Smiles to Smirks

Couple of weeks ago there was that little stupid news tidbit that some guy created a mirror that only shows your reflection if you smile while looking at it. There were a few “forcing cancer patients to smile” type of clickbait headlines, and I admit, I fell right into it. Now that I’ve taken a step back from the heat of the moment—I wish to ponder, as I so often do.

My smiles turn to smirks or something. Oh and yeah, flipping people off too!!

Yeah, “forcing” was a bit over the top. While making a mirror that only works if you smile at it is kind of “forcing”—it ain’t like there aren’t other mirrors to use. This was pointed out in the furor of comments on the mainly derisive think pieces written about it.

Oh no, I’m not giving the guy who created the mirror a free pass—Hell no! I still think he was wrong-headed even though he had indeed taken inspiration from an ACTUAL CANCER patient. (Just one as far as I can tell.)

I’ve used the “if you don’t like it don’t use it” argument myself. Don’t like a TV show, think it shows the degradation of our culture—change the channel! Ain’t nobody forcing you to watch racy things you disapprove of! I admit I had a harder time a few years ago when Needless Markup, whoops, I mean Neiman Marcus, was selling collard greens at a ridiculous high price for the holidays. Sure, it didn’t matter really—I can make my own Hoppin’ John and collard greens, I’m good at it if you must know. But there was something, I don’t know, “icky” about some fancy Big City company charging a high price for poor people food. (Anyone asks for my recipes, I kill ‘em, just so we clear, OK? #RedneckLife4ever.)

But hey, no one FORCING me to look into that mirror, I get it. The “you can change the channel/turn off TV/not buy overpriced White Trash food” argument can be used against me. So why does this mirror—that I don’t have to buy, and will likely never see, bother me?

Hahaha, anyone reading my blogs for a few years knows, I ain’t got an answer or solution or anything!

So why bother, why get into a lather?

I don’t know. I don’t want to invoke the slippery slope clause here. But it does make me wonder, why on earth did the developer think this was a good idea? Given the number of derisive articles and snarky tweets I saw, I think if he’d done a little research, maybe he would not have moved forward with his idea. But I don’t know. I mean, it IS true, if one smiles, it releases endorphins that make one happy. But I don’t wanna smile, I don’t wanna “fake it ‘til I make it in CancerLand”. Bottom line, why should I?

I think I got annoyed because for me, it reinforced the idea that just won’t die: “cancer patients need a push to be cheerful and all will be well.” It’s like it just never occurs to people to just ask us what we think, and to listen to us. Just listen. Not judge. Not comment. Not “do something” to cheer us up—because I still think that only benefits the people around us—not us, actually.

In other words, I’m not sure this was to benefit cancer patients, so much as it was a ploy to make everyone comfortable about cancer. And we all know I hate that!

So what about those that questioned why this mirror encountered such a backlash? What about those who thought, just don’t use the mirror?

I can never make them understand. People who only understand things once they actually experience them—ugh, that is a subject for a future post, I don’t wanna go there today. I can only comment this:

A culture that we occupy, in which an art/architect student thinks a mirror like this is a “good idea”, we have miles ago in our quest to make others understand so very much about cancer.

So in short, this mirror made me tired, like everything else that happens in CancerLand. Why do we have so far to go?

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You First

Once upon a time, or maybe 2 years ago, I got mad about something and wrote a post called Mean Streak. I felt kind of bad about it, hence the name and tone of the piece. I really wanted to call the post YOU FIRST. The current political climate in America has erased any guilt I feel about thinking YOU FIRST in response to the stupid argument: “we are all going to die someday”.

For those in the TL;DR class–what I was mad about 2 years ago was some damn social media comments on Angelina Jolie choosing preventative mastectomy due to her BRCA+ status. Some jerk went on a tangent about how we (Americans? society?) waste too much money on life-extending medical procedures, whether they be preventative exercises like Jolie’s, or those in the end stages of cancer, taking whatever medications they can, price be damned, to have a few extra weeks with their kids. He argued that we all die, and it was irresponsible (or something) to leave the family with a mound of medical debt. The “we’re all gonna die sometime” is a particularly callous point of logic when you are the one closer to death, believe me. Because, yeah, it is true, we indeed ARE all going to die at some point. Where things get tricky are the who and the when and the how.

