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Life Support by Email An article from the online magazine PreText, Dec. 97. http://www.pretext.com/ By Dominic Gates Samantha Jane Scolamiero had a brain tumor removed in 1990, when she was 20. Afterwards, though her thinking was unimpaired, her brain could take in only limited amounts of sensory stimulation at one time; and she had problems with vision and balance. She also faced inadequate follow-up care. "I had to fight, yell, kick, and scream to get rehab at all," she recalls. Officially labeled "cured" after her surgery, she was refused admission to a support group near her home in Boston, Massachusetts. The group was exclusively for people coping with malignant growths, not benign tumors like hers. She found another group 45 minutes away by car, but she was in no state to drive. In 1993 Scolamiero started her own virtual support group via an Internet mailing list. Today that list, BRAINTMR, is a lifeline for 1200 members in over 30 countries, many of whom would otherwise languish in isolation. And Scolamiero has been transformed into a militant patient advocate and an eloquent promoter of the value of the Internet. It is easy to be cynical about Internet hype when TV ads divorced from the realities of the world promote globe-spanning visions of goatherds in the Gobi desert brandishing laptops. Though online medical special interest groups occupy an unglamorous corner of the Internet, they are better illustrations of cyberspace buzzwords than anything in those ads. And while the medical industry has a glossy and expensively produced presence on the Web, it's the networking of these support groups through basic e-mail that has emerged as the Internet's most important health-care application. Driven By Love Mailing-list-based groups such as BRAINTMR are virtual communities of individuals and families struck by chronic, sometimes terminal disease. At times the messages exchanged may not be much more than banter between friends who've become close through sharing trauma. But the purpose of the group is never far out of mind. "People can be sitting around joking about their brain tumors," says Scolamiero, "then someone new comes on and types 'I'm sitting here crying at my computer.'" These virtual communities are often volunteer-run, controlled not by the health industry nor by medical professionals, but by patients. Driven by love, not money, they offer both solid practical information and emotional support. Doctors sometimes participate, as much to learn as to answer queries. The benefits are profound: knowledge, empowerment, strength, peace, and sometimes life itself. "I doubt that what I say will come close to expressing the gratitude which I feel," wrote one BRAINTMR subscriber to the list, "My sister would be dead today if it had not been for this support group." Perhaps because we all find it easier not to think too much about illness and death, many become aware of the existence of online support groups only after something terrible happens. When Angela Sissons's breast cancer recurred 12 years after successful treatment of an initial occurrence, Sissons, of Los Angeles, California, went to the Health and Fitness sections of America Online looking for research material and information. "I didn't think about online support groups even existing," she says. But soon a member of one group--who affectionately call themselves The Cybersisters--found her, and now she talks regularly online with other women in various stages of the disease. "They have been extremely helpful to me," says Sissons, whose prognosis is poor. "There's something comforting about talking to persons you have never seen in person, because there's some anonymity with the computer, and it allows me to be very frank, very honest, and very open to suggestions, and woman-to-woman advice." Better Than Face-to-Face Surprisingly, the element of distance in communication is often cited as a positive feature that makes online groups superior to face-to-face support groups. Recently Diana Dills of Seattle, Washington, was diagnosed with melanoma, an often fatal form of skin cancer. Although she has a strong base of friends around her, Dills decided not to tell them. "If you go to friends there's an emotional impact on the people around you, and you have to deal with that too," she explained, "Online there are people going through the same thing; but there's a detached perspective. It's better than sitting down with your best friends and laying this huge thing on them." So Dills dealt with it herself, with online support, and only after her successful surgery broke the news to friends. By then she could reassure them, "It's cool; I'm probably not going to die from this." Pam Honsinger, whose husband is now in remission from Hodgkin's disease, a cancer of the lymphatic system, remarks that a local face-to-face group may not have people of the same age or same predicament, and may therefore be of limited help. In her case, the local support group for caregivers like herself was just impractical. "I had back problems, a baby, a sick husband; plus the group is only available certain times. I couldn't go," she says, "Compare that to the Internet: you can sit in your pajamas with a cup of tea at home with your family. Hands down, online is an absolute godsend." Online connections have the strongest benefits for people who suffer from relatively rare diseases or who live in isolated areas away from major hospitals. Honsinger had never even heard of Hodgkin's disease when her husband was diagnosed. Now she says of her online group, "The Listserv saved me . . . those folks have seen us through more crises." Similarly, parents newly devastated by the diagnosis of spina bifida in a child may connect online with a whole community of people who have been dealing with the disease