Punk Rock Mommy: A Tribute

Hi Laura,

Last week, Phyllis Johnson wrote a beautiful piece relating to Punk Rock Mommy from the perspective of someone who is part of the Inflammatory Breast Cancer community. The post is called "Pathfinders in the Breast Cancer Community."

In it, Phyllis shares bits of IBC community lingo, including the term "pathfinder," which is an honorific term for those community members who have passed away.

The appeal of being an "insider" stems from people's desire to balance exclusivity and access, but the concept takes on pejorative tones for me ("insider trading"). Too many people (advertisers, marketers, people trying to sell us things -- ahem Bloomingdale's) use the term "insider" to convey some sort of extra value as a means to accomplish some other goal. Most of the time, in our modern marketplace, I don't care to be an insider.

With her elegant post on breast cancer pathfinders, however, Phyllis manages to make the concept of being an insider -- in this case an IBC insider -- deeply gratifying. While it doesn't focus just on Andrea Collins-Smith (Punk Rock Mommy), I hope you  will take the time to read Phyllis's post as well.

Here's the link again for "Pathfinders in the Breast Cancer Community."

Sarah

Sarah, Thanks for your kind words about my post.  Sometimes people do use being an insider to put others down.  The perspective is different if your group is formed because the members of the group feel marginalized.  Before Betty Ford and some other outspoken breast cancer patients spoke out, most breast cancer patients suffered in silence or in whispered conversations at ladies' lunches.  Now forums like healthcentral.com and the specialized mailing lists for other health problems give people a place to talk with others who can understand what they are going through in a way that only "insiders" can.  "Outsiders" are welcome to come and  learn.  I'm so thankful for the opportunity this website has given me to share with the broader breast cancer community the experiences of a group that is small in the percentage of cases diagnosed (1-5%), but represents a disproportionate number of deaths.