What We Learned from the Blogger Who Inspired a Virtual "Love Fest"

How Susan Niebur (aka @WhyMommy), who lost her battle with inflammatory breast cancer, taught us to support one another

With recent uproar about the Susan G. Komen for the Cure/Planned Parenthood controversy, it’s easy to forget that when we talk about breast cancer, we’re talking about real people. Each one of us knows someone who has battled breast cancer -- a mother, a sister, a friend, a partner. My grandmother had breast cancer and my best friend passed away from breast cancer six years ago. Each one of us has one or more stories like this. But one brave woman, who was a social media pioneer in her approach to dealing with her diagnosis and wanted us to know that not all breast cancers are created equal, is no longer with us.

Many in the blogosphere know of Susan Niebur, who wrote the blog Toddler Planet and was active on Twitter as @whymommy. She was diagnosed with inflammatory breast cancer shortly after the birth of her second child five years ago. While her site Toddler Planet started out as a way to chronicle her motherhood journey (yes, a “mom blog”), it grew to be a gathering place where Susan shared her life living with her disease. For many of us, Susan was the first person who ever told us about IBC -- as she called it, the breast cancer without a lump.

I knew Susan though our local blogging community and, sadly, she passed away yesterday after a valiant battle against the disease she knew would ultimately end her life sooner than anyone wanted.

But the reason I’m writing this is because of the outpouring of love and support for Susan all through the online world. You see, Susan was a powerful and gracious advocate, a generous friend and an accomplished scientist -- an astrophysicist. She used the combination of her professional knowledge, her skills in the online world and her growing knowledge about her form of breast cancer to help others. As it became clear that Susan’s battle was most likely coming to an end, her friends wanted to do something to give back in a tiny way for all the things she’d done for her community of friends, fellow cancer patients and women in science.

Her closest friends had the idea to support her in her final days by putting together a virtual “love fest,” asking those of us who knew her to send photos, images and words of support that would be turned into a digital card. But you know how things are in the blogosphere. Those who knew Susan from other parts of her life, and those who only knew Susan virtually, but who’d been inspired by her words, her journey and her straightforward way of writing about how she dealt with her disease, poured in from around the country. So far, three virtual “love fests” have been produced, an amazing tribute to the reach and impact one passionate voice can have on an issue in the age of social media. Not to mention a previous support effort called, "No Princess Fights Alone."

Some people complain that real friendships and relationships are being lost and harmed because we’re too reliant on being connected virtually. And I understand that point, but the journey we’ve been on with Susan, and the evidence of the lives she’s touched through these virtual cards, is evidence that even an online village can be a real one:

The final post on Susan’s blog is from her husband, and it sums up the impact one life can have in this new age of connecting with others online:

Susan Niebur passed away on February 6, 2012 after a lifetime of love, crusades, and strength. Over the last five years she lived with inflammatory breast cancer, a rare and aggressive form of breast cancer that presents without a lump. She chronicled her life with cancer here on her blog ... with honesty and emotion that were even more rare and aggressive.

She is survived by her family, friends, achievements, and the indelible marks she made on people around the world. In lieu of flowers, please consider furthering Susan’s legacy through a contribution to the Inflammatory Breast Cancer Research Foundation. Or please choose to make a difference somewhere, anywhere, to anyone.

I can’t begin to describe how her friends, those physically nearby and those she knew only on the internet enabled her to carry on through five years of treatment and recurrence. Many of you have commented on Susan’s strength and grace, but these were traits that she pulled from all of you.

Thank you all,
Curt Niebur (WhyDaddy)

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