No Participation Award For You

I will try not to be harsh when I say to anyone out there doing the silly “awareness” selfies, doffing your bra (groan), or even buying useless products with ribbons, that you are not accomplishing much of anything. And therefore you do not deserve applause, gratitude, or the right to gloat, “I helped.” Stick with me, and I’ll suggest a few ways to rectify this. But first you need to understand what is going on here.

no-award

Since I do not have children, I don’t really have an opinion about the ongoing issue of so-called participation trophies or entitlement awards—you know, little do-dads given to kids just for playing a sport, showing up, etc. I am not a sociologist/psychologist, so I only have a vague idea of the effect these awards had on those kids—now adults. Apparently they are unable able to handle disappointment and other life issues, because they no longer get recognition for every little thing they do, successful or not. 

Now I must pause to say I do reward myself for the little things, especially these days after cancer. Hey, if I get dressed with matching socks, remember to get something at the store without it being on a list—that is an excuse for a party in my book, thanks to chemo brain. I give myself a mental smiley face sticker for remembering enough of my phone numbers, password codes, and etc. to get through a day. So maybe I’m just as bad here. I don’t know.

That guilty admission out of the way, I am going to criticize the culture of participation awards as I see it in current awareness campaigns. This is an idea that was a mere seed for a long while in my brain, and exploded recently with all the articles written about Wilkinson. I’ve touched on the issue in past posts, so I’m bound to repeat myself here.

(And no, I’m NOT picking on Millennials, I don’t care about that. I’ve seen the “anything for awareness is good no matter how unsavory it is” attitude displayed by people of every generation. So settle down.)

It has been stated many times by my own self and thousands of other cancer social media participants that we have reached awareness of cancer, especially breast cancer. So any time I see “awareness” stunts online, I AM going to call bullshit. True there is still some lack of awareness in under-served communities but I’m not sure a meme is the best way to reach out. If they haven’t become aware with the repeated yearly gimmicks, which only plays to the same target market, they will not now. So shut that shit argument down now.  

Now on to the tougher aspect–all those people who react to angry breast cancer patients’ criticism with these standard replies I’ve seen only about a million times in the past few years:

“Maybe we aren’t making anyone aware, but we’re showing our support for you,”  (see my post Supporting the Show) which leads to–

“Why are you so ungrateful–we’re doing this for you!! If it weren’t for the pink ribbons and races and yes even the boobies games, we’d still be in the dark ages where no one dared to even say ‘breast cancer’,” (see my post Burden of Gratitude) and sometimes this leads to the nastiest reaction of all–

“If you ungrateful breast cancer negative nancies keep complaining and criticizing how we show support, maybe we’ll just stop supporting you.” Interesting. A threat couched in the message that all support–awareness raising or fund raising–is contingent on the recipients showing gratitude for the crumbs of attention. More proof, as if I needed it, that some people support for self-display, not because it is the right thing to do.

Yes, I said crumbs. Because that is how so much of this makes me feel. That I should be “grateful” for the attention–any attention–my disease gets, even if that attention has not reduced the rate of death, the likelihood that I’ll have a metastatic recurrence.  There is a whiff of “take what little you can get and be happy about it” that just unsettles me.

So I ask, how does that braless selfie picture help me–in real, hard, factual terms? Yes, assign it a dollar value. No, I do not want vague explanations of how the spectacle raises the profile of breast cancer, keeps it on people’s minds, so they donate, so politicians assign funding specifically to breast cancer research when federal money is to be granted.

I don’t want the fuzzy intangibles. I want something I can use. I want metsters to NOT die, I want so-called “survivors” (still hate that term), like myself, to have a guarantee that recurrence will NOT happen, and I want future women to NEVER get it. No I don’t think I am asking for too much. 

Or in lieu of funding research, how about this? I’ll assign a different value to a selfie, to a bald cap, to a braless day. Instead of one selfie, one trip to the grocery store for your friend in treatment so they don’t have to go out with their compromised immunity. Yes, you’re buying. I trade one bald cap/solidarity head shave for one ride to the treatment appointment at the cancer center. Keep your damn bra on, and go clean her house.

So I revisit the question I asked at the beginning. Am I being harsh? Yes. This is a topic that makes me as angry as I was in October of 2012, having just finished treatment and dealing with depression when the enormity of how awful Pinktober first REALLY hit me (I was never a fan before, and the first 2 Octobers I spent as a resident in CancerLand, I was just overwhelmed with diagnosis and treatment). My, OUR, needs are tangible, and games, gimmicks, and sexualization that isn’t even original is NOT working. So how can anyone expect me to applaud useless gestures, when those gestures won’t guarantee I make it to 50 or 60 years old?

