Reaching out
Having accepted the idea that her cane probably had become a permanent accessory, Guerry says she became more open about her illness; suddenly, it seemed, people with MS were everywhere. “I knew Sam for five years before I knew she had MS,” says Kevin McGloon, then a neighbor of the Guerrys. When he spotted Guerry walking with a crutch one day, he asked what had happened and then confided that he also had MS. McGloon clearly recalls the date of his own diagnosis: Friday, May 13, 1994. Like Guerry, he left the doctor’s office and researched the disease on his own. “It all looked so dire,” he says. To make matters worse, he had a date a few days later with a woman he’d been interested in for a long time. Kate, now his wife, took the news in stride. But apart from sharing it with family, McGloon says, “MS was, for a long time, my biggest secret.”
Often, Guerry says, an acquaintance would call to ask whether it would be OK to pass along her phone number to a newly diagnosed friend or relative. That was how she met Air National Guard Lt. Col. Bobbi Doorenbos, whose MS diagnosis nearly five years ago meant, Doorenbos says, that she had to “stop flying planes and start flying a desk at the Pentagon.” Before meeting Guerry for lunch, Doorenbos says, “I didn’t know anyone else with MS and had nobody to talk to.” Her symptoms, which include numbness and weakness in her hands, make her illness unnoticeable to others, she says, “but I always know it’s there.”
Although Guerry says she was always happy to talk to and encourage newly diagnosed MS patients, she realized there was a need for a reliable, straightforward and hopeful source of information about the disease. “The Web is where people go for medical information now,” she says, adding that a Google search of “multiple sclerosis” produces millions of results. “You’re going to be overwhelmed,” Guerry says. “You’re going to be bombarded with clinical information, and some of it is very old, or inaccurate, or just somebody’s opinion. You also see a lot of wheelchairs, real horror stories, which is not necessarily what you need to see on that first day.”
Guerry mentioned the idea to her neurologist, Dr. Carlo Tornatore, who directs The MS Center at Georgetown University Hospital, and he readily agreed to join the board of TurnFirst.org, a Web site that addresses everything from what to do after being diagnosed with MS (soothing baths and chocolate are recommended) to reports on developments in treatments and stem cell research.
“Carlo is a wonderful doctor who will really sit down and talk with patients, but there’s this wah-wah-wah sound that goes on after you hear ‘multiple sclerosis,’ so he liked the idea of having a place where you could go over the information later,” Guerry says. Tornatore and neurologist Heidi Crayton, medical director of the MS Center of Greater Washington in Vienna, Va., have contributed articles to the site.
TurnFirst.org also devotes considerable space to how and when to share the news with co-workers and friends, and how to handle inquisitive strangers and disconcerting questions like, “Are you going to die?”
Asked how it’s best to respond to news that an acquaintance has MS, Guerry says, “It’s important to take your cues from the person. If they’re taking the fairly brave step of opening up, you should maybe take the time to indicate that you heard. If you know them really well, ask if there’s something you could do to help them.” One of the nicest responses she ever received, she says, was from a fellow kayaker she knew only slightly. “He said, ‘I don’t really know what to say, but could I give you a hug?’ ”
“I tell my patients that [TurnFirst.org] is the only site they’re allowed to go to,” Crayton says. “Samantha’s a very upbeat, positive person, and she’s really done something for the greater good.”
Guerry says she hopes TurnFirst eventually will serve as a model for Web sites that focus on other diseases, such as cancer. As the years have passed, she says, a growing number of her friends have faced health crises of their own or of their parents. “MS is unpredictable, and everybody’s MS is different,” Crayton says. “The people who have the hardest time with it are control freaks. There is a one in 84 chance of being killed in a [car] crash…and yet we do go out and enjoy ourselves.”
Guerry says all the pieces of her life came together with TurnFirst. “I knew how to create a Web site, how to communicate, and I’d had years of thinking and talking about MS,” she says. “Having hope is so important. I feel people need to believe that healing is possible.” Guerry assembled a board of directors that includes medical experts and people whose lives have been touched by MS, such as Doorenbos and McGloon’s wife, Kate, a media specialist. It was at a fundraising dinner for TurnFirst that Kevin McGloon first spoke publicly of his battle With MS. “People I’ve told have been overwhelmingly supportive,” he says. “The part of the disease I would not want to relive again are the first six months where I suffered in silence.”
In creating TurnFirst, Guerry says, “I had in the back of my mind the idea that I was really doing this for my 26-year-old self.” Not long ago, she says, she got an e-mail from a young woman who was newly diagnosed with MS and whose doctor had recommended the Web site. “She wrote that she and her mother were both really helped and reassured by it,” Guerry says. The e-mail, she says, was signed, Samantha.
Kathleen Wheaton is a regular contributor to Bethesda Magazine and lives in Bethesda.
