For me, it started with Tyler McGrath. He was the eight year-old son of Vicky Talbot, a woman I’d only met online on various stock car racing discussion boards. Most of the time she wrote to praise Dale Earnhardt Jr., her favorite driver, or to diss Jeff Gordon (my favorite driver), and we had a lot of fun exchanging friendly insults in cyberspace. Then, just after Christmas 2001, she dropped a bombshell. Her eight year-old son Tyler had been diagnosed with leukemia. My father died of the disease and I have a background of working with hematology researchers, so I was very sympathetic to what she faced. At first the news was good, and the Make-a-Wish Foundation even arranged for Tyler to visit the Daytona 500. But he relapsed after that trip and was hospitalized, and an agonizing battle began. By June 2002 two kinds of leukemia had been diagnosed, and Vicki posted a simple request. “Hey guys,” she typed, “Tyler isn’t doing real well with his treatments right now. The hospital helped us set up a web page for him. Can u drop by and say hi to him?”
We were all shocked, and about a hundred race fans from the “That’s Racin’” board clicked on the URL she provided. It was my, and many other fans’, first introduction to CaringBridge, the web-based social network for families struggling with serious illness. The site provides free web space that families can update with information, pictures, and videos, as well as a guest book where visitors can leave messages of encouragement. It became our, and Vicki’s, lifeline as we followed his struggles, first at a hospital in Syracuse and later in New York City. And she and Tyler’s eleven year-old sister Morgan needed the support. "Our families have been through a lot these past few days," Vicki wrote at the end of June. "We are all in disbelief that there is a chance we may not keep him. I told him that hopefully someday, when we get better, I can take him to another race to see Dale Jr. and Mark Martin. He loves them both. .... I told him that he has a whole world cheering for him out there, and everyone wants to do nice things for him to cheer him on. With all the prayers out there for him, he has to make it."
After that day when Vicki posted the URL on two discussion boards, Tyler’s webpage experienced a viral explosion. Racing fans share news with each other electronically, and Vicki’s request spread from one board to another like lightning. It didn’t matter who the readers’ favorite drivers were; all of them united to try to cheer up a little race fan who was struggling. Between June 20 and the end of July, over 100,000 messages were left for the brave kid from New York. The posters ranged from anonymous “Grandma” and “DaleJrFan” to some of the biggest names in racing—drivers Jeff Gordon, Terry Labonte, Jimmie Johnson, Johnny Benson, and Mike Skinner posted, as did Tony Stewart’s mother, Dale Jr’s sister Kelley Elledge, and team owners Larry McClure, Richard Childress, and Rick Hendrick. Dale Jarrett’s and Mark Martin’s fan clubs relayed messages from their drivers. Members of the New York Yankees and New York Jets also joined the visitors supporting Tyler. Many drivers arranged to send souvenirs, signed pictures, and memorabilia to the family, and when Tyler was transferred to Memorial Sloan-Kettering Cancer Center in New York City, his hero Derek Jeter even visited him there. But most of the visitors were strangers—people who had heard about Tyler from someone else in their network on the Web.
Sadly, Tyler’s leukemia was too virulent to be stopped, and he came home from Sloan-Kettering to Lowville, NY, to spend his last few days. He died on July 21, 2002, his ninth birthday. In a heartbroken post on his Caringbridge page, Vicki said that “Morgan and I are devastated, but in a sense relieved that he is no longer suffering. He went through so much and fought so hard.” Vicki kept the page up for almost fifteen months after Tyler’s death as she worked through the grieving process; when she finally said goodbye, there were over 250,000 messages in that guestbook.
The experience with Tyler and the viral explosion of the community who followed his struggle via the Web made me want to know more about CaringBridge. It was founded in 1997 by Sona Wehring, a web designer from Minnesota, in desperate necessity. “I was trying to have a garage sale, and my phone rang and two very good friends of mine who were expecting a baby were landed in the hospital. She had a life threatening condition, and I instantly became this person that had to let everybody know what’s going on. Daren, the husband called me and said, “Can you let everybody know what’s going on.” I thought why don’t I create a Website to let everybody know what’s going on, and so that’s what I did. The same night their Baby Bridget was born, the first CaringBridge site was born,” she told the podcast series All Together Now in 2005. Sadly, while that first baby didn’t survive, thousands more patients at hospitals all over the country now use the organization she started soon after for the same reason—to reach out to families, friends, and even strangers as they struggle with desperate health situations.
Caringbridge’s services are free to the families and supported entirely by donations; and it has been wildly successful, with over 35,000 sites and more than 200 million visits to them. The interface is very simple—users don’t need any “web expertise” and as a result, families can easily share information with their supporters. Mehring says CaringBridge helps families “better manage the sometimes overwhelming amount of communication necessary to satisfy the concerns of family and friends by giving them a free and private place on the Web to post updates on their condition and receive messages of hope and encouragement." Indeed, the sites provide opportunity for sharing some of the greatest joys and sorrows a family can feel, and for making new friendships across the gulf of cyberspace. Anyone can visit a Caringbridge page and leave a message of kindness and support—and many people do so on a regular basis, whether they know the family or not.
