Susan was a planetary scientist who worked at NASA and promoted women in planetary science. After being diagnosed with inflammatory breast cancer in 2007, she worked to educate people about IBC, which does not present with a lump. She fought fiercely to keep our focus on research and funding for a cure, including obtaining lymphedema sleeves for women who needed them and writing compellingly about the impact of a Facebook meme meant to "raise awareness." She read the post as part of the Voices of the Year at BlogHer '10; you can watch the video here.
So much appreciation for the many, many gifts of Susan. Much love to her family & friends. xoxoxo @whymommy oxoxoxox
Rachel was first diagnosed with breast cancer in 2004. She became an advocate for research and awareness through The Cancer Culture Chronicles, a blog with some 100,000 readers and the tagline: "It's time to move beyond pink ribbons and messages of 'breast cancer awareness,' and start agitating for real and meaningful action in the fight to eradicate this disease for good." She provided her readers tool kits, moving accounts of her life facing cancer, and guest posts like this one by CJ (Dian) Corneliussen-James, who talked about how research projects involving Stage IV cancers only receives 2% of all national funding for metastatic breast cancer.
Rachel Cheetum Moro of @ccchronicles, was a fellow cancer blogger. Her voice will be sorely missed in our community.RIP, dear lady.
If you have been moved to write something that we haven't yet seen, please leave a link in the comments below.Remembering Susan Niebur
Julie Pippert at The Artful Flower wrote "We Are Unfair to Grief."
Susan -- bright star always, lady of planetary science, answerer of why, belly laugher, sensitive understanding heart, tremendous warrior advocate, bringer of greater good, feet on the ground, 200 watt mind…"
Liz Gumbinner at Mom 101 wrote "For Susan," on telling her daughter Thalia why she was sad.
"She was so smart too. She was a scientist. Like you could be one day. And she taught me a lot about cancer and made me think about helping women who have it in new ways."
My voice cracked when I added, "And she was a mommy, just like me."
Morra Aarons-Mele wrote "Susan Neibur, Stargazer, Fighter and Friend" at Care2.com before Susan passed away, and the editors left her thoughts in the present tense.
Susan puts herself out there as a cancer fighter and a patient; she shows the vulnerability of illness, but no diminution in her ability to be taken seriously as a writer, professional, mentor, mother, wife, person and general badass spirit. No one pities her, coddles her, or humors her but many thousands support her. She is truly herself and she is truly magnificent.
BlogHer Editor in Chief Stacy Morrison at Filling in the Blanks wrote "The Losses That Echo, The Losses We Share."
Susan had an incredible knack for seeing beyond herself, and taking in the big picture. She would turn her own personal struggle into meditations on life and compassion and community and what this journey is all supposed to mean. She faced her death with a rare grace, which is what kept me coming back to her posts. Seeing that it is possible for someone to die with wisdom and love in the forefront of her mind has soothed the wounds I carry because of my parents' twin deaths of disconnection, denial and fear.
Karen wrote "Goodbye Whymommy" on BlogHer.
She was just an internet friend. As if you can minimalize being an online friend.
Shannon McKarney wrote "One Blogger, Thousands of Tears" on Care2.com.
Susan's blog suddenly wasn't just a blog: It was a chronicle of struggle, of hope, and of precious life, a life that became increasingly obvious was going to be too short.
Francine wrote "The Life of WhyMommy: Online Health Advocacy is Powerful" on U.S. Health Crisis.
But, like all the women who read her posts and somehow believed she would defeat this terrible disease, there wasn’t anything I could do in her individual case. So now, I raise my voice: perhaps too late for her, but not for other women, and indeed not for other men as well, who suffer and died way too young.
Katherine Stone of Postpartum Progress wrote "A Tribute to One of the Coolest Moms on the Planet" on Strollerderby.
I sat alone with her in Asheville, in the little carpeted bar of the Renaissance Hotel, and we talked about her anxieties and her concerns. The focus of the entire conversation was her family, her two boys and her husband. All she cared about was that they would be okay. All she talked about was doing whatever she could to help them get through this. I’ll never forget her face during that conversation, how every filament of focus was trained on her family.
