Rachel and Susan: Their Words Live On

Susan, front-left, wearing glasses; Rachel, back row, third from right; NBCC 2011

It was through their words, written on their blogs, that many of us first came to know Rachel Cheetham Moro and Susan Neibur. A lucky few of us got to meet them, along with the other bloggers in the august, feisty group pictured above, at the National Breast Cancer Coalition Conference in April, 2011. It was a rare treat to put a face, a smile, a whole person — “Oh, my god!” we said, laughing, “you’re real!!” — with the women we had come to know in cyberspace. It seems impossible that we lost them both this week, on Monday, February 6, 2012, a day now etched into our hearts.

I, who write almost every day in some fashion, usually with a fair amount of ease, have struggled all week with a heavy silence in my soul, a speechless inner keening, any words I might choose drowned in tears and heartache and shock. Yet we all knew, we all feared, that such a day would come. They were both young, both in their thirties when they were diagnosed with breast cancer. And within a handful of years, their cancer turned metastatic. Yet they continued to write, to speak their truth, to awaken us to a reality that too often seems lost amidst a sea of pink.

If there is any comfort to be had in this catastrophe, this tragic loss, it is that their words have made a difference, and will continue to do so. Of the many posts, tributes, and articles so far written about them, I wanted to share these two, each written for online news sites, each testifying to the power and reach of the words our two sisters have left behind.

The first is a call to action, to demand better from an organization that purports to be keeping its promise to another young woman, diagnosed in her thirties, robbed of life by metastatic breast cancer. Fittingly, the article, published two days after her death, quotes Rachel: The real scandal: science denialism at Susan G. Komen for the Cure.

The second, published on a Washington Post blog, honors Susan: Susan Niebur, the Toddler Planet hero, friend and mother.

All week, I’ve been turning to the words of other wise women who have written, who knew the power of words. And I found this, an excerpt from a poem by Adrienne Rich, from her collection The Dream of a Common Language, that articulates the power of telling our stories:

–from Transcendental Etude

No one ever told us we had to study our lives,
make of our lives a study, as if learning natural history
or music, that we should begin
with the simple exercises first
and slowly go on trying
the hard ones, practicing till strength
and accuracy became one with the daring
to leap in transcendence, take the chance
of breaking down in the wild arpeggio
or faulting the full sentence of the fugue.
–And in fact we can’t live like that: we take on
everything at once before we’ve even begun
to read or mark time, we’re forced to begin
in the midst of the hardest movement,
the one already sounding as we are born.
At most we’re allowed a few months
of simply listening to the simple line
of a women’s voice singing a child
against her heart. Everything else is too soon,
too sudden, the wrenching-apart, that woman’s heartbeat
heard ever after from a distance,
the loss of that ground-note echoing
whenever we are happy, or in despair.

Everything else seems beyond us,
we aren’t ready for it, nothing that was said
is true for us, caught naked in the argument,
the counterpoint, trying to sightread
what our fingers can’t keep up with, learn by heart
what we can’t even read. And yet
it is this we were born to. We aren’t virtuosi
or child prodigies, there are no prodigies
in this realm, only a half-blind, stubborn
cleaving to the timbre, the tones of what we are
— even when all the texts describe it differently.

And we’re not performers, like Liszt, competing
against the world for speed and brilliance
The longer I live the more I mistrust
theatricality, the false glamour cast
by performance, the more I know its poverty beside
the truths we are salvaging from
the splitting-open of our lives.
The woman who sits watching, listening,
eyes moving in the darkness
is rehearsing in her body, hearing-out in her blood
a score touched off in her perhaps
by some words, a few chords, from the stage:
a tale only she can tell.

Vision begins to happen in such a life
as if a woman quietly walked away
from the argument and jargon in a room
and sitting down in the kitchen, began turning in her lap
bits of yarn, calico and velvet scraps,
laying them out absently on the scrubbed boards
in the lamplight, with small rainbow-colored shells
sent in cotton-wool from somewhere far away,
and skeins of milkweed from the nearest meadow–
original domestic silk, the finest findings–
and the darkblue petal of the petunia,
and the dry darkbrown lace of seaweed;
not forgotten either, the shed silver
whisker of the cat,
the spiral of paper-wasp-nest curling
beside the finch’s yellow feather.
Such a composition has nothing to do with eternity,
the striving for greatness, brilliance —
only with the musing of a mind
one with her body, experienced fingers quietly pushing
dark against bright, silk against roughness,
pulling the tenets of a life together
with no mere will to mastery,
only care for the many-lived, unending
forms in which she finds herself,
becoming now the sherd of broken glass
slicing light in a corner, dangerous
to flesh, now the plentiful, soft leaf
that, wrapped round the throbbing finger, soothes the wound;
and now the stone foundation, rockshelf further
forming underneath everything that grows.

For Rachel, for Susan, we must all keep writing their stories and ours.

This entry was written by Kathi, posted on Friday, February 10, 2012 at 04:02 pm, filed under Making A Difference, Metastastatic Breast Cancer and tagged , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

9 Responses to “Rachel and Susan: Their Words Live On”

  1. Kathi,
    I know you will be here tomorrow for Rachel’s memorial. Please know I will be there in spirit with you and Gayle and Stacey and SARAH….. I’m sending virtual hugs to all of you. We all hurt. Some more than others and I am wrapping my arms around all of you.

    Sending love and support to the families of both Rachel and Susan…… and yes, we need to keep their voices alive in our words….. and in our actions.

  2. Oh yes indeed, in our actions…

    XOXO, AM…I know I will have you & all of us ‘Grumblers,’ bloggers & change-makers in my heart.

  3. Kathi, reading those words leave me with none. Just so beautiful. Thank you. xoxoxo

  4. <3, Stacey. Adrienne Rich knew. She's one of the writers who made me yearn to write.


  5. This is perfect. Just lovely. I’m glad you will be able to be there for us tomorrow. I’m knew that the group that met at NBCC would be smaller…some day. The shock and pain is that is came far too soon, and on the same day.

    It would be easy now, to retreat. For all of us to return to our writing dens to nurse our solitary wounds. And while we all need some of that, collectively, no, we will keep writing. And talking. Maybe even more than we were.


  6. Kathi,

    You are right; these two beautiful women’s words live on, and I take comfort in that. Great choice of the Adrienne Rich poem. I will be there in spirit, and I’ve thought very intensely and grieved very intensely about losing these two women.

  7. […] came from other authors. I commend them to you if you want to know more. You can find them HERE, HERE and […]

  8. Never underestimate the power of words to influence, encourage, transform. What a lovely piece you have selected to articulate that thought. I note from the group picture that at least two of the women have/had lymphedema. I lift up my green tea mug now to those who are managing that scourge on the breast cancer population. Thanks for the wonderful post, Kathi!

  9. Rich was another women who really inspired me when I was a young writer, Jan. It’s been so lovely to go back over the work of these poets I’ve loved so long, and to find their work so apposite still.

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