On May 31, 2007, as CaringBridge celebrated its tenth anniversary, Wehring was able to reflect on the success of her improvised solution for families in need. On her blog she wrote, “As CaringBridge turns 10 it is supporting more people in need than ever: every 13 minutes a new CaringBridge site is created; and every single minute 2.5 new visitors register to visit a CaringBridge site; and the last stat I love, every single day CaringBridge sends out 250,000 -- a quarter of a million --notifications -- letting someone know a CaringBridge site has been updated. That 250,000 are real connections being made --- what better use of technology than connecting people.” Whether they are families coping with illness or accident or soldiers coping with war-based injuries (Doonesbury’s B.D. had a site), CaringBridge has become the most frequently used social network among the ill.
In the five years I’ve been following new friends and old through Caringbridge, I’ve seen miracles happen—both in health care and in personal relationships. While many of the families I’ve met and supported have not had happy endings, I’ve also heard stories of incurable cancers going into remission, children in wheelchairs learning to walk again—and even the marriage of the widow of one Caringbridge user to a friend of another Caringbridge user (whom she met on a third Caringbridge family’s website). I’ve made lasting friendships and tenuous ones, held out a virtual hand to people I’ll never meet and been privileged to offer a shoulder to cry on to several families I have met (two here in Rock Hill). I’ve conducted poetry therapy workshops online for grieving families and friends and helped several Caringbridge poets find venues to publish their work. Though fortunately my family has been spared the kind of tragedy that has befallen Caringbridge users, I’ve been blessed to become part of a huge network I would never have known about were it not for Vicki and Tyler.
As Mehring told an interviewer some years ago, “I believe the Internet has a higher calling — helping bring people together at important times, facilitating love and support that is meaningful for all involved, wherever they may be.” The network she has created shows the power of social networking at its best—using the Internet to ease grief, soothe pain, and most importantly, heal hearts.
References
American Forces Press Services. “Fisher House Offers Free Web Sites for Hospital Patients.” 22 Nov. 2007 http://www.defenselink.mil/news/newsarticle.aspx?id=43572.
“Caring Bridge [sic].” St. Elizabeth’s (Lafayette, IN) Regional Health Center. 22 November 2007 http://www.ste.org/DesktopDefault.aspx?tabid=1123.
“CaringBridge: The Next Best Thing to Being There.” All Together Now. Cisco.com Podcast Network. 22 November 2007 www.podtech.net/home/2029/caringbridge-the-next-best-thing-to-being-there.
Cawley, Janet. “Women Working for Change: Sona Mehring, Founder and Executive Director of CaringBridge.” Lifestyle:MSN.com. 22 Nov. 2007 http://lifestyle.msn.com/%20MindBodyandSoul/WomenintheWorld/Article.aspx?cp-documentid=374628.
Mehring, Sona. “Founder’s Blog.” 31 May 2007. 22 November 2007 https://www.caringbridge.org/blog/founderblog.htm.
We were all shocked, and about a hundred race fans from the “That’s Racin’” board clicked on the URL she provided. It was my, and many other fans’, first introduction to CaringBridge, the web-based social network for families struggling with serious illness. The site provides free web space that families can update with information, pictures, and videos, as well as a guest book where visitors can leave messages of encouragement. It became our, and Vicki’s, lifeline as we followed his struggles, first at a hospital in Syracuse and later in New York City. And she and Tyler’s eleven year-old sister Morgan needed the support. "Our families have been through a lot these past few days," Vicki wrote at the end of June. "We are all in disbelief that there is a chance we may not keep him. I told him that hopefully someday, when we get better, I can take him to another race to see Dale Jr. and Mark Martin. He loves them both. .... I told him that he has a whole world cheering for him out there, and everyone wants to do nice things for him to cheer him on. With all the prayers out there for him, he has to make it."
After that day when Vicki posted the URL on two discussion boards, Tyler’s webpage experienced a viral explosion. Racing fans share news with each other electronically, and Vicki’s request spread from one board to another like lightning. It didn’t matter who the readers’ favorite drivers were; all of them united to try to cheer up a little race fan who was struggling. Between June 20 and the end of July, over 100,000 messages were left for the brave kid from New York. The posters ranged from anonymous “Grandma” and “DaleJrFan” to some of the biggest names in racing—drivers Jeff Gordon, Terry Labonte, Jimmie Johnson, Johnny Benson, and Mike Skinner posted, as did Tony Stewart’s mother, Dale Jr’s sister Kelley Elledge, and team owners Larry McClure, Richard Childress, and Rick Hendrick. Dale Jarrett’s and Mark Martin’s fan clubs relayed messages from their drivers. Members of the New York Yankees and New York Jets also joined the visitors supporting Tyler. Many drivers arranged to send souvenirs, signed pictures, and memorabilia to the family, and when Tyler was transferred to Memorial Sloan-Kettering Cancer Center in New York City, his hero Derek Jeter even visited him there. But most of the visitors were strangers—people who had heard about Tyler from someone else in their network on the Web.
