To those three or four people out there who still doubt the power of social media, perhaps this post will erase your skepticism forever.
One year ago today, on Monday, February 6, 2012, Susan Niebur and Rachel Cheetham Moro both died of metastatic breast cancer. Susan was 39. Rachel was 41. A stunned sorrow was felt quite literally by thousands of people around the world.
I had the great good fortune to meet both of them in person, at the 2011 National Breast Cancer Coalition Conference in Washington, D.C., Susan by serendipity, Rachel by design. It was my first encounter with Susan, and frankly, when I learned about her broad and influential social media presence, I was astonished that I had not discovered her before. Rachel and I met because we planned to meet, along with three other bloggers who’d become good cyber-friends, to get to know each other in the real world.
Among the hundreds of attendees at that conference, we were part of a small but august group of cheerfully troublesome, not-entirely-well-behaved breast cancer bloggers. We were not all known to one another before then, but somehow, no doubt emanating highly-tuned social media vibes, we managed to find one another. We gravitated to a table near the back and off to the side of the main conference room, where we could be close to the wall outlets and keep our cell phones and laptops charged up. And also, truth be told, we were the naughty kids in the classroom, and our corner allowed us to giggle and grumble and snap pictures of each other. And ask pointed questions. And become friends.
My Favorite Astrophysicist
Susan, I soon learned, had metastatic inflammatory breast cancer. I also learned that she was not only a prolific blogger, but an astrophysicist. A sister blogger AND a sister science nerd! She was certainly the only one of us to have a profile on the website for NASA, her former employer.
During a trip with her parents to the Johnson Space Center in Texas, when she was a mere three years old, she noticed that there weren’t any women in the photos of astronauts. She decided there and then to rectify that omission and become one herself. In 2003, she realized her dream and joined the NASA staff as a scientist for the Discover Program. She didn’t end up on a rocket ship, but she was a card-carrying rocket scientist. When she left NASA in 2006 after the birth of her first child, she continued to consult for them. One of her NASA-funded research projects led her to start the blog Women in Planetary Science, and to organize the first Women’s Networking Breakfast at the Lunar and Planetary Science Conference. In her profile interview on the NASA site, she said,
“I wanted to gather the women together to address issues that I’d heard discussed year after year in the hallways and in the bathrooms — frustrations with the difficulties inherent in the field, such as getting funding, changing jobs, serving on missions, and balancing work and family; difficulties that are only made worse by the fact that most of the women in this field are also married to men working in the field or in closely related disciplines. It was a gamble, but it paid off — we had over 100 women attend, and they were eager to share their concerns and work towards resolving them in ways that helped the community as a whole.[…] Now the breakfast is an annual event, attended by 150-plus women, including management from NASA headquarters. It is thrilling to see a room full of energetic, passionate women mentoring each other in real-time and making plans to do more throughout the year — and to have NASA headquarters there too, listening.”
She was passionate about getting more women and girls involved in science, math and technology. As the mother of two small boys, she was also passionate about parenting and about encouraging every child’s sense of curiosity and exploration, leading to her Twitter moniker @WhyMommy. As a woman with breast cancer, she was driven to raise awareness about her own disease, inflammatory breast cancer, a pernicious and aggressive form of cancer. Like Rachel, she spoke eloquently and candidly about the reality of living with metastatic breast cancer and about the trivialization and ignorance of metastatic disease in a culture rife with pink merchandise marketing. She started a half dozen blogs and websites, wrote and published articles, and was invited to speak, on all of the above concerns and more, by many groups and organizations. Her achievements won awards and grants, including one for her blog Toddler Planet from Bloganthropy.org. She was particularly beloved by a group of women in her home town of Washington called The DC Moms. I encourage you all to visit her site, SusanNiebur.com, to find links to her many blogs and activities, and read more about her remarkable life. How she managed all this while dealing with the ravages of her disease is little short of a miracle. But she did, with grace, dignity, and deceptively gentle, often humorous, wisdom.
Love That’s Really Real
Sometime during the month of October, 2010, both Rachel and I, then unknown to one another, discovered the perfect antidote to the pinkwashing and exploitative marketing that had perverted breast cancer awareness. It was a book called Pink Ribbon Blues, written by activist and sociologist Gayle Sulik. Each of us contacted Gayle to convey our enthusiastic approbation, and that initial communication grew into cyber-friendship among a group of us rebel bloggers, who came to use every means of cyber contact at our disposal to brainstorm, offer support, and encourage one another to keep exposing the insidious flaws and insults of what I came to call the Pink Peril. Inevitably, Rach and I discovered each other’s blogs, along with a shared love for our dogs, and a mutual propensity to use parody, humor, farce, and, above all, hard evidence, to skewer Pinktober.
