Wednesday, June 25, 2014

The Fault in Our Stars: a book, a movie and what cancer really does...

When The Fault in Our Stars was released in theaters, the internet lit up with posts spanning the spectrum. Some loved it, some hated it. Some shamed adults for having any interest in the stories of teenagers. I wrote my own post about those shaming people who read and enjoy YA fiction, and I wrote it before I'd even read this particular story.

One of the aspects of the issue that I had intended to include in that post, but neglected, is this: a great many of the stories considered some of the most important literature in history have been about children and teenagers. No one refers to Romeo and Juliet as mindless drivel. No one mocks an adult for adoring The Secret Garden. Those who read and love the stories of Lewis Carroll aren't picked on. Why then are we doing it now, I wonder?

There's not really an answer to that question, I suppose, but it is food for thought.

I had heard about FIOS for a while, been urged to read it by a few people. It wasn't really until the film was released and all the manufactured controversy began that it piqued my interest though. That, and my eldest daughter wanted to see the movie. She knows my rule about how she has to read the book first before she can see the film, and so we picked up the book one day and by the next she had finished it.

She is her mother's daughter.

After she was finished, I read it.

I knew the basic premise of the story of course, it's hard not to figure that out from the trailers for the movie even if you haven't heard anything else about it. What I wasn't prepared for, though, was the brutal reality of this book, one that I related to in so many different ways. The reality is one that certainly shouldn't be mocked as juvenile and certainly wouldn't be mocked by anyone with any degree of experience with the pieces of the story.

If you've not yet read the book and intend to, I'm warning you that from here on out, there will be mentions of the plot, so stop reading. (Or at a minimum, don't accuse me of spoiling anything. Incidentally, even knowing how it ends won't really ruin anything because the story isn't about the chronology of events nearly as much as it is about the journey on the way there.)

The opening scenes had me choked up, and I knew I was in for trouble. Now, I don't expect that to make sense for most people, at least those who haven't been to cancerville or taken along for the ride. For those of us who've been there though, it was heartwrenching to see the daily routines. The monotony. The pill bottles on the breakfast tray. The clear plastic tubing keeping someone as functional as they can be. The habitual visits to the doctors and the poking and the prodding. What it is like to watch as the rest of the world carries on like nothing is wrong because nothing is wrong with them, it is wrong with us and no one else could ever know, but we get a front row seat to watch everyone else carry on with their entirely normal lives.

The story is about a teenage girl who falls in love reluctantly, who fights it for a long time because she knows she is dying and she knows life isn't fair and she doesn't want to hurt anyone else when her time comes. The boy she falls in love with, a resident of cancerville as well, though one who has been declared NEC (no evidence of cancer) for a bit now. His experience with cancer, necessarily different than hers, left him without a leg and with a new found stubbornness when it comes to flipping the bird to the dangers in life. He habitually walks around with an unlit cigarette between his lips, on purpose, flirting with the thing that he knows could kill him, but refusing to give it that power.

Cancer changes people. If you've been there, you know what I mean before I even describe it. It changes every life it touches a little bit differently. Children and adolescents with cancer, perhaps even more profoundly changed by it all.

Some people become stoic and hardened. Others fall victim to the very idea of being a victim and never seem to be able to escape from it, even when they've been declared NEC for a very long time. Cancer becomes this thing that happened to them.

Some become bitter about all that this disease has stolen from them, hyperfocus on the unfairness of it all. Some seem disproportionately positive, spinning every piece of news by only focusing on the upsides...even when there aren't really any upsides left. Some people hang all their energy on faith, tell themselves that this disease and whatever it brings are God's will. Some decide there is no God.

Some, children especially, figure out ways to manipulate their conditions to get what they want from other people. They learn to use the sympathy and twist it. I know of many friends of mine, parents of children in this place, who worry endlessly about this part. I tell them what I tell anyone on this journey to cancerville...which is that sometimes you just have to do whatever you have to do to get to tomorrow. You can only worry about tomorrow when you get there, but you have to get there first. Some of our choices create new problems, yes, but sometimes those choices need to be made purely for your ability to survive with your sanity intact right now.

This story, believe it or not, has characters who represent all of these people, all of these changes, in the support group where Hazel and Gus meet. Some of the changes have played out long before the group meets in the "literal heart of Jesus". Some we watch play out during the story.

There were two scenes far more painful to watch than the end for me...which is another thing about being in cancerville that no one realizes until they've been there. Death isn't the hardest part. Sometimes living is. 

The first was the scene in the Anne Frank House where Hazel digs to the deepest parts of her soul just to make it up the flights of stairs. As they increase in steepness, she struggles more and more. Given ample opportunities to stop, to say enough, to accept help from others, she refuses. She wants to do this, she needs to do this, even if her body tells her she can't. And then she does and it is magnificent.

The second, the scene at the gas station where Gus calls her in a panic because his stomach tube has become infected. He just wants to do something for himself. He just wants to be able to go and do this one thing alone without needing anyone else. He just wants to be independent for just a little bit longer. Watching him realize that he can't do it anymore, devastating.

