Take Away This Ball and Chain

This is a sequel of sorts to a post I wrote this summer, Burden of Gratitude. I’d struggled for over a year to write that post. I still wrestle with my feelings of tainted gratitude. I still get a knot in my middle when I see/hear critics of the sexualization, commercialization, and etc. of breast cancer told they should just be thankful for the achievements of the ribbon, especially the just being alive part.

In that previous post I noted that gratitude is used almost like a paddle to smack the hands and mouths of these “naughty and ungrateful” critics. I still think this is the case, only more so. I’m not sure I stressed that point enough in that previous post. While I view gratitude as an internal burden for myself, I also think it is becoming a huge obstacle in moving forward in breast cancer culture, and yes, even funding/research/cure/prevention.

I’ve complained VERY often on this blog about how cancer culture seems to be stuck in a rut, stuck in TV re-runs. Watching this latest episode of Pinktober this year, the business-as-usual races, beer-and-boobs parties, and pink shopping bonanzas, I’m more convinced than ever of the existence of this rut cancer is in. Each issue acts like a ball and chain, shackling breast cancer culture to the same old song and dance, preventing forward motion.

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Side note: I get really sick of metaphors in cancer language, but it seems we cannot talk about cancer without them, so I am giving in. So, yep, I’m gonna call anything preventing progress in cancer a ball and chain.

There are many ball and chain combos I could criticize—the never-ending debate about mammograms, the argument that fussing about sexualization is a waste of time—but I think gratitude is the biggest ball and chain.

Why do I say this? Simple. Because when ANYONE—whether they be the head of a major cancer organization, or a mere Facebook commenter—uses the “be grateful for all that pink has done for you” argument to anyone asking for more and better, they are looking back, not forward.

Hey, I said it was simple.

I realize how oddly timed this is. With the holidays and end of year around the corner, most people will be writing about all they are thankful for, and here comes the cranky ol’ Cancer Curmudgeon, saying stuff like “gratitude is bad”.

Of course, I do not mean all gratitude is bad—I’ve made it very clear (seriously, read that previous post) that I am grateful that I am still alive, that angry women decades ago became vocal about breast cancer and the disease got attention, then funding, then treatments. In fact, let’s think more about those women of the past. I am sure that women who “complained” about going under for surgery and waking up with a disfiguring, extreme mastectomy were told “you should just be grateful you’re still alive”, too. Just like those of us “complaining” now.

I’m glad they didn’t just sit quietly with deferential gratitude. Because of their actions, I was able to have chemo first to avoid a disfiguring surgery, to only get a lumpectomy.

You see, I am looking back, considering all that has been done in the history of breast cancer. Why do so many people think only the pink ribbon parades ever did anything for cancer? And why do people assume it was easy to put a pink ribbon parade (or whatever event) on in the first place? Do they really think it was always easy? It ALWAYS takes agitators—yes, complainers—to move things forward.

If I see one more comment on any article or on Facebook tsk-tsking those of us asking questions, raising objections, asking for more, I will scream. It baffles me that whenever anyone criticizes something they are automatically labeled ungrateful and negative. It is possible to be grateful AND critical/analytical AND angry all at once. I am again reminded of a scene in the Harry Potter series, in which Ron thinks a girl with conflicting emotions will explode from it all. Hermione points out that he must have the emotional range of a teaspoon. I cannot help but think anyone resorting to the “haters gonna hate (oh that phrase MUST stop)/you should be grateful/you’re negative” hand-smacking comments, also has a limited emotional range. Being human is complex and involves having conflicting feelings at times. Grow up.

As the saying goes, some people prefer bathing in compliments and being ruined by that practice, rather than listening to criticisms and ascertaining if there is a legitimate need for improvement. Of course there is always room for improvement. Why does anyone ever think things are perfect just the way they are?

It is fine to look back on accomplishments, to acknowledge achievement. But at the same time, one must ask, what else is to be done, what improvements can be made, how much more is there to go? Otherwise, one is just resting on laurels, and I think that is happening in many areas of cancer culture. Yes, lessons can be learned from past examples, but don’t ever think the job is done.

I implore everyone to remove the shackles of gratitude. Gratitude is good in small doses, but don’t let it lull us into a sense of thinking all problems are solved. If the old methods (races, ribbons, and the like) have taken us as far as they can, time for something new. No, I don’t know what “new” is. But I do know when something is at an end.

