“Do you know what the problem with living in a fishbowl is? Everyone can see you.”

10 Mar
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“Nothing in life will call upon us to be more courageous than facing the fact that it ends. But on the other side of heartbreak is wisdom.”

I watched Wish I Was Here this weekend, the movie that Zach Braff kickstarted (to much kerfuffle). Much like Garden State it’s overly sentimental with far too many slow-mo montages and a very precious indie rock soundtrack. It’s also funny, charming, unbelievable well cast and heartbreakingly sad.

And it’s very much about cancer.

I can already hear the “Ally, so are lots of things.” Yes, this is true. Cancer is pretty damn pervasive. Since I was diagnosed I’ve read about 4 different novels all of which at some point deal with cancer. And this was certainly not something I was seeking out. It just happened. It’s just there. I get that. Basically if you live long enough, you’re either going to be directly affected or someone you love will.

So this makes cancer a bit different from most other disease. Because if it’s something we can easily connect to on a personal experience level then we are bound to have strong feelings about it.

Let me back up a bit – so I was watching Wish I Was Here this weekend and I had a small panic attack. There was the proverbial death scene and while I wasn’t completely emotional saturated, I felt the walls unhinge and sort of creep up on me. I felt my chest get tight. I felt the panic setting in.

My husband noticed and offered to shut it off, but that felt silly. I can’t censor myself from every cancer/death scene in the world. I’ll never read or watch anything again, right?

This isn’t the first time this happened. The first time was during an episode of Orphan Black. My favorite character Cosima got sick. (No spoilers!)

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I was watching this during a time that my parents were staying with me for my mother’s chemotherapy. The big issue was that they didn’t know about my cancer. I kept it a secret for six months because my mother was scheduled to have a stem cell procedure and I was afraid if she knew about me, she wouldn’t go through with it. (I was right.) So aside from dealing with my own diagnosis and my mother’s illness I was also carrying around this boulder-sized secret. Needless to say when the character Cosima was sick, it was bad for me.

I’ve made an effort to figure out how to keep these things at a distance. How not to feel immediately dismantled by a character’s death in a book or a movie or a television show.

But it’s hard.

And part of why it’s hard is because people have a really significant connection to cancer. Significant connections lead to strong feelings.

Strong feelings, unfortunately can lead to judgement.

This article was published by the New York Times yesterday. It’s about a treatment called cold capping. Cold capping is essentially an option for chemotherapy patients that prevents hair loss by slowing down the metabolic rate in hair follicles reducing the effects of chemotherapy on the scalp. Basically, chemo kills quickly dividing cells, like cancer cells, (good) but also hair follicles and nails (bad).

This treatment is expensive, not covered by insurance, and completely optional. What it does is provide some people with a degree of privacy should they want it. And also a degree of normalcy. You would think that something like this would only be met with appreciation. It’s there for people who want to use it.

That is not the case.

I’m going to post here some of the facebook comments that accompanied the article. To preserve people’s privacy I removed everything but the text which is unchanged.

“My hair was the last thing I was concerned about.”

“Main concern was saving my life!! I’ve met other patients whose value system was as superficial. Could not relate at all.”

“This is like us soldiers liberating internment camps and giving the women in rags makeup.”

Honestly, saving hair should be the last things on your mind. So what if your bald for a little while? You’re beautiful no matter what!”

“I passed on this. My health was more important than my hair.”

“It’s just hair, and thankfully should you become a survivor, it will grow back.”

“It’s just HAIR already! I survived and now have tons of hair, more importantly – lots more LIFE ahead of me!”

“Be a free spirit and don’t give a f#%k”

“Vanity in the face of death. Only in America.”

“I was more concerned with living.”

“Having cancer doesn’t excuse vanity.”

“Vanity knows no bounds”

If you’re surprised by the judgement then you haven’t spent much time in Cancerland.

Angelina Jolie had a preventative mastectomy when she was diagnosed with the BRAC gene. Those who have it (approximately 10% of the population) have an 80% chance of getting breast cancer. Preemptively removing healthy breasts is a terrifying and difficult decision.

These people are collectively referred to as previvors because they are survivors of predispositional cancer.

This too, even in the cancer community, was met with a snort of disgust. On a forum I came across the following quote: “having a predisposition and getting the disease should not be compared.”

Really? Because they both sound pretty damn scary to me. Cancer sucks. Mastectomy sucks. Fearing cancer sucks. Family history sucks. Let ’em in the pink tent. Unfortunately, there’s plenty of room.

Which brings me back to Wish I Was Here. There’s a great line in that movie about being brave. Zach Braff’s character is admonishing his brother for being cowardly in the face of his father’s impending death and he says:

“Do you know what the problem with living in a fishbowl is? Everyone can see you.”

The internet is a fishbowl. Cancer is a fishbowl. Privacy, control, and vanity are not the same thing. You don’t get a special reward for being “only” Stage 1. Trust me. And on the flip-side invasive cancer is not a platform from which you can stand on high and look down on people who don’t want to become a statistic.

Be nice to each other. Life is short. For some, it’s even shorter.

Peace, Love and Starbursts,

Ally

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2 Responses to ““Do you know what the problem with living in a fishbowl is? Everyone can see you.””

  1. Michele Seminara March 10, 2015 at 8:21 pm #

    Well put, Ally! I suppose all sorts of people get cancer, and the judgmental ones don’t necessarily change with their diagnosis. But geeze, as you say, let’s be kind to each other! Thanks for your illuminating words.

    • ally malinenko March 11, 2015 at 2:39 pm #

      Thanks Michelle. As Ryan Adams says, “love takes care of love. Hate just burns you out.”

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