These two scenes were easily the hardest for me to watch because I've watched them play out in real life. I've seen what happens to someone when they fight for that independence and win. I've seen what happens when they cling to it longer than they should and finally have to let it go.

I've heard the phrase "lit up like a Christmas tree" in reference to PET scans.

Some parents have expressed to me concern about their children reading or watching the film because there is a sex scene. Having read and watched it, my opinion is this: this is exactly what I want my children to see, what I want them to believe that love and intimacy is all about. Yes, Hazel is 17 in the film and technically underage, but her age is just a number. Kids like them, kids who have been through more, kids who know that their time on this Earth is limited, they have a certain wisdom about them that most adults cannot conceive of. If my teenager were dying, would I want them to know what it was like to fall in love? Would I want them to know what it was like to be so connected to another human being? Without question, yes. Of course I would.

(For those requiring more details, there is no nudity and the entire scene is very tastefully done.)

One of the things that struck me the most about the story, and how true it is to reality, was the whole NEC issue. One of the painful realities that everyone who goes to cancerville has to confront is that once you've been there, you never really get to leave.

You don't.

Cancer isn't cured. They don't use that word.

You might go into remission. You might have NEC for weeks or months or years. You might couch your life in terms like being "fourteen years out", as my husband is. You might discuss things like which cancers are the "good" cancers to have - which, yeah, that's totally a thing. You might talk about survival rates and statistics about how once you have made it across the 5 year or 10 year mark, you're supposed to be "good".

But you don't say cured. Because no one says cured. Because it never really goes away.

The tumors might go away, sure. Whether resected surgically or obliterated by chemo or fried by radiation, they might disappear. Your blood might be stable and those xrays might stay clear. Sure. You can be deemed cancer free and healthy, absolutely. Cured? No.

It's there, it's always there. Lingering. That fear of whether it will come back again.

And in the movie, it does.

A cancer diagnosis is one of those point of no return life experiences. A moment where everything changes. Once they utter that word for the first time, you don't ever get to go back to who you were before.

The kids in this movie, their parents along with them, forever changed.

As we walked out of the theater, I had long since recovered from the heaving sobs I couldn't fight back earlier. The teenagers sharing the room with us, though, they'd just begun to cry.

And I knew why.

They were crying because of death.

I had cried all the tears I would cry in those two hours because of life.

And that is what cancer really does. 

It makes you appreciate life more than you ever thought possible. It makes you savor those moments of good. It makes you take them and keep them and cherish them, and it does it because you learn that life is short, but life is beautiful, and you never really know when it will all end.

In the story, Gus teaches Hazel how to live.

Cancer also teaches you, in the most brutal way, that death isn't always unwelcome.

Some infinities are greater than other infinities, so make your forevers today.



Image credit to 20th Century Fox


  1. We've been to cancerville and thankfully, came out the other side relatively intact. Changed but still here. 8 years out and I still worry whenever he tells me something hurts in his gut. His tumor was in between his small intestine and large intestine and it always makes me nervous. We're not the same dumb kids we were in high school now, all the spinal taps and blood transfusions and hair loss cured us of that. But we're here and we're together and I couldn't be more grateful. Thank you for sharing this. The book was amazing, I'm waiting til it hits DVD so I can ugly cry in the privacy of my own home before watching the movie. <3

  2. Almost 6 years out from Cancerville but with every twinge, every pain, every blood test, I fear hearing those words again. My oncologist always says my blood pressure is a little higher when I go back for my 6 month checkups (still taking anti hormone pills) but I always assure him, it's only high when I visit offense meant. I have more moments now where the C word is not in my every waking moment except those few moments every morning when I see the mastectomy scar while showering. My pet peeve is hearing Cancer center commercials or walking for breast cancer. These are all good things but a constant reminder of what I've been through. I tend to turn down the radio or the TV when these commercials come on. I still can't watch movies or read books where Cancer is the main plot. It's life....I get it.....but sometimes the reminders are a bit too much. I am....fortunately....a pretty happy person with an upbeat attitude but it doesn't mean that the constant talk of cancer doesn't get to me because it does. Excellent article that I was saying "Yes, yes" to all the way through.

  3. This is one of the best posts I've ever read by you, and you write some good ones! Thank you for sharing this. I wish I could say something deep in response, but I'm just trying to absorb it all.

  4. I come from a long line of cancer & have seen what it does to a family. Cancerville is an awful place. I have yet to see the movie, as the book made me ugly cry & I know it will happen again. This movie I am saving for the comfort of my bedroom. Thank you for writing this, as always your work is a pleasure to read.

  5. Two years out in remission. Think about it everyday. I had hyperpharyngeal cancer. Throat. Have PTSD when I try to sleep reliving getting radiation in my mask. Still have a sore throat everyday. Glad im alive for my family!!!!

  6. My mom's 5 year is sneaking up on me. I thought I was fine. I'm not. You never get out of Cancerville.

    Alexa was right. This was outstanding.


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