“She Was A Human Being”

This post started in my head as a rant about the expectation that cancer patients be good role models to other cancer patients, or people with “lesser struggles”. You know, that inspiration-porn thing in which a disabled or ill person does something inspiring like run a race or whatever, so a slogan of the what’s-your-excuse type can be attached to it. As the rant churned around in my head it morphed into my usual kicking against all the little boxes cancer patients are put into: if not a role model, how about rebel? Except I don’t wanna be a rebel–rebels need rules as much as the role-model good cancer citizens do! I just wanna be! Why can’t I just be?! Why there gotta be so many rules to follow and boxes to occupy in this effen CancerLand?

OK, let me back up.

It all started a couple of weeks ago when I saw this paid ad in one of the local, silly, freebie, news rags in my resort town. A couple who own a local business had a daughter who died of colon cancer, and March being colon cancer awareness month, they were selling items for the fund they established in her name for the awareness cause. Now, before anyone howls about my pink*, early stage breast cancer privilege–yes I get it, colon cancer needs awareness and funds. Who am I to flinch at the cause marketing on display? I’m sure the owners don’t see it as capitalizing on tragedy, as getting people into their store for a cause, and then maybe customers will utilize their services while they’re at it, just to be nice. What really bothered me was the text about their daughter. It followed the cancer script we all know so well–she fought bravely, has husband, kids now without Mom, and she was a role model to others while battling her disease.

I’m sure this woman was all of those things, a brave woman who embraced the warrior imagery, was positive, did all the right things to be a role model cancer citizen and inspired others. But then I think about my own parents and how much my Mom in particular, goes on and on about positivity playing a part–despite overwhelming evidence she experienced as caregiver for a Cancer Curmudgeon, grumping my way through cancer, and here I am still NED. If I were to metastasize and die in the next couple of years, what would my obituary say? Parents can know children well on some things, not so much on others. Since they don’t read my blog–thank goodness–they don’t thoroughly understand my stance on so much in cancer culture. Readers of this blog, friends I’ve made via social media know me much better in this area. And I think everyone here would agree I ain’t the role model sort.

So this morning, rather than writing this post, I began thinking, OK, I need to work on figuring out how to go ahead and write what I want, make sure my funeral is not some veneration of a pink warrior. To make sure the term “role model” is not used about me. Then I thought, good grief, is this one of my control issues–I want to control this aspect from the grave? I want to control how my parents remember me?

Well, that task is still on my to do list, but maybe I should file my taxes first (I procrastinate with certain things in life, and this is the worst). But, I am backing down, talking myself out of a very angry, nutty rant. But I’m still left with a deep unease with the notion of role models, heroes, inspirational types.

I’ve mentioned before that I don’t really believe in having heroes. Because I’m a cynic, my first reason is that having heroes means a letdown is always around the corner. For example, right after David Bowie died, there was all this sadness, this mythologizing of an icon. Didn’t take long and of course, a few articles began popping up calling him rapist and pedophile (and naturally the responses to those articles). I’m not interested in the debate about Bowie. It isn’t for me to condemn or forgive him. But, the other reason heroes and role models bother me is the dehumanization aspect. Bowie was a human being. Calling him a hero and ignoring his faults dehumanizes him, as does concentrating only on his faults.

One of my favorite things about the Clooney film “The Descendants” was that his character yelled at his dying wife while she was in her coma. I know, I know, we aren’t supposed to speak ill of the dead or dying. But I don’t like it when the gauzy remembrances erase the humanity of the dead either. Think like those rom-com type of films where a saintly female character dies and she’s presented like some kind of angel, too good and pure for this world. GAG! If you haven’t seen the film I won’t spoil, but yeah, the wife had done something that deserved Clooney’s character’s anger. Therefore the yelling was appropriate to my view, and not that shocking. Neither character was particularly lovable, but they were human–and I liked that.

I always hate it in pop culture when the role model issue comes up. This especially happens in the pop starlet section, when some Disney actress grows up and starts showing off her sexuality, and all this pearl clutching ensues. I’m not saying I like any of these pop starlet types, but I do hate the fact that once they take on that role model mantel, they are no longer allowed to fuck up, on purpose or otherwise, to be human.

Of course cancer patients that are role models patients in their treatment centers are not at some Miley Cryus level of fame and scrutiny, but it still bothers me. Well, I guess there are some “cancer stars”, like the ubiquitous celebs with cancer, and they sure as hell deserve some scrutiny when they proclaim to be some sort of expert and then go around spreading misinformation. Hello Melissa and Joan!

Look, I’m sure there are some who will read this who do take on that role model mantle, who are OK with it, and disagree with all that I’ve said here. Whatever. As we say so often here, there’s no one right way to do cancer (even tho’ I’m starting to view that as a lofty ideal, not reality). But for me, no. I’ve just fucked up too much in my life, and certainly took some wrong turns in my cancer career–I’d never be a role model for future cancer patients.

