How blogging sites are helping people cope with illness
By Linda L. Esterson
Special to the Jewish Times
While her father fought esophageal cancer, Debbie Scurnick Block listened as her mother repeated stories about his condition over and over again to countless friends and family members. The phone, she says, “rang off the hook.”
It was then in late 2007 that Block decided to start a health blog through CaringBridge, a Web site hosting health blogs for patients and family members desiring to communicate. Block had learned about the blog from a friend who had used it to keep people abreast of her 11-year-old daughter’s fight with leukemia.
“I did it so she wouldn’t have to repeat the story,” says Block, who grew up in Randallstown and now lives in Boca Raton, Fla. “We have friends and relatives all over the country. We could keep everyone up to date with what was happening.”
CaringBridge enabled Block to keep a journal of her father’s journey and she provided much detail, which not only kept their friends abreast of his condition, but served as an online medical journal they could access and refer to for future use.
To use CaringBridge and other similar sites such as CarePages, creators of the blog post updates on the site as often as they like. Family and friends can subscribe to the individual’s blog, free of charge, so that they can remain abreast of what’s going on. Like the social networking site Facebook, when these updates are posted, subscribers are sent e-mails alerting them of the new information. Subscribers also may send messages to the patient and family members through the site.
“My dad loved reading messages and having the messages read to him,” says Block. “He was thankful for all of the love and support.”
Block’s last entry was June 24, 2009, just a day after Melvin Scurnick passed away. He was 72-years-old.
The blog also gave Marian Scurnick and her children an opportunity to thank friends and family members for their support. In addition, Block used it to encourage subscribers to care for their own health and to educate them about esophageal cancer.
“It provides ease of communication during a difficult time,” says David Blocke, regional manager of CarePages. “It could be the most difficult thing they’ve gone through in their lives.”
Through the CaringBridge, Block also gave her friend Mindy Mintz Mordecai a plug. Mordecai had herself used CarePages to chronicle her husband Monte’s fight with esophageal cancer. His illness prompted Mordecai to form a nonprofit organization, the Esophageal Cancer Action Network, which continues to be promoted through CarePages.
Following Monte Mordecai’s diagnosis in April 2007, his wife initially sent e-mails to friends and relatives. She, too, dealt with never-ending phone calls from family all over the country and friends and members of the Krieger Schechter Day School community, where their two daughters attend school.
“Between the phone and e-mail, I was exhausted,” says Mordecai. “That didn’t include the rest — figuring out what to do and taking care of the kids.”
Every time she took the girls to school, people would ask about Monte. A friend of hers suggested CarePages and Mordecai began posting nightly. Friends told her the first order of the day was to log on to the site and find out about Monte.
For Mordecai, the health blog not only gave her an opportunity to chronicle the ups and downs of dealing with her husband’s cancer, but also it became cathartic for her.
“It gave me the opportunity to reflect on the day,” she says. “After you go through things in life, through the things the illness does to you, you need the chance to take a deep breath and put it in perspective. I was able to reflect on the meaning of all of this and the feelings we had.”
CarePages also gave the community a forum for acting. Through the site, community members organized meals for the Mordecais and rides for Monte to work or to treatments.
“It was heartwarming that they reached out and did so much to help our family,” Mordecai says. When she thanked them, they thanked her for teaching them and their children how to live through “the most horrible experience you can imagine with grace and come out okay on the other side.”
“Everyone was on the journey with us through the CarePages,” says Mordecai. “They experienced a lot of what we experienced.”
CarePages enabled Monte’s high school friends from all over the country to keep abreast and ultimately come to visit as he was dying. “They never would have been able to communicate if it weren’t for the CarePages,” recalls Mordecai.
Monte passed away in March 2008, but Mordecai continues to update his CarePage every few months, letting friends and family members know the girls are okay and their lives are becoming more stable and “relatively” normal.
CarePages was established in 2001. Today, more than 130,000 personalized CarePages exist with more than 4 million members viewing them. CarePages provides private labeled CarePages Web sites in partnership with healthcare organizations like Sinai Hospital of Baltimore and Levindale Hebrew Geriatric Hospital, as well as other regional facilities like the National Institute of Health, Children’s National Medical Center, Carroll Hospice and Inova.
Sinai has 12,000 registered users who visit sites of primarily cancer and limb lengthening patients. “It’s used by patients with more serious, potentially chronic conditions that are longer in nature,” says Robin Evers, director of guest relations and volunteer services at Sinai. “It not only keeps people informed but it creates a community for you when you’re going through a difficult time. It helps with patient morale and family morale so they know they are not alone when facing a difficult health issue.”
Sinai provides wireless internet access throughout the hospital, enabling patients and their family members to utilize CarePages. The hospital’s department of volunteer services also provides laptops for patient use.
“They can connect with people going through the same situation at the Mayo Clinic, UCLA or Sloane Kettering,” says Blocke. “It’s a way to communicate around the globe … to leverage wisdom of the masses.”