a ten (even if you might want to say a "10") because you know that you've probably been through worse or could be going through worse (it could ALWAYS be worse). I also particularly hate accepting that I might be above a five because that's like accepting defeat, accepting that you are in way over your head and you need help. I also hate the fact that someone would ever boil down the spectrum of pain to a scale from one to ten because a hangnail hurts a lot sometimes and if that's a "one," there is NO WAY in hell that a "10" could be a liver transplant (it would be a '1,000'). In this scene in the movie, Hazel Grace describes the pain scale saying that she never has used her "10" because "10" would be reserved when she really didn't think it could be any worse and that pain is the pain of Augustus dying. Highlighting the pain scale was perhaps the most genius effort of John Green because there's no way he could ever write about that without intimately knowing someone who's had a relationship with that scale. It's SO fitting.

I highly recommend the book and/or the movie. For me, the story helps to tell an experience I often don't feel like I can easily talk about. It also happens to be a great love story riddled with the realities of life and death.