Disease can’t tame author Rebecca Wells

Published 6:00 am Saturday, October 15, 2005

t After a period of hermitage, the world famous ‘Ya-Ya’ author tries to find normalcy.

Inch by excruciating inch, best-selling author Rebecca Wells is coming back to life on Bainbridge Island.

Since 1998, Wells has lived a medical nightmare, suffering severe respiratory infections, intense pain, seizures and extreme sensitivity to light and sound.

The debilitating symptoms started as Wells was enjoying the dizzying success of her first two novels. “Divine Secrets of the Ya-Ya Sisterhood” vaulted her to the top of the New York Times’ best-seller list and was made into a movie, followed by the award-winning “Little Altars Everywhere.”

Both books chronicle the lives of the Ya-Ya’s, a group of lifelong, fun-loving female friends in Louisiana.

Wells thought she had chronic bronchitis. As her condition worsened, she was told she might have malaria; maybe she needed anti-depressants.

After undergoing a crushing series of tests and visits to a dozen doctors, she received the correct diagnosis last winter in San Francisco: advanced neurological Lyme disease.

Wells also suffers a parasitic infection similar to malaria called babesiosis. The deer tick that probably infected her may have carried both bacteria, which means both copious amounts of antibiotics and anti-malarial medicine.

“I haven’t even been to Africa and it (upsets me),” Wells said. “I never knew I had a tick on me. I never saw anything.Everybody gets (Lyme disease) differently. In general, I had flu-like symptoms that don’t go away and this malaise that is so great.

“My father always said, ‘I’m bone tired.’ It’s beyond bone tired. You can’t lift your hand. Those were the first symptoms.”

Wells discovered that many doctors are reluctant to test for the disease, and not everyone infected with it gets a bull’s-eye rash.

Fewer than 50 percent of Lyme patients either recall a tick bite or a rash, and standard blood tests often fail to identify the disease, even in its late stage. In addition, prescribed antibiotic treatment often is too brief to help.

Her illness shamed Wells and made her a hermit, but now she is reaching out to people again as she strives to get healthy.

This wasn’t easy for her to do.

“For so long I hid the fact I was sick,” Well said. “Then I thought I could say it was a knee accident from skiing. Everyone around here has knee accidents, but then I’d look like a bad Joe Cocker. When you become disabled, it’s a process getting back in the world and for me it takes a lot of courage.”

Wells is happy to be back on the island. She and her husband, photographer Tom Schworer, moved here in 1989, to a house in the middle of the woods, “totally claustrophobic and dark.”

From 1997-2002, she tried out different places to live – in the South where she was raised, in northern California, but found that “it wasn’t northern enough.”

“Coming back to the island is a beautiful respite from America,” she said.

Although Wells travels to San Francisco, where she is under the care of Lyme-literate doctors, her world is “kind of smaller right now.”

She has experienced seizures and the need for a wheelchair, and still finds walking sometimes difficult. She doesn’t know how long she will remain on megadoses of antibiotics and doesn’t hold hope of being cured. But with continued prayer, meditation, healing imagery, kindness and love, she believes she will be much healthier one day.

“Hardly any money is being given to research anti-bacterial pharmaceuticals, and there are no medications specifically for Lyme disease,” she said.

Wells wants islanders to remember that island deer can carry ticks, and that everyone should become educated about the disease that was identified in the mid-1970s and is endemic to the Midwest and Northern California.

“On the West Coast, we’re very close to recognizing the dangers of it,” she said.

Before Wells learned she had Lyme disease, she began writing “Ya-Ya’s in Bloom,” published last March. The completion of the book was “a victory of the imagination over my illness and fear. It kept me going,” she wrote on her website, www.ya-ya.com.

Also helping Wells is the outpouring she continues to receive from Ya-Ya fans around the world who provide encouragement, emotional support and recipes for one another through her website.

“Clearly, some divine force is looking after me, even if I try to deny it or it seems like it’s not,” she said.

When Wells was working on the book, there were many days when her husband would wheel her to the door of her writing room, then carry her to the computer. On other days, she spoke parts of the book into a tape recorder from her bed.

She had to learn to work within her limitations; her pockets of energy came late at night and her pace was uncharacteristically slow. Wells credits Schworer for helping her through, and calls the book her “miracle baby.”

“Everything that was not germane to my writing, he took care of,” she said. “I would save things in the wrong file folder and he would just sit down and find what I had written.

“I have enormous trouble with technical things, and my eyesight has been affected by this disease.”

Also weighing heavily on Wells’ mind is her home state of Louisiana, in the aftermath of Hurricane Katrina. She grew up on Lodi Plantation in the central portion of the state.

“My immediate family was on high ground and our plantation was really spared. We got the rice and the cotton out. The soybeans are in the ground,” Wells said. “New Orleans was like the Queen City to me. You took the train with your mother to (shop) and it was where I learned how to use finger bowls.”

Wells and Schworer are sad for all of their friends in New Orleans.

“It’s like the bottom of my idea of the world fell out,” she said. “If you’re theatrical or gay or design gardens, you end up in New Orleans. I’m at this point wrestling with the evil and the greed of this cutting open of my mother state and exposing the cancer.”

Wells would love to see a benefit on Bainbridge for hurricane survivors. She envisions an event with writers and musicians, a really good fiddle, something “Cajun worthy.”

At this point, life is up-and-down for Wells. She is working on a new book, but won’t divulge anything about it yet. She ventures out of her house occasionally and stops downtown for a bit of shopping – when she can find a place to park.

“The lack of handicapped parking in Winslow makes my life hard. Some days I’m okay…other days I’m out of luck. (Although) there are many, many ways in which the village nurtures me,” she said.

While she no longer mirrors the photos on her book jackets, Wells is easy to recognize these days.

“Just look for me – on even the warmest of days – decked out in a full-length down coat, Ugg boots, several mufflers, a hat that my sweet husband says looks very ‘Russian Countess,’ and a pair of huge black ski mittens to keep my hands from freezing,” she said. “This is all to combat the freezing cold that accompanies neuropathy, which is associated with Lyme disease. Oh, and there are my Arctic sunglasses to combat light sensitivity.

“I do sometimes miss wearing those patio pumps that I was so fond of in my misspent youth.”

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Beat the tick

According to the Washington State Department of Health, seven to 18 cases of Lyme disease are reported each year. Almost all the cases occur in counties west of the Cascade Mountains, in the Cascade foothills or out of state.

For information about Lyme disease, see the International Lyme and Associated Diseases Society, www.ilads.org; the Lyme Disease Association, www.LymeDiseaseAssociation.org.; and www.lymedisease.com.