Your Phrases Are Problematic

I’m so behind on everything. I started this post when I listened to a podcast that was over a week old—and that was in the first week of the year. It was one of those year-end specials, about the most hated/loved words/phrases of the year. So, yeah, I’m writing a post inspired by a year-end list about 2017, more than a month into 2018. Good grief.

I like segments about language; I guess it’s just the old English major in me. I was walking along and chuckling when the host and her guest started in on how much they hate words many of us in CancerLand use: Narrative and/or My journey.

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In the process of making fun of the phrase “my journey”, the host and guest did poke fun at what I—not they—would call “disease culture” (is that a thing—and BTW “a thing” was also a hated phrase of 2017). They poo-poo’d the over-dramatic element by invoking an imaginary patient “on their psoriasis journey”. Yikes! I don’t know if they got any backlash  from the psoriasis community, and if they did, they kind of deserve it. I mean, yes, I got the point, but it was a bit tone deaf. Or maybe I’m just a bit sensitive to this sort of thing.

Now, I’ve complained about words and phrases in our little breast cancer culture my own self (see Some Word Problems). And I’ve said a few times here and other SM platforms that I dislike “my journey”. I try not to trash it too much; I know others like the phrase. I definitely use the phrase “dominant narrative”. Why? Well, because it is easier than saying what I really mean: that rah-rah, sappy, personal tragedy-to-triumph story that has become such a cliché when reporting on warriors gonna-beat-this-thing-while-smiling-and-wearing-feather-boas that all TV and media seems to think ALL breast cancer “survivors” embody. I mean—look at the sentence I just wrote! Hell yeah I’m gonna say/write “dominant narrative” and I know everyone will know exactly what I mean! Ugh!

At any rate, this podcast made me feel a little weird. You know, that odd defensive way, when you feel allowed to shit on something that is YOUR thing, but when others do it, you go crazy defending that something. Like, I poke fun at how rural and redneck my town is—but I get VERY offended if anyone from ANY OTHER place in the world says the same thing. You know what I mean. So, I didn’t like that these podcast hosts were poking fun at “narrative” and “journey”. What right did they have?! I was indignant!

In fact I have to make a strange confession here. I roll my eyes all the time on this blog (for how many years?) about all the pink and the breast cancer culture, and the over-bearing-ness of it all. But I get mad sometimes when people with other cancers do it. You can see that anger a bit in some old posts. It’s like, why has breast cancer become the scapegoat? Of course I know damn well why, but, still. I’m sure what really bugs me is a suspicion that those doing this scapegoating assume ALL of us breast cancer patients are full-on embracing the pink madness. It is a common mistake I see often.

Whoops I rambled off there.

So what is to be done about the overuse of “narrative” and “journey”? I honestly don’t know. It’s a shame some words get overused, become trite, meaningless. And worst of all, eye-roll inducing. In fact, the name of this post is a re-wording of a book or essay I once read—“Your Fave is Problematic” (I think). Funny thing is, once after I read the piece, I read another piece saying—you guessed it—calling anything “problematic” is, in fact, problematic.

This is quite revealing, isn’t it? Maybe the real problem here is again, information overload. Everything, like the news cycle, is accelerated these days. I love reading books about slang, and I remember being surprised how long some things had been around and were not yet considered overused. I still say “cool”, I probably overuse it, but it seems normal. On the other hand, no one says “daddio” anymore—or do they? Did that get old quickly? I get it, I’m sick of many words and phrases these days my own stupid self.

Now to bring it back to cancer, (because this IS a cancer blog), I cannot help but wonder how many people NOT in disease communities, like the podcast hosts, are tired of the way we (patients of various serious illnesses) speak? I do consider this kind of risky. With all these cancer people, myself included, talking about journeys, will people just stop listening, and our message go unheard?

Even though I’ve been sharing “my story” here on this blog for years, I do roll my eyes when I hear about people “sharing their stories”. Again, it seems so trite. But on the other hand, I’ve become tolerant about “stories” in the last year. I know that “sharing my cancer story” works as I advocate in health care politics. I’ll keep using it, shamelessly. I have to—I’ll do anything to protect my access to health insurance. Otherwise I face potential catastrophe. And why shouldn’t I? Our POTUS, love him or hate him, uses narrative masterfully. This was a key point repeated by pundits and critics after the SOTU speech the other week. In fact, he weaponizes the technique. But I can too.  Stories trump facts most of the time. Anyone paying attention to the ongoing “facts and stats about mammogram effectiveness vs the ‘mammogram saved my life’” saga knows this is true.