Sadly, Tyler’s leukemia was too virulent to be stopped, and he came home from Sloan-Kettering to Lowville, NY, to spend his last few days. He died on July 21, 2002, his ninth birthday. In a heartbroken post on his Caringbridge page, Vicki said that “Morgan and I are devastated, but in a sense relieved that he is no longer suffering. He went through so much and fought so hard.” Vicki kept the page up for almost fifteen months after Tyler’s death as she worked through the grieving process; when she finally said goodbye, there were over 250,000 messages in that guestbook.
The experience with Tyler and the viral explosion of the community who followed his struggle via the Web made me want to know more about CaringBridge. It was founded in 1997 by Sona Wehring, a web designer from Minnesota, in desperate necessity. “I was trying to have a garage sale, and my phone rang and two very good friends of mine who were expecting a baby were landed in the hospital. She had a life threatening condition, and I instantly became this person that had to let everybody know what’s going on. Daren, the husband called me and said, “Can you let everybody know what’s going on.” I thought why don’t I create a Website to let everybody know what’s going on, and so that’s what I did. The same night their Baby Bridget was born, the first CaringBridge site was born,” she told the podcast series All Together Now in 2005. Sadly, while that first baby didn’t survive, thousands more patients at hospitals all over the country now use the organization she started soon after for the same reason—to reach out to families, friends, and even strangers as they struggle with desperate health situations.
Caringbridge’s services are free to the families and supported entirely by donations; and it has been wildly successful, with over 35,000 sites and more than 200 million visits to them. The interface is very simple—users don’t need any “web expertise” and as a result, families can easily share information with their supporters. Mehring says CaringBridge helps families “better manage the sometimes overwhelming amount of communication necessary to satisfy the concerns of family and friends by giving them a free and private place on the Web to post updates on their condition and receive messages of hope and encouragement." Indeed, the sites provide opportunity for sharing some of the greatest joys and sorrows a family can feel, and for making new friendships across the gulf of cyberspace. Anyone can visit a Caringbridge page and leave a message of kindness and support—and many people do so on a regular basis, whether they know the family or not.
On May 31, 2007, as CaringBridge celebrated its tenth anniversary, Wehring was able to reflect on the success of her improvised solution for families in need. On her blog she wrote, “As CaringBridge turns 10 it is supporting more people in need than ever: every 13 minutes a new CaringBridge site is created; and every single minute 2.5 new visitors register to visit a CaringBridge site; and the last stat I love, every single day CaringBridge sends out 250,000 -- a quarter of a million --notifications -- letting someone know a CaringBridge site has been updated. That 250,000 are real connections being made --- what better use of technology than connecting people.” Whether they are families coping with illness or accident or soldiers coping with war-based injuries (Doonesbury’s B.D. had a site), CaringBridge has become the most frequently used social network among the ill.
In the five years I’ve been following new friends and old through Caringbridge, I’ve seen miracles happen—both in health care and in personal relationships. While many of the families I’ve met and supported have not had happy endings, I’ve also heard stories of incurable cancers going into remission, children in wheelchairs learning to walk again—and even the marriage of the widow of one Caringbridge user to a friend of another Caringbridge user (whom she met on a third Caringbridge family’s website). I’ve made lasting friendships and tenuous ones, held out a virtual hand to people I’ll never meet and been privileged to offer a shoulder to cry on to several families I have met (two here in Rock Hill). I’ve conducted poetry therapy workshops online for grieving families and friends and helped several Caringbridge poets find venues to publish their work. Though fortunately my family has been spared the kind of tragedy that has befallen Caringbridge users, I’ve been blessed to become part of a huge network I would never have known about were it not for Vicki and Tyler.
As Mehring told an interviewer some years ago, “I believe the Internet has a higher calling — helping bring people together at important times, facilitating love and support that is meaningful for all involved, wherever they may be.” The network she has created shows the power of social networking at its best—using the Internet to ease grief, soothe pain, and most importantly, heal hearts.
References
American Forces Press Services. “Fisher House Offers Free Web Sites for Hospital Patients.” 22 Nov. 2007 http://www.defenselink.mil/news/newsarticle.aspx?id=43572.
“Caring Bridge [sic].” St. Elizabeth’s (Lafayette, IN) Regional Health Center. 22 November 2007 http://www.ste.org/DesktopDefault.aspx?tabid=1123.
“CaringBridge: The Next Best Thing to Being There.” All Together Now. Cisco.com Podcast Network. 22 November 2007 www.podtech.net/home/2029/caringbridge-the-next-best-thing-to-being-there.
Cawley, Janet. “Women Working for Change: Sona Mehring, Founder and Executive Director of CaringBridge.” Lifestyle:MSN.com. 22 Nov. 2007 http://lifestyle.msn.com/%20MindBodyandSoul/WomenintheWorld/Article.aspx?cp-documentid=374628.
Mehring, Sona. “Founder’s Blog.” 31 May 2007. 22 November 2007 https://www.caringbridge.org/blog/founderblog.htm.
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