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Connect
with friends in times of serious illness June
15, 2008 Julia McCarthy nonchalantly clicks through a photo gallery on her Web page on CaringBridge.org. In the gallery, there are photos of the soon-to-be 6-year-old with her family and photos documenting the past couple of months, before and after her surgery to remove a brain tumor, which turned out to be benign. Julia knows three things about the whole ordeal: She had bad headaches, the doctors removed her tumor, and now she feels better and can return to school in Indialantic, Fla. For her parents, the short period of time seemed more complicated and emotionally trying. Something that helped them through it was Julia's CaringBridge Web page, which allows families to keep relatives and friends updated when someone is ill or is experiencing any kind of health crisis. "Julia was diagnosed with the tumor on a Saturday morning, and I guess it was Saturday night, I went and checked my e-mails, and we had over 100 e-mails from friends and family wanting to know what they could do," says Brendan McCarthy, Julia's father. "It was nice, but it was overwhelming." Sites such as CaringBridge allow folks to set up free Web pages featuring a journal, a place to post photos and a guest book where visitors can write messages. Site managers can post updates on the page and select a setting that sends a mass e-mail to loved ones when updates are available. "You want to let everybody know how your child's doing, but it would have been impossible to call and e-mail everybody," McCarthy says. CaringBridge.org was founded in 1997, and more than 100,000 personal pages have been created since. A similar service, CarePages.com, was created in 2000, and also hosts more than 100,000 free pages. There are also numerous hospitals that offer Web services for seriously ill patients, and many patients choose to create their own. It's a growing practice that Sona Mehring, founder of CaringBridge, calls "compassion technology." "I really felt that being able to show technology in a way that was very positive was something important to do," says Mehring, who came up with the concept of CaringBridge after a friend's child was born prematurely. Easy for all CaringBridge and CarePages have experienced tremendous growth in recent years, the founders say, partly because communication via the Internet isn't considered as cold and impersonal as it used to be. And it doesn't take a genius to set up one of these pages. "We've had a lot of people e-mail us over the years saying the first time they used the Internet is to go onto a CarePages site," says Sharon Langshur, who founded CarePages with her husband, Eric, after her brother set up a Web site for her son, Matthew. Matthew was born with a congenital heart problem. "We said, 'This is something we've got to make available to other people,' " Langshur says. CarePages and CaringBridge pages take less than 10 minutes to set up, and anyone can manage them -- the patient, the caregiver, a family member or a friend of someone with a serious illness. The sites can stay up as long as needed and can be updated anytime. CaringBridge and CarePages are open to people of all ages and situations. Camille Odom of Palm Bay, Fla., set up a CarePages site for her husband in April. Ray Odom, who is receiving treatment for leukemia, is able to read notes from friends and family. "A friend can go in and say, 'Hey Ray, how's it going?' and words of encouragement are always good," Camille Odom says. Extra features The "compassion technology" sites have simple designs to make them user-friendly, but they also offer a few extras. CarePages, for instance, features a search engine that allows users to find other users around the world who are facing the same situations. This provides a kind of support that family members can't always offer, Langshur says. The sites also feature tips for dealing with illness, donation links to help keep the sites running and tools to let friends know about the services. Privacy Although there are free Web sites that allow folks to set up personal pages, what sets CaringBridge and CarePages apart is the ability to prevent unwanted visitors and comments. On CaringBridge.org, users can choose from a few levels of privacy. No matter what, none of the pages can be found through a search engine, Mehring says. The same is true for CarePages.com and, if users prefer, they can select a setting that allows them to screen visitors before they can view the site and post comments. Powerful stories While Internet communication will never be the same as physical presence when it comes to helping a family in a difficult situation, health crisis Web sites might be the next best thing. In some cases, the pages have helped give patients hope and a will to live, Mehring says. She often tells the story of one woman from upstate New York who called CaringBridge in 1999 to say "thank you" for saving her husband's life. "Her husband was very much not fighting the fight, wallowing in despair and really giving up," Mehring says. "But she had him connect to his family and friends through CaringBridge, and she instantly saw a change." http://www.courier-journal.com/apps/pbcs.dll/article?AID=/20080615/FEATURES/806150309 |
