Recently I read an insightful post about what being an ally means by my friend and advocate extraordinaire, Beth Caldwell, who blogs at The Cult of Perfect Motherhood. Beth manages to do incredible advocacy work while also dealing with metastatic breast cancer. She’s also a wife and mom. Her voice is one of reason, inclusiveness and calm, but also one that says, come on people, let’s get things done.
Update: Sadly, Beth died from metastatic breast cancer on November 2, 2017.
One point in Beth’s article that really struck me was this one:
The division between early stage and metastatic breast cancer patients is a serious one.
And also this one:
An ally is someone who not just cares about a community in need, but does something to support them. And what that something is, is what the community says it needs, not what allies think that community needs.
I must admit, the first point, made me sad and if I’m going to be really honest, it made me bristle a bit too. (walls we build in Cancer Land). Hang on, I will try to explain.
Why was point one upsetting?
Well, the sad part is obvious. I hope. And as for the bristle part…
Well, I have never been one to drink the “pink Kool-aid”. In fact I hate the “taste” of it and always have. I have always been very uncomfortable with the way breast cancer is too often portrayed – as some sort of pink parade you take part in by doing what you’re told, plastering on the fake smile and lo and behold emerging as a new and improved version of your former self, and so on and so on.
What complete and utter bullshit, right?
Partly because of my disdain for this idea of “smiling your way through cancer”, I have often felt like a misfit in Cancer Land.
I don’t accept (and never have) the early stage, “dominant narrative about just staying positive,” that Beth refers to. I didn’t/don’t fit in with this group. And I don’t want to. It’s one reason I wrote my memoir.
I do not have metastatic breast cancer, though I have witnessed its ugliness up close. And obviously, I do not want to fit into this group either.
Again, there’s that misfit thing…
But I also know there are many others out there like me who have never jumped onto the just stay positive, ignore the metsters, pink bandwagon either. Or if they once did, they have since hopped off.
Perhaps it’s naive of me, but I have always believed we are all in this breast cancer boat together. I still do. I still believe it’s one for all and all for one. At least I want to believe this is true.
But maybe I’ve been kidding myself. Maybe we all have been. Maybe this is the real reason I bristled. Maybe Beth is right about that division after all.
Because metsters have not been feeling like they are in the big boat with the rest of us, aka, the early stagers.
Just because we think they’re in the boat, or want them in the boat with us, this doesn’t mean they are.
(Please excuse the bad boat analogy).
Metsters have far too often been left out thrashing around in rough seas with maybe a tiny, totally inadequate life preserver occasionally tossed their way. (The life preserver is supposed to represent the 7% of research dollars earmarked for metastatic research – again, excuse inadequate analogy).
Too often they feel left out, not listened to, not cared about and of course, regarding funding for metastatic research, profoundly misrepresented and underfunded.
I want them out of those rough waters. I want them in the big boat with the rest of us.
I want it to really be one for all and all for one.
So yes, I agree with Beth.
Being an ally for any community in need, means more than caring about them – but that’s a good start. It also means doing something for them that they say they need done, not what we think they need done.
So no, Joan Lunden, it is not appropriate or helpful for you to suggest that metsters should just stay positive. (What does that even mean anyway? I think it might have more to do with “quieting down”). In fact, the exact opposite might be way more beneficial advice as far as trying to stay alive.
Metsters have to get feisty. They have to get demanding. They have to get loud. Yes, they have to get angry! (And btw, being any of these does NOT mean anyone is being negative).
Their very lives depend upon it.
And those of us who genuinely care about them have to get that way too. We have to do more than care. We have to act.
Beth is right. Regardless of stage (or no diagnosis at all), we all need to work together. We need to listen to each other in order to build trust and understanding. And this goes both ways. The experiences of early stagers should not be downplayed either. Both “sides” need to open their hearts. All stories need telling. All experiences deserve validation ‘cuz all breast cancer totally sucks. All cancer sucks.
Voices of metastatic breast cancer patients should not be silenced. No, they should be amplified!
And none of us should turn a blind eye when a major player such as the National Breast Cancer Coalition appears to ignore the needs of those presently living with metastatic disease. (Click on above link if you didn’t yet).
Prevention is important. But so is helping those dealing with metastatic disease now.
It should never be an either/or thing. It’s a “both” thing. It’s an all inclusive thing, or should be.
So what can the early stagers do?
What can anyone do?
We can all do something because we can all listen to those in need of our support. We can listen to what they say their needs are.
We have to listen. Really listen.
Then, if we’re able and based on what we learn, we can further act.
Because again, as Beth said, an ally does something to support the community she/he cares about.
I will be an ally for my friends navigating the rough waters of metastatic breast cancer. Always.
What about you?
If you have metastatic disease, what’s one thing you want the rest of us to know about it? What specifically do you want others to do to show support?
Do you feel there is a serious problem with division between early stagers and those who are metastatic and if so, what can we do about it?
What’s one thing you will try to do to support those dealing with mbc?
Be a #fearlessfriend.