Like Susan, Rachel was a math whiz. Originally from Australia, she travelled to countless countries, including a bicycle trip in Viet Nam, a safari in South Africa, and a month in Tuscany. She channelled her considerable analytic abilities into becoming an accountant, certainly flouting the stereotype of that profession that depicts its members as dry, humorless bean-counters. While on a trip to London, she met her future husband, Anthony, and, after many more travels together, eventually moved to New York, where she attended Fordham and subsequently worked for one of the premier accountancy firms in Manhattan. She adopted a puppy, whom she named Newman. Soon, she and Anthony bought a house on the New Jersey coast. An avid gardener, Rachel planned and planted her much-beloved garden. She taught herself to become a gourmet cook. She worked, kept in touch with an enormous and dedicated group of friends and family members. She lived every minute with joy, vivacity, humor and love.
Just as she and Anthony were reaffirming their life together, Rachel was diagnosed with breast cancer. She tackled it as she tackled the rest of her life, with gusto and confidence. Finally, it appeared that her cancer was in remission. But not for long. On June 2, 2009, she wrote her first blog post, on the eve of a doctor’s appointment during which she would hear that her cancer had returned. And would never leave.
As many would discover — and still discover — Rachel soon began to apply her formidable intellect to the breast cancer culture. She wrote movingly, bluntly, often humorously, and always incisively about the realities of living with metastatic disease. Two of her most far-reaching blog posts, Komen by the Numbers and its follow-up, Komen by the Numbers: 2010 and Still No Answers, both written in early 2011, are still quoted and cited by bloggers, authors and journalists who seek to expose the glaring contradictions and misguided priorities demonstrated not only by fundraising groups like Komen, but the entire culture of pinksploitation. She forged everlasting bonds of comradeship, support and affection throughout cyberspace. In particular, she lent her public cyber-voice to the work of Breast Cancer Action, and to their project Think Before You Pink, as well as to METAvivor.org, a non-profit group which raises funds that go solely to research into metastatic breast cancer.
Via Skype, email, Facebook, cellphone, and, I often think, sheer osmosis, Rachel personally exhorted me to keep digging into issues for which we shared a mutual passion — not only the Pink Peril, but the misleading hype of reportage about breast cancer research; the paucity of funding for research into mets; the real costs of having breast cancer, financial, physical, and psychosocial; the inequities inherent in the healthcare system; and so much more. It was she who suggested that I turn my snarky graphic from Grumblers for the Cure, into a badge that we grumblers could post on our blogs. On New Year’s Day of 2012, Rach published 2012, With No Apologies to 2011, in which she coined the term ‘bitchblogging,’ a term we mutually applied to ourselves with pride. It would turn out to be her second-last post.
Fittingly, the last post she wrote was For The Cure, Or Not?. Metastatic breast cancer had dragged her to hell and back throughout the previous year, and yet, in characteristic style, she still managed — prophetically, it turned out — to skewer Komen’s immense hypocrisy, the depths of which we were all to discover in the days preceding her death, when Komen infamously withdrew funding to Planned Parenthood.
One of the things that most pierces my heart is that, despite or maybe because of the horrific miseries of 2011, Rach had invited some of her sister bloggers to spend the weekend with her at her home in early March. I was delighted to be included. When she died, just a few short weeks before that weekend, my heart shattered with rage, impotence and speechless grief.
The title of this description of her is taken from a song that she loved and laughed about, that 80’s anthem about the sheer bliss of life and love, ‘Walking on Sunshine,’ by Katrina and the Waves. The day before she died, I posted a video of the song on her Facebook page, used as the soundtrack for a splendid, remarkable dog-training video. She had just spent a dreadful week in the hospital, and last we’d heard, she’d made it out of ICU and seemed to have made a turnaround. The video was perfect — three of the things she loved — dogs, that song, and a day at the beach. I don’t know now if she ever got to see it. The next morning, we heard that she had died. Still, this line from the song is as true now as it was then:
“I feel the love, I feel the love, I feel the love that’s really real.”
Today, one year after that wretched day in February, I know that I do not grieve alone. Today, my heart and thoughts are especially with Curt Niebur and his two little boys, and with Anthony Moro, Mandy Cheetham, and all of Rachel’s extended family.