I am constantly running up against the thought that it’s time to stop this exercise, that my story is stale. That it’s time to step aside and let some other young adult with cancer shout to the world – as if there were a finite number of ears to listen to us, a limited amount of psychic space for us all to share. I mean, a few weeks ago when I visited my primary doctor’s office for a refill on my anti-depressant and to pick up referrals for my upcoming GI scopes, the attending said, “To look at you, you’d never know you were a patient. That’s how it should be.” I’m a healthy person. Isn’t it time for me to stop writing about being sick?
Each day, as I look around me, I see things that I aspire to, that I want to be: a stronger, more versatile yogi; a mother; a published author; a marathoner; a master gardener. There is inspiration everywhere; there is so much to do. There are so many angles to this story, so many chapters yet to be written.
What I don’t see when I look around me is acknowledgement of my experience as a young adult who has survived cancer. Sure, in my confined universe of First Descents and Planet Cancer friends, I see myself reflected and honored. But beyond that, in the world at large, not so much. It’s this lingering sense of invisibility that keeps driving me to try and figure out how to explain my story to those who haven’t lived it, how to tell the whole of it.
With that in mind, I eagerly went to see “50/50” yesterday afternoon, with a survivor friend (and adoptive mother: how grateful am I to have her in my life?) My pocket-pack of tissues at the ready, I sat down in the darkened theater fully expecting to see some significant part of my experience as a young adult facing cancer reflected on the screen. But despite some truthful moments, for the most part, it never happened.
I accept and understand that every person’s experience with cancer is unique, but there was a universality that I longed to see on the big screen, depicted in a way that would hopefully make people who’ve never been through it understand the hell we have endured. I can’t know what the film’s story looked like to someone who has never been diagnosed with cancer. To me, as a survivor, it was lacking some essential part of our reality.
Maybe a protagonist who actually looked like shit as he went through treatment would have helped. Joseph Gordon Levitt never appeared gaunt; his skin never took on that unmistakable chemo hue. He looked like a healthy guy who shaved his head.
what's with the eyebrows? (as in, why does he have them?)
Maybe more than one scene depicting the emotional devastation of his diagnosis would have left me feeling like, Yeah, that’s it. That’s the relentless pall that hangs over you when you’re in the middle of treatment, wondering if you’ll live or die.
Maybe if the film hadn’t shown Adam clinging to his mother as the anesthesiologist administered his drugs, and then breaking down as he’s wheeled into surgery. Maybe if instead, they’d showed him all alone, facing a seemingly endless succession of doctors explaining things and asking him to sign forms while his mind, though blank, reeled with the reality that he was staring death in the face, I would have thought, Yup, been there.
I did experience that chill of recognition seeing the aerial shot of Adam being hoisted off of the gurney and onto the operating table; I did cringe as he vomited violently the night after his first round of chemo. And I certainly laughed out loud many, many times, at the inept and absurd things that the people surrounding Adam did while they grappled with their own fears and demons.
But over-all, at the end of two hours, I felt like there was something vital missing from what the film portrayed. Yes, it’s largely a comedy, and actually, in its humor, I thought the film and its gifted actors were quite successful. But in its attempts to show the dark side – the REAL dark side, not some sanitized, palatable Hollywood version of the dark side – it certainly disappointed.
In the end, I’m not so interested in the reasons why “50/50” failed to achieve what I hoped it would. What’s important, I guess, is why I wanted it to succeed in the ways that I had imagined.
Why do I need the world to understand what I went through – the suffering I endured, the indignities of treatment, the fear of facing death? I’m almost four years out from my diagnosis; why does it matter? At least in this instance, someone was trying to tell a story that was resonant in some basic ways with my own. Do I appreciate that? Absolutely? Is it enough? No, it’s not.
I guess the truth is that my own “alienation phase” has perhaps lasted much longer than I realized. The feeling of invisibility lingers.
Each day, I have to push back against it. Today, I had to directly confront my on-going inability to publicly celebrate a dear friend’s coming baby. (Will I ever, ever get over it?) Fortunately, there are those (including my friend) who understand, who are brimming with compassion. But it feels like an endless cycle that I will be forced to repeat, a sense of different-ness that I will be unable to shake, at least until our own baby comes, and probably for much longer after that.
Today, too, I had to bristle, when I heard someone refer to a “real mother.” As I wait to parent through adoption, the invisibility of my experience as a survivor is compounded by that of my childlessness. No one can see the void that exists – where the person I was before my illness dwells, along with the child for whom I am waiting.
The good news is, I am getting better at all of it, through trial and error. I am stumbling my way into defining my new reality honestly, truthfully. I am working to embrace all of the wretched stuff that brought me to this moment that is so explosive, so full of promise, without having it drag me down, or hold me back.
I am working on telling the whole story.
Emily,
Thank you for writing this post. I had a slightly different reaction to 50/50, but that is not why I am writing this comment. Over the years, I was a consistent blogger telling my story. It was really just my on-line journal. After I while I questioned if what I was writing was profound enough or education to those reading it and basically stopped blogging. There were other bloggers that were writing I felt that were writing about more important issues and did not feel I could or wanted to complete.