Ananda Leeke wrote "Remembering Digital Sister Susan Neibur."
Through Susan's blog, I was able to witness the power of how one woman used social media to document and share her health journey, build community with like-minded people, give and receive support, and promote breast cancer awareness. She caused me to look for other women who were doing similar things with social media. I found plenty.
Lucretia Pruitt at Half Past 40 wrote "She Walks in Beauty, Like the Night."
I know for a fact that she's the reason I even knew there was a form of breast cancer that didn't show up as a lump in your breast. I think she was the reason tens of thousands of women know it.
Janice D'Arcy wrote "Susan Niebur, the Toddler Planet hero, friend and mother" on the Washington Post.Remembering Rachel Moro
Her story has been shared thousands of times over. Susan has died, but that story remains.
Gayle Sulik of Pink Ribbon Blues, a collaborator with Rachel, compiled Rachel's writings and told the story of how they met in "Rachel Cheetham Moro 1970-2012."
Rachel, then Anna, shared a blog post with me that she had written about what she saw as a truly bizarre phenomenon, breast cancer avatars on Second Life. In this virtual environment, one can have virtual breast cancer, wear pink t-shirts, attend pink ribbon fund raising events, and even go to a support group. Anna/Rachel wanted to know what a medical sociologist like me would think about such a thing. I thought it was as bizarre as she did.
Jody of Women with Cancer, a community Rachel was active in, wrote "Our Virtual, Very Dear Friend Rachel."
The virtual world leaves us her words...raging and often outrageously funny blog posts, emails, DM's, messages on Skype and of course, jokes. Always. Always something to laugh about. If were weren't swearing, that is. There was something about cancer, and that powerlessness it evokes, that set free our inner sailor. More cancer asshattery, she'd write. We'd cuss cancer up one side and down another. If those words could burn she'd still be with us today, believe me.
Ronnie Hughes at Being Sarah wrote "Memory Pools."
I can write no more for crying.
Nancy at Nancy's Point wrote "One Fateful Day in February."Remembering Both Women
Rachel, even though I didn’t get the chance to meet you in person, you taught me so much about many things. Mostly, you taught me about friendship. Thank you for your voice. Thank you for your tireless advocacy.
Elaine at Medical Lessons wrote "Thank You, Rachel and Susan."
Each of these women inspired many people I know. They were brave and open, and helped others to under¬stand what it’s like to face pro¬gressive, metastatic disease. Their words didn’t only affect people with breast cancer, but influ¬enced also their loved ones, and indi¬viduals who face all sorts of illness.
Stacey at Bringing Up Goliath wrote "For My Blogging Sisters."
They need more time, they probably thought. To inform others that breast cancer is not over despite how pretty it looks dressed in pink.
People still get diagnosed. People still die. People still get left behind.
Lori at Regrounding wrote "Real Loss in a Virtual World."
We know full well that this disease doesn’t discriminate in favor of those who are articulate, powerful, clear voices who ring out against the political insanity that surrounds breast cancer. That has never been clearer than it was yesterday. We have ALL lost two important women, and they will not be forgotten.
Wendy Will wrote "Dear Breast Cancer, You Have Been Warned."
You truly suck. You’re a sneaky bastard and you play dirty. You prey on good people. People with families and friends. People who do great things in this world and you steal them from us. You take mothers from their children, wives from their spouses, daughters from their parents. You’re unfair and relentless. I hate you. Will you just go away already? Won’t you just stop ruining lives?
Marie at Journeying Beyond Breast Cancer wrote "Remembering Rachel" (though it's about both women).
On A Prairie Home Companion Garrison Keillor tells how, in preparation for a winter storm emergency, each child is assigned a storm-home, a place nearer the school, where the child will go, and stay, if the weather becomes too treacherous for travel. On the first day of school, slips of paper are given to each child. The paper says: "Your storm-home is with the (blank) family."
Sometime in our life, every one of us needs a storm-home.
You can donate to memorials for Rachel at Breast Cancer Action and METAvivor Research and Support. Susan's family has not released information about a memorial, but a good place to start would be her page on taking action to fight breast cancer.
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