“While I’m singin’ to myself
There’s got to be another way

Take away, take away
Take away this ball and chain
Well I’m lonely and I’m tired
And I can’t take any more pain
Take away, take away
Never to return again
Take away, take away
Take away
Take away this ball and chain”

“Ball and Chain” by Social Distortion

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Thanks And Feel Free!

Big THANK YOU to everyone who likes my last post–a response to Nancy Brinker’s “Seeing Red” letter to the New York Times. And special thanks to those who are sharing my post–even directly to Brinker.

I did consider sending it as a letter to NYT, but their hoops were ridiculous. The suggested word limit is far too constricting for this topic–at least for me. And I want it to be an open letter–I’m not going to wait to see if they deign to give a redneck small time blogger space in their paper. Puh-leeze.

I’ve been tweeting my post to her, Komen, and NYT, but I do not have many followers–or social standing to make much of an impact (remember, Curmudgeon, I’m not very cuddly!). So if you think my post says the things you’d like to say to Brinker/Komen, please feel free to use it–tweet it at them, post it wherever!

And thanks again!!

Symbols Are Stagnant Institutions, Not Solutions, Nancy G. Brinker

Nancy Brinker is “seeing red” over the recent New York Times article detailing how some breast cancer patients are tired of the “pinkification” of disease (see her letter here, see what she is angry about here). Her letter was strange to me, and would be laughable except 1) as the head of Komen her voice will be heard (although she claims she is NOT responding as a Komen representative) and 2) so many people will agree with her, will not look at her defensive whining with a critical and analytical eye.

I find soooooo many problems with her letter—and I’m not even as staunchly anti-Komen as so many other bloggers!! But here are my gripes.

Well, Nancy, you say the Pink Ribbon now symbolizes breast cancer. You’re not wrong there.

You go on to say breast cancer is very personal for you. It is personal for me too, since, you know, I actually was diagnosed with it myself at age 38. It continues to be personal for me as I know I could have a recurrence at any time. It is personal for thousands of other patients currently living with metastatic breast cancer. What makes you think you have a monopoly on personal feelings about breast cancer? Your claim of it being personal just illustrates your tone deafness, your inability to realize the cancer demographic is made up of lots of individuals with VERY different perspectives. We are not homogenous, and no one’s personal relationship with breast cancer is more important than another’s, not even yours.

You say you made a promise to your sister to work to find a cure, to raise awareness for the need for testing, treatment, research, cures, and to raise money for research. Let’s unpack these promises, shall we?

Your first promise, to find a cure, has not been fulfilled. The second promise, to raise awareness, you’ve been successful—congratulations. But that awareness has not translated to meaningful results—see broken promise #1. Instead, you continue to work on “awareness” as if no one is aware, as if you only wish to do what you know, rather than face new challenges. This has made you, your organization, and other pink organizations, stagnant institutions. The stagnation is killing people. Rather than evolving, than checking off the “raised awareness” task from your list, you continue to only do what has been done for 20+ years. That’s why my avatar is the anarchy symbol over “A” (not YOUR, copyrighted) pink ribbon. We need a little anarchy—or at least an overhaul.

random find

And oh my goodness, the third promise you state in your letter. You’ve raised billions, but has it gone to research? No. More money goes to education, screening (and screening is ALWAYS controversial), and of course to fundraising (it takes money to raise money) than to research (see here, page 7).

You list the (non)-achievements of the Pink Ribbon as allowing Komen to stage races with over a million racers, establishing partnerships in numerous countries, and engaging thousands of volunteers. I am NOT impressed by any of that. Big deal, people ran in races—there are plenty of marathons out there. The partnerships—good grief, look no further than the recent fracking/drill bit fiasco for the worth of those partnerships (but if anyone wants to look further, well, there’s the KFC chicken, the Dietz & Watson—because cured meats are so good for you, and all the shopping, shopping, shopping). And you provided opportunities for volunteers to do what they do: volunteer. Hey volunteers are gold. But their work needs to be meaningful. It seems all the work has achieved is perpetuating your stagnant institution.

You close with “Pink Ribbons matter”. I hope that was NOT a reference to the “#(whatever)livesmatter” campaigns. Komen has already proven time and again their inability to come up with original ideas. See your own admission about “borrowing” the red ribbon idea from the AIDS movement. How about the elephant stolen from METAvivor last year in that stupid Kohl’s campaign?

Originality is part of evolution.

