and the lesson of event-driven personal publishing

For the past two months, I have followed the rough up-and-down saga of a family with grade-school-aged kids discovering the Mom of the family has leukemia. I have become part of a community of friends and colleagues who have followed that family’s journey through chemotherapy and disappointment and hope and remission and now, after two months in the hospital, the road to recovery.

I was able to follow this saga because the Dad of this family — a friend and business acquaintance of mine — set up a page on the website,, a non-profit “web service that connects family and friends during a critical illness, treatment or recovery.”

I do not want to call the site a “blogging platform,” as the word “blog” may cause some to project onto the service some connotations that miss the point. However, without using the word blog, let me describe it as a tightly-focused personal publishing platform that is geared towards one purpose — allowing a family going through a health crisis the opportunity to communicate in a systematic, efficient manner to a network of family and friends — and for that community to express their concern and thoughts, in return.

Often times, when I look at an online publishing platform, I’m analyzing user features or issues related to “openness” or flexibility. Or, I’m having to discuss why it is crazy to use such condescending terms as “user-generated-content” to describe what real-people do when they use online tools to communicate. However, I’ll admit, I haven’t taken the time to see if has an intuitive backend or RSS or uses Ajax. And I’ve never once thought there is the need to explain why those who “use” this site are not “users” and what they are doing on the site is not “generating content.” All I know is that for this family, and those friends and extended family who care, this service has been the most effective publishing platform I have ever witnessed. For a small band of friends at one moment in time, it is a publishing platform more effective than anything Google, the New York Times or any site ever termed Web 2.0 will ever conceive. That’s because what I’ve seen happen for the past two months is not about features or content — it’s about caring and connecting and love.

In addition to making a contribution to the “Run for Dori” fund, I wanted to note here that I’ve also made a small contribution to — whoever they may be.

I am also happy to report that my friend has been home for a week and, despite the heat here in Nashville, she is enjoying the outdoors with an appreciation few of us will ever know.

  • Thanks, Rex, for such a thoughtful post. I, too, have been an avid reader (user?) of CaringBridge and So much so that when I finally saw Jim in person, I embarrassingly admitted that I felt like I had been “stalking” him. Those feelings of course are trumped by the incredible benefits provided by these sites/technology: constant connection with friends who are facing difficult challenges and life-changing events.

    As I wrote in a comment on RunForDori, the really amazing thing, to me, is how this level of personal communication about illness, struggle, friendship and recovery has a substantial positive effect on so many of us “users” (I’m going with that term). Users have been educated about leukemia, inspired by Jim’s race training, compelled to support the fight for a cure, reminded about what really matters in life, etc., etc. For me, life is just downright better because of this communication, and (… here goes …) it’s way cooler than the iPhone.