X-Rays and Candy

Yesterday I was doing something uncharacteristically indulgent—getting my hair colored, trimmed, and styled, when I overheard another client and stylist discussing the dangers of trick or treating, you know, the old razors in apples thing. They spoke of that myth as the gospel truth, as the reason they were taking their kids to some trunk and treat thing (I did not know what that was—had to look it up!).

I am always surprised at how those myths persist—heck, they began in the pre-internet age—which really says something about how people latch onto things, and don’t let go. I remember the razors in apples thing growing up, I remember local hospitals offering to x-ray candy every year. Does that still happen?

I was chomping at the bit to intrude on their conversation, but, alas, I was in the hair drying/styling portion of my salon day—so I only caught bits of the ongoing conversation, and there was no way I was going to yell over the sound of hot hair aimed at my head loudly at high speed. It’s funny, earlier this year, I wrote about struggling with the notion of jumping onto every little lapse when I hear cancer myths—worried I will become that tiresome “cancer woman” among people I know (probably already am to some degree). But when Halloween BS gets tossed around, whew, I was VERY ready to rain knowledge and truth on uninformed heads!

Forced into zipping my lips, I got contemplative about how myths persist. I mean, I know the jokes about not believing everything you see on the internet—of course you cannot! But on the other hand, not believing everything you read and hear (rumors?) is a long, grand tradition, isn’t it? (Uh-oh, having a childhood flashback to the rumor about the Mikey kid eating pop rocks and soda—anyone remember that?) And combating rumors with truth happens on the internet too, in addition to the creation of BS. So, how is it that so many people still buy into the urban legends about razors and apples? That has been debunked, I thought!

I wish I knew how to end these illusions, because that talent would sure come in handy in CancerLand.

We hang onto falsehoods, slogans, any number of ideas out of….what? Tradition? Habit? Pick any breast cancer sound bite: 1 in 8 (when that stat is bit more nuanced when looking at age brackets), early detection saves lives, sugar feeds cancer, a positive outlook helps kick cancer ass, run for cures—oh, why go on. I’ve been struggling with a few myths I hang onto myself—but at least I am questioning everything.

Maybe that is the key—the willingness to question anything one hears or reads. An open mind.

October is wrapping up and I find myself in a foul mood tonight. Watching nonsense online, people hanging onto untruths, just being unwilling to hear any challenges to what is perceived as facts, I’m just bummed out. Between Halloween myths and breast cancer BS, I’m just drowning in mass delusions.

I’ve been blogging and reading blogs for nearly 3 years, and I’ve been in CancerLand for nearly five, and I keep thinking: Still?! Still, with this rah rah pink crap, no progression?! How can that be? We have to keep fighting nonsense every year?

But the answer to that question was right in front of me yesterday, listening to 2 people talk about a lie, a decades old myth, like it was real.

Supporting The Show?

Weariness and fatigue will make me do anything, I suppose. Last October I voiced frustrations I had with a few words and phrases, like “awareness”, “show support/support breast cancer”, and every single slang word in existence for breasts (Some Word Problems). In that post I mentioned that part of the reason I disliked “show support” was because it always seemed like some people were more about the “show” portion of that phrase, rather than the “support” part. The post was about being tired of hearing those words and phrases to the point that they had lost meaning for me, so I did not want to delve into what really bugs me about “showing support”. Plus, I was afraid my thoughts were too harsh to be shared.

If I’m harsh, so what?

This time of year, the ads and pleas to go bald (whether for real or wearing a shower cap thingie) or do some Pink thing to show support for “sisters” with breast cancer overload my senses via many forms of media. I understand that many people succumb to these ads and buy a silly trinket, wear a t-shirt, or put a sticker on a car, with good intentions, with good hearts. They think by being public with their caring about their friend/relative with breast cancer will please that person. And maybe it does please some patients. But not me.

I wrote about my frustration with all the head-shaving-in-solidarity a couple of years ago. I still think it is rather useless compared to acts like cooking for a patient, or simply listening to a patient’s many fears. I remember around the time I wrote that post there was a small kerfuffle about some young girl getting sent home from her school for shaving her head to show support for her bald friend with cancer (it violated some dress code). So much outrage in social media about it—so much praise for the bravery of the head-shaver; the girl with cancer wasn’t mentioned much. While I think it is great kids show empathy, I could not help but think that scenarios like that teach future adults at a young age that the “show” is the most important aspect. Yes, I am a cynic—read other posts on this blog!

Now, before anyone starts howling at me; YES I know there is no one way to do cancer and I have no right to criticize those embracing Pink while expecting respect for rejecting Pink (not going down THAT road today, but see Reciprocity and Respect). And YES, as stated above, I know that many people wish to show support with the best of intentions, thinking it is the right thing to do, as it is so socially acceptable and all.

