Sharing the Messages

Group helps those in crisis record their stories of life
3/9/04
By MEGHAN HENNELLY

NEWS-PRESS STAFF WRITER

What would you like to tell the people you love if you had only a few months to live?
It’s a question many of us may have to face one day. In these uncertain times, when we often don’t know what will happen tomorrow, much less in a few months, it seems even more important that we plan ahead for such an emergency. Although the question is a painful one to ponder, Kate Carter firmly believes we should all try while we have the time.

Ms. Carter was faced with this very question in 1998 when a close friend and widowed mother of three, Tairi Gould-Gardner, discovered she had terminal breast cancer. “I was shocked and devastated,” said Ms. Carter, who is 52. “But then I thought, I have to do something.” So she went to her friend and said, “Look, I want to sit you down in front of a camera, and I want you to tell these kids everything you want them to know for the rest of their lives.” Ms. Carter saw the videotape as a tool to help her friend cope with her diagnosis and as a means to help her children remember their mom. Her friend never had the opportunity to complete a video because her health deteriorated so rapidly. But the idea moved Ms. Carter to start LifeChronicles, a nonprofit organization that records the terminally ill so they can communicate messages of comfort and share lifetime memories with those left behind.

“If there’s a thread that runs through all these stories, it’s that their close relationships really matter,” said Ms. Carter, who just shot a video for her own three children. “They don’t talk about their jobs or their accomplishments. These tapes give them a chance to talk about the people they care about and love.”

Since 1998, her organization has made more than 120 videos for not only the terminally ill but people in the beginning stages of Alzheimer’s and Parkinson’s diseases; young women who have decided to place their children up for adoption; veterans; and young children. And though she listens to their questions, concerns, aches and emotions day after day, she insists the job is not sad –Group helps those in crisis it’s inspiring. “You know, it’s always sad what’s happening,” Ms. Carter said, “but what we feel good about is that we are creating something meaningful for their families.”

The messages can be on videotape, audiotape, CD-ROM or even a written text. They are recorded, produced and edited for free with help from media and production students in high school and college.

And thanks to articles in the Chicago Tribune and Rosie magazine, her organization has helped patients around the country and inspired other good Samaritans to start similar organizations in their communities.

Ms. Carter received the NFL Community Quarterback Award for her efforts to improve her community on Feb. 1, Super Bowl Sunday. She was awarded $10,000 for her efforts and was mentioned in Parade magazine that same day. She and her young crew also teamed up with the Alzheimer’s Association of Santa Barbara to document the progress of the disease. As their subject, they chose Tap Stevens, a former professor at USC who is in the early stages of the disease. “The videotape is a way for Mr. Stevens to communicate with his wife and family long after he loses the ability to speak,” Ms. Carter said. “And it will also be a helpful tool for his future caretakers to understand who he was before the disease took over.” Every few months, she meets Mr. Stevens and his wife, Frankie, at their Vista del Monte house and questions the pair about changes in his memory, new medications and support groups while the cameras roll.

“Life is to be lived, and this is part of life,” Mr. Stevens, 80, said on a recent rainy afternoon. “So withdrawing is not in the cards.” That afternoon, the camera recorded Mr. Stevens looking into his wife’s eyes, reading some of his favorite poetry and laughing about his now-famous “one-line zingers,” which have increased as the disease has progressed. Each of these moments will live on videotape long after Ms. Carter and her subjects are gone.

“Thirty years from now, families of Alzheimer’s patients can watch these videotapes and learn about the realities of the disease before it’s too late,” Ms. Carter said. The videos prove therapeutic not only for the family but for the person in distress. William Schwartz, a World War II veteran, was suffering from disturbing nightmares about his days in the service. After two short sessions of telling his story on camera, he hasn’t had a nightmare since. That was a year ago. The videos will also be “a wonderful thing to pass onto his grandchildren,” said his daughter Linda Schwartz, who became a LifeChronicles board member after watching her father on film. “It’s not just his story about the war but a glimpse into his life as a young man. His grandsons don’t know war, but they will understand that their grandfather gave them the freedoms they have now.”

Ms. Carter recently created a project called While I’m Away, which makes videos of service members for their children. Her organization has also partnered with the Pierre Claeyssens Military Museum and Library and will produce 10 videos for the museum.

War veterans and Alzheimer’s patients may be difficult to tape, but nothing is more heartbreaking or heartwarming than documenting the lives of sick children, Ms. Carter said. One of those children was Jessi Modeen of Lompoc, a spunky, blond-haired Backstreet Boys fan who at the age of 5 was diagnosed with neuroblastoma IV, an aggressive form of cancer. Just before Jessi was about to undergo her first bone marrow transplant, Ms. Carter’s crew made a video of her family and friends reading stories and singing songs. Before long, one tape turned to five, including a music video. “Jessi loved (the videos) because the entire world was all about her,” said her mom, Denise Sporseen, who nicknamed her daughter Baby Bear. “They kept her connected with people who were not able to be physically with her at all times. She liked to show off because she was the only child at the hospital with these videotapes. She absolutely adored the attention.” Jessi became the “poster child” for LifeChronicles and was crowned “Queen of the Hop” at an organization fund-raiser. When she died last August, friends at her memorial service watched little Jessi dancing while her favorite song, “You’ll Be in My Heart,” played from a loudspeaker. The tapes show “the real Jessi” — riding horses, singing her favorite songs, reading books and drawing, her mother said. They also display the little girl telling her parents “bye-bye.” As Ms. Sporseen explained, “My husband was singing her a lullaby and kissed her ‘night and said, ‘I’m going to miss you, Baby Bear,’ She looked at him and said, ‘I’m going to miss you too, Daddy. I love you.'”

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