CaringBridge site keeps loved ones in the loop during health crisesST. PAUL – Phil Brandt is not the kind to burden his friends and family members with his problems. So when he was diagnosed with cancer in 2008, he figured he and wife, Rollie, would deal with the situation largely in private.
By: Julio Ojeda-Zapata, St. Paul Pioneer Press, INFORUM
ST. PAUL – Phil Brandt is not the kind to burden his friends and family members with his problems. So when he was diagnosed with cancer in 2008, he figured he and wife, Rollie, would deal with the situation largely in private.
Think again, said his daughter, Heidi Panelli. “You’re getting a CaringBridge site,” Brandt recalls being told.
A what? A master carpenter by training, Brandt was not all that handy with computers and had scant use for the Internet. He had to be educated about Minnesota-based CaringBridge.
The social network, created in 1997, allows sick people or their loved ones to set up free journal- or blog-like sites to keep friends and family in the loop, and to receive words of support when the gestures are needed the most.
Brandt got those on his CaringBridge site’s guestbook and then some.
“When you first go in the hospital, you feel kind of alone,” he recalled. “But when I started getting those messages, oh, my goodness, it was like people were coming out of the woodwork. It really lifts your spirits because it lets you know people care about you.”
CaringBridge, founded before “social network” was used in any online context, has grown into an Internet institution because it’s so effective at knitting together the ill and the folks they know into intimate and uplifting circles of support.
CaringBridge users’ sites also have a practical purpose: They minimize the time and effort such people have to spend keeping others up to date, since quick site updates via desktop computers or mobile devices can take the place of repeated, time-devouring phone calls, e-mails and texts.
“It was so nice to notify everybody in a heartbeat,” Brandt said.
Eagan-based CaringBridge saw its visibility spike not long ago with the news that the estate of a Minnesota couple, Roger and Hazel Perkins, had made the largest-ever donation to the nonprofit organization.
“This was gifted as an endowment, so it is not a big influx of cash, but it does establish a legacy of giving for others who want to participate,” according to CaringBridge founder Sona Mehring. It is “something to build on,” she stressed.
Mehring, a onetime Web-site developer, created CaringBridge out of personal need. One of her friends gave birth prematurely to a baby in precarious condition and she asked Mehring to “call everyone,” she recalled.
“Instead of making the calls, I turned to my background,” Mehring said. “The first CaringBridge site,” a rough, manually coded affair with a basic digital-guestbook feature, “was born that night.”
The work of CaringBridge continued.
“I already had a consulting business, so it was a natural extension to offer this service,” Mehring said. “Instead of creating websites for plumbers, I could apply my passion for technology to get people connected with each other on a deep emotional level. It was the perfect, compassionate use of technology.”
When her mom was diagnosed with breast cancer in 1998 and moved into her east-metro home, Mehring naturally set up a CaringBridge site.
“Mom loved it,” Mehring recalled. “She was not very tech-savvy, and was amazed when people wrote in. I still get goosebumps seeing the impact of the site on my mom’s face.”
The woman’s cancer went into remission, but it rematerialized in 2001, and her site “became an end-of-life story,” Mehring said.
This is no less powerful, she believes. Such sites are not deleted if their subjects pass on. They become treasured memorials for relatives and friends.
Natalie Bushaw, the Eagan mother of 8-year-old twins who were beset with health issues in the womb and all of their lives, has turned to CaringBridge again and again for emotional and spiritual support.
One boy, Logan, recovered “badly” from open-heart surgery in 2006, spiraling into kidney failure and a collapsed lung that left the boy “gasping for air,” Bushaw recalled. His heart needed to be shocked back into a normal rhythm with electrical paddles.
“I’ve never been so scared,” said Bushaw, who remembers frantic typing on a hospital terminal as she begged for support on CaringBridge.
“Oh, the posts that came back from people,” she said. “They were like an army of people helping to keep us strong in those dark, dark days.”
Many CaringBridge users are repeat customers, setting up multiple sites as health problems arise in their families.
Bill Heyman of Eden Prairie created one site when his wife, Jodi, fought breast cancer resulting in a double mastectomy, and set up another for himself a year ago to keep friends and family up to date on his recurring battle with skin cancer.
Heyman, a mobile-device app developer who is far more tech-adept than a typical CaringBridge user, said he would have had little trouble setting up his own health-update blogs for himself and for his wife. He’s glad CaringBridge has saved him the trouble, though.
“And the price is right,” he added.
Heidi Panelli, the daughter of Phil and Rollie Brandt, also has seen CaringBridge used again and again in the family. Her brother and her 3-year-old daughter each had sites when they underwent open-heart surgeries at different times.
After setting up a CaringBridge site for her dad in 2008, Panelli turned it over to her computer-hip mom, who plied her bedridden partner with printouts from the guestbook.
“That was the highlight of his day,” Rollie Brandt recalled, before her husband’s cancer went into remission.
He is in treatment again, and this time is better prepared, now that he has learned to use a laptop and can get to CaringBridge all by his lonesome. His computer “is right in bed with me,” he said.