Posts Tagged ‘Medication’

The Fault In Our Stars and My Own History with a Disability

Wednesday, June 25th, 2014

Based on a book of the same title, The Fault In Our Stars follows Hazel (Shailene Woodley), a 16-year old girl suffering from stage 4 thyroid cancer growing in her lungs. The story is crafted in a way that shows the life of a cancer patient through the cancer patient’s eyesight. What I mean by that is Hazel’s character doesn’t come across as suffering in the way some people — those who don’t suffer from a disability — might think she should be.

This is Hazel’s story displaying Hazel’s feelings, and it’s refreshing because so much of what we’re shown in the media pertaining to cancer or other disabilities is the struggle, the fight, the pain and suffering. What’s never ever spotlighted is the sub-par attitude of the sufferer, probably because “angst” isn’t a fantastic call to action.

One definition of angst, found on Urban Dictionary:

Angst is about downtrodden teenagers thinking they’re the only bloody people in the world who have it tough, and thinks that gives them an excuse to wallow in their own self-pity instead of actually doing something about their situation

I love that above definition because it expresses how we feel like we’re the arbiters of the happiness of others, even if we can’t empathize with them. But what does that have to do with The Fault In Our Stars?

Some of the criticism I’ve seen for this movie complains about how the ugly side of cancer isn’t shown, that an accurate portrayal would show the physical degradation to the sufferer and the pain it inflicts to those close to her. It doesn’t showcase all the nasty stuff that makes us emotionally attached to the idea of eradicating cancer. That teenage angst à la Bella Swan from Twilight doesn’t have a place in a movie about something as viscous as cancer. I might be overstepping, but those are views of people who don’t suffer from an illness or disability, but rather, suffer other people suffering.

The trick is to see things from a cancer patient’s point of view.

Hazel is in almost every scene of the movie, and so instead of seeing the widespread pain that cancer causes, we’re given a glimpse into the potential feelings of a person suffering from cancer. Scene after scene, what’s shown is what Hazel sees. We see Hazel have to lug an oxygen tank around, we see her repeatedly asked if she’s okay climbing stairs, we see her told she can’t leave the house yet because she has to eat. The only time we see Hazel happy is when she’s with her boyfriend (Ansel Elgort), a cancer survivor with a prosthetic leg, who makes her feel like the 16 year old girl she deserves to feel like.

Unfortunately some people have a problem with that, and maybe what’s perceived as angst (I hate that word) from the main character could be considered a response to ignorance from the supporting characters. Hazel’s attitude seemed real — to me — and I tremendously appreciated it.

I have a disability of my own, it’s called epilepsy — if it means anything to you, I’m diagnosed with tonic clonic seizures located in the temporal lobe. So while I don’t have cancer I’m acutely aware of what it’s like to have a disability, and my point of view is radically different than the people close to me who have felt pain when I had seizures.

If a movie was made about me before I accidentally became seizure free (the wonders of a fruitarian diet!), and it was told from my perspective, it would look similar to The Fault In Our Stars, just minus the romance. What would be shown would be my family and friends yelling at me for doing things like not sleeping, telling me what I can and can’t do as a person with epilepsy. You’d see me shrug off all of their nonsense and eventually grow into a bitter person, who often thinks of healthy people what Magneto thinks of humans. You’d see an angsty Montana!

I know for a fact that if a movie about my life was made, but not from my viewpoint, you’d see the damage that has been done to me physically and socially, you’d see the emotional trauma that the people close to me have gone through when I had seizures, you’d see a disability that deserves more research funding. If what you’re shown is an unappreciative, generally depressed-yet-self centered kid, you probably wouldn’t care, and you might feel that the filmmakers weren’t accurately portraying my disability.

One thing I’ve observed over time, is that the feelings of disabled people aren’t really valued. You can be in agonizing pain with no end in sight, and you will be called selfish for wanting to die. If people are emotionally invested in you, what happens to you affects the emotional investors, and they think they have a say in your being — much like investors in a business own that business.

If you have epilepsy, depending on what you think it means to feel normal, other people’s happiness might require your misery. I’ve had plenty of seizures by exercising typical college student bad behaviors, but they were worth it because those bad behaviors made me feel normal. Talk to my family and friends, and they’d wish I religiously followed some seizure-repellant lifestyle. Waking up in the hospital sucks, but for me it’s just boring, and it might’ve happened after a night of getting sloshed, or not sleeping to binge watch TV shows, or both. While my hospitalizations might’ve been merely boring to me, they have emotionally hurt my family.

A long time ago I made a decision to make my epilepsy mean nothing, and I’ve since followed the recommended seizure-controlling rules (below) only when they don’t get in the way of what I want to do. For example, if I want to stay awake for more than two days participating in a 50 Hour Tweetathon to raise money for a film, I’m going to do it. In the past — before I became seizure-free — my attitude did result in seizures, some bigger than others. I’ve been told by everybody from family to friends to teachers to classmates to my neurologist that those seizures weren’t worth ignoring the rules. The rules (for my particular brand of epilepsy) don’t actually veer too far from the average person’s health tips:

  • Have a consistent sleep schedule and get at least 8 hours of sleep every night.
  • Eat at least moderately healthy and don’t starve yourself.
  • Exercise.
  • Take prescription medication at the same time every day.

While for the most part those are guidelines people tend to follow, there’s a difference between guidelines and rules (as Pirates Of The Caribbean has taught us). People can deviate from them and expect to not have a seizure, unlike me when I was seizure prone. So while it might not seem like a big deal to get sleep and take pills at the right times, imagine that you wouldn’t ever be able to deviate from your routine, and that your life will always be managed in the context of your disability.

While it’s possible to be healthy and live well — my lifestyle since becoming fruitarian proves that — it’s also possible that living healthy requires sacrificing happiness. For some people, a life lived short but happy is better than a life lived long but unhappy.

I can’t speak too confidently for Hazel’s character in The Fault In Our Stars, but I’d wager that she’s in a similar situation with her cancer as I am with my epilepsy. She wants to do things that might have consequences with her condition, but will make her happy. Hazel’s family wants her to mind her condition and not risk expediting death. In other words, for Hazel to be happy the people around her have to be distraught. For the people around her to be content, Hazel must be miserable. What we see in the movie is the conflict between the two sides, from Hazel’s perspective.

The Fault In Our Stars touched me because I felt, for maybe the first time, like I saw my own attitude on screen. That what has been probably unanimously misunderstood by people in my life was understood by the people involved in this film. It’s very possible that I’m reading too much into it and I’m seeing what I want to see, but I’d wager that the people who cite this film’s problem as not accurately portraying cancer, are wrong. As a person who’s grown up disabled, I know that not everyone’s opinion about disabilities are equally valid. Suffering from a disability is very different from suffering because someone close to you suffers from a disability.

Catch The Fault In Our Stars if you get the opportunity, it’s not a bad movie, and even ignoring everything above it stands alone as a good romance flick. Also click here to check out my buddy Jeff Nelson’s review of the movie, he’s a good critic and he generously contributed his time in editing this article.