But why is it socially acceptable—why is there this ongoing trend of advertising oh so publicly: “I CARE, I HELPED”? And no, this is not an issue limited to cancer.

I actually began noticing this well before I got cancer. Working in the non-profit sector and managing volunteers, I saw how frequently volunteers expected a little “prize” for their contributed time and efforts. I especially noticed the same volunteers wanting the same t-shirt emblazoned with the word “volunteer”, year after year. I knew they must have a couple from previous years; wearing those would’ve helped my budget—because while the shirts were cheap, they were not free. (Contrary to popular belief, businesses are not tripping over themselves to donate to the many, many non-profits in existence, all with outstretched hands: “please give”.) But I thought back then, cruelly perhaps, that some people really liked showing off: “look I helped!”

And yes I point the finger at myself too. Many years ago I would participate in a walk for a local animal shelter, and there were the usual t-shirts and other “prizes” for money collected. I wore my t-shirt proudly—“look, I raised money, I’m a good person!” But as years wore on and I had less disposable income, I began to resent when national animal organizations would send t-shirts and notepads to entice me back into giving donations. It was money wasted; I don’t have the money, and the dollars buying “prizes” should’ve been used for sheltered animal care. But perhaps the t-shirts were donated and I should not complain (and they may have gotten a discount for mailing that stuff out, but it was not free, in my limited experience, the USPS does not do freebies).

You can kind of get the picture as to how I got cynical about showing “I helped”, right?

This cynical view has been confirmed many times over now that I reside in CancerLand. I especially noticed it a couple of summers ago when some centerfold models jumped out of airplanes topless—you know, setting boobies really free—for awareness. When criticized, one of the models/participants protested back and the usual “you should be grateful we’re doing this for you” finger-wagging, and the “my (insert relative here) had breast cancer and she has/had no problem with this type of thing”, comments left everywhere ensued. I noticed it again more recently this past summer, with the soda bottle incident. The reactions by the porn organization that instigated the stunt to the outcry directed at them were almost laughable. It’s so clear at times like these that applause for all this “support” being showcased is expected. How is that NOT about self-display?

I was relieved last year to learn I was not the only person who looks at all the instances of setting ta-tas free (with a selfie to document the act), or just plain old wearing of slogan-saturated apparel, with some cynicism. I ran across an interview (transcript) about all the “Boston Strong” t-shirts that were the item to wear on the anniversary of the deadly marathon incident. Here was the part that caught my ear:

SMITH: Dobens says getting the shirt is as important to people as giving the donation.

DOBENS: It has this idea of, like, I have proof now that I helped. I can show people that I really, really care about the people that I’m helping.

JOSEPH BURGO: It’s hard not to get cynical about this stuff.

SMITH: Psychologist and author Joseph Burgo says he understands the underlying feelings of solidarity and defiance. But he can’t help but cringe at people feeling that their every sentiment has to be tweeted or posted or literally, worn on their sleeve.

BURGO: I mean, why wear anything? You know, I think that there’s a kind of a feeling that unless you share your experience with other people – like, it isn’t entirely real to you unless you announce it to other people. It’s just part of this narcissistic culture of ours, where everything is about self-display.

SMITH: It’s almost as if people are using the Boston Strong brand to brand themselves, which raises a whole other concern; that Boston Strong is not actually a brand, and isn’t trademarked. So anyone can sell it whether or not any money goes to charity
That last bit about where does the money go—that wouldn’t sound familiar now, would it? Yes, being sarcastic.

Of course, I must consider the power of The Show. Seeing a sea of people wearing pink t-shirts is a strong visual statement: “wow, lots of people have to deal with breast cancer, we better do something about it, because it must be a huge problem”. And then public perception and pressure follow and that is how charities start raising money, and politicians start granting funds for research. I’m sure politicians want to “show” they are doing something (don’t get me started there). Seeing a sea of pink reminds women of how common the cancer is—better get that mammogram! (Otherwise known as “awareness”). I see the big picture, and understand the power of the movement.

But I still cannot help but wonder if something got lost along the way.

Many other bloggers and journalists have written extensively about how buying that feel-good pink-drenched item really doesn’t result in much money going where it can be useful. It’s pointless for me to repeat information that is easy to find, especially since most readers of this blog already know what I’m talking about.