When I see those comments that if we don’t stop complaining about gimmicks that maybe all support will be pulled from under us like a rug, I just…I’m still astonished. We are telling you what we need, what is better, and you will not listen.

Do the tasks I suggested. Or if you want to simply donate money, look up a reputable charity that actually puts money into science rather than marketing more awareness events. You can do it, if you’re reading this, you’re on the internet with information a click away. Start treating charitable giving like investments, like car-buying. Think!

Am I harsh? Yes. Look back on 4 years of this blog and look at what I call myself–what did you expect? Cancer is not a barrel of laughs, neither am I. Why did you think “fighting” it would be one?

The time for coddling the public is over. Awareness is more or less achieved. It is time to graduate school/college, to roll up the sleeves and get to work. To adult. Yes, I find adulting hard too, even now, after having to adult during cancer. But it must be done. We are grown up now. No more games and silly frat party crap.

Children who got participation awards apparently learned a harsh lesson when they entered the workforce, or were even unable to do so because of a bad economy. They learned there was no trophy for trying–but failing–to get that job, or to succeed. Likewise, there is no “you tried” award ribbon for a useless “awareness” gesture. I hate to be over-dramatic or use the hyperbole so often used in cancer slogans. But cancer can, and often does, lead to death. Or at least to a life with some shitty side effects that last FOREVER. It is a zero-sum game for too many. So I don’t have time for someone’s hurt feelings when I point out that taking off a bra doesn’t help us.

Am I harsh? What the hell do you think cancer is?

Do You Have the Time, To Listen To Me Whine?

A/N: Words in that post title sound vaguely familiar? Yes another music reference, details are at the end for the interested.

I have not been able to sit down and write for the past couple of weeks without being interrupted every few minutes. There are many reasons folks blog, and I’ve come to realize the therapeutic benefits are more important to me than I initially realized. So it’s been frustrating to not be able to think something out by writing. I keep losing my train of thought.

What has been on that train lately is the reactions to the reactions to the no make-up selfie/Facebook game fracas. For the record—and this should come as NO surprise since I call myself the Cancer Curmudgeon—I am unimpressed with the silly games. It reminds me of the head shaving for solidarity issue that gets attention every now and then. I wrote about this in Something I Can Use, and may write about it again. My views are harsh, so I need to take time to cool off before a rematch. But that post from last summer still rings true for me, for now.

I got very frustrated when I read how vicious (threats of harm were issued in some cases) people could be toward cancer patients—the supposed beneficiaries—who dared to criticize these silly games. What struck me the hardest was Kristina Egan’s HuffPo piece called “The Controversy Surrounding the ‘No Makeup Selfie’ Gave It Depth – Without It, It Was Empty”. In this essay, Egan describes a conversation with a stranger on someone’s Facebook page. This stranger asked Egan if she wanted others to get cancer in order to understand what it is like to have cancer. I found that to be a rather vile accusation.

This struck me hard for many reasons I am still trying to sort out, likely over many future posts. But the main issue getting under my skin is this: there are many talented writers, including Egan, who explain what it is like to have cancer, and how and why nonsense like silly games frustrate some of us. This stranger’s question, in my opinion, is stupid; all she had to do was not worry about writing a response, and read Egan’s (or a multitude of others’) words to understand how it feels to have cancer and suffer these silly games, without actually getting cancer. I actually touched on this issue a little in that earlier post, Something I Can Use.

So I wrote thousands of words over the past week, and discussed this with someone I trust, who does not have cancer, but knows other chronic illness all too well. What I realized with her insight was that my thousands of words could be boiled down to this:

“WAAAAHH, no one is listening to what us cancer patients have to say! WAAAAHH, why do people feel the need to open their mouths/type before letting the cancer patient finish her thought? WAAAAHH, no one ever listens to anyone anymore!”

I have a bad habit of bringing too many issues and thoughts to the page as I try to make sense of one single issue, and often wind up with overly long posts.

I began thinking about how, when I started writing this blog, I hoped to contribute to an effort to change the conversation around cancer, away from that single story of: get diagnosed, lose hair, fight hard, be positive to cure cancer, get better, all is well.

I began to think why I want to change that story, or at least see alternatives to that story.

I began to consider how hard it is to get the alternatives to the uber-positive story heard—and to consider that it may not happen in my lifetime.

I began to think that maybe all I’m doing is writing to commiserate, rather than communicate—that I’m not even trying to change any minds about that single story anymore.

I began to think about how I am a bad listener, especially when I disagree with what is being said, even more especially when the subject is Pro-Pink.

I began to think I am arrogant in thinking an alternative is needed, that minds should be changed.

I began to think maybe some minds are changed, a few and a little at a time, and I need to alter my expectations, and be thankful for those who’ve told me I’ve changed their minds.

