Tuesday, April 14, 2015


Well, rats.  After an extensive search, I have to conclude I left The Notepad behind in Philly.  The one that had all of the scrawled references to things speakers said that I wanted to remember, the organizations I wanted to look into, and so on.  As little belief as I have (that would actually be none) in all things happening for a reason, I’ll go with the flow and improvise on the big takeaways.
I think I need to write two posts, today on the feelings I don’t want to forget before writing them down, and tomorrow on the more concrete.  The Hear My Voice advocacy/outreach training was amazing.  The 31 of us were a hard crowd for the trainers to rein in – we put to quick use what we’d learned, mobilizing for a die-in on Sunday morning whose message is hopefully spreading all over social media as I type. (A die-in is like a sit-in, a tried-and-true non-violent act of civil disobedience wherein people lie down rather than sit.) In our case we lay down to represent the 108 people that die daily in the U.S. from metastatic breast cancer. A horrific, amazing, fantastic, important experience. More on activism and outreach in Part 2. 
I’ve been thinking about grace since one of the keynotes at the conference.  Grace, for me, is the sum of conflict. For example, the above mentioned die-in – horrifying, and amazing. Both. Having MBC or any incurable illness creates a pretty sizeable conflict the instant of diagnosis.  There’s anger, devastation, grief on the one hand; on the other the desire, the absolute need to live without only feeling those things, to live with some measure of joy. I grind my teeth constantly since my metastatic recurrence.  Day, night, sleeping, wakeful, whatever – I don’t think I will ever be able to stop. Here in my jaw is all of the pain and anger, while I have to try every day to enjoy the day and the people in it. What is the alternative? The grace part is not the latter; grace is the conflict. Grace isn’t a “positive attitude,” it is the act of living daily (and nightly for the many insomniacs among us) with this conflict, grinding away in my jaws and teeth. There is no getting out of it for us, no solution. Grace. 

Don’t fret, I’m still an atheist.  I didn’t find religion, though the talk given by an oncology and palliative care chaplain spoke loudly to me. Back to that pesky little notepad I left behind, on which I jotted down a lot of things he said. Here's the improv. Eselun spoke of grace as the acceptance of being how you are, where you are, when you are.  He referenced the cult of positivity - the unfortunate misconception that caring for ourselves and others requires an unbreakable, rigid cheerfulness and positive attitude.  Not so much. He said: Acknowledge – Accept – Embrace – Own – Move On, or something like it (I’ll correct later with transcript of talk).  I like this better than the whole five stages thing.  I respect these stages and know they manifest themselves, but semantics are important to me and I’d rather think of myself as learning to acknowledge than as being in denial. That said, it is impossible, really, to fathom accepting or embracing any of this cancer crap.  Sitting in a room with over 300 other women with MBC whose ages span five decades makes me think, yeah right.  Again, conflict.
Grace: I had dinner with five fantastic women on Saturday night (it didn’t hurt that we found a fantastic Thai place at which to have it!).  Donna spoke of being absolutely unable to think about the past or the future any more, even the next day, the day before, the next hour, the hour before.  She said, “I’m having dinner with you all right now. I like it. That’s all there is.” 

Grace: The youngest person in my advocacy training group is 24.  Maggie was a ballerina with the Joffrey Concert Group in New York City when at age 23 she was diagnosed with Stage IV breast cancer.  (Google “bald ballerina.” You’ll find her.)  Doris, at 68, is the oldest.  I loved seeing them posing for pictures together.  I have no words for the concept of being diagnosed with breast cancer at 23, however, and the idea that this girl, five years older than my daughter, had a reason to be at this conference, is surreal.  My mind goes to a strange and blurry place when I think about Maggie.
I talked to another woman who found her cancer while nursing her baby.  She thought it was a clogged milk duct.  She started to cry and said, "At least I have my daughter." You can’t imagine how many young moms of young children were at the conference, young women for whom the option of having children if they wanted to is gone.  This is unfathomable.

I talked to a 30-something lawyer and mom of two who has taken early retirement.  In her thirties. I talked to the marketing guy for Living Beyond Breast Cancer.  He was an activist early on in the AIDS crisis, and believes that being heard and having research funded for MBC requires an ACTUP attitude.  Along with the social media guy for LBBC, he was an unquestioning help with the die-in logistics.  I talked at length with K___, a ten-year MBC survivor, who unequivocally told me to get ALL stress out of my life – it doesn’t cure cancer, but, she said, “I love my life.”

Finally, grace: the chaplain finished his talk with one of my favorite poems.  The fact that it is Lucille Clifton’s “Blessing the Boats” and not a well known or more widely disseminated work was a small, literal moment of grace for me.
may the tide
that is entering even now
the lip of our understanding
carry you out
beyond the face of fear
may you kiss
the wind then turn from it
certain that it will
love your back      may you
open your eyes to water
water waving forever
and may you in your innocence
sail through this to that
To be continued...

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