Victors' tales

Stroke survivors share their stories through multi-media films

by Diana Reynolds Roome

How does a man without words tell a story of the most devastating event of his life? The answer is not rocket science, but a combination of hard work, ingenuity and a few good computer programs. Bill Wood, who tells his story in a three-minute mini-movie called "Always Taking Off," is in fact a rocket scientist. But his fall to earth had nothing to do with his profession.

At the age of 52, Wood was rendered immobile and speechless by a stroke. He had been passionate about his work, which was also his hobby. As an aerospace engineer, he had worked on the Apollo program and for several Silicon Valley companies. A track athlete who could propel himself 6'3" vertically and leap 23' horizontally, he had been so fit he thought nothing of climbing Mount Whitney every year. But all this came to an abrupt halt one day as he quietly read aerospace magazines in the library. Wood fell suddenly to the floor, paralyzed and unable to utter a word.

Though advanced treatment at El Camino Hospital probably saved his life, he remained partially paralyzed on his right side as well as severely aphasic (unable to use or understand words). Gradually, he learned to sit up and walk again through intensive therapy at the Palo Alto Veteran's Administration Hospital, and then through Project Reach at Cubberley Community Center, where he will graduate in March after four years. Slowly, and with immense effort, his speech too started to return.

The story of Wood's fight to regain his life is one in a series of ten short multi-media films, produced by people whose lives were profoundly impacted by stroke. The project was sponsored by the Peninsula Stroke Association, a Palo Alto-based support and advocacy organization. The films were created at Digital Clubhouse in Sunnyvale.

"Storytelling can be a form of healing," says Mary Ellen Locke of the Digital Clubhouse. "Digital storytelling is a common language, crossing all ages, professions and types of people. You don't find these stories in history books, so this is one way we can preserve them."

The non-profit Digital Clubhouse Network, supported by such companies as Hewlett-Packard, IBM, Cisco, Adobe, Iomega and Yahoo, provides tools and technical help to people wanting to put their experiences into perspective and find meaning even in disastrous events.

"Stroke is not much talked about, even though it's the leading cause of disability in this country," says Anne Jacobs, Ph.D., director of the Peninsula Stroke Association. "Often people with stroke withdraw because they cannot participate on the same level they used to."

In graphic terms, with humor as well as pathos, the films tell of being unable to speak or swallow, of being reduced to a vegetable, of doctors asking families if they wanted to "pull the plug" on life support. While the movies show the storytellers' courage and determination, it's not egotism that drives their efforts, but the need to comprehend and accommodate challenges. Loss is a common theme.

"The person I once was seemed to exist no longer," says Allan Newlands, who attended Palo Alto High School, became mayor of Woodside and served on the committee for Green Foothills. Once a keen competitive sailboat racer, he adds, "Now I catch the wind by making new friends. Their spirit amazes me."

Former Gunn High School student Michael Hoffman suffered a stroke at age 39. His mother, Geri Hanrahan, tells the story of his flight to Stanford Hospital from his home in Nevada, of the dire prognosis and his recovery in spite of it. A former soccer player, he fell in the bushes a couple of times while trying to learn to walk at his mother's home in Menlo Park. "We had to call the fire department to get him out," recalls Hanrahan.

The stories were crafted using personal photos, video clips, voiceovers, music and sound effects, with the help and artistic guidance of volunteer instructors and Clubhouse members. Cartoons or graphics provide occasional light relief. Some helpers are former Clubhouse clients. Other volunteers are new to the experience.

"I'd heard about stroke, but I didn't know much," says 13-year-old eighth-grade student Chris Chen, who helped enter Wood's photos, charts and video clips into a computer and give them coherence. "We learned about the emotional side of stroke, how to build patience and speak clearly. It was really inspiring for me. Bill's a man that never gives up."

Valerie Millar, who helped shape Bill's story, suggested a unique way of recording the voice track. Because Bill could only say a few words, his long-time partner and caregiver, Barbara Stratton, prompted him and then filled in details herself. This required rehearsing every sentence--Wood's voice followed by Stratton's--recording, stopping, rehearsing and recording again. Although they worried it might sound choppy, the results reflect the power of their communication, honed to a fine point after several years of practice.

"It took us three or four hours to record a three-minute tape," says Millar. "Bill had to practice the words over and over again, though his mind inside is crystal clear. He was determined to get them exactly right."

For Wood and Newlands, like others, their ongoing tale is one of progress, however small those steps may seem to people who have never encountered stroke. A month ago, Wood broke his own post-stroke record in long jump, pushing to 4'10" from standing position even though he can barely run. Newlands founded a stroke newsletter, Catch the Wind, which he edits with his wife, Marti. David LaGrone, who was pronounced a vegetable, has learned to cross-country ski. Hoffman is back on his ranch in Nevada, taking care of himself and mending fences.

"There's a death of pride after a stroke," says Marti Newlands, Peninsula Stroke Association program co-ordinator. "Many had to say goodbye to it all--work and workplace, social groups and recreations. The stories helped to confirm that even though they're no longer who they were, they've done something with their lives."

"There was something very affecting about every one," says Barbara Kent, a Menlo Park communications consultant, who viewed the 10 videos at a celebration in Palo Alto for storytellers and their supporters. "What each of these people has been able to do through sheer grit and drive is remarkable."

Short and rough around the edges, the stories make it clear why the Peninsula Stroke Association (PSA) refers to stroke victors, never victims, says PSA's Jacobs, and why the movies are collectively called "Victory Over Stroke." Watching their own films, the storytellers can say, "I went through all of that, and here I am still, able to tell the tale."

Selected "Victory Over Stroke" stories will be shown at Peninsula Stroke Association's local events, and at the American Stroke Association Women's Tea on May 17 at the Fairmont Hotel in San Jose. For details, call PSA at 565-8485 or www.psastroke.org; and ASA at 1 (888) 4-STROKE (478-7653) or www.strokeassociation.org.

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