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What The Fault in Our Stars Means to Me (Spoiler: A Lot)

20 May

I love talking about books. I attribute this to the fact that I spend a lot of time alone, in my bed, reading books. Therefore, when I’m around actual living people all I have to talk about is what book I’m reading, or have recently read (and occasionally, television, which dedicated readers will also recognize as a passion of mine.)

I haven’t written that many book reviews on this blog, but I plan on changing that in the next few months. In fact, we’re going to get started today! BUT! This review isn’t going to be a typical review. It’s not really a review at all, in the sense that my goal isn’t to give you, the reader, an idea of whether or not you want to read the book I’m reviewing. Those of you who will end up reading this post will have probably read the book in question, and on the off chance that you haven’t read a book that’s been on the NYT Bestseller List for over two years, well, then you’re probably not too interested in reading the book at all. My goal in this post, which has been incubating for like, a year and a half, is to explain how much The Fault in Our Stars meant to me, not as a reader, or a fan of heartbreaking romance, or a Nerdfighter, but as a person who has a chronic illness, and who found a work of fiction that contained more truth about The Sick Life than just about any other novel I’d ever read.

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I’d love to take a photo of my own book for you, but my DISEASED BODY won’t let me read non-ebooks. (that’s a callback to another post, FYI. But it’s also true.)

DISCLAIMER: Like I said before, this is being written for people who have already read The Fault in Our Stars. I’m not going to give you a synopsis or explain any references I make. If you read this and you haven’t read the book, or are waiting for the movie, that’s fine. I  can’t stop you. But if you don’t get what I’m talking about and are feeling left out, there’s a pretty easy way to remedy that, and it doesn’t involve me or this blog. END OF DISCLAIMER.

Last week I was going through some medication adjustments, and it completely screwed up my sleep cycle. I’d sleep for 16 hours one day, and then I’d have raging insomnia the next. During one of these sleepless nights, I decided to re-read The Fault in Our Stars. I wanted to read it again before the movie, but it’s also a book that I read when I’m feeling really bummed out about being sick. I imagine a non-sick person may think that The Fault in Our Stars would be the LAST thing a diseased person would want to read for comfort. NOT SO. Reading such a realistic account of illness, including the minute details that healthy people probably don’t think of, but that affect us sickos profoundly, can be incredibly cathartic.

Here’s the easy way to explain my relationship with this book: I am to The Fault in Our Stars as Hazel is to An Imperial Affliction. (I mean, pre-Amsterdam, that is.)

During my most recent re-reading, which I completed in one sleepless night, I decided to keep track of all the times I was overcome by emotion and/or moved to tears. See, I have a theory that my tear triggers are different from those of the healthy. For instance, I made it to page 5 before bursting into tears. Here’s the passage that got me bawlin’:

Isaac and I communicated almost exclusively through sighs. Each time someone discussed anticancer diets or snorting ground-up shark fin or whatever, he’d glance over at me and sigh ever so slightly. I’d shake my head microscopically and exhale in response.

Oh, if I had even a ha’penny for every time a person had told me what I should be doing to treat MY disease. As though it was my own lack of a go-getter attitude that triggered my neurobiological disease. As though I don’t spend every hour of my life managing my health in one way or another. And also, the crazy treatments and admittedly well meaning, but idiotic advice? That’s newbie shit. When you first hear about a disease you try to find every possible way to treat it, but eventually you learn. While I’m still proactive, and I’m still finding different ways to cope, I’ve learned over the years that the most important thing is maintaining the quality of life that I do have, not killing myself by incessantly chasing something better. Healthy people may think of it as a defeatist attitude. Sick people know that it’s actually the first sign that you’re not going to let your disease control your life any more than it already does.

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One thing that The Fault in Our Stars and An Imperial Affliction have in common is that, as Hazel says, “…it’s not a cancer book, because cancer books suck.” In TFiOS, John Green unapologetically reveals the side effects of disease, including the way disease affects every aspect of a person’s life. One thing that I’m always embarrassed to explain to people is how hard it is for me to stand for a long period of time. Sometimes I think I’d rather faint than explain to a stranger why I have to find a place to sit. Hazel knows what I’m talking about.

I just got kind of tired when I had to stand a lot. I’d stood in the living room and then there had been the stairs, and then more standing, which was quite a lot of standing for me, and I didn’t want to faint or anything.

Like I said, the moments in the book that were the most tearjerking for me were what some readers may have just skimmed over, but for me they punched me right in the feels (which causes me more pain than a Normal, because of the aforementioned neurobiological disease). I mean, did this passage make any healthy people have to put down their book because they couldn’t read through their tears? I’d guess not.

So I excused myself on the grounds of pain and fatigue, as I often had over the years when seeing Kaitlyn or any of my other friends. In truth, it always hurt.

I’ve had to cancel more plans that I’ve been able to make because of my disease. And I always try to hide it, or brush over it by saying I’m, “just not feeling that well.” Because in truth, the only place I really feel all that “well” is my bed, which is my favorite place to be. I like to say that I’ve “curated” my bed into a place of optimal comfort, and because of that it’s the only place I can be truly comfortable. In fact, Hazel and I have THAT in common too.

…my bed, which was queen size and pillow topped and one of my favorite places in the world.

Aside from us both preferring our beds to anywhere else on earth, Hazel and I also have expert caretakers on our side in our moms. Hazel and her mom’s relationship was so similar to mine with my own mom that their moments together basically eviscerated my emotions. The movie is going to be pretty rough for me, considering my mom is already Laura Dern.

Little moments like this, for example, could literally have been lifted from my own life:

Mom’s policy was never to wake me up, because one of the job requirements of Professional Sick Person is sleeping a lot.

And this, which, if you replace cancer with fibromyalgia, endometriosis, arthritis, and a host of other conditions, could serve as a succinct biography of my family as a whole:

My dad understood my cancer the way I did: in the vague and incomplete way people understand electrical circuits and ocean tides. But my mom knew more about differentiated thyroid carcinoma in adolescents than most oncologists.

The first time I read that passage, I made a supremely attractive noise that was part laugh, part choked sob. And this next part I’m about to hit you with? OH SHIT. This, to me, proves that John Green eavesdropped on my therapy sessions. I mean, damn, John Green. DAMN.

 “I’m a grenade,” I said again. “I just want to stay away from people and read books and think and be with you guys because there’s nothing I can do about hurting you; you’re too invested, so just please let me do that, okay? I’m not depressed. I don’t need to get out more. And I can’t be a regular teenager, because I’m a grenade.

Of course, this isn’t proof that John Green understands my own personal struggles with Sick Life, but rather that he understands the frustration and pain that ALL people affected by illness go through. And he should – Green was inspired to write TFiOS after working in a children’s hospital.

There are parts of Hazel’s story that I can’t relate to. I don’t know an Augustus Waters, sadly. But TFiOS is still my Sick Life Savior, because in this book I can see that I’m not alone. Some might read TFiOS and see a story about overcoming hardship and finding love, but I see a story that doesn’t compromise in describing how utterly shitty it can be to live a half-life. But, amazingly enough, it’s also a story about how I won’t life a half-life. I’ll adapt, I’ll cope, and I’ll be okay.

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