Mourners find sanctuary in cyberspace

During Jay Koontz’s final days, as his brain tumor slowed his breathing, his wife sat at his bedside and read him notes that had been posted on his website.

She had established the site to provide updates on Jay’s condition -- having found the grind of e-mailing news to family and friends overwhelming. She also provided a spot for people to leave words of encouragement.

“I tell him your messages, and he squeezes my hand to let me know that he has heard,” his wife, Mary Catherine Cochran, wrote on the site the day before he died.

The Internet has revolutionized the way we work, shop and fall in love. Now it is changing the way people prepare for and mourn death.

Websites that provide real-time health updates, like Koontz’s, have grown more common since a pioneering blog documented the final days of counterculture guru Timothy Leary in 1996.

Sophisticated memorials, too, have popped up on the Web featuring video montages, Web casts of funerals, even automated e-mail and audio messages prepared by the terminally ill for distribution after death.

Cyberspace is filled with so many deceased teenagers’ MySpace.com pages that a young San Francisco entrepreneur catalogs them on www.mydeathspace.com. And the New York Times recently began posting video obituaries of luminaries online.

For some, memorial sites are a way to preserve a loved one’s life story and social network in perpetuity. Others use them to address messages directly to the deceased.

“None of us want our kids to be forgotten, and that’s the biggest thing,” said Rose Palmer, 50, whose son Bryan died in 2004 at age 12. Doctors suspect it was a heart arrhythmia.

She regularly writes to him on his memorial page on Legacy.com.

“It has been a blessing to write and read, to be reminded that he did exist, that he was here,” she said.

After Tara Howard died in a Maryland car accident in January 2006, a classmate at Marymount University built a memorial for her on MySpace.com.

Friends submitted dozens of pictures, which scroll across the page.

A friend of Tara’s from high school, Laura Neugebauer, used the memorial and another one on Facebook.com to recruit Tara’s friends to serve a meal to homeless people at Baltimore’s St. Vincent de Paul Roman Catholic Church and mark the one-year anniversary of her death.

Tara had volunteered to serve meals to the homeless every third Sunday. More than 60 friends and relatives responded to the online request for volunteers.

“I use those sites to keep in touch with her friends,” said Neugebauer, 19, a student at St. Francis University who attended high school with Tara at Mount de Sales Academy in Catonsville, Md.

Memorial websites, either created by individuals or hosted by companies and funeral homes, are extensions of roadside crosses and cemetery headstones. But mourning on the Internet can occur anywhere at any time and captures more than a person’s name and dates of birth and death. The sites reveal what happened in between, in poignant detail.

“When there is a loss in their life, young people in particular almost instinctively go online and either look for memorial sites that already exist or create ones,” said Lee Rainie, director of the Pew Center Internet & American Life Project. “We’re living in a world where it is effortless to create massive digital libraries of ourselves and the people we care about.”

After Cochran’s online announcement of her husband’s death in January 2003 at age 45, 10 or more condolences a day arrived on the site’s guestbook, including one from Vonda Evans of Springfield, Ore., whose 24-year-old daughter was also fighting a brain tumor.

“Although I do not know any of you personally, I feel I do,” Evans wrote. “I have been watching Jay’s progress all along and wish to express my condolences.”

The site “made our journey with Kyla a little less frightening,” said Evans, who established a website, kylanagel.com, for her daughter, who died in August. “The unknown is the biggest fear we had. It helped to be able to log in and see that other people were going through what we were.”

Cochran, who directs the Claudia Mayer Cancer Resource and Image Center at Howard County General Hospital, recommends the company that hosted the “Team Jay” website, caringbridge.org, to other people fighting cancer.

Although the Internet is a public forum, Cochran said that the site offered her family privacy.

At first, she tried to keep everyone updated on Jay’s health by sending e-mails to friends and relatives several times a week. But that became too cumbersome and, she worried, too intrusive. No one wanted to receive such emotional news on a computer while at work, she said.

By posting the information on the Web, she allowed people to visit and write at their leisure. Most important, it reduced the number of phone calls the family received as their children, then ages 17, 14 and 9, tried to spend as much time as possible with their father, who was a district sales manager for Sun Microsystems.

“People think of the Internet as a billboard, where everything is open to everyone,” Cochran said. “For people who knew Jay, his site really wasn’t. It was like a little room off of the side of the highway where you could stop in. I don’t know if it’s still that way. Four years is a long time in Internet time.”

The Team Jay site remains online but is inactive. After his death, the family password protected it. A relative downloaded the messages and pasted them into a scrapbook for the family.

Some expect Web memorials to stay online longer. More than 730 messages have been posted on Ashley Bobovsky’s memorial site on Legacy.com since her death in March 2003.

The 15-year-old aspiring ballet dancer died from brain stem injuries suffered in a car accident on her way school. She was belted in the front seat of a friend’s car when it hit a tree.

The website, as well as two others created by Ashley’s friends, has been especially important to her mother, Laurel Perkins, who moved to Tennessee after she remarried in 2001. Perkins has used the Legacy.com guestbook to keep in touch with Ashley’s friends in Maryland.

“The site will be up as long as I live, and it will probably go beyond me,” she said. “There has been a lot of ups and downs for me being this far away from everybody. Legacy has been my link to life. Literally, my link to Ashley, my link to all of her friends and people who cared about her.”

Perkins and Ashley’s friends post messages on the site as if she were alive: “Ash, I quit dance for this year. I can’t believe I did it but I had to,” wrote one friend in November 2003.

The Bobovsky and Palmer families purchased the Legacy.com sites through the Baltimore Sun, along with an obituary in the newspaper.

Funeral homes also sell websites through mem.com or host them for free.

“It’s more of a genuinely novel application of the technology” than simply selling funeral services online, said David A. Kirsch, an assistant professor of entrepreneurship at the University of Maryland business school. “It’s not just an alternate channel of doing things we’re already doing, but it’s enhancing the social network in which we participate.”

Paul Saffo, a California-based technology forecaster and writer, said this trend will progress in ways that seem strange and impossible today.

Using artificial intelligence, people will be able to create “virtual ghosts” of their loved ones -- computer programs that actually engage in conversation.

Computers will be able to capture a deceased person’s mannerisms, accents and a bit of their personality by monitoring their behavior while they’re alive, he said.

For the Cochran family, however, the online experience was about living in the present, not the past, and creating a meaningful way for people to communicate with Jay while he was alive.

“In some ways, writing their feelings in an online guestbook is easier for people,” Cochran said. “It certainly was wonderful for Jay to hear that love in his final days.”