So if I die of cancer, I sure as hell do not want anything said about me being a role model. I just want everyone to remember this: the Cancer Curmudgeon was a mere human, no she-ro cancer patient. I think I’m OK just being that.

*If you are new to reading this blog, poke around and see that not only do I dislike all the Pink crap, I kinda loathe the whole ribbon system. I’m just tired of yelling “breast cancer is not some pink party!” I’ve done that a million times and I’m beyond that shit now.

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Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

10 thoughts on ““She Was A Human Being””

  1. You are so right. The whole cancer hero/role model notion is an intriguing topic. I certainly never, ever think of myself as any kind of role model regarding cancer. There’s so much I didn’t/don’t do “right” for one thing. Celebrities with cancer being turned into heroes/role models is what drives me a little nuts. It might be a good thing if they didn’t so often fall into the cancer is a gift trap, would tell the complete story, give out accurate info and so on. I just loathe the idea of glossing over the horribleness of cancer and coming out new and improved as a person. Sometimes I wonder why this bugs me so much. Maybe because I know I’m not, right?Bottom line is, we are all human, even when we are perceived to be a hero or role model. We are all hopelessly flawed. Another good read. Thank you.

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    1. Yes, I’ve been trying to figure out why it bugs me too. I just saw some fawning article about a woman who dressed up as some superhero or other character for each time she had chemo. And that’s great for her I guess, but I hate the way people who do that sort thing get elevated as an example of rightness. And not just by the media–by society too. Because the next step is for some random person to turn to you or me or some hapless cancer patient and say, “why can’t you be like that?” I mean, you just KNOW that is what is going thru some minds. An the inspiration porn angle too, it just creeps me out. Like, “look at this woman handling cancer so well, you have no excuse for not doing xyz with a smile”. I hate the way people with illness or disability get used like that.

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  2. I recently followed the cancer journey of 13 year old cancer patient, Delaney Clements. She was the #DelaneyMeetTaylor phenom who Taylor Swift visited in December. In one of her amazing interviews for TheTruth365 she talks about being a cancer role model. She was a beautiful, fabulous, dancing queen and wanted to be remembered that way. But she said in one video, I feel like I have to stay in treatment because I would let my supporters down, they want me to be a fighter. But I’m tired and don’t want to go through those awful days again. (She had been fighting cancer for 5 solid years). I just want it to stop. Another danger of being a role model, other people’s expectations. Last month Delaney died peacefully at home in community that she knew loved her.

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    1. That is extremely unfair for her. I had not really followed that story, thanks for letting me know. I knew OF her, but did not know she’d died or had wanted to stop treatment. Very sad that stopping treatment is considered giving up, when maybe stopping is the “braver” choice. Hmm. Thanks for commenting!

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  3. Another excellent piece on a topic that resonates with me a lot. Since my cancer diagnosis, sometimes I’ve felt disallowed to be human. Some have put labels on me since I went through cancer. I dislike labels. I never thought of myself of being a role model. It sounds overwhelming when I think about it — a big responsibility to carry. My plan is not to be a role model for anyone. My hope is that, through my experience, people will realize that it’s OK for them to be themselves when going through cancer or any other challenging situation. It’s OK to be just human. What else can we be? And about the famous people who are labeled as heroes and role models, well, society likes to dramatize some situations. The issue with this ‘labeling’ is that it creates expectations for all of us. Like you, I just want to be me. I don’t want to be expected to be anything else.

    Thanks for another great post!

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    1. Thank YOU! I was worried that I was just sour grapes again. No disrespect to the woman and her parents, whose story spurred me on to write this post, but I just get tired of that kind of narrative. I get impatient that while here in CancerLand, some people “get” why I don’t like it, but the world at large just refuses to evolve on this (and other) issue(s). Thanks! xo

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  4. Totally agree. I don’t think I’ve had any consistent role models for life in general, and the notion didn’t even come up when I was diagnosed. The problem with them is that no one lives your own life but you, or knows what you need or who you are like you do. Have to figure out all that for ourselves ultimately, don’t we? Role models don’t work in day to day reality. We need friends and validation, not role models for that. Love the phrase ‘inspiration porn.’ Heck, yeah! The one thing I hope people will remember me for when I die is that I managed to be kind. And maybe had some integrity. That’s about it. xoxo, Kathi

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    1. Ha ha, inspiration porn is Stella Young’s phrase, I think. Check out her TED talk–it really resonated with me. I think cancer patients, breast cancer patients especially are fetishized (I don’t mean in a sexual way), used, to guilt people into doing stuff–like, look at this cancer patient in treatment and running a marathon–what’s your excuse? I hate that crap!! xoxoxo

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