Yes, lives matter, mine too. Most of the non-achievements did not benefit me. Early detection and screening? Nope—I tried that, but the mammogram (or rather the radiologist) did not find my cancer. Sure, the awareness raised by pink ribbons funded research that created drugs like Herceptin, which allows me to still be here writing this critique. However, unless I’m mistaken, the money raised for Herceptin research came from Avon—but never mind, let the ribbon’s ubiquity claim that prize. But all the races, pink ribbons, and volunteers did not prevent me from getting cancer in the first place. Ribbons won’t prevent my likelihood of recurrence and metastasis.

Right now, Pink Ribbons don’t matter. Even non-breast cancer patients are tired of them, have become immune, sometimes blind to them. (That was one of the points of the piece to which you object–how did you miss that?) Pink Ribbons are stagnant and Pinktober has become an institution, celebrated right along with Halloween. They symbolize breast cancer, but the threats to me and others remain. The death rate has not really changed. (Sure, there are more survivors, but the controversy surrounding the screening debates can tell anyone that it’s easy to create more survivors, if you create more patients that maybe never should’ve been called patients. But I digress). That symbol is no solution for my breast cancer, for my friends’ cancers.

Here is my challenge to you Brinker—realize how ridiculous Komen has become and do something about it. I think Komen is incapable of evolution. Prove me wrong.

Cells Don’t Have Brains

Or: Why I’ll never write one of those “dear cancer” letters

Cancer is not a person, or even a sentient being, or even a separate life form. It is not an invader. Cells divide, that is what they do, except with cancer, it’s an anomaly of cell division. My cancer is just of my own cells running amok.

I see lots of “dear cancer” letters, especially in October, and they always make me uncomfortable. I know, I know, it’s just a way of coping with cancer. For me, it is sort of in the same category as going into “warrior mode” then “kicking cancer’s ass”.

Except I’m that jerk who points out that cancer has no ass to kick, not being a person or animal or whatever. This is one of the reasons I hate the “kick cancer’s ass” slogan—I won’t go into the bigger reason for that right now (see this old post Why This Smart Ass Does Not Kick Ass for early thoughts on the subject).

I’ve been writing this post, off and on, for a long while now—maybe years. I got started one day reading a post I heartily agreed with; a discussion on why cancer is not a gift (roll my eyes over that old cliché, gag!). I read through the comments and one patient vehemently declared, no, cancer is not a gift—it’s evil!

While yes, I certainly am on board with the whole “not a gift” thing—nooooo, it isn’t evil either. Without a brain, cancer cells cannot have purpose or intent. Without purpose or intent, cancer cannot be evil. Don’t get me wrong, it feels that way to me much of the time. My first reaction, like so many other patients, was cut this thing out of me now! I envisioned the classic “invader”, the idea it was some sci-fi “Alien” thing.

It took a long time, and I still must curb my thoughts and reactions, to ground myself and my view of cancer as some fantastical creature, some demonic possession to overcome. It is easier to think cancer is some evil invader, not one’s own body gone wrong, failing, betraying. Cancer is not sci-fi, it isn’t even alien. It’s just me, my cells—but gone wrong.

I have nothing to say to cancer, because cancer doesn’t have ears, so cancer ain’t listening. And yes, again, I realize letters are a coping strategy—like journaling or, cough cough, blogging! I realize many of us must frame cancer experiences as a story. And as someone who has shared her story via blogging, it is a bit unfair of me to criticize the storytelling of cancer—this beast or invader who must be met on a battlefield, and vanquished like a dragon or something from King Arthur times.

I guess some of my discomfort stems from a growing unease with the storification of cancer, and yes I do it too. But sometimes it strikes me silly. Like, did I battle the traffic to get to the grocery story, fight my way through obstacles (other customers in the check-out line), to emerge victorious and return home with my booty (groceries)?

I know, I know, having cancer is not as mundane as a trip to the store. But on the other hand, I fear making it too epic. I mean, maybe I have made it epic too much my own stupid self—I’m still blogging about it all these years later after all.

I guess what I’m saying is—my coping strategy is quite different. I NEED to know that cancer was not deserved, that it was in fact, maybe quite random. Something happened that triggered the cells to divide improperly—and it is just that simple. It is tempting still, to view my body as a traitor, but it isn’t. My body just isn’t smart enough to make a plan of betrayal—my body contains a brain, but each cell doesn’t have one. I NEED to know that my current status of not having any evidence of cancer is just a result of methodical medical interventions, not any of my lackluster abilities (because if it depended on me, well, I’d probably still have a tumor). I take perverse comfort in the randomness. At some point, maybe someone will discover cell division run amok is not random, that there are triggers, and I NEED to think about that, to know that science, not epic tales, will be the end of this.

*Special thanks to one of my clients, The Engineer, for playing midwife to this post.