It totally amazes me how quickly Web 2.0 or social networking has moved from a gee-whiz cool tool to part of the fabric of our lives. One of the best uses of a social networking tool is any of the blog-like sites that facilitate communication for families when they are at the lowest point of their lives.
Not so long ago, a friend of mine was dying. It was 6 years ago that he was diagnosed with a cancer that had no cure. His family and friends were scattered far and wide. While they all cared deeply, my friend had lots of living to do in his last year, and spending his remaining year writing and calling everyone on a regular basis didn’t seem like the best use of his time. So we created a website just for him, documenting his doings with the photographs that were taken of the places and people with whom he spent his last year. It was quite novel to most people, and they loved it! The hours I spent writing the html code for the site were a labor of love for him and his family.
Fast forward to the present. Another one, this time a very small person who is very dear to me, receives a potentially terminal diagnosis. His family and friends are scattered far and wide, and desperate for information, a morsel of hope that he will beat the big C (or in his case ALL). But mom and dad and the close army of defenders that surround him are totally engaged in providing for his care. How to keep his wider supporters informed without spending hours in physical individual communication. Another website? Not this time; now we have a ready-made tool, and broadcasting regular updates (both the speed bumps and the triumphs) is so simplified that almost anyone with an Internet connection can do it.
So commonplace are new tools that when my little darling got sick, everyone I knew asked “what’s his CaringBridge site?” Not “does he have one?” And yes, on day 3 following the frantic medevac flight to save his life his dad (following the hospital’s suggestion) had posted the first CaringBridge post. Since then his parents have posted 99 entries, 14,336 visitors have read the site, and 504 messages of hope and love have been left for him and his family. All that positive energy can’t hurt — he is doing very well!
Another CaringBridge link with which I have a peripheral connection is that of a law enforcement officer who was shot in the line of duty 2 1/2 months ago. A nationwide support network follows his struggles and is praying for him. As of tonight there have been 430,980 visits to his site.
So many people have told us how much they have appreciated the updates. In order to find the site, one must know the directory name, which gives a modicum of privacy. One gentleman related that some time ago when he had a family member gravely ill, the family spent all their time on the telephone updating relatives. Likewise, when I was a pre-teen, my father was in intensive care for quite a while. When we got home from the hospital the phone rang steady, until my mother couldn’t stand it any more and assigned us kids to give the daily update. These networking sites facilitate communication, saving much effort and energy for caretakers.
CaringBridge has been around since 1997, when Sona Mehring’s friend had a high-risk pregnancy. According to the CaringBridge website: With extensive experience in the information technology industry, Sona’s vision was to build upon that formative and deeply personal experience – combining the capabilities of technology with the personal needs of people facing a crisis. In the years since, Sona and CaringBridge have become widely known for the creation and implementation of Compassion Technology™ that facilitates personal and convenient communication for individuals receiving care.
A similar social network type service was founded by Eric and Sharon Langshur in 2000. According to their CarePages online community site: When their son, Matthew, was born with a heart defect in 1998 and needed surgery, Eric and Sharon struggled to find a way to keep in touch with family and friends about Matthew’s condition. Sharon’s brother set up the first CarePages patient website to help. Today, Matthew is a healthy, happy child, and CarePages has grown to reach millions of families across the globe.
Around here (in Minnesota) CaringBridge is the dominant site – could be because it’s based in Eagan MN. CaringBridge derives 80% of its support from donations of users. I’m a little disappointed at the number of ads on the CarePages site, but they gotta pay the bills, I guess! Something else I found while researching for this post (librarians do their research, you know) — Yahoo’s Goodsearch www.goodsearch.com donates to CaringBridge for every search run through its Yahoo search utility. From now on, that’s where I’ll start my searches ;^) (sorry, Google). Just enter “caringbridge” in the box designating who you want to benefit. There’s also a goodshop site that donates portions of sales (I’ll have to check that out — a good excuse to shop).
We’ve come a long way in a short time. Social networking and online communities are part of our lives, and I’m glad to be part of it.
