The Life of @WhyMommy: Online Health Advocacy Is Powerful

by Admin on February 7, 2012 · 4 comments

in News, Patients

Don’t ever tell me online relationships can’t be strong. On Sunday, I had a premonition that drove me to “catch up” with a blogger whose site I hadn’t been to for a while. When I got there, the last post began this way:

– A conversation with my husband, shortly after arriving home this afternoon with fresh oxygen tanks, spots on my liver, fluid pushing around my lungs (likely filled with cancer, as are the tumors inside) and at least one broken vertebra that must be healed before we resume any kind of treatment. –

How did we get here? I asked my love, across the bed strewn with children’s toys, books, and an oxygen tank.

The post goes on to admit that Susan Neibur,  a woman we all knew as @whymommy, the author of the truly magnificent blog Toddler Planet, had asked for in-home hospice “at least for a while.”

The post is dated January 22. It encouraged me to keep checking back, and today I am grieving today for a woman I met in person only once, at a BlogHer conference, which she struggled to attend so she could give a keynote presentation.

Susan was a planetary scientist, and she was diagnosed with inflammatory breast cancer, a rare and aggressive form of breast cancer that doesn’t get talked about much ( the news covers things like whether women should have mammograms at 40 or 50.) But it kills young women, and now it has killed Susan. It is undignified to say that sucks.

I met Susan BlogHer and Twitter, where she actively shared all her experiences — sometimes with the clinical detachment of the scientists. I tried hard to engage with her in the only way I could, by writing encouraging comments on her blog and offering to introduce her to EmpowHer, a network of women interested in women’s health headed by a friend of mine who is a fierce patient advocate.

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.

And here is what her husband says about all of us here online, where some still doubt that relationships are “real”:

 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.

 

 

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