I claimed at the start of this post that I like things about language, I have B.A. in English Literature, and heaven knows I’ve screamed at journalists (here on this blog) to come up with a better way of announcing celeb deaths than “…lost his/her battle with cancer”–it is their profession for crying out loud! So surely I can come up with a better way to describe all these words—my story, my journey, my narrative—that I use to counter the “dominate narrative”. I will give it a little thought, but not much. Because I have too much work to do—telling my story, so I can challenge, and hopefully change, the dominate narrative.

It’s a real journey. Ha ha.

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Thanks and Congrats!

With a reach of about 9 million, YOU and YOUR wonderful tweets about the REALITY of cancer made #CancerRealityCheck a success yesterday!

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Of course, it is difficult to read the tweets at times, and even more difficult to compose them–we all know this. But it is even harder to live it, the way we live it everyday. And we know cancer will not be eradicated any time soon. How many more are being diagnosed this minute, as you read this? How many will be shocked at the reality of the experience, will think, “I wish I had known this before”?

From little things, like the constant fatigue many of us (still) deal with, to the big things, like the gut punch of seeing the names of dead friends in a contact list, these are the realities of cancer. These are the things that just never seem to make it into the inspiration stories we see on TV. All we want to do is get a little honesty out there.

And you did that.

Please keep using #CancerRealityCheck when you want to drop a truth bomb out there. And stay tuned for future efforts to get the hashtag trending, for future Twitter storms.

With gratitude,

  @curmudgeo 

Louder Together

In this last few hours, I implore all to spread the word about our #CancerRealityCheck Thunderclap. And to participate in the Tweetstorm for the hour after the Thuderclap (details below). The more of us speaking up and out, the more likely we’ll be heard. Global stats about cancer deaths are staggering–so many of us have cancer! Think if we all spoke up about that reality!

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I know, it will be on a weekend, things are going on. Personally, as an American, after our storm I will be all #FlyEaglesFly. So, please, just take this one measly hour to tweet about the realities of your cancer experience.

Here are the details:

Sign up for the Thunderclap to take place on Sunday, 5 Feb (4 PM in the UK, Noon Eastern US, 9 AM Pacific US times). Tweet your experiences the hour after the Thunderclap, using #CancerRealityCheck.

Remember it’s the amount of TWEETING and the amount of people RETWEETING your tweets that will get us noticed AND (this is important) ONLY use  on the tweets as this will help to trend – using any other hashtags will diffuse and dilute the message on the TRENDING board!

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We(@bccww & @abcdiagnosis look forward to reading some great tweets!

It’s Up To Us

How many times have you rolled your eyes, and/or sighed, while saying, “People who don’t have cancer just don’t get it”? I can tell you I’ve done it more times than I could count. I still think it too. In fact, my blog is generally written for people who have cancer—I write with that specific audience in mind. I don’t waste space or time explaining issues and jargon for uninitiated readers. I do this because I remember what I was like before I got cancer–I never read anything about it. There’s just too much information out there to read, hear, and watch. If something does not directly impact me, I cannot allocate time to it. I’m sure most people are like this too; this information overload age is just too overwhelming.

But here’s the thing—and there’s always a thing, right?!

I’ve challenged myself on this view quite a bit in the past year. And the notion I keep coming back to is this: Maybe it IS my place to explain cancer issues. Maybe it’s….not my JOB, exactly…let’s say maybe it a role I willing take on.

You see, it is oh so easy to dismiss the people who don’t get it, because they have yet to experience cancer in an up-close way. We are all too busy, too distracted, too tired, to take it on. And why bother trying to convince people who are unwilling to take the time to read or listen to our words?

It is also oh so easy to dismiss Twitter and other forms of social media as armchair (sl)activism. I know that they are, to a degree. But guess what? Often, other media reports on trending hashtags. We all know the impact of viral videos. To dismiss Twitter storms and trending hashtags as silly Internet stuff is to sorely underestimate how much these things steer national and global conversations. Believe me.

It takes a great many of us to tweet about #CancerRealityCheck. But just think of the impact if we get it trending! What is it you want others to understand about your cancer experience? What do you wish would change about the way our culture treats/understands cancer and cancer patients? Personally, I hope that with enough Twitter storms, I’ll never have to see another “what I wish I knew before my cancer diagnosis” article again. I was sucker punched by my own diagnosis. I’d like that to never happen to anyone else.

Please join @abcdiagnosis @bccww and myself on Sunday in taking on the role and helping others “get it”. If not us, who will do it? Because we can, you know.

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Sign up for the Thunderclap, and tweet your reality for that hour after it happens (see previous blog post for details). It is up to US, to YOU.