For most of 2017 the repeal and replace debate has dragged on, zombie bills keep rising up. Those of us who’ve benefited from the Patient Protection and Affordable Care Act live on tenterhooks. In my activism role, I have been haunting the dark areas of the internet–political Twitter–and have often been enraged and sickened. Actually, I kind of stay that way. I remember being so upset when Kennedy was on Fox News and used the “we’re all going to die someday” argument, embellishing it with things like liberals don’t have a direct line to heaven, so there is no way any of us can know exactly when we will die. Her conclusion being that activists should settle down about whatever zombie repeal bill was in the news that day.

Note–most people know by now, but if not, yes, Kennedy was that annoying MTV VJ back in the 90s, hosted “Alternative Nation”. I did not like her back then, and I absolutely loathe her now.

Oh Kennedy, instead of being on MTV, you should’ve taken some classes in math or stats & probabilities or something. Granted, I avoided those classes too. But having cancer, I’m a little more aware of how it all works. For me, it is so, so simple. If I cannot afford health insurance, I will skip all my annual visits–oncologist, gynecologist, and even the GP. If cancer comes back, it will not be found. If it gets to the point I notice it, and it is found, I will not get treatment. See, that’s the advantage of having cancer a few years ago–I know how much every little thing costs. So I will die. Now, maybe I only have a 20-30% chance of recurrence, that isn’t too bad. Except guess what? I’ve been in those low probability categories before: my chance of getting cancer was not 1 in 8 (that’s lifetime risk), it was 1 in 233 (age 39); only 20% of us are HER2+, mammograms are only 80% effective–guess who got a false negative? So yeah, I’m not a fan of probability.

Sure there are many “ifs” in my line of thinking. So I can’t just jump to a slogan of “repealing ACA will kill me!” No, I don’t know this for sure. I just know the probability of repeal being a factor in my death is higher than that of Kennedy’s probability, or anyone else making that stupid “we’re all gonna die sometime” argument. See what I mean? Understand why I get angry about it?

Kennedy made this comment earlier this year, in the summer. I just shut it away because I was SO angry, and because, as my fellow resisters know, there are just too many things happening all the time now. I literally cannot pay attention to every little thing. But the memory of it came roaring back listening to Mike Pesca’s podcast “The Gist” last week. He was interviewing one of my favorite health policy reporters, Sarah Kliff, and they were discussing if slogans or arguments that cutting CSRs, Medicaid, and Medicare would really cause actual deaths. Kliff, being smart and journalist-like, cited studies proving yes indeed, a line, however long, can be drawn from lack of health insurance to death outcomes. Like my own example, there a number of “ifs” in that line. But, like I said, I had some improbable things happen to me, and it ended in cancer, and it sucked. I realize Pesca was just pointing out that hyperbole-style slogans are not exactly accurate, there is a great deal of explaining that has to go with it. He isn’t wrong; I’ve always had problems with breast cancer awareness slogans. Easy, tweetable things like “a mammogram saved my life” or “early detection saves lives” are debatable. Don’t get me started on the “feel your boobies” shit. But I see how they work. Easy, short messages succeed–along with cute merch, of course. So I engage in hyperbole–in spite of hating it–my own self now. Yeah, stopping CRSs, repeal without replace, that stuff will kill me (quite likely, see I have to include a disclaimer at least here, just can’t go full hyperbole).

So is it any wonder, now that I embrace overwrought slogans and bitchy quips, that when someone uses the pithy “we all gotta die sometime”, that I snap back with “yes we do, but you first!”? And, no, I don’t feel bad about it all. Two years ago, I did feel bad. I know it isn’t a nice sentiment. But the crass times we live in, with the lack of civility, have cured me of caring much if I sound downright mean. I remember crying on November 9, 2016. I was sobbing on the phone, explaining to my mother that I felt that this country was telling me it did not care if I died, because so many people voted in a Congress committed to repeal. She thought I was making a leap. But given the amount of “we all die sometime” sentiment I see expressed around the repeal debates, no I was not making a leap.

The healthy privileged in this country can glibly state the obvious, factual point that we all die at some point. But because of their health privilege, their employer-paid insurance plan, their likelihood of dying sooner rather than later is less than mine, less than that of my friends.

If it is so easy for these people to say “we all die sometime”, disregarding how it sounds to those who’ve gone into medical debt for every life-extending treatment they can, disregarding how it sounds to those of us about to lose health insurance, then I have no problem answering, “yes, but you first.”

I want to live. Don’t underestimate how much my will to live will make me fight you and your stupid, flip arguments.

Grateful for the REAL Tweets!

