Healing Stories Healing Stories (February 08, 2002)

By Diana Reynolds Roome

Telling stories may be one of the most ancient forms of therapy for life's painful experiences. At the Digital Clubhouse in Sunnyvale, stories of struggle and healing are being forged in a multi-media format by people whose lives have been profoundly impacted by illness or traumatic events.

The non-profit is dedicated to giving people the tools and technical help to put their experiences into perspective and find shape and meaning even in great loss.

Though always short and often rough around the edges, the stories pack an emotional punch. With pictures, music and voice-overs, humor as well as pathos, survivors tell of their struggles with cancer, stroke, domestic violence, war and bereavement.

Some memorable stories concern losing hair during chemotherapy, learning to speak again after a stroke, or regaining strength after being severely beaten. One workshop helped those who had lost a loved one find some good emerge from grief.

A recent project, "Brave Young Hearts," allowed children battling cancer to share and express their experiences.The next project will bring together breast cancer survivors from the Latina community, starting with members of San Jose-based support group, Las Isabelas.

"These documentaries remind people of their most courageous moments," says Warren Hegg, founder and president of Digital Clubhouse Network, which has smaller branches in New York and Napa, and is planning to expand into San Jose.

The long-term value of the mini-movies has been underscored by their inclusion in the permanent research collection of the National Museum of American History at the Smithsonian Institution.

"The stories capture special moments, inspire others and help people connect. There is a universal message here, whatever group is expressing them," says Mary Ellen Locke, a board member who has headed many innovative programs over the past several years. Locke's own multi-media story, about the death of her daughter, was one of the first. "Digital storytelling is a common language, crossing all ages, professions and types of people."

With technical help and artistic guidance from instructors and Clubhouse members, new participants are guided in the difficult task of shaping and crafting their intensely personal experiences into stories that communicate meaning to others. They use personal photos, home video clips, voiceovers, souvenirs such as a lock of hair, music and sound effects of their own choosing.

Cartoons or graphics provide occasional light relief. Many helpers know the process because they have already made their own digital mini-movies.

The Clubhouse operates on the principal that to give is to receive, to teach is to learn. This helps to build a community of committed people who become part of a unique exchange of skills as well as experiences.
Production support from students

Much of the production and technical help comes from students, aged 12 to 18, who in return for learning advanced computer skills help to translate dream into reality on the screen using donated software, such as Adobe's Photoshop and Premiere.

(Organizations such as Mitsubishi Electronic American Foundation, Philips Electronics, American Mall Properties and the Sobrato Family Foundation have also provided equipment or funds.)

"If it weren't for these kids, none of these stories would be made," says Locke. "They bring enthusiasm, vitality and technical skills, and they learn about life."

Jennifer Chou, a sophomore at Wilcox High School in Santa Clara, has assisted in several projects, and wants to become a doctor. "The lessons I've learned here are lessons I cannot learn at school. I know that sharing is healing," she says.

For Karen Kwast, speaking at the Breast Cancer Survivors' Premier Night late last year, the benefit at first was meeting other survivors and learning new computer technologies. But there was much more to it.

"As the video began to take shape," said Kwast, "I thought it was supposed to have an impact on others, but it had a dramatic impact on me as well. It opened a door that had been closed emotionally."

As in all the best tales, courage and determination make each storyteller a true hero. Yet it's not egotism that drives their efforts,but the need to comprehend and accommodate some of the most difficult challenges life has to offer.

"When my story came out, I thought: I never knew I had this in me. I looked back and realized I'd had some heavy experiences," said Nikki Wright, a breast cancer survivor.
@Finding one's new self

Coming to terms with the difference between the old self and the new self is a major component of storytelling, whether digital or not.

"I'm not the same person I was before the stroke," says Annie Riley, a retired psychologist who lives in Mountain View. An inveterate traveler, she was left speechless by a stroke while in China.

The creation of "Annie's Journey" told the story of her experience and recovery back in the U.S. Riley now speaks and travels again, though progress for some can be much slower.

"Many had to say good bye to it all _ work and workplace, social groups and recreations," says Marti Newlands, program co-ordinator of the Peninsular Stroke Association, whose husband Allan Newlands had a stroke several years ago. "There's a death of pride after a stroke. But the stories helped to confirm that even though they're no longer who they were, they've done something with their lives," says Marti.

She now helps spread others' stories through his stroke survivors' newsletter, "Catch the Wind."

"My whole movie is about how I am the same person, but I'm not," says Mary Jo McCully, who has shown "A Hair Razing Experience" to groups such as the Breast Health Project in Palo Alto, where she is a volunteer. "It helped me move on, and it helped me heal. Seeing the video helps others feel they'll be okay, that they can get through this, too."

Leslie Moreland, who suffered a stroke at age 50, has seen her video "Ryan's Mom" used as a way to help others avoid the same devastation. "I don't want my story to be anyone else's," says Moreland, whose movie is sometimes used to help illustrate PSA's education programs. "I had every single stroke symptom, and never knew what they meant."

Digital stories can help forge a link between personal and social transformation, says Amy Hill, program director of Silence Speaks, a Berkeley based organization that supports survivors and witnesses of violent abuse.

"The most powerful spokespeople are survivors," says Hill. "Putting the voices of people most affected by violence in the forefront can help promote prevention."
Benefits transcend simple catharsis

"Telling a story is a healthful thing, for those who tell and for those who hear," says Andrew Winzelberg, PhD, psychologist and research associate at the Department of Psychiatry and Behavioral Sciences at Stanford, who has helped design a Breast Cancer Survivors' support group online. "We've know this intuitively for thousands of years. 125 years ago, medicine got involved and people started telling their stories to therapists or counselors."

Now it seems that the simple act of telling a story is beneficial, even without an immediate audience.

In research studies, people who wrote about their chronic pain or asthma suffered less anxiety, depression and illness at the end of 6 months. "As you tell the story, you're making sense of it," says Winzelberg, "and as you make sense of it you're making peace with it."
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For more information about the Digital Clubhouse, visit www.digiclub.org or stop in at 1252 Town Center Lane at the Sunnyvale Town Center Mall. They can also be reached by telephone at: 408-481-0880.