Gratitude and Outrage

Susan Rahn blogs at stickit2stage4.com and she was kind enough to let me share this powerful message. I am grateful for her advocacy.

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.

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
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15 Responses to Gratitude and Outrage

  1. Kathi Kolb says:

    Good for you, R, for responding. I think it can be easy sometimes to mistake activism and advocacy for intolerance. There are other places to go for gentler support and encouragement, which it sounds like is what the person you refer to needs right now. But to move the needle, to improve the odds for survival, ya need to get loud and kick butt. That’s just the way it is. Love you, sweet friend. Kathi

    • thesmallc says:

      Kathi, absolutely there are other places to go for all kinds of support. And I agree, a more aggressive approach can be more effective.There is such vulnerability in the cancer community and it is challenging to be able to respond to every person’s need while dealing with such lack of progress. I wouldn’t silence their voices though, as we don’t have enough of them. Thank you for your love and support, my dear friend. xo

  2. nancyspoint says:

    Hi Rebeca,
    Advocacy comes in many forms, as it should. I agree, there will always be divisions, but what unites us (or what should) is so much bigger than any one person or any one method. I am grateful for those who advocate loudly, and I am grateful for those who choose to do so quietly. It all matters. As you said, there is living with gratitude and grace, and there is trying to bring societal change, something that does sometimes require getting loud and rebellious. The two can and do co-exist. Excellent, thought-provoking post. Thank you.

    • thesmallc says:

      Hi Nancy! I agree all forms of advocacy matter. At the end of the day, we’re all in this big mess. I try to respectfully accept other patients’ forms of coping and generally don’t take things personally. I do have an issue with information that misleads. Thank you for being a strong voice in our community. We need more. xo

  3. Darlene says:

    I am an MBC lifer who sees both sides. I am not loud or angry but I appreciate those who are because you are right, those who make the most noise are heard long before us quiet ones, who too make a difference in our own way. I am grateful for all parts of the MBC community. We all have the same goal, to live as long as possible v

    • thesmallc says:

      Darlene, I am sorry you are dealing with MBC. All types of advocacy matter. We shouldn’t silence the few voices we have in the cancer community. Like you said, we all have the same goal and many patients desperately want to be heard. I hope you get the best outcome possible. And thank you for taking the time to comment. xo

  4. Iridacea says:

    I would like to see more of the original post that inspired your post. I have thought a lot about the dichotomy of either pissed off or focused on bunnies and rainbows. I do not agree that anger is the only route, or the most effective route to activism. I believe that choosing to cultivate inner peacefulness and joy is the foundation of activism for me personally. Anger is a motivator to many, and it may work for them. It doesn’t work that way for everyone. The difference in approaches creates tension to be sure.
    I lost a friend I had had for 18 years after we were both diagnosed with breast cancer within a year of each other. She could not tolerate how I was approaching my situation so differently and she severed our friendship. The intention behind our actions do not equal the impact. Clearly my way of dealing with my own cancer was inadvertently hurtful to her, she felt judged and her rejection of me was devastating. Ultimately everyone is doing the best that they can, everyone has come to the cancer table with their own skills and life experiences. Feeling really really mad is not the only right response, any more than focusing on gratitude should be forced on someone. Anger is not the only catalyst. Sometimes anger creates a lot of collateral damage in its effort to promote change. Sometimes it is hard to be around those who have a different way. It can bring out the inner demons of both victimhood and wrathfulness.

    • thesmallc says:

      I am sorry about the loss of your friend and about all the unwelcome changes both of your diagnoses created. Unfortunately, cancer separates people, including families, and like your experience with your friend it has a lot to do with the different coping mechanisms people develop. Like Nancy mentioned above, all forms of advocacy matter. Going back to the original article though, which is hyperlinked in my post above, the writer did not give specific examples of bullying but she did focus on advocacy. My response was based on that part of her article. I think there’s so much vulnerability in the cancer community in general, and every group focuses on different things, plus everyone’s approach to survivorship is so different, it’s hard to respond to every patient’s needs. Advocacy should be viewed as something separate from survivorship. And support is something totally different as well. There’s a place for different kinds of support. This patient, the writer of the article, has a more gentle approach to her cancer situation and I hope she finds the support she needs. I just don’t think silencing the few voices we have in the MBC community would be helpful to any of us, regardless of the tone they use. Ultimately, everyone wants more research and to live longer lives. xo

  5. Debbie Kerr says:

    Perhaps your title says it best. There has to be two sides to the coin. Just because you appreciate what’s going on around you and choosing not to be angry doesn’t mean you aren’t affecting change. I have been trying to affect change by speaking at conferences, writing letters of concern and meeting with people to try to improve things (for example, methods of communication, struggles to get tests completed) for cancer patients. I am a Patient and Family Advisor for Cancer Care Ontario in Canada.
    I am concerned when people are so angry that they communicate their views in such a way that the odds of someone listening are reduced because the people who make the actual changes to the system are not “hearing” the full message. When I speak at conferences, there is always at least one person who believes that I’m feeling sorry for myself or acting like some kind of support group. I have no idea where that comes from. Part of me believes it is a pre-conceived idea of how someone with cancer should behave. I do not have MBC and I’m not Stage IV so maybe some of my reactions would be different; however, I would like to believe that I can make a difference because sometimes words are mightier than the sword.

    • thesmallc says:

      Thank you for being a voice in the cancer community and for the support you give to others. I understand where you come from. But like you said, we are not in their position. Perhaps we would react differently if we were in the same situation. A situation where little research gets done to save their lives (referring to stage 4), where people keep dying everyday, and where we don’t feel heard. Also, there are different personalities everywhere. Maybe these patients were gentler at first and now they are left with constant fear and disappointments. Maybe this is just the way they feel they can make a difference. We shouldn’t silence their voices. There will always be groups of people who won’t agree with a certain approach (like the example you gave of people having differing perceptions of you). The reality of these patients should not be censored. There aren’t too many voices for stage 4 so we should welcome what we have as long as their information represents reality. And to think of it, being angry and outraged is another reality of MBC. We need more reality. Please stay well. xo

      • Debbie Kerr says:

        I absolutely agree with you. No one should be silenced. Different techniques work to get messages across to other people. I did not in any way mean to judge that someone else’s technique is wrong. I just wanted to point out that a kinder gentler approach does not mean passivity. I’m glad that you decided to write your post. I think you’ve generated a lot of good conversation, which is so critical for helping ourselves, each other, and the cancer community in general.

  6. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  7. bethgainer says:

    Definitely well-said.

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