A family tragedy, a public forum

Internet provides support for loved ones during illness, sympathy when worst happensfamilytragedy2

(This story ran on Sunday’s A1.)

By Raquel Maria Dillon | THE PRESS DEMOCRAT

In the early-morning hours, as his son was waging what would be a fatal fight with meningitis, Greg Fogg would leave his son’s San Francisco hospital room and sit down before a computer screen.

“I’d be up in the middle of the night on the computer in the hospital cafeteria,” he said. “You can’t sleep because you’re worried about tomorrow’s surgery, so you go downstairs and read the Web site.”

Now, two weeks after 15-year-old Garrett Fogg’s death, his father still gets up at 2 a.m. to check garrettfogg.com and the more than 1,330 messages of support that continue to grow in number.What began as a practical way to communicate with family members and friends soon became a vital connection and emotional support for the family. It’s a connection becoming more common as individuals, private companies and even hospitals offer the Internet as a way not only to communicate a loved one’s condition, but to cope.

“In the beginning, it was hard for me to talk on the phone,” said Lisa Fogg, Garrett’s mother. “I called a couple of people, and every time I fell apart.”

The Web site allowed the Foggs to not only communicate with family and friends, but also learn more about their son, a Maria Carrillo High School student who competed in track, soccer and wrestling.

“They get glimpses of a loved one that they might not otherwise see,” said Patty Lyons, a bereavement counselor with Memorial Hospice in Santa Rosa. They learn about their friends and their interests by reading the comments posted on the Web site.

“There was a comment from a person who heard about it through an online WeightWatchers group, and I thought it was weird but cool to see how word got around,” said Garrett’s 17-year-old sister, Leanne.

Leanne said the site helped her to keep her focus on taking the SAT and running in a track meet. But when people in the grocery store asked about her brother, she was surprised they knew the details of his treatment.

“They’d be talking about his breathing tube and I would say, how do you know about that? I gradually realized how public his situation was, and how many people cared.”

Janet Morahan-Martin, a professor of psychology at Bryant University in Rhode Island, said researchers who study how people interact online call this quality “hyper-intimacy.”

“What’s amazing is that people can reveal more online. People feel this intimacy is real. They feel anonymous, so they don’t feel weak when they talk about grief.”

These Web sites set up in an emergency are “a newfangled ritual” to recognize death, said Lyons.

“There’s an unspoken rule in our culture that we don’t talk about this stuff – illness and death. But intuitively, we know we should, and our impulse is to talk.”

The benefits extend from the family to the community.

“I’m grateful to the Foggs for sharing this with us,” said Garrett’s friend Jake Orgish, 16. “They didn’t keep any facts from us. People knew and were prepared for what was happening.”

Some experts caution that Internet communication is no substitute for physically being there for someone in need, and when communication isn’t face-to-face, intimacy is lost.

“Once someone gets sick, there can be very real needs, practical and emotional,” said Judi Hampshire, who teaches grief counseling at UC Berkeley’s Extension Service. “This isn’t the same as a person coming to the door to hold hands and hug.”

A friend of the Foggs built the Web site for Garrett, but families don’t have to be tech-savvy to reach out to friends and the community.

CaringBridge.org and carepages.com provide free Web-hosting templates for patient pages and let users control access to their sites.

The Web sites become “a therapeutic journal for the author – usually a family member or the primary caregiver – to talk about what’s happening, tell people what’s going on, and how they’re dealing with things,” said Sona Mehring, CaringBridge founder.

The site hosts 40,000 individual patient pages. The nonprofit group has a $1.6 million budget provided by individual donations and hospitals’ sponsorship fees.

Carepages also has partnerships with hospitals and gets income from advertisements. The site hosts almost 50,000 patient pages, and has tripled in size in the past year.

Web sites set up during a crisis sometimes grow and change, from providing emotional support to providing more practical answers on the long road of rehabilitation, years after the initial debilitating accident or cancer diagnosis.

“When you get a terminal diagnosis, everyone’s calling from across the country,” said Kate Burke, a Santa Rosa mother who had a CaringBridge Web page during her treatment for a brain tumor.

“My friends said, I can totally hear you talking on your Web site,” she said.

Burke’s page evolved into a blog about her battle with cancer. She said she gets calls and e-mails every day from people looking for hope and advice.

“I never edited what I wrote. I’m a strong Christian, so I felt like I’d just get spirit-filled and let God take care of it. I figure God’s left me here to help other people.”

When Kate Douglas set up a Web site for her son’s friend, Ross Dillon, she never imagined how much such a simple thing could help. Dillon was injured in 2002 when he was hit by a car while cycling on Occidental Road.

Through RossDillon.com, a brain injury specialist and physical therapists volunteered their services.

“I got word out through contacts with cyclists, and we used it and milked it,” said Douglas.

Four years later, Dillon is regaining his speech and learning to walk again. The family credits the Web donors for helping to fund their son’s care, which cost $117,000 last year.

Dillon’s mother, Betsy, still sends updates at least once a week, and Douglas posts them.

Garrett Fogg’s Web site has logged more than 22,000 “hits,” or individual visits. Expressions have come from best friends living nearby, but also from well-wishers as far away as Iceland.

“I’d read the Web site, and everyone there was full of hope,” Garrett’s father said. “In the end, the doctors were correct, it didn’t change the outcome. But it helped the journey.”