I began to ponder the chip I have on my shoulder about cancer patients vs. non-cancer patients.

I began to think that ALL my posts could be called “Do You Have the Time, To Listen To Me Whine.” Or I could alternate that title with a line from another song: “Hey! Wait! I’ve Got a New Complaint” (from “Heart-Shaped Box”, by Nirvana, and the next line, “Forever in debt to your priceless advice”, sung with much sarcasm, could be a post title).

I cannot even remember all the things I thought about that I wanted to write about, but forgot them when I finally had a minute to sit down. I think all of this faster than I can type it.

The real issue I started with, about fully listening/reading, comprehending, and having empathy BEFORE responding, was getting lost. I thought, well, I’ll just trash this and leave it alone for a while. But then I stumbled on this quote/graphic:

listening

The only additions I have to this great quote—which almost sums everything up—is to add reading to the listening, and to point out that not even full or complete reading/listening is happening before the reply appears (see NPR’s April Fools’ Day prank).

While I was doing all my over-thinking it this week, I stumbled on yet another article on the classic dumbass things said to cancer patients, the one commendable soul who asks “well, what SHOULD I say?” and the valiant efforts by some to provide tips or advice on what to say. I’m glad progress in that area is being made, but I’m still frustrated by the emphasis on talking to, or at, the cancer patient. I rarely, if ever, see advice suggesting a person to at least offer to listen to the patient, giving them the opportunity to express emotions. I’ve taken a swipe at this issue before (Don’t Speak). One of the most damaging aspects of the Pink and positive cancer culture for me was not being heard when I was expressing fear or negative emotions during treatment. Sometimes it did not matter if others said dumbass or compassionate things to me; I was tired of my words being not heard or just dismissed. But this is just our culture—we all worry about what to say, not how to listen. Hell, this blog might be a direct result of not being able to get a word in edgewise, so this is how I think I can be heard. Sigh. All of this is fodder for other posts on other days, as mentioned above. File under: that post I need to write about all I find wrong with Pink, all colored ribbons, & positivity vs. reality. File under why I blog. File under how this cancer patient, a self-centered only child, became even more self-involved during treatment. Yep, somebody actually said to me “oh great, now that you have cancer, you’ll be even more self-centered.”

So this very long and rambling post doesn’t have much in the way of a point. I’m just whining, and whining doesn’t invite listening. All this post does, maybe, is provide a snapshot of my jumbled mind that likes to get distracted by squirrels and shiny objects, and talk about every topic under the sun at once. I could meditate to quiet or bring order to all of these thoughts. Or I could just obliterate the thoughts with some Metallica—now there’s a post: Metallica vs. Meditation! Yeah, that post is actually in the works.

Or maybe this post’s point is to write more posts, and to ponder the challenges of writing the posts. It is certainly crammed with introspection and reflection, when it started out to be one of my usual curmudgeonly rants. I’m sure I’ll get back to ranting—I like ranting! It gives me some happiness to get things off my chest (that is a proven idea, I’ll get to it when I tackle Metallica vs. Meditation, for real—there is study about it, I swear!). But that is the best thing about having a cancer blog for me. I can fully express and finish my thought (well, not this time, but whatever), and people can choose to read and comprehend or not.

I end with the fact I was up too late last night stalking “Rolling Stone” magazine’s Tumblr for news of the inductions to the Rock and Roll Hall of Fame. In honor of my favorite inductees last night: “Oh well, whatever, never mind.”

Oh damn, that lyric could be another post title. Shut up and settle down, brain.

Regarding the A/N: From Green Day’s “Basket Case”:

Do you have the time
To listen to me whine
About nothing and everything
All at once
I am one of those
Melodramatic fools
Neurotic to the bone
No doubt about it

Sometimes I give myself the creeps
Sometimes my mind plays tricks on me
It all keeps adding up
I think I’m cracking up

I liked this song, and Green Day, back in 1994. But I dismissed them as “little brother music”, not “real” like The Clash or Nirvana or whatever. Ah the arrogance of a newly adult 20something who thinks the music she grew up on superior to all that comes after.  Wasn’t really listening or comprehending Green Day very well. Ten years later Greed Day released the punk rock opera (a contradiction in terms if there ever was one!) “American Idiot” and I realized the genius there—and how wrong I was. I’ve seen a lot of bands live, and I finally saw Green Day in 2009, and they are one of the best live bands ever. They used to get accused of selling out—aren’t punk bands only supposed to play small, intimate clubs, not arenas to thousands of people? That old BS. But as I sat in the nosebleed section far from the stage—it was still somehow intimate. Nothing can beat the feeling of singing along to great songs with thousands of fellow fans.