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July 25, 1997

Digital Nation

Virtual Communities Help
In Sharing Pain of an Illness

It was last March, on a family ski trip with a church group, that Paul O'Rear's daughter, Ashley, began to show symptoms that something was seriously wrong.

Ashley O'Rear, from the site her father produced for her

Ashley, then 9, had been feeling nauseated and had been vomiting occasionally for several weeks, but the family had assumed it was a bug going around school. When a doctor in Colorado diagnosed a serious bladder infection and began a course of antibiotics, the family felt assured that the girl was on the road to recovery.

But the next day, on the trip home to Waxahachie, Tex., her condition worsened and she began complaining of double vision. Finally a doctor in Texas found the source of Ashley's problems: a tumor partially attached to the brain stem.

Shortly after his daughter underwent surgery -- which removed 95 percent of the tumor -- O'Rear decided he wanted to get the word out to family and friends that Ashley was sick. So he fired off a couple of dozen e-mail messages and suggested that the recipients forward them to friends, asking that they pray for Ashley. In a matter of months, O'Rear had a mailing list of about 500 names of people asking for updates on Ashley's condition.

Through the grueling, ongoing course of radiation therapy, and now chemotherapy, O'Rear, a 34-year-old native Texan and Church of Christ youth minister, has regularly posted updates on his daughter's condition, minutely detailing the surreal mixture of illness, treatment and everyday life that has become commonplace for families struggling with cancer or some other serious illness.

On some nights O'Rear would drive the 35 miles from the hospital in Dallas to his home in Waxahachie just to compose, mail and post an update.

"It really does serve as a source of therapy for me," he admitted.

And it continues to serve as a source of therapy for Ashley as well. During the course of her radiation treatments, the family would drive back and forth from Dallas daily. At night O'Rear would download the day's e-mail and correspond with his virtual support community. And in the morning, on the ride to the hospital, O'Rear's wife, Susan, would read the e-mail messages to Ashley.

"It really became a highlight of the day," O'Rear said.

The family keeps five spiral-bound volumes of e-mail messages from well-wishers in the house, and through their Internet outreach, Ashley has received presents, pictures and notes from other cancer patients, many of them teen-agers.

It turns out O'Rear and his family are not alone. Across the Net, children, parents, adult patients and families have created journals of illness, treatment, recovery and sometimes death, often richly detailed. Without fanfare, offline promotion, or search-engine indexing, these sites often draw a crowd of well-wishers who post prayers, messages of support, poems, sometimes even music composed to cheer and bolster the spirits of the ill.

It's a remarkably public sharing of private experiences, suggesting that traditional support roles of geographic communities are being replaced, or at least augmented, by virtual communities.

"When you boil it down," O'Rear said, "it has nothing to do with technology, and it has everything to do with community. It's people caring about people."

The site O'Rear produced for his daughter is now part of the Sick Kids Webring, a loose amalgam of sites devoted to children suffering from a variety of maladies. Among the most remarkable is A Page for Cancer Kids by a CancerKid. It was built by Julia Christina Rosetti, an 18-year-old girl from Queensland, Australia, who died last December from leukemia.

Julia's site, which her family has kept the site going as a testament, is full of cancer and leukemia resource information and offers a page of photos and links to sites created by other sick children. It also bubbles over with a kind of eerie enthusiasm.

"I'm a real person, a regular teen-ager who likes to do regular things, just like any other 18-year-old," Julia wrote. "I get excited about the same things, and sad about the same things. I like to talk with my friends, go shopping and watch bad soap operas, just like most other 18-year olds. I guess my point is, I have cancer, but cancer doesn't have me."

When a click on a sick kids' Web page returns a "document not found at this server" error message, it can leave a surfer with a queasy feeling, a sense that perhaps the course of the child's illness has taken a turn for the worse, giving a sickeningly new meaning to the phrase "ghost site." But for families and sick people, the sites help stand as a kind of virtual monument or testament.

"The technology has become a major piece of this whole story for us," said O'Rear. "It has done probably more for us than we realize."

The need to lament -- to share grief, fear and worry with a community of supporters -- is as primal as the need for food and water, as ancient as the Book of Job. But unlike the kind of publicly shared grief that attends the death or illness of celebrities or politicians or other distant figures, grief shared online creates real communication among suffers and supporters.

"It even has made me realize more than I did before how important technology really is," said O'Rear. "When you put it to good use it becomes a tool to bring out the good in people."

DIGITAL NATION is published weekly, on Fridays.

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(c) 1997 The New York Times Company. Reprinted with permission.