A GIGANTIC thank you to all participants of Saturday’s Tweetstorm and/or Thunderclap!

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While we did not get #BreastCancerRealityCheck trending, we did make an impact. Over 3,000 tweets last Saturday, far exceeding last year’s 1,000! We couldn’t have done it without you!

Of course, we (@barbieslosingit, @bccww, @abcdiagnosis) keep checking in on the hashtag in Twitter, and we are encouraged to see everyone keeping it going, continuing to share all the realities of this horrible disease we share. By continuing to shine a light on these realities, we remind the world that the sanitized story repeated ad nauseam is FAR from the whole picture.

Keep sharing YOUR reality, don’t let anyone stop you. You are NOT being depressing, or merely complaining. You are telling YOUR truth, and letting others who may get sucker punched in the future with a diagnosis, that they will not be alone.

 

Let’s Go!

Now is the time, and the hour will soon be upon us. It is now up to you to make it happen!

What is the reality YOU want everyone to know?

I think about how the months from October 2010 to the end of 2012 were what I still call “the lost time”, because I was in treatment, and then dealing with depression and fatigue even after treatment ended in January 2012. An event from that time comes up in conversations, and I just don’t remember it–just one of the million little ways cancer still impacts me.

I think about how I celebrated the first time, somewhere in 2013, I was able to stay awake from about 7AM until the 11PM news without a nap (note I don’t say I got to watch the whole news program, I only made it to 11, ha ha).

I remember having insomnia, and reading to pass the night away, and found an article about how insomnia can cause cancer, which….gave me more insomnia.

I think about bigger issues, less personal stories, that are my personal pet peeves in cancer advocacy world. If I see one more BCAM tweet equating early detection with early prevention, I swear, my head will start spinning, Exorcist-style.

What are the realities YOU will share?

Flex those fingers hovering over keyboards and smart phones…

Get ready, get set….and tweet, tweet, tweet!!!

 

Ready…Set…

Tomorrow is the big day! There’s still time to sign up for the Thunderclap–if you already have, please ask your friends to join in!

We cannot say we’ve exactly “enjoyed” reading all the tweets/stories that ARE your personal realities. Because, well, it sucks that any of us had cancer, it sucks we have to do this reality check to counter all the fairy tale stuff out there. But there is a lot of clever humor in some of your tweets. But most importantly, these tweets and stories remind us all that we are not alone.

That said, we cannot say that we exactly “look forward” to all your tweets during the hour-long tweets storm (10amPDT/1:00pmEDT/6:00pmBST), but we look forward to all the witty, funny, sometimes sad, community-building that will take place.

Click on image to sign up for Thunderclap!

A Few Tips for Tomorrow:

While we all strive to get #BreastCancerRealityCheck THE trending hashtag for the hour (10amPDT/1:00pmEDT/6:00pmBST), we encourage everyone to use ONLY #BreastCancerRealityCheck in the tweets. Hashtags such as BreastCancerAwarenessMonth, ThinkPink, PinkIsNotACure are pretty well used!

Not going to be near social media at the appointed hour tomorrow? No sweat! Use Tweet Deck or some other dashboard application management tool and schedule tweets ahead!

Be real, be you. A reality check is about informing others what having this disease is REALLY like. We know some businesses will (again) see the hashtag and use it to shill pizza or something (yes, that happened). But that is not what this is about. Move beyond the dominate narrative, the crass cause marketing. Above all BE REAL.

See you tomorrow!

Y’all Rock!

We have reached our threshold of 100 sign-ups for Saturday’s Thunderclap. That means at 10amPDT/1:00pmEDT/6:00pmBST your–our–message will be sent out into the world:

“Breast cancer stories are NEVER pink fairy tales. ~1,430 die per day. Tweet your truth! #BreastCancerRealityCheck

Y’all who’ve signed up just ROCK!

If you haven’t signed up yet, you still can, and please do! The more of us there are, the louder will shall be.

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But it won’t stop there!!

For the hour after the tweet happens, tweet the heck out of the #BreastCancerRealityCheck with YOUR dose of reality.

We WILL be heard!

Again, we cannot thank everyone enough for joining in, for chiming in. We especially thank our friends over at The Underbelly for helping us get the word out–your support is EVERYTHING.

All Hands On Deck!

Saturday is just a few days away–the day we want to get #BreastCancerRealityCheck trending!!