for years. Eve Clyne from England, whose 12-year-old daughter Joanna has spina bifida, praises the alt.support.spina-bifida mailing list, and points out that "the fact that the list is for those expecting a baby through to adults with spina bifida means that you can have a very wide spectrum of advice." Lisa Coles in Australia is due soon to deliver a baby with spina bifida. "The only reason that we are still sane," she writes "is because we have been able to talk to other parents and people with spina bifida via e-mail." Not Just Feel-Good Groups Newcomers to the online world often discover mailing list groups through newsgroups. Newsgroups like alt.support.cancer are an open forum for questions. Although such unmoderated newsgroups can be at times frustratingly burdened with junk mail, the pushing of quack cures, and purely pointless messages, they also facilitate replies to factual queries and provide information on more specialized and more private e-mail-list-based groups. But these lists are not just feel-good groups: they are also sources of hard facts. Dills, who sought emotional support during her fight with melanoma, discovered this in her earlier struggle with diabetes. Diagnosed four years ago, Dills found practical information in online diabetes support groups that she could not find elsewhere. Diabetes is a chronic condition without a cure but amenable to control. Uncontrolled, it can lead to serious complications, including blindness, kidney failure, and the need for limb amputation. The treatment for the form of diabetes that Dills suffers involves monitoring blood sugar levels and controlling her diet. After two years of standard treatment with her doctors left her debilitated, Dills read on the mailing list about a low carbohydrate diet, which seemed applicable to her physically active lifestyle. She tried it and her health improved dramatically. Her diabetes has been under control ever since. Dills was understandably annoyed to find that this was a well documented regimen; doctors, she says, frequently discount the option because the amount of diet control required is beyond the capabilities of many patients. Now Dills, like Scolamiero, is the epitome of the informed patient, determined to understand all aspects of the disease and to take as much control of her health as possible. For people who would otherwise lack the necessary information, online support can put this ideal within reach. When Online Communities Fail And yet, there are some limitations to this form of communication. In one of her Web pages Scolamiero remarks that computers "are really mere extensions of ourselves." Though it can bridge barriers of distance and time, information technology cannot entirely transcend the limitations of human frailty. Dills believes that lists which grow too large inevitably lose focus. She gets impatient when lists begin to diverge from the subject, and more so when individual postings lead it astray. She has a saying on her refrigerator door: 'There is no cause so noble that it won't soon be joined by a complete horse's ass.' "Having a terminal disease," she contends, "doesn't excuse you for being a horse's ass." Angela Sissons, of the Cybersisters breast cancer group, once tried a different online support community, only to find "a closed group who talked in jargon and laconic terse sentences about their own stuff and who did not seem to be open to anyone but themselves." In fact such disappointments are common; some groups grow insular and are hard for newcomers to penetrate. Others go through a turbulent history where one member of the list manages to upset a lot of people and everyone grows wary afterward. Like real communities, online communities go through cycles. Some fade into silence. New ones grow up independently. Anyone in need of support should be discerning in evaluating a group. As with any type of online community, one should simply hang out for a while and see what is going on before posting. Even Scolamiero has had moments of doubt about her idealistic enterprise. "When I began I thought truth and goodness would prevail," she says. Then for a period she grew worried about privacy issues. What did it mean that everyone knew about her brain tumor? Could it affect her future job prospects, her life insurance? What effect would it have on a kid to realize his parents talked about his medical condition all over the Net? Then at a conference, a health insurance executive approached her about the possibility of his company getting involved in her list. Scolamiero, who strongly holds that communities like the one she has created must remain in the hands of patients, had a gut reaction. (Note that at least one health industry Web site has set up a number of free online support groups that require members to fill in a detailed registration form--the information provided to be used for "market research.") "Here they are," she thought at the time, "taking the stuff we've been doing out of our hearts, and now they're going to sell it." Though Scolamiero drew back for a while, BRAINTMR parents reassured her that the advantages of online sharing are more powerful than any danger. "I regained my courage," she says "I'm back out there telling my story." She's formed a new foundation, The Healing Exchange Brain Trust, and is currently trying to raise money so that the BRAINTMR list can be split up into more manageable and more useful specialty areas--excluding no one with a tumor, malignant or benign. She also wants to add a bulletin board and chat rooms. Asked if she again believes that truth and goodness will prevail, Scolamiero laughs long, and says yes. (C) 1997, PreText, Inc. ---------------------------------------------------- Bruce Wallace Technical Writer Sydney, Australia +612 9358 4251 [log in to unmask] http://ourworld.compuserve.com/homepages/easyread