Sona Mehring, Founder and Executive director of CaringBridge, told me the story of her close friend, JoAnn, who suffered complications during a high-risk pregnancy. JoAnn's husband, Darrin, called Sona and asked, “Can you let everyone know what’s going on?”
Sona jumped into action, relating the news to relatives and friends. Sona realized there might be another way to keep all those people—many who lived across the country and the world—in the loop, and enable them to feel empowered during a crisis. Using her technology savvy, she set up a Web site so family and friends could do just that.
Baby Brighid was born during the twenty-fourth week of pregnancy. According to Sona, “[The idea for] CaringBridge was born on the same night Brighid was born.”
The family was able to communicate while JoAnn got her rest. Visitors went to the online guestbook to send the family love, prayers, and words of encouragement. The site posted daily updates about mom and Brighid, too. But after many days of surgery, Brighid died.
Out of this family’s tragedy came something hopeful. Conveying this horrible news had been very difficult, but avoiding the painful burden of many phone calls—and communicating via the Web instead—made it somewhat easier. Knowing this, Sona and both families were inspired to set up a Web site at their local hospital so others could benefit, too.
Sona took the idea even further and, using her knowledge of technology, launched CaringBridge in 1997.
Today anyone can set up a free Web site through CaringBridge. You do not have to contribute or be a sponsor to set up a site. Some visitors suffer from a long-term disease or are undergoing cancer treatments. Others endure car accidents and take months to recover. And still others, according to Sona, “Go through a two-week surgery and just want to be in touch.”
CaringBridge is a nonprofit and is free of advertising. Says Sona, “Early on I made the strategic decision not to advertise on the site.” She felt it was important not to take away from a visitor’s experience, and to ensure that it remains personal to all users. The formula seems to be working. The site mostly depends on contributions from users (now at 85 percent), while sponsorship, mostly from hospitals and hospice hospitals, totals about 15 percent.
Sona mentions that it’s common for people to keep their sites up long after they’ve recovered or, in some cases, after a loved one has died. The account might not be as active as before, but visitors continue to post anniversaries and new journal entries.
When asked about their competition, Sona replies that many visitors also keep a blog or depend on Myspace.com. However, when it comes to their health, they turn to their CB site.
In 1998, Sona’s mother got breast cancer and came to the twin cities, where Sona lives, for medical treatments. Her CaringBridge Web site enabled her to keep in touch with family and friends back in Wisconsin. Sona’s experience with her mother reinforced the idea that her site provided a meaningful service for people. “The love and support you gain from CaringBridge is very powerful.”
Sona quickly points out that the site is for the caregiver, too. During her mother’s cancer, Sona kept in touch with people that she is not normally in everyday contact with, which was tremendously helpful emotionally. “The support you get [as a caregiver] is tremendous,” Says Sona, “It’s support for the entire family.” She continued, “And the site enables you to really know when it’s time to bring over that casserole!”
Much of CaringBridge’s growth has been through real grassroots awareness; visitors tend to learn about the site through friends and relatives. I was personally inspired to write about CaringBridge because I recently learned about my cousin’s friend, Melody Duffalo, who died after a long bout with leukemia in her early thirties. Reading through her journal on the site, I was truly touched by Melody's words. Up until now, I was not aware of such virtual communities.
The health care community has been supportive of the concept. At a recent visit to Dana-Farber/Brigham and Women’s Cancer Center for a “Women and Cancer Conference,” Sona spoke to nurses about the site. Nurses, who are often the point of contact with patients and their families, work on the frontlines in the health care community. “For them, it’s more than just [giving] a shot; it’s about making emotional connections,” says Sona. There was a lot of nodding going on in the audience.
The sense that healing is solely about science has changed, too. Most health professionals Sona speaks to agree with the notion that if a patient has love and support, they will often get better. Many are embracing the idea of emotion having a powerful influence over our health—and some doctors, like Esther M. Sternberg, author of The Balance Within: The Science Connecting Health and Emotions, are trying to prove it. This book is on the top of Sona’s reading list.
CaringBridge also strives to bring larger communities together. Following Hurricane Katrina, Sona set up CaringBridgeRelief. But ironically, CaringBridge suffered competition; they couldn’t get the word out to people because so many other nonprofits were also trying to get their word out at the same time. Sona said it has had limited success, perhaps in part because people are simply not aware of the service—or because they lack Internet access.
In the future, there may be other ways CaringBridge could bring communities together. “CaringBridge could play a vital role if there’s ever a pandemic,” says Sona. It could act as a “portal,” connecting people during times of crises. For example, if bird flu or another disease were to hit, CB might be a way for citizens to keep connected—and get the resources they need.
The vast majority of users who create sites are (you guessed it) women. As Sona says, “Women communicate more—period.” Recently, her friend and old college roommate, Karen, suffered a brain tumor. It was good to be able to keep in touch with her through her CaringBridge site, since she lives a few states away. Sona tells me Karen is doing quite well today.
As our lives become busier and we live farther from each other, CaringBridge is a powerful tool for people to stay connected. And knowing exactly when to stop by with that casserole helps, too!