Susan and Her Story: A star that will keep on shining

Anyone who doubts that the sense of community among people who meet online is real has never seen what happens when we lose one of our own. It happened among book bloggers when Dewey passed away–a loss that was compounded by the fact that it was very much unexpected.
A larger, more diverse blogger community has had more time to prepare to lose one of its dearest members–she brought us on the journey with her–but the impact of her loss is just as profound. The “Goodbye” post on the blog Toddler Planet on February 6 wasn’t unexpected, but it knocked the wind out of me anyway. 

I met Susan Niebur for the first time at BlogHer’09 in Chicago, but I already knew who she was – blogger, mom, astrophysicist, and cancer survivor. When Susan was diagnosed with inflammatory breast cancer (IBC) – the least common and most deadly form of the disease – in 2007, fellow bloggers rallied around, forming Team Whymommy to support her in her battle against it. She won…that time. She had a recurrence of the cancer in 2010, and in early 2011, she learned that it was back once more. Susan fought hard–and never fought alone–but the cancer dealt the last blow. She left a husband, two young sons, and an unforgettable impression on many, many people; as her husband put it in that post, “She is survived by her family, friends, achievements, and the indelible marks she made on people around the world.”

I only met Susan in person a few times, at the BlogHer conferences in 2009 and 2010, and certainly can’t claim to have been close friends with her…but if you ever had the chance to speak with her at all, it was easy to come away from the conversation feeling like you were friends. When I ran into her the evening before BlogHer’10 began and she said “I’m glad to see you! You were on my list of people I wanted to talk to,” it meant a lot to me.
But like most people who weren’t her fellow DC Moms, or planetary scientists, or cancer activists, I mostly knew Susan through her words–thoughtful, inspiring, and unfailingly honest. I was moved by her response to “awareness” memes–

“Friends engaged me on FB and twitter too, talking about it, asking why I felt left out, and letting me know that the whole meme was staged by some women in the midwest urging awareness of breast cancer.

Really?

Awareness?

Aren’t we aware by now, people? Don’t we know that we need to understand our own bodies, take notice of changes in one breast but not the other, and call the doctor when we see that something’s changed? Don’t we know that we need to talk to our doctor about thermography or mammograms? Don’t we know?…

…(T)his was ostensibly an effort to raise awareness of breast cancer — but one in which breast cancer survivors themselves could not participate, and were reminded (as if we needed a reminder) that we didn’t need bras anymore, that most basic undergarment of women everywhere, that symbol of sexuality, for the simple reason that we had already sacrificed our breasts in a hail mary attempt to keep the rest of our bodies from dying of cancer.”

–and inspired to join the Army of Women as a possible breast-cancer research volunteer. I’ve also donated in her memory to the Inflammatory Breast Cancer Research Foundation. Susan made me aware that action, not “awareness,” makes a difference. Research is the action that can bring about better treatments and, ultimately, perhaps a cure–and those of us that can’t actually do the research can support the efforts of those who can.
When I look at the night sky–and look after my own health–I’ll think of Susan. Her story–mother, scientist, activist, educator, survivor–needs to live on, and I believe that many of us who were fortunate enough to be touched by it will continue to tell it, and to be inspired by it. In her own words:

“All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others. For these are the only things that will remain.”

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