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Book Club's Members Share a Special Bond

Meeting via conference call, women with multiple sclerosis enjoy the intellectual challenge as well as the chance to socialize.

September 26, 2004|David Pierson | Times Staff Writer

The women know each other only by their first names. They come together every other month, spending the time in between engrossed in the books they've agreed to discuss.

They don't have the luxury of meeting at a coffee shop or bookstore because they have multiple sclerosis, a disease that saps their energy and complicates the most simple tasks, such as speaking or using a restroom.

So they meet on the telephone by calling a special 800-number conference line from various locations across Southern California to get the social interaction they crave.

"There were times when I could get to three different book clubs, but it got too much for me to think about walking and driving," said Janice Garber, the club's founder and facilitator who recently left her longtime home in Marina del Rey for Atlanta. "I felt very sad without a book club to go to. I needed that camaraderie. I needed that intellectual experience."

Garber developed the club, which has no name, a year and a half ago when she was a volunteer for the Southern California chapter of the National Multiple Sclerosis Society.

A former advertising manager for Toyota's truck division who is on permanent disability, Garber said she reads every day and knew of others with MS who would benefit from a book club.

Generating social clubs is by no means unusual for the national MS organization, which also organizes group trips to sporting events, movies and the theater. The popular events help enliven those who are usually isolated and comfort others who want to be around people who can empathize with the disease.

But as the book club has unfolded, participants have found that scholarly discussions of books such as "The Da Vinci Code" or "The Hidden Life of Otto Frank" inadvertently opened up people to describing their experiences and expressing their beliefs in a way that entertainment couldn't.

It allowed those who ordinarily never would have come together to have a more profound understanding of each other than they could by sharing hot dogs at a Dodgers game.

"There's cultural diversity, religious diversity; some people are in their late 20s, others in their 60s," said Miranda Mirsec, the club's programmer, who is based in the Southern California MS society's West Los Angeles office. "Everyone is very driven and very involved. They don't just sit back. They give their opinions. But they're very respectful."

Indeed, members who had lived in the South were asked about their traditions during the last meeting, a Sept. 15 discussion of Sue Monk's "The Secret Life of Bees" that involved 11 of the 33 registered book club members. The novel is about a white teenage girl who laments the death of her mother and then explores black culture against the backdrop of the civil rights era.

"Have you ever heard of kneeling on grits before?" Garber asked, referring to a passage in the book about a form of punishment.

"This is Sylvia," a woman answered. "I'm from Louisiana, and it's never happened to me personally. A friend from Mississippi has done it, though."

Then others chimed in. Soon they were talking about life in the 1960s and race relations. Then they took on themes such as love and faith. A participant named Barbara went on to say she believed God gave people who suffer "extra survival skills" to overcome their obstacles.

There was no talk of the disease. The only sign that this was a group with MS was the occasional slowing of someone's speech. In past calls, a member had said she needed a sip of water to cool down. The symptoms of MS are exacerbated when a person's body temperature rises. No questions were asked.

"They have MS in common, but they don't have to talk about it," said Marni Deckter, director of communications for the Southern California Chapter of the National Multiple Sclerosis Society. "They're not on the phone having a support group."

Privacy and a sense of normality are essential rights for many people with MS because of discrimination in the workplace, Deckter said.

"People don't know a lot about MS," Deckter said. "They think it's muscular dystrophy or they ask, 'Is that Jerry's Kids?' "

MS afflicts 400,000 Americans. It is a nonfatal disease that occurs when there is a lack of fatty tissue surrounding the nerve fibers in the central nervous system, which includes the brain, spinal cord and optic nerves. This complicates the body's ability to send electrical impulses to the brain.

The severity of the disease varies drastically, from minor vision problems to complete paralysis.

Mirsec, the club's programmer, said half the book group consists of working professionals such as lawyers and teachers who join the phone discussion on their lunch breaks. The other half are homebound because of the disease, but love to read.

Members do not have to pay for their books, which are either donated by publishers or purchased by the National Multiple Sclerosis Society.

They prefer audio versions that can be mailed to participants. When they're finished, the compact discs or books are returned in a postage-paid envelope.

"It just makes everything more accessible for everybody," Garber said.

The club is advertised in the newsletter of the national MS society's Southern California chapter, and Garber said she hopes to expand the program to other chapters.

"I would adore for it to go national," Garber said. "I think people who are homebound truly need the socialization; otherwise, they're just living and breathing without really having a life."

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