I’ve been dealing with all kinds of issues and emotions the last few months, which is one of the reasons I haven’t been very active on my blog. There has been too much occupying my attention — thinking about the many losses we’ve had due to metastatic breast cancer, examining my personal situations, and realizing that I still feel stuck in many ways. I’ll elaborate more on that in a separate post. This time I want to share something I can’t seem to let rest.
During my recent frustrations and anxiety, I came across an article, “My Message to the Mets Community.” It is written by a metastatic breast cancer (MBC) patient who feels marginalized by what she calls the “dark side” of the METS community. She feels rejected because her survival strategy is to ground herself in a place of positivity and gratitude, as oppose to what she calls “the hate filled language and attention seeking stunts” that she sees coming from the most aggressive METS activists. Her message underscores the divisions in cancerland. Here’s the part I haven’t been able to stop thinking about:
“There are ways to advocate that don’t involve hate filled language and attention seeking stunts. If I am banished from the mets community for my beliefs – perhaps the mets community isn’t comprised of ‘my people’ after all. The reality is I refuse to use my cancer as a platform to propel my own agenda or anoint myself as an inspiration while surrounding myself with an entourage of “yes” people. I guess there are bullies everywhere, and let’s face it, cancer doesn’t discriminate.”
After reading the message many times I thought maybe I should leave this one alone. After all, it represents a different perspective and the author is struggling with MBC. (I’m not in that position.) Do I dare involve myself in a metastatic community discussion? Perhaps the way the writer chooses to express herself is just none of my business.
But, you know what? It is my business, because metastatic breast cancer is what has me and my loved ones feeling anxious since I stopped treatments. It’s what killed my friend last year and some of my family members … plus over 40,000 people yearly (in the U.S. alone).
So, I find myself writing a critical response to an article written by a stage 4 patient. I think she is missing some important points.
The writer of the article feels marginalized personally by the fighting mentality of the aggressive advocates, and feels that she has no place in the mets community because she chooses not to express rage.
I agree that many patients do feel alone in a community where many of the responses among patients are not compatible. And to be realistic, there will always be differences in our approaches and attitudes to survivorship and being forced to live in this world. I’ve come to accept that to some extent there will always be divisions, even when we all have a common goal. But, one approach may take us longer to reach that ultimate goal — that is, no more suffering for any one — than the other. And that is what I want to emphasize here.
To the writer of this article: I am sorry you are dealing with MBC and that you have lost so many loved ones due to cancer. I am sorry you feel alone and in fear of being yourself in a community where you thought you would meet others with the same attitude as yours. On the other hand, I don’t believe the intentions of these patients you call bullies are to exclude patients like you from the metastatic community. I don’t believe their anger and frustrations are directed at you, but instead at our current system and culture. These advocates feel a deep need to aggressively confront the threat of cancer and the lack of real progress. They are outraged and rightly so. They are also passionate people who are seeking solutions and answers. They feel helpless and the only thing left to do is get loud, because they feel unheard. The types of changes we’re looking for don’t come from just being quiet or thinking/acting positive. I’m not saying the quiet and reserved approach is wrong as a way to make survivorship and quality-of-life better. Each patient handles their situation their own way. And these patients — the ones perceived as angry people — also try very hard to live their lives, and they are surely grateful in their own way for what they do still have. Behind those “angry” faces and loud voices there are patients who are petrified and eager to live. I believe they’ve run out of patience. Their personalities are not the type that allows them to sit and watch, like most of us probably do. And for that, we should all feel grateful. These people are passionate about saving not only their lives, but ours too — and this is the part that frequently goes un-noticed. These people who want to have a fistfight with the status quo are fighting for every one of us. And thank goodness these passionate people exist! We are dealing with an URGENT matter. Please let’s allow them to help us. They might not sound polite enough for your taste, but at the end of the day, all they want is for us all not to live in fear anymore and for us to live longer lives. And I don’t think their intention is to marginalize or cast aside the people in the mets community who want to take a kinder, gentler approach to survivorship. Instead, they want to cast aside an approach or point of view that doesn’t help empower their own sense of what it will take to solve the problems.
So, I guess one way to look at it is that the approach to survivorship that the writer wants to live by — with gratitude and grace — can be viewed as a complete different situation than the one the loud people are engaged in — trying to effect society. There’s a place for both gratitude and outrage in all of us. What these patients are fighting so loudly for is much bigger than the survivorship part of the situation.