Have you signed up for the Thunderclap yet? If not, what are you waiting for? We need AT LEAST 100 people to sign up, or the automated tweet/Facebook post will NOT happen. So sign up, and get your friends to sign up as well!

And get your reality stories ready to tweet out on Saturday as well. What would you like to see different in Breast Cancer Awareness Month? Now is the time to demand that change!

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Be Heard Above the Noise

Yesterday was a difficult day in America. To be honest, for the Ol’ Curmudgeon, everyday for the past year has been an overwhelming cascade of outrage after outrage. I’m stretched pretty thin, and admit–I don’t really “see” some of the Pink Nonsense that I recognize is irritating so many of you out there. See, I’ve seen it so much in the past 7 years that it seems like “old news”.

But I am reminded by so many of you–this is still VERY important. How can we expect to change the culture unless we keep up the pressure, unless we keep pointing out how wrong society gets cancer, unless we keep educating?

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There is so much going on, it is like a ongoing din in the back of the brain. I write this with ALL my media turned off (I usually have at least some music on), just pure quiet, and I still hear the din in my mind. I imagine it is like this for many of you.

But I will shout and be heard above the noise, both in my head and the stuff coming at us from every device we own.

This still matters, too. My–OUR–friends are STILL dying from mets breast cancer, and every damn October that just gets buried under a lot of pink fluff and smiley races. I just..can’t…I refuse to shut up about it. My resolve is stronger than ever. How about you?

Join @barbieslosingit, @bccww, @abcdiagnosis, and yours truly Saturday. Sign up for the Thunderclap and then tweet out your reality using #BreastCancerRealityCheck

Shout Down the Fractured Pink Fairy Tale

Join us for the Second Annual #BreastCancerRealityCheck Thunderclap campaign. In 2016 our message had a social media reach of over 200,000!

The #BreastCancerRealityCheck tweet: “Breast cancer stories are NEVER pink fairy tales. ~1,430 die per day. Tweet your truth!” will be sent out by the automated Thunderclap system at 10amPDT/1:00pmEDT/6:00pmBST on Saturday, October 7th from everyone who signs up.

Click image to sign-up for the Thunderclap!

The more people you sign up, the more ‘social media reach’ it gains as it will go out to all your followers–and maybe they will sign up and reach their followers, and so on…

Then There’s the Twitterstorm

After the automated Thunderclap tweet goes out on Saturday, October 7th it’s your turn to get tweeting!

For an hour, starting at 10amPDT/1:00pmEDT/6:00pmBST, please use #BreastCancerRealityCheck to FILL our timelines with info and personal stories that:

  • Move beyond superficial “raising awareness” to focus on more education and research that will SAVE LIVES
  • Dispel the myths about prevention and early detection
  • Reveal the candid realities of people (women and men) living with ALL stages of breast cancer
  • Provide less-known, harsh facts about secondary/metastatic breast cancer
  • One of Breast Cancer Awareness Month’s favorite ‘pink fairy tale’ messages is that early detection saves lives. But what most people still don’t know is 20-30% of all early stage breast cancer will become metastatic breast cancer. THAT is the killer.

You can do your part to help stop that killer. Sign up for the Thunderclap tweet campaign. Participate in the one-hour twitterstorm. And keep using the #BreastCancerRealityCheck hashtag for the rest of October and beyond!

Reality Trending

I sit here a few hours away from the start of Pinktober, hating myself for writing Pinktober, because all I wanna do is buy Halloween decorations, costumes, pumpkins, peruse candy selections, and put on my new purple-with-bats-on-it dress. I want to immerse in Halloween. In fact, in a few minutes I will watch The Wolf Man (the Universal classic Lon Chaney Jr. version of course) on some silly old-timers TV channel.

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But I was reminded throughout the day that breast cancer awareness wants to quash my orange gourd dreams. And it has just been too hard for me to let that pass. Too many newly diagnosed cancer patients, too many people dying, too much crass opportunism profiting off of “my” disease. Too many brews and boobs events being advertised as I wander around town. Worse, a local support group sent out a newsletter referring to October as “our” favorite month of the year, since it is “our” month. I had to laugh, knowing so many friends who LOATHE it.

So we have to speak up, speak out, and try, TRY again, to inject some reality into this madness.

Stay tuned this week to sign up for our Thunderclap. We hope to get #BreastCancerRealityCheck trending next Saturday, October 7. We ask everyone tweet the heck out of the hashtag during the 30 minutes before and after the scheduled Thunderclap; hopefully the concentrated tweet storm will get reality trending.