Saturday, January 23, 2016

An Open Letter To CJ Cornelliusen James, Co-Founder Of Metavivor

Dear CJ,

I'm not one to jump into the fray and argue for argument's sake, but this one I have to respond to.

I began reading your post on the Metavivor blog: "An Open Letter To Fran Visco of National Breast Cancer Coalition" with an open and curious mind, ready to likely encounter something I would want to support and share with my network.

I am an admirer of Metavivor, given the 100% focus on funding research for Metastatic Breast Cancer (MBC).

I nodded my head in basic agreement/interest through the first three paragraphs, and then I had to do a double take:




CJ, I can understand that you and every other Metastatic Patient might be angry at the attention, focus and dollars given to early stage Breast Cancer in our culture.

Guess what: I and most every other early stage Breast Cancer "survivor"/advocate I know is just as angry.

And that is why we spend time, energy, effort and passion advocating for just the things that you are calling for in your letter.  It is why we join forces with MBC patients and advocate together. It is also why we are fed up with things like Pinkwashing, Komen's years of "awareness" media saturation, and beyond.

I don't understand, however, why you chose to publicly share your resentment of our putative "easier" situation and focus your argument there.

I might very well be NED (No Evidence of Disease) but you don't know my life. You don't have the vaguest idea of what I have been—and am still going—through after three separate early stage primary invasive breast cancers beginning at age 29.

And by the same token, you don't have any idea what other early stage "survivors" have been through either.

Diminishing and pooh-poohing our experience, stereotyping us and shaming us for any fear or pain we might feel does nothing to help anyone. Nor does reducing our lives to "odds of survival."

This alienating attitude, this pointless and unnecessary comparison—which, sadly, I have encountered many a time from some MBC patients—robs us both of a significant opportunity. The opportunity to befriend each other, to work together, to have compassion for each other, to see each other in our shared humanity.

In my opinion, this attitude of resentment is the opposite of what we often encapsulate in the term #FearlessFriends on the #BCSM chat.

I am sure all of us, regardless of stage of disease can agree with your words here...
"If you don’t tackle metastatic breast cancer… if you do nothing to prolong longevity, enhance quality of life and render metastatic cells dormant for those  diagnosed with stage IV breast cancer … then you are doing nothing to make a real difference in the breast cancer world."
...and here:
"So my input for 2016 is this: Focus on making a difference for the stage IV community. Without such a focus you fail not just the metastatic breast cancer community, you fail everyone."
I agree with them!

But placing us in opposition to make this argument is misguided and beside the point.

CJ, I have learned so much, grown so much and been humbled and inspired so much by my incredible fearless friendships with people like Rachel Cheetham Moro.

Rachel was the first Metastatic Breast Cancer advocate to open her heart to me and not resent me for having "only" been an Early Stager.

This is the exchange of tweets that opened the door and that led me to become an advocate for Mets:
The exchange comes from a milestone in the #BCSM Chat's early history: it was the first chat devoted to Metastatic Breast Cancer, and among the many important things it accomplished, it broke down the artificial wall of mutual ignorance and mistrust between Early Stagers and those with Mets, led to friendships and collaborations, and galvanized many an Early Stager to advocate for MBC.

Fearless Friendship is a two-way-street. Please consider our shared humanity. We are more powerful together.


Liza Bernstein

NOTE #1: After I published this post, a passionate discussion ensued on Twitter. I am attempting to keep track of it in this Storify: "Stronger Together Regardless Of Stage: A Twitter Discussion."

NOTE #2: Additionally, after I published this open letter, the article "Cancer, Bankruptcy and Death: Study Finds a Link," by Diane Mapes was published by Fred Hutch. It happens to shed some light on what I have gone through as an Early Stager.