The thing is, I miss writing, I still write for myself, but it was different somehow. By publishing a post about what I was go through at that moment, I felt as though I was standing at the rim of the grand canyon and releasing all the fears, sadness and anxiety into the abyss and I could move one. After much thought this summer, I decided that I did not need to be profound or educational in my writing, I only needed to be honest. Maybe some people find my writing educational or for others it is inspirational, but I think all of us need to tell our side of the story, because each of our on journeys with cancer have been unique, therefore, I don’t think we will ever have enough survivors writing about our experiences – our “whole truths”
So I encourage to keep writing. Your story is not over and while your journey is different than mine, I for one want to read it.
Hi Cheezsteak –
I’m Zipper’s mom. He was eager to point me toward your 50/50 critique after I showed him the review I wrote (which was much more positive; I had low expectations going in and, of course, a very different perspective as the mom of a teen treated for cancer). Your reactions to the film really gave me something to think about. Thank you for sharing your experiences so movingly.
Jaime Banks
Hi, Momma Zipper:
Thanks so much for checking out the blog. I’d love to spark some kind of on-going conversation about this film, which I admired in many ways, but which ultimately left me wanting so much more. Would you share your review??
I must tell you that I adore you son (and you can tell him I said so!) Meeting him in MT this past summer was definitely an all-time FD highlight.
I look forward to checking out your blog and sharing more thoughts with you.
Best – Cheezy
Well, we have a lot in common bc I adore him too, and he adores you, so I think we’re all bound to adore one another! 🙂
My review is at http://cancer-mom.com/?p=145. I would love to hear more of your thoughts about the film, and I’m curious to see what Zipper thinks of it. You did a great job of explaining why it bothered you, and I totally get it. It was easier for me to overlook the film’s limitations and accept the glossed over parts because it was a little like our story, but not exactly. If the film had shown a teenager with cancer going through high school without much of a hitch, I would have hit the roof! And I bet that’s how the film felt to you – hardly skimming the surface of what the experience was really like.
Look forward to continuing our discussion,
Jaime
It’s hard to know how I would react to a film that told a story with more parallels to my own. So much of my experience with cancer is tied up with the fact that it was reproductive, causing me to lose my fertility literally overnight. As a young married woman trying to start a family, who then went through a course of treatment known to be particularly grueling (lots of people don’t even tolerate all of the cycles), my experience looked objectively pretty different from Adam’s. I’m sure if I could play a tape of the 7 months I spent out of work, I wouldn’t just see endless hours of footage of myself curled up in a ball crying, but when I think back, that’s what I remember. But that part of the experience, like so many others, is unique to the individual. I’m sure I was “stronger” than I felt, and maybe to people around me, my emotional response to my illness wasn’t that different than Adam’s. But again, when I think back, I think about my rage and sadness and fear.
I am so glad the film was meaningful and resonant for you. I am thrilled that it was made and that it’s gotten some good exposure. It will be interesting to see if this opens any sort of floodgates as far as a increasing the visibility of the conversation about young adult cancer.
Cheezy – Your blog was far more meaningful and resonant for me than any film could ever be, short of a documentary maybe. I don’t think a screenplay and actors could ever do justice to the young adult (or child or adolescent) cancer experience. It’s just too life-changing, too shocking, too overwhelming. The only way to understand the impact is to know someone, like you, who has lived it. Your writing is so expressive. I hope you’ll continue to share your story (which, I know, is still evolving).
Momma Zipper (love that name!)
Hi Emily;
I also experience doubts about the validity of my story. I wonder if my lengthy survivorship makes me nothing more than a boring narcissist. Though the urgency to post on my blog diminishes due to this period of smooth sailing, I remind myself to be patient. Like the marathon you aspire to complete, there exists a period during the run when you feel comfortable and forget that the training got you to this point. Still, “the wall” looms.
You are a strong writer. I enjoy reading about your doubts and affirmations. They are relevant on this other dimension of cancer survivorship we occupy. The dichotomy between Planet Cancer and Planet Earth resonates and informs our life going forward. I expect it will inspire you as a mother much as it has inspired your writing.
Be well,
John
Hiya Emily;
I remember you from Planet cancer :). I did like the film but agree it did miss the mark on the showing the isolation and the eyebrow thing bugged me as much as the moustache thing from Breaking Bad ;). Don’t they know chemo makes you lose ALL your hair!?>..<
No matter how long you're out of treatment, cancer never really leaves you does it? 🙁 It's like a Dementor; always circling around you; sometimes barely in sight, like a half-seen spectre outside your field of vision and other times, it's right in front of you blocking your way forward.
At any rate, I am working on a short film depicting the so-called 'dark side' of surviving cancer as a Young adult and if you'd like to share your story, I'd love to have you!! 🙂 I've only got a bunch of raw footage shot, but am starting interviews and narratives this Autumn.
Let me know if you want to participate :).
Website address above ;).
Cheers!
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