I was born with Freeman-Sheldon Syndrome, a genetic bone and muscular disorder. I had 26 surgeries by my 16th birthday, so hospital rooms and intimidating doctors’ offices quickly became the backdrop of my childhood, filling up metaphorical pages that other kids had reserved for dirt hill races and princess tea parties with their stuffed animals. Growing up, I was always a little different than my peers. This wasn’t necessarily a bad thing. It just boiled down to different life experiences that I was having. I spent a lot of time reading, but it was tough to relate to the characters’ adventures when my world often seemed confined to a small, square hospital room.
Then a little book called The Fault In Our Stars came along.
The YA novel by John Green tells the story of Hazel and Augustus, two teens who form a life-changing bond after meeting in a cancer support group. The movie version has been smashing box office records. Sure, I might have been a grown-up by the time this massively popular book came out, and it’s been awhile since I’ve spent time in the hospital, but I still caught the FIOS fever.
As I was reading the book, I kept identifying with Hazel and her story, especially when it came to her cancer and how her medical past affected her life –- both as a child and as a young woman. Here are four Hazel quotes that illustrate how The Fault In Our Stars got it right about growing up in the hospital (trust me, I would know)…
1. “They [Gus’ parents] talked to me for a bit about how the enchiladas were Famous Waters Enchiladas and Not To Be Missed … and how in spring all thing are new, and they didn’t even once ask me about the oxygen or my diagnosis, which was weird and wonderful.”
Translation: Sometimes, it’s refreshing to talk about the boring, mundane stuff in life like food and the weather. Don’t get me wrong. I understand – and appreciate – how much people care when they ask a ton of questions about my medical conditions (When is your next surgery? How long will you be in the hospital? How is your knee healing?), but sometimes, that can start to feel like a lot of weight I’m carrying on my shoulders. I mean, it’s a pretty heavy topic. Especially when I was younger and wasn’t actually in the hospital, it was nice to forget about it all, even if only until my next doctor’s appointment.
2. “…left me quite out of breath, which of course made me worry that my lungs were again swimming in a rising pool of fluid … nothing could be gained by worrying … and yet still I worried. I liked being a person. I wanted to keep at it. Worrying is yet another side effect of dying.”
Translation: All those little aches and pains I used to get as a child? I was certain I was dying. I became a master of self-diagnosis before WebMD even existed –- the pain in my neck was a brain tumor, that little rash was most definitely a reaction to medication, oh no, was there latex in this balloon? Sometimes, it felt as though my head was going to explode just like that balloon, which of course was another symptom of a brain tumor that I needed to have checked out RIGHT AWAY.
3. “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 Cancer.”
Translation: I am not disabled. I am a person with a disability. There’s a huge difference, and it’s something I’ve been trying to reconcile even more as I get older. It’s a very fine line to walk (no pun intended), but I am more than my disability; it’s part of me, but it’s not all of me. Growing up, I never wanted to be known as The Girl In The Hospital Bed With Messy Hair And A Bunch of IV Chords Sticking Out of Her Arm. I’m so much more than that. Plus, it just wasn’t a good look for me. It’s still not.
4. “I’m a grenade, Mom. I’m a grenade and at some point I’m going to blow up and I would like to minimize the casualties, okay?”
Translation: It didn’t take a genius to see just how much my disability affected everyone around me. I’d look at the parents and sister, especially, and it was painfully obvious how hard they were trying to put on a brave face in spite of the uncertain world around us. And honestly, that broke my heart. Sure, I knew it wasn’t my fault, but I couldn’t help but feel responsible, even indirectly. It was a hard pill to swallow, and even now, I find myself wanting to “protect” the people around me, from hurt, from pain, and in a sense, from myself.
But despite all these heavy quotes, The Fault In Our Stars is decidedly un-depressing. It’s not a book about cancer or even really about dying, for that matter. It’s not about dying from cancer, but rather living with cancer, and, really, a disability in general. Thankfully, I do feel like I’m doing a lot more living these days.
Melissa Blake blogs daily at So About What I Said.