A Brief Manifesto Change

Most will have noticed I changed the header on this blog page and this blog’s Facebook page to a Carrie Fisher quote. I’m not tired of my Johnny “Rotten” Lydon quote—I likely never waver from his “People like their safe world. They don’t like realizing the way things actually are,” theory. That really applies to my view of the cancer-you-must-be-positive experience. And really, isn’t it just a punk version of Nietzsche’s “sometimes people don’t want to hear the truth because they don’t want their illusions destroyed”?

Fisher’s observation, “I think I do overshare. It’s my way of trying to understand myself. … It creates community when you talk about private things,” is really what my blog is about anyway. I’ve often worried that I lack conviction in my blog posts—it seems I’m usually raising questions without answers, rather than ranting or making pronouncements anymore. Most of my entries seem to be me trying to figure things out. Sure, when I began, I was all about loudly criticizing the Pink rah-rah attitudes—and I still hate that crap. But nowadays I want to look deeper, really dive into how this stupid cancer culture exists and possibly how it can be changed—maybe by trying to understand it. For example, it is no longer enough for me to loudly proclaim how unfair or ridiculous the competition between diseases and cancers is—I wish to understand it, and point a finger at myself for sometimes participating is such a useless and petty practice.  Or rather than just shouting “down with Pink rah-rah”, I wish to acknowledge—and to figure out how to live with the loathsome sexualization of my disease—all the nonsense which contributed to the creation of medicine that has prolonged my life.

These are my private thoughts—am I building community by my overshare?

On the interwebz, many bemoan 2016—calling it the worst. It isn’t, of course. It just so happens the people in my social circle tend to be like-minded and in my age range, so these celebrities that have died meant much to us. And of course many share my horror at our current political situation on the US. So yeah, 2016 is kind of the worst for some people.

I know it is silly to mourn a celebrity I didn’t know. My next blog post, the one I meant to put out here this week, will touch on that in a deeper way. But I saw a great tweet somewhere along the way pointing out how it is NOT silly to mourn celebs/artists, because they often helped us figure ourselves out.

That sure is true, or at least, some of these people were like a timeline for me. My mom was a big Bowie fan; he was part of the soundtrack of my life before real memories were formed. Carrie Fisher was my childhood. I’ve often written of my stupid “Star Wars” admiration. Seeing that movie in the theater when I was 5 or 6, it was and remains the single biggest life-changing experience—yes, bigger than cancer! Of course now as an adult I understand all the hero’s journey/Joseph Campbell stuff. But back then, I just understood it the way it was meant—all the good vs evil and mythical themes. And of course consumerism, ha ha! I still have my action figures!

When I was kid I ran into The Kmart's toy section to part with my hard earned allowance and cash on a new Star Wars toy. I still go straight to the Star Wars toy section 40 years later--nothing changes, ever! I just don't buy anything. But it's like I can't help myself, I have to go to see the Star Wars toys!
When I was kid I ran into The Kmart’s toy section to part with my hard earned allowance and cash on a new Star Wars toy. I still go straight to the Star Wars toy section 40 years later–nothing changes, ever! I just don’t buy anything. But it’s like I can’t help myself, I have to go to see the Star Wars toys!

Just last week I managed to see “Rogue One”, and then re-watched “The Force Awakens” (only my second time seeing it, and I’m sure I’ve seen the original trilogy hundreds of times, even when they’re on TV, just in the background). I thought to myself how great it was to see a female in the lead or hero role. And especially the diverse cast in “Rogue” (love, love, love Diego Luna for a long time now). Of course I never questioned Leia’s military position in the original films. Sure, she was “rescued” in the first one, but she never seemed like other Disney princess types. Still, Rey and Jyn are much better now. It feels like those people making the films now know that little girls like myself were buying those action figures too. So while the films are not perfect (man have I read some bad reviews of “Rogue”), for me they are simply gratifying. I, as a female, am also part of the “Star Wars” geekdom, and am relevant.

