The Sun Sunnyvale's Newspaper Photograph by Skye Dunlap Victoria Johnson (left) determines which images to use for her video as volunteer Mary Ann Lipsig gives her a hand. Johnson said she wanted to share her story because listening to other people's experiences helped her while she was battling cancer. Survival Stories Seven women link up with the Digital Clubhouse to create video scrapbooks Story by Pam Marino Some stories are too personal to share. And then there are those stories that are so intensely personal and at the same time universal that they must be shared. For many breast cancer survivors, sharing their painfully personal stories with family, friends and even the public is important, not only as a part of their own healing, but as a way to both warn and comfort others. At 8 p.m. on Oct. 29, three Sunnyvale women will tell their own stories of survival and hope in a very public, very high-tech way at the Digital Clubhouse at the Sunnyvale Town Center Mall. The women joined with four other Bay Area breast cancer survivors to create digital videos that will tell each of their stories. With the help of computer-savvy volunteers, they have been working on the videos feverishly since last month so that they could be premiered during October, Breast Cancer Awareness Month. "We're using digital storytelling as help in the healing of a traumatic experience," Digital Clubhouse director Mary Ellen Locke said. The storytelling will also help educate people about the importance of monthly self-exams and annual clinical exams for women age 20 and above and annual mammograms for women age 40 and above. For the breast cancer survivors, working on the three-minute videos to share their stories has been an important part of their personal healing process. "There's something about the telling of a difficult story that helps you," said Pat Plant, who was diagnosed with breast cancer in July, 1997 after she found a lump under one of her arms. She underwent surgery and chemotherapy, missing work at the Metropolitan Education District in San Jose for four months. Plant joined a breast cancer support group, where she and the other women shared their stories with one another. Plant, a marketing and public relations expert, also joined the marketing committee of the local unit of the American Cancer Society to help spread the word to other women about monthly self-exams and mammograms. Sunnyvale director of libraries Vickey Johnson said she became dedicated to telling her story of survival because of how much it helped her while she was battling cancer to hear others' stories. "One of the several things that got me through my own breast cancer experience was I had access to women who shared information with me," Johnson said. What she learned from those women helped not only her physical health, but her emotional health as well, she said. Johnson was diagnosed in 1996, just six months after having moved from Southern California to take the Sunnyvale libraries job. She said she received enormous support from the city and her co-workers during the one-year experience. Gail Woll was diagnosed 14 years ago when she was 23 years old. Woll got involved in the cancer society two years ago after her own mother died of breast cancer. She sits on the marketing committee with Plant. Woll, an African American, said she felt charged to tell other African American women how important early detection of breast cancer is. "The conception is that it's a white women's disease," said Woll, a contract administrator for the Department of Defense. "We don't talk about it in our culture." She said she believes the multimedia videos will be a powerful tool in spreading the word in the African American community. "I think we're a more visual-verbal kind of people," she said. Locke said the multimedia videos will appeal to anyone, however. "These videos can make a powerful presentation, much more than someone just standing at the front of a room talking," she said. The video project got started only a few months ago after Plant was invited to the Digital Clubhouse by a neighbor to see a group of World War II veterans share their video stories. As she watched the multimedia videos unfold before her, revealing the battles--both literal and emotional--the veterans had fought, Plant got an idea. "I just fought another kind of a battle," she said, so why not use the same powerful method of storytelling to share with others about breast cancer? As it turns out, the people who run the nonprofit Digital Clubhouse had been thinking the same thing, Locke said. With Plant's connections to the American Cancer Society and to numerous Bay Area support groups, a call went out to breast cancer survivors to participate. The seven who responded started work in September, coming in after work on weeknights to create their videos. For each story it takes about 30 hours of work to create the three-minute videos. For the most part, the women did not know each other before the project began. The women are of various ages and races. "The only thing we really have in common is we're all breast cancer survivors," Plant said. After about a month of work together, they have bonded. "I feel very close to these women," Plant said. "I'm really impressed with these women," Locke said. "They're very strong, very courageous, and they care about other women." The women shared something else before they started the project--they were not exactly high-tech mavens, yet now they were being asked to create complicated multimedia presentations using a computer. That's exactly where the Digital Clubhouse came in. Created in 1996 by Warren Hegg, the Digital Clubhouse is a nonprofit organization dedicated to digital literacy in the United States as well as the face-to-face interaction of people using computer technology. Silicon Valley companies have jumped on the bandwagon and have donated hardware, software, office furniture and other items to the clubhouse. Volunteers do the teaching, and participants in clubhouse programs must pledge to volunteer 10 hours of teaching time at the clubhouse after their experience. The Digital Clubhouse offers Internet classes for children who do not have their own access, and it is involved in other projects, such as the "Vision of the Valley Project," which helps young people create videos that share their visions of what Silicon Valley could be like in the future. Others, like the World War II veterans, have come to the clubhouse to learn the art of digital storytelling. Oftentimes storytellers use still pictures, video and computer-generated graphics more than words to spin their tales. "There's a lot you don't have to say because of the old adage, 'one picture's worth a thousand words,' " Locke said. The breast cancer survivors' challenge was to fit their life-changing stories, as well as information about cancer detection, into a mere three minutes. Volunteers at the clubhouse taught the women about storyboarding, which is used by filmmakers. The women created storyboards to plan out each frame of their videos. They gathered photos they had of themselves before, during and after treatment. Some women didn't have photos, and so they dug up other pictures, often off the Internet. Student volunteers from Cogswell College taught the women how to use Adobe Systems' Premier computer program, which blended the photos, video clips, animation, music and their narration. In some instances, the students helped the women create computer animation. In Plant's video, for example, she explains that before her diagnosis she used to "burn the candle at both ends"; a Cogswell student created a computer-generated image of a candle burning at both ends to accompany Plant's narration. Because the stories are so personal, the women will be sharing their completed videos with family and friends first in a private screening before the public event on Thursday. After the public screening, the women said they plan on using their videos to speak to other women throughout the community to educate them about breast cancer. "My message is you can survive cancer," Plant said of her story. "Cancer is not a death sentence." She also wants to share with people how facing cancer made her appreciate life. "I learned to stop and smell the roses, and even learned how to plant a few," she said. Johnson wants to convey how important it is to provide support to women who have breast cancer. "My story is the support that helped me get through it. It's also a message to spouses and families and friends," Johnson said. Woll said she will loan the video to anyone who thinks they can use it, and she will use it through her work at the cancer society in reaching African American women to stress early detection of breast cancer. Chronicling their stories for digital video has another purpose, as well. In some cases the women created the videos with their families mind. "It's the kind of experience you can't really leave behind," Johnson said of surviving breast cancer. Not just emotionally, the women said, but also physically they need to remain aware, since breast cancer has been known to reappear in other parts of the body years after initial treatment. "None of us know how long we have to live. ... This is a good memory of us for our families," Plant said. [ Back to Contents Page | Sunnyvale Sun Home Page | Archives ] This article appeared in the Sunnyvale Sun, October 28, 1998. ©1998 Metro Publishing, Inc. All rights reserved.