What Gets Lost in Translation

This is another “cancer language sucks” post. And yes, it is about the celebrity stories and wacky headlines bombarding the entertainment news sections: Rita Wilson and her 100% healthy and cancer free—which it seems she actually did say; Former President Carter’s cancer free status, though I think that was said about him, not sure what he actually said; and the completely baffling story of Lorna Luft and her seven ribs. I admit, I gave up reading pieces about her, could not figure out the details and her clichéd quotes, her need to adhere to the culturally approved cancer script, just sickened me and I gave up.

I’ve written about my rejection of the terms like survivor and warrior (here and here, that’s two in my mind, too lazy to look for more), and no doubt will again. I’ve especially written about my confusion about remission. I cannot recall exactly what phrases any of my oncologists have ever said to me. While never grim, they were always cautious. I do not remember anyone using NED with me; I picked that up via social media. I’m sure no one ever said “cured” or “cancer free”. The vibe was always: “we don’t see any cancer, and your chances are good, but let’s keep an eye on it all”. I was told from the very first meeting with the oncologist the odds of my kind of cancer (HER2+) and stage coming back. I was always aware it could go other places, and was told how lucky I was the cancer had not reached the chest wall—tho’ it almost had reached it.

But the general population just cannot understand all of that. I’m learning some cancer patients don’t understand it fully either, and nor do they try. I am still in slight shock, all these years later, when I think of that little “live healthy post cancer” workshop I attended—in a room with about 10 other women, none of them understanding what I meant when I announced my stage and type at the meet and greet part. “HER2? What does that mean?” Guess they were all estrogen receptor positive? Good thing a triple negative patient wasn’t there that day.

People like a beginning and an end—a cure, and end to treatment, and the absence of ever needing to think about cancer again. They like slogans and soundbites. And everyone especially likes a happy ending. A story about a former president’s cancer, the idea it might come back, but given his age, something else will cause his death earlier—that is too confusing! Better to simply think he “won”. An aging actress on the road with her play needs to reassure potential ticket buyers all is well; she’s going to be in the show coming to your town next year. Sell the joy! And so what if, 15 years from now, a small news item in the back pages appears announcing her recurrence and quick death—“I thought she beat that”, people will think before quickly forgetting the story and moving on to the latest young pop stars’ exploits.

But here’s the thing.

When celebrities and headlines go on and on about “cured!” and “beat cancer!” it confuses the people we—regular average cancer patients—have to interact with every day. What do I mean I have an oncologist appointment? Didn’t I finish up with cancer years ago? Old old old Jimmy Carter beat cancer, why can’t I? Look how peppy Joan Lunden is, why isn’t my breast cancer over and done with? Do I really need to point out that celebrities stick to a cancer culture approved script? Am I being too hard on actors and TV talks show hosts for needing a script rather than thinking and speaking for themselves? Whoopsie, did I just write that out loud?

Words matter, as so many inspirational posters like to remind us. A little celebratory slip of the tongue: “I’m cancer free” confuses the cultural conversation around cancer. And that is why so many of us in CancerLand got so bent out of shape about these stories. People without up close and personal cancer experience will happily go back to their fairy tale (My Reality and Your Fairy Tale), and assume the celebrity is “all done”, and cancer is curable.

It seems once I got my cancer diagnosis, I learned a second language. NED, estrogen receptors, chemobrain, pinkwashing, argh, do I need to go on? I do find myself translating at times. And it seems that the area of language in which we CancerLand residents must be MOST careful is when discussing the after-treatment (if there is even a post-treatment status, because generally for Stage 4, there is not) time. So when Rita Wilson says something like cancer-free, we find ourselves having to explain so much. And it is tiring.

This brings me to another little tidbit of translation, or more like re-defining words.

Reading FB comments is always a hazard, I know, but of course I did and the typical stuff happened in threads about Wilson’s news. A few advocates attempted to explain and correct the “cancer-free” issue. Naturally, those who believe that any kind of truth-telling automatically equals negativity, began to scream about it, calling the comments “toxic”. I’m not as active or strident as breast cancer advocates; unwilling to “get into it” very much. But I could not help but chime in with my annoyance at this. I mean, come on, why call a different opinion toxic? Isn’t that a bit overdramatic? In my mind’s eye, I saw a person clamping hands over ears to shut out the opinions they disagree with. And yes, I over-dramatized myself, picturing Gollum saying “not listening, not listening!” LOTR nerds will know what scene I’m referencing.

It irritates me that thoughtful dialogue cannot occur without the situation devolving to this. I found myself wanting to engage in a little careless re-defining or mis-translation myself. I get sick of reading about false positives (because I was a false negative). I know what it really means here in CancerLand, town of breast, but I have this fantasy. I want to call all these people who redefine words like toxic, who think cancer is curable by eating right and keeping a kick cancer’s ass attitude, I want to call these people “false positive”. Because to me that is what is going on: thinking something is one thing, and maybe it isn’t. So part of me is like, OK fine, embrace the positive-negative dichotomy and let’s hope you don’t end up bitterly disappointed in your mistaken idea cancer is really, really gone.