Prince and George Michael of course were my pre-teen years. I didn’t love Michael as much as the Duran Duran guys. And it was because of Wham and Duran that I bought Teen Beat (or whatever) and found The Cure, The Smiths, Depeche Mode. Which, in turn, sent me down the path of punk and what was then called “college rock”—and made me the weirdo I am today. (Well, Prince was always on the weirdo side, even when he was the top selling artist.) In my alterna-girl phase I rejected Duran and Wham, and even Michael Jackson and Prince to a degree. When I became an adult I re-embraced all those things, recognized the artistry, the brilliance.

TL;DR version—yes it is fine to mourn celeb artists because they help us discover ourselves. Writing this made me realize just how much and how deeply shaped I was by these folks. Prince in particular, has cast a pall over the year for me. I wasn’t a huge fan, but I did consider him a bit genius—and I don’t use that term lightly. I truly thought him special and it just seems unbelievable he could die, like ever.

Of course, reality sets in. I don’t call these people heroes or idols—I don’t like that. Idolizing someone dehumanizes the person—and they are only human. And I realize how odd it is to cry over celebs when there are so many metastatic cancer patients that deserve to stay alive—and that is where our energies must go—finding ways via advocacy to make that reality.

Still, Fisher’s quote resonated with me deeply. I heard the “Fresh Air” interview when she said it. Likely I was busy working and didn’t take time to jot it down. Just because she died does not make it more true—I just happened to see the quote pulled out, NPR posted it after her death. And it just seemed right to make it my header, to acknowledge that what she said a few weeks ago sums up quite nicely what I’ve been trying to do since I started this blog 4 years ago.

I’ll go back to my snarling, punk rock Rotten quote soon. But now seems like a good time to recognize I’ve been following General Leia Organa’s example all along.

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The Curmudgeon Formerly Known as Cancer Patient

Yes, that is a reference to the musical genius, who fought a battle with a corporation for artistic control and eventually was able to resume being Prince. And yes, I am revisiting the issue of what to call myself, and the struggle with accepted cancer norms, like the battle language.

The other day a blogger on Tumblr wondered, if not fighters or warriors, what exactly are we? And another wondered how to get a loved one to stop using warrior talk in conversation with her, and I have a similar problem, in that my own mother keeps telling me a positive attitude helps one beat cancer (because she refuses to see the scientific proof otherwise). If that were true, I have a friend who should still be alive, instead of me, the realist who should not have made it, apparently.

Well, shit, I wish I knew the answer to these things. There are so many unknowns in Cancerland, that I wish I could embrace the warrior, ass-kicker talk. But I cannot, leaving me with one more unknown, another hassle to navigate. I do not actively choose to not embrace it. I am simply who I am.

It was easier when I was in treatment; I could dodge the warrior and survivor labels by referring to myself as a cancer patient. But now I am out of treatment. I mean, I still need to identify as a patient when I call the cancer center/oncologist’s office. I say my name and that I am a patient of Dr._________, and what I mean by that is, hey, you have a very thick file with my name on it, filled with my info, so let’s cut to the chase so I can get my appointment changed or my question answered.

So WTF do I do and say now? What do I call myself, and how can I interact with the rest of a world that engages in cancer warrior talk?

I know some of how this language came into use is revealed in Gayle Sulik’s “Pink Ribbon Blues”; she covers various contributions to how this language became acceptable—and for once pink ribbon culture is not the only culprit, yellow bracelets have a hand in it, too, if I remember correctly. I’ll have to re-read it, I know. But knowing the how and the why probably won’t help anyone figure out how to change, or at least challenge, this acceptable language of cancer.

I tend to define myself, not just regarding cancer, in negatives; I don’t want this, I don’t want to do that. Hey, I’m a fan of The Ramones and lots of their songs have titles like “I Don’t Wanna Grow Up”, “I Don’t Want to Fight Tonight”. I seem to approach this conversation in cancer the same way: I DON’T WANNA be called fighter or survivor! I DON’T WANNA run a race while wearing pink! I DON’T WANNA participate in pink ribbon culture.

But then I remember, the band was sometimes positive—“Now I Wanna Sniff Some Glue”, “We Want the Airwaves” and “I Wanna Be Sedated”. Well, OK, maybe not positive, but they didn’t just always list stuff they did NOT want—they listed what they wanted as well. There is an online game, and I once found a funny picture, devoted to what The Ramones did or did not want, just because that is what most of their song titles addressed!

edited funny ramones

So if I’ve got the “don’t wanna” portion covered, what do I want?

