“What’s the harm?” “First, do no harm.” “Do what you will, so long as it harms none”. I realize the surrounding connotations of these phrases–that these phrases, well, the last 2, are discussed in long essays (like about how oncologists have to cause some harm to treat cancer, for example). I don’t take it lightly, but I don’t want to get into it either. All I want to discuss here is the surface idea of the phrases–the notion that we are “free” to do whatever we please, so long as we don’t harm others. My thought lately is, some things do more harm than is recognized. So much for our “freedom” to do whatever we want, the notion that we are all entitled to our opinions and the murky area of sharing (foisting them on?) others.
During and right after treatment, when I was in my white-hot-angry-at-perky-cancer-culture era, I kicked against the expectations of cancer patient behavior/views. When I started blogging, I found others who said we are all free to “do” cancer as we want. Well, I could get on board with that! But these days I see that idea as, well…an ideal that is not often realized.
A couple of weeks ago I had a conversation on a Facebook post about that woman who made a Holley Kitchen-inspired video, touting woo woo, alleged preventatives for the Stage 4 cancer. (Before even getting into the whole woo alkalizing stuff, the video has some misinformation, like not using the word metastasize, the assumption that recurrence is automatically stage 4….but, moving on.) Two words used in the conversation started making my brain itch: entitled and beliefs.
Now, this is the not the first time I’ve pondered notions like “I believe xyz about cancer”. I’m pretty sure I’ve heard some celebs with cancer, and definitely people on FB, talk about what they “believe” regarding cancer. I’ve ALWAYS found that odd. I’ve associated cancer and illness with science, medicine, proven facts, and belief with that which cannot yet be proven. A client of mine, a science-type, once said to me that theories are beliefs based on observation, and scientists work to prove their beliefs correct. OK, that’s fine–so are these celebs, bloggers, and the woman in the video scientists? You see, to me, when some layperson–myself included–says “I believe this or that” about cancer–it holds no weight. Unless they or I have some method to prove a belief–and I mean real proof, not anecdotal evidence–well, I don’t think the beliefs should be shared in a “I did this and maybe you should too” kind of way. I try to avoid giving advice here on this blog o’ mine, medical or otherwise (well, there was that one time I gave advice, which was: don’t listen to advice). Don’t listen to me–I’m an idiot!
Proselytizing is the concept that occurs to me every time I see woo woo videos and such. I was once watching a documentary that was supposed to be about nutrition (or lack of) in the modern world, that wound up being one long infomercial about juicing. All those woo woo bits, to me, have that strident, “you must do this just like me, it saved my life” urgency to them, and I just back away, slowly at first, then I run. I don’t wanna be recruited! And proselytizing is how this video struck me. Or at least like those olden times traveling medicine shows with those magical elixirs.
Now, here in America, we like to yell, “it’s a free country”, and we have the right–heck, we are entitled–to do and say what we want. Sure. And we are free to choose to listen to and follow others, or not. As misanthropic as I am, I try to assume people are intelligent, they can make choices. If others watch this video and decide to engage in the woo practices–what’s it to me? Their lives, their money–not mine. It is not my responsibility to dissuade anyone. Or is it? As I asked (rhetorically) the person with whom I commented on FB, is it an obligation? I think, no, not really.
So what’s the harm? OK, now here is where it gets a bit tricky.
In the specific case of the video in question, to be sure, there was a hint of blaming the patient. Apparently a woman diagnosed and finished with treatment for Stage 3, the video-maker is now bent on being proactive to prevent metastatic recurrence–thereby implying those who HAVE had such recurrence were slacking off and deserve what they got. A cruel impulse I quashed when encountering a tearful fellow “survivor” in a focus group was to ask–well, why did you NOT do all these “good” behaviors in the first place? I’m experiencing that cruel impulse again toward this woman. Most of us in the disgruntled section of CancerLand (probably only the disgruntled read my blog, so I don’t care), know this woo and blame stuff is folly. But the general public does not think deeply about these issues and swallow any tidbits Dr. Oz/daytime TV/fake-ass morning new shows spoon feed.
There is plenty of stigma and blame in all cancer culture (some cancers more than others to be sure)–it all has to do with fear and the illusion of control, I know. But this blame game is one of the few issues that still makes me go from an eye roll and a shrug to screaming rant mode in a second. (See Did You?) And you can just bet casual FB scrollers will see this video and not understand all the surrounding crap and say casually to their nearest friend with cancer: “have you tried drinking boiled bark water during the full moon?” (Yes I made that up, because that it is what it sounds like to me.) These days I have my response ready to fire away at such foolishness, but I remember where I was about 5 years ago. And I know others are likely in the same spot–and how damaging and tiring it is to hear this kind of crap. I know I blamed myself, and occasionally self-blame still haunts me. It was very painful to know others kind of blamed me too.
Now, some will likely not agree with the connection I’m going to draw here–but here goes. To me, saying people are allowed to “do” cancer any way they like when talking about woo woo medicine is very much like the allowance to “do” cancer by dancing before your mastectomy, or lauding a celebrity for having a well-publicized goodbye boobies party. No it is not for me or anyone to criticize how these women “do” cancer–they are “free” and “entitled” after all. But I am free to not like it, and to say so. Yes, the worst part is the reactions by media and FB commentators, praising the positivity on display and blowing off critics with a breezy “haters gonna hate” (oh for the love of syrup can that phrase be banned this year–I hate it that much). But what happens when these viral sensations occur is they become a measuring stick to which we are all held, and believe me, according to these standards I came up quite short. What I mean is, happy dance parties perpetuate the single story, and we all know how dangerous that single story can be (thank you Chimamanda Adichie).
Am I proposing that all cancer patients all stand together and hold the same views–my views? Of course not! The opposite in fact–because the truth is, the general public already thinks of us in that single story way, that once we get cancer, we put on a Uniform, we all march to the same beat. Am I suggesting no one ever dance in a surgery room again, hold a goodbye boobies party again, claim to be a warrior who kicked cancer’s ass again? No, I merely do no want these individuals’ behaviors to be held up as templates for the rest of us. My fantasy, sadly doomed to be unfulfilled, is for cancer patients to be seen as vastly different individuals with wildly diverse attitudes and approaches to our disease.
What is the responsibility of these social media viral sensations to the rest of us cancer patients? What harm are they doing to those of us who reject their woo, their dancing, their “tee-hee boobies” parties? An interesting question to ponder–my first thought is there is none. But on the other hand, if anyone, particularly celebs, puts themselves out there as an example to be followed, well, criticism and challenges must be expected, it ain’t all gonna be applause and thank yous. Let me put it this way: sure, the dancing mastectomy woman can boogie all over and perhaps it is silly for me to think it harmful to me personally–but, hey I am VERY glad that video went viral well after my own surgery, my own post-treatment dark period. Because I sure as hell would not want to deal with anyone suggesting I look at that video during what was my lowest time.
I wish I had a more definitive answer or solution–I’m aware most of my posts merely pose questions for thought, not for action or, gasp(!) examples to follow–remember I said above–I’m an idiot–don’t do anything I did! Ah, the idea I lack convictions or solutions is a post for another day.
While I’m not sure a solution exists, I still think this is an issue for discussion. Like I said above–the idea we can all do cancer however we want is an ideal not a reality–because of that single story, that single standard to which society holds us. I worry to not acknowledge it is to be dangerously naive.