“I was diagnosed with inflammatory breast cancer in June 2007. I had a year of chemotherapy, surgery and radiation, all developed by really smart researchers funded through the efforts of men and women like you. The treatments worked, and I have *lived* for 4.5 years while my babies grew up and went to school. I am grateful, so grateful, for that.”
That was the beginning of Susan Niebur’s talk last fall at Blogalicious. She was kind enough to let us post it. She died today, and we asked Morra Aarons, who worked with her in cancer advocacy, to think about this woman who has so touched so many of us. She wrote it while Susan was still with us – and we’ve left it in the present tense.
by Morra Aarons-Mele
Dr. Susan Niebur is an astrophysicist ; she’s also a gifted community organizer. She’s done remarkable things that motivate large groups of women to act. Anyone who has spent any time with a group of women knows this is not an easy task.
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.
Let’s pause for a second to consider that Susan is first, really a rocket scientist. From her bio:
Susan Niebur recently spent five years at NASA Headquarters. Her major role was as Discovery Program Scientist in the Planetary Science Division….She co-founded the first-ever Early Career Workshops for Planetary Scientists, and led the first three workshops, at annual meetings of the American Astronomical Society’s Division for Planetary Scientists (2004) and the Lunar and Planetary Science Conference (2004 and 2005). Before coming to NASA, she founded the American Physical Society’s Forum on Graduate Student Affairs and served as its first President; founded and led the first peer mentoring group at Washington University; co-created and administered the first National Doctoral Program Survey; and served as President, Vice President, Regional Coordinator, and first Alumni Affairs Coordinator for the National Association of Graduate-Professional Students while completing her Ph.D. in Physics at Washington University McDonnell Center for Space Sciences.
Even as a young planetary scientist, Susan organized people. She started early career programs for young scientists. Once established in her career, she helped found the peer mentorship group Women in Planetary Science, because there are only about 350 of them in the WORLD and as the group’s tagline says, “Women make up half the bodies in the solar system. Why not half the scientists?”
Because I had first met Susan as a cancer blogger, I was thrilled to encounter the part of her who is a passionate advocate for women’s professional success and work life balance. On a panel I led at a BlogHer Conference, about the seemingly impossible quest for family-friendly work practices, she described her own struggle as a PhD-level scientist who had kids and a husband and ambition. She managed her own way around the strictures of academic advancement but it was bitter for her.
Once she received her cancer diagnosis, she educated many thousands of people about inflammatory breast cancer, fighting for funding and recognition.
She also helped shift how we think about breast cancer. To how many of us did her writing finally bring the aha moment of, Wow, maybe pink ribbons and breast cancer awareness isn’t enough? Maybe it’s time for research and for fighting for funding? As she taught me, 30% of breast cancer cases progress to metastatic breast cancer, which only receives 3% of the research funds in the U.S.
At my request, last fall she stood up in front of a crowd of 350 women at a Blogalicious Conference (a crowd that probably just wanted to stretch after a long morning of sessions and eat their lunch) and she moved them to tears. I guarantee you not one woman left that room thinking the same way about breast cancer as they had when they’d awakened that morning.
Her help in organizing an online and offline community to provide lymphedema sleeves to women would be envied by Team Obama 2012 themselves.
The hardest, most important lesson
Finally, she has organized and taught many thousands of women, many of us young mothers, to live with the thought of death. Each day on her blog, Susan receives many comments wishing her to get well, to fight the cancer, to survive. And Susan herself writes, “I just want to live.” But I want to say that perhaps the most powerful thing Susan has taught me is that it’s ok to think about death, to talk about it and to accept it while still being very very angry that it will happen. That is very hard in our culture. But as Susan always says, in the long run no one survives metastatic cancer. She survives each day with grace and humor. I don’t have faith or a religious tradition to get me there, but I can honestly say that learning from Susan’s generosity of spirit in the face of death is the biggest inspiration I have found to keep going through my life, and to live it as best I can.
Susan, I’m so grateful to you and for everything you’ve taught me. Thank you.
Morra Aarons-Mele is the founder of the digital PR firm Women Online. She was founding Political Director for BlogHer.com, and writes for BlogHer as well as Huffington Post, MomsRising and Guardian.co.uk. She has covered events from the White House to the campaign trail to Harvard Law School in her role as a blogger on women, politics, and work.
Photo from facebook