Once upon a post, I wrote that I wanted a guide book of sorts for how to do cancer:

I longed for guidance on how to “do cancer”, because I suspected I was doing it wrong…What is offered is “The Idiot’s Guide to Breast Cancer”, when what I needed was “The Asshole’s Guide to Cancer”, with chapters like “You Don’t Have to Wear Heels and a Pink Feather Boa to Infusion to Show Strength” or “(You Gotta) Fight For Your Right (Treatment Plan)”.

And yes, that final imaginary chapter title is another song reference. I’m going somewhere with the music references.

I’ve said many times, littered in various posts on this blog o’ mine, that not everyone does cancer the same way, nor should that be required. Maybe this blog, with every post I write, I’ve written my own personal not-so-silver-lined playbook on how to do cancer, the one I wanted while in treatment. Clearly, I deal with my cancer and all the surrounding bullshit by looking under rocks, pointing at the ugly worms and bugs underneath, trying to understand the whole truth behind whatever health “news/ads/feel-good-news-filler” is being broadcast in a sanitized manner (“…the hidden side of everything” is part of a tagline of a favorite podcast program of mine). I do not find inspiration and coping mechanisms in the packaged pink message, so I draw it from anywhere and everywhere else.

Granted, because of who I am and my tastes, I tend to draw inspiration from some strange and disparate sources. I think one can tell from most of my blog that I won’t be found listening to Kool and the Gang’s “Celebration”, that sickening staple of pink marathons (because having cancer is such a party, NOT).

A few posts ago I mentioned a NPR interview with Elmore Leonard, and his story about filmmaking with Quentin Tarantino that gave me a much needed reminder of my ability to know my own cancer better than random people who deem it fit to tell me (or anyone) how to treat cancer. I think I once repeated the infamous Conan O’Brien quote from a commencement address he gave in the wake of his fracas with Jay Leno: “What Nietzsche should have said is, ‘Whatever doesn’t kill you, makes you watch a lot of Cartoon Network and drink mid-price Chardonnay at 11 in the morning.’” I have much affinity for O’ Brien; his new TBS show began just as I was about to start treatment. Sleepless, I watched his new show and reveled in his new success, and as I look back, I think I may have irrationally and illogically regarded him as a lucky charm: he prevailed, and then, so did I.

But it isn’t just Prince, The Ramones, Beastie Boys, O’Brien, and Tarantino I’m building my playbook from. I absorb and apply any tidbit that works. There are likely hundreds of bits of inspiration I’ve found that simply would not be considered inspirational, or even recognizable, to most folks, but they work for me, so I use the bits. The biggest, of course, is Dave Grohl, ironically, a “survivor” it there ever was one, given his former band mate’s affinity for heroin and guns. In many interviews with him I’ve heard recently he has talked about the power of not knowing the “right way” of doing something, he has touted the DIY ethic that brought alternative musicians, himself included, to great fame in the early 90s.

source:bandlogos.wordpress.com
source:bandlogos.wordpress.com

It is this DIY ethic I’ve applied to my cancer playbook. It isn’t pretty, this book, it is filled with the heavy and sometimes not-so-cheery-fluffy-pink things that I like. The only smiley face in it is the old Nirvana band logo. The book is not yet finished and maybe never will be. I still don’t know what those of us who object to a label of survivor or warrior should call ourselves, although I’m sticking with Cancer Curmudgeon for myself for now, given the accuracy of the name. I still don’t know how to have conversations with others who rattle on about positive attitudes, or who use battle talk. But I am always searching for those answers.

But I do know this: you can borrow a page from my un-pretty book if you need it. And I know you can make your own playbook. No one has to accept the cancer mainstream language and attitudes if they do not fit. It is difficult, but it can be done. The more of us that reject the sanitized and non-inclusive versions of cancer presented in the mainstream (need I remind everyone that pink ribbon culture ignores those with Stage IV, and any other kind of cancer, hence, non-inclusive), the more our voices of dissent will be heard.

Here’s to a new playbook that replaces that damn pink one.