But of course, it is not in me to do that. I don’t like the misinterpretation of words and concepts. And I am tired of the strict black and white boxes being forced around the cancer conversation. Spouting facts does not equal being negative—looking at stats and numbers can actually be quite apart from such silly notions as “don’t be a negative nelly, be positive”. That kind of black/white, half-full/half-empty thinking must come to an end. Embrace the complexity of life, people!!!!

But then, who am I kidding? Everyone wants pat slogans that translate to their liking: “cancer can be cured!” Conversation over, and what have we lost in translation?

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But Not Too Real, OK?

I was trying to avoid all effort of any kind last weekend. I wanted to just sit on my butt and do nothing—well, maybe read or watch TV. I chose the latter, and landed on a “Brady Bunch” re-run.

I do not remember the episode from childhood, although I’m sure I saw it back then. In it, Mrs. Brady attempts to write a magazine article about her life with 6 kids, the blending of 2 households, all that jazz. Her submission is turned down by the head of the magazine for not being positive or uplifting. So she rewrites and sanitizes her piece, makes the kids seem like angels and their lives ideal. Of course the fairy tale version gets accepted, and an appointment with a group of magazine staff at her home is made to photograph her, do a little background on her family. Naturally everything goes wrong—miscommunicated time leads to her answering the door in hair rollers, the kids are arguing, one of them has poison oak—you get the idea. Normal life with kids (I guess). Mrs. Brady is mortified of course, but the magazine staff is delighted, and wonders aloud to her why she did not write THIS—real life with troubles and disappointments—challenges of a modern household. She does, it gets published: happy sitcom ending at last.

Despite my aim to not do ANYTHING as I vegged out in front of the tube last Sunday, I could not help but contemplate the meaning of “real life” in Brady Bunch Land, and compare it to our current cancer culture. Now, given that it is the weekend again as I write this, and it is the holiday season and I’m just exhausted, my thoughts aren’t going real deep or anything—more of a passing ponder. I’m sure some social/pop culture critic/anthropologist can take a better crack at this.

Things like poison oak, screaming and arguing kids, answering the door less than camera-ready are not disasters compared to cancer. (I know, I know, I HATE the comparison thing, and I know that just because someone’s struggle is minor compared to others I should not diminish said struggle—but indulge me here, OK?) In fact, as someone who once answered the front door wearing pajamas at 3:47 PM one December afternoon (hey I was ready for bed!)—I found Mrs. Brady’s hair-in-rollers-yet-makeup-perfect-and-cute-lounge-robe-at-the-door laughable.

This weekend, catching up on blog reading, I came across a gentle criticism of pictures used on social media when another metster dies—always an old photo from the time the deceased was still relatively healthy, or at least not in the final days of wasting away. The blogger prefers the VERY few times patients have posted those less than photogenic pictures of what those last days really look like.

I think about this blogger’s words. I think about Facebook constantly removing pictures of breasts in the process of reconstruction. I think about how bald heads are now considered “real”—think about that fracas in October 2014 when a morning TV program did not want to feature a Stage IV patient because she was not bald like a “real” cancer patient. Even society’s version of real is kind of fake! We have this language of “grit”—the warrior/soldier with a bald head—but otherwise looking hale and hearty—wearing boas and heels, or tastefully/professionally photographed mastectomy photos, the new breastless nude that is maybe just as fetishized as the bald beatific smiling warrior (see Random Thoughts On Baring the Scars for my worries on that subject). I think about that scene in the final “The Hunger Games” book, when Katniss is “too scarred/ugly” for the propaganda video to be filmed—no, they make her pretty then artfully use make-up to create new, less scary, more visually appealing and inspiring scars. (Just read a fascinating essay reminding me the books were inspired by our current reality TV shows, and all the implications of that.)

A fake real is what we want. Don’t make it too real. Or hopefully your reality is just Brady Bunch cute.

The debate about how much to “show”, about deathbed selfie culture/oversharing will rage on. I recently read a piece that took a jab at the country star and how the blog/pictures chronicling her final days are boosting record sales. A paragraph about Jolie’s publicized surgeries and how her essays allowed her to control her image while appearing to share “realness” for reasons of awareness-raising struck a chord for me. She was real—but only in a managed “I woke up like this” way, maybe? Is it annoying when celebrities do it because they might gain fame and success, but in cases of regular patients who are really trying to tell it like it is, it’s OK? I admit, I was reminded of the Keller’s attacks on Lisa Adams when I read the piece. Not the same, but the underlying sentiment made me wonder if the writer was even aware of that fracas a few Januarys ago. (And the near universal praise for the “real” surgery dancer, see here.)

What is real and when is it too much? I don’t share pictures of myself very much because I dislike the way I look. But I’ve not held back (too much) on exposing my ugly thoughts. Are they too real? Do you recoil?

I’m not sure many people are ready for REAL reality, despite the popularity of reality shows.

“I fake it so real I am beyond fake”

“Doll Parts” by Hole, Courtney Love knows a few things about real/fake I wager!!!