And truly, I’m not trying to hit out at everyone—cancer patients or not—who wears Pink slogans or slaps them on cars. In fact, I’ve been wondering if now “self-display” will be lobbed at those of us who’ve posted pictures of our scars in a retaliation of sorts to crap like no bra day. I see more and more mainstream articles featuring women baring scars with or without non-cosmetic tattoos. While personally I hope to provide solace for those facing the same surgery, and to combat the “sexy” campaigns, I’m sure some would say it is “showing off”. I’m still on the fence about this, and beginning to contemplate removing my pictures for the “show off” aspect, as well as a few other reasons (see Random Thoughts On Baring the Scars).

Do I have the solution for this? Of course not—I never do. I am merely pointing out that for me it was easy to become cynical about “The Showing of Support”. I seriously doubt I will ever think head-shaving in solidarity is useful, especially compared to activities like cooking or cleaning for a patient—you know, regular, grunt work that doesn’t make for a good photo-op. Personally I did not have to endure any incidents of having someone do something personally more of a “show” when I would’ve required more of that someone, but I’m sure others do have such stories (feel free to share those incidents in comments). And while I cringe when I see the sea of pink and all it represents to me (see Take the Mythical Image of the Strong Warrior Breast Cancer Survivor And Bury HER Once & For All), I understand the power of that image.

I wonder if society will ever get to a point when we can stop supporting the show.

Rare Curmudgeonly Cheer

I am prone to shouting “this is why I love the Internet” when I see dumb stuff that makes me laugh. The meme with Joaquin Phoenix’s head progressing toward the east coast to represent the hurricane threat. A video of a bird throwing cups all over the place. Cat videos. Cat videos. Cat videos.

Oh I know, ire in comments and on Twitter, idiots sharing misinformation (“I’ll be right with you, someone on the Internet is wrong”—I love that cartoon), outrage at the slightest infraction, yeah the internet can be an ugly place.

But on the other hand, the Internet kind of saved me when I was in my white-hot-anger-at-Pink phase that October after treatment. Via blogging, and eventually other forms of social media, I learned I was not alone in my loathing of Pink—the rah, rah, the sexualization. Granted, I’m not as active as most, don’t have a huge follower base or whatever, but what little interacting I’ve done has been a comfort.

True, I’m a Curmudgeon, not particularly social, not as involved in the “community”—just my natural shyness and solitary tendencies (it’s an only child thing) at work. But, I know the community is there, and I am in it a bit. And I know there are thousands of patients who share my views and feelings. Knowing about those thousands became very important today.

I was in a conversation with a woman I run into often in my line of work—not a client, but another who provides services for my client. She is a very forward person—if she thinks it, she says it, regardless of tact. I am generally polite with most everyone, and try to keep my conversations about innocuous topics (“how about this weather?”). I tend to steer away deep discussions with people I do not know very well.

Today she brought up some NPR broadcast about how some cancer patients don’t like certain words—survivor and war were the ones she seemed to have latched onto—and how new words have been invented by patients. I think I’ve heard the broadcast she was talking about, but maybe not. Didn’t matter; I know this topic well!

She point blank asked me what I thought of these words. I calmly said I agree; I dislike most of the language in cancer. Of course, it is hard for me to not get very “deep” when discussing this topic and I found myself saying how much I hate things like “save the ta-tas”.

She said something like, “well, I think that is just how YOU perceive that phrase, that is not how—“

And I cut her off right there. I did so with great conviction.

I pointed out that yes, the intent behind that phrase is a clever, attention-getting ploy to “raise awareness”, but I am FAR from the ONLY person who dislikes the phrase. Not, by a long shot, the ONLY one who realizes that getting breast cancer often results in the amputation or mutilation of breasts—and how a slogan like “save the ta-tas” seems like it yanks support from the ta-ta-less, that it should be save the lives. No, there are thousands of us I told her. Maybe millions, tired and fed up with all the pink, with the baggage of October, of all cancer issues. I stated it as fact. It is not hard to find this anywhere on the Internet, voices raised in criticism of all the pink nonsense.

She quickly changed her tune, and pointed out that it should be about “saving the lives”. From there we progressed to a quick, but lively discussion about cancer, AIDS, patient blame.

Our conversation ended well—and perhaps I opened her eyes. Maybe not.

But for me the point was having that conviction. I KNOW there are soooooo many of us out there, loathing that old cancer-is-pretty-and-sexy thing.

No, it is NOT just how I perceive it.

Standing there holding my smart phone, I could’ve pulled up MANY articles that would prove that nope, it ain’t just me and how I perceive it.

As I tend to be less motivated to write blog posts for a number of reasons, I try to remember that every single criticizing post about all this pink crap—even if mine are on page 100 of a Google search for this stuff—are out there. The sheer number proves that NO, it isn’t just how I, or you, or anyone new to this breast cancer mess who just hates it, perceives it. When the newly diagnosed and disgusted are told, “that’s just how you perceive it, that silly slogan is harmless”—she can whip out her device and point out to all the ones who perceive it exactly the same way, and the ones who can explain why the slogan is far from harmless.

This is why I love the Internet.

(OK, OK, this post wasn’t exactly cheer, sunshine, and rainbows, but it is about as syrupy and cheery as I get. Next up, back to my regularly scheduled curmudgeon-ing.)

Why I Am Not a Politician Or In Charge Of Anything

Let me share an anecdote about my problem solving skills, or lack thereof.

As I’ve stated often, I live in a beach resort area. That means in the summer the population swells, and the rural roads get congested with tourists, making traffic similar to the big cities they’re trying to escape. An errand that would normally take 20 minutes can take hours. In the winter, the roads are mostly unoccupied. Those of us who are “locals”, whether born and raised like myself—“from heres”, and those who’ve relocated/retired—“come heres”, bitch about traffic A LOT. We are a spoiled folk. We like and appreciate tourist dollars, but we so highly value the “quiet, country life” too.

One weekend mid-August I was driving down that beach highway (locals know to stay in their homes on weekends, but I was in an unavoidable situation), and got stuck at an intersection. Of course, a major case of gridlock was in progress. People constantly choose to go forward without giving any thought to the idea that they might not get beyond the intersection when the light turns red.

I had a grim thought that perhaps the best way to stop people from making this choice was to have spikes pop out of the road and puncture their tires as soon as the light turns red. Then maybe people would be less inclined to cross an intersection when their car would clearly still be in the way if the light should go red! Of course I dismissed the idea realizing that if these tires got damaged the cars would be even more stuck, and I’d never get where I wanted to go. A week later I was reading a letter to the editor of a local “newspaper” (scare quotes intentional), suggesting a solution of signage threatening heavy fines at this intersection. Puh-leez! If drivers are ignoring the red light, they’ll just ignore the signs! I sneered as I read the letter aloud to my mom, and then told her my idea of the spikes popping up, in spite of the logistical problems of deflating tires, which I was already mentally trying to resolve.

My mother gasped, rightfully so. I mean, why on earth would I think it OK to punish drivers’ choices with destruction of their personal property? THAT should’ve been the first hurdle to my proposed solution—not those silly logistics.

In my weak defense, I was bitching about all of this to some other locals weary of summer traffic not long after that, and they laughed. The even chimed in with their own fantasy solutions—like wishing for a paint gun or other contraption stuck on their car front to fire away at drivers, or bulldoze them over. I swear, we are not malicious, just tired!

The point in revealing my absurd driver fantasies is to illustrate how my mind goes to the extreme. And you guessed it, when it comes to the relentless display of pink ribbons and such, especially in October, my mind goes to destruction—and that is NOT good!

Those first few Octobers after diagnosis, as I’ve said here before, were just white hot anger about Pink–this was before I found other like-minded bloggers. I wanted to either rip off or spray paint over every single Pink ribbon or save the tat-tas sticker I saw on cars in parking lots. NOT a great idea. I rolled my eyes every time I saw someone wearing some Pink-y clothing item, especially the ones with rah-rah, I-kicked-cancer’s-ass-style slogans. One October, I cut a bunch of BCA’s Think Before You Pink business card-sized fact sheets and surreptitiously taped them to pink ribbon stickered items in the grocery store, in hopes it would make buyers stop and think. Passive-aggressive much, Cancer Curmudgeon?

These days I still grit my teeth when seeing this one jeep parked at a store I frequent (I assume its owner works there), all decked out with pink windshield wipers, a couple of ribbon stickers, and some slogan on the spare tire cover. I grip my steering wheel tight when I see stickers on cars while I zip around town (see 365). And luckily I don’t go out to too many places (too tired after work), but on a rare occasion, I end up out in public with people. As I noted on Facebook the other day I ran into so many Pink-attired women (see Uniform), I had to exert some self-control to keep from confronting and yelling and generally causing a scene.

These are the times I remind myself that there is no one right way to do cancer, and just because the way I’ve chosen is not often respected (again, see Uniform, and a good deal of other posts on this blog) does not mean I get to disrespect those who embrace Pink.

I was never a patient person and after cancer my patience all but disappeared. I think patience is overrated anyway, I mean hey, isn’t “life is short” one of those silly “lessons” cancer is supposed to teach? If so, why should I patiently wait for anything? Why should I be patient with the continued narrative of early detection, be positive, and all that crap that I found damaging–especially if that crap continues to harm current and future breast cancer patients?

But I’m a rash person, prone to flipping out and wanting to rip up stickers, deface property. There are better ways; I’m just not the person to think of them I guess.

I’ll behave, I swear.