Excerpts from "A Personal Letter About Lyme Disease" by Rebecca Wells, author of Secrets of the Divine Ya-Ya Sisterhood and other books
On Lyme disease:
"I was so sick for so long -- and did not know why -- that I grew ashamed of my illness. This meant that my own sisterhood and brotherhood was left uncultivated. I lost a sense of community. With the exception of my sweet, steadfast husband and a few dear friends (most of whom live far away), I became painfully isolated. ????."
"It is especially important that primary care doctors become Lyme- literate so that this disease can be caught in its early stages. While Lyme is better known on the East Coast, it exists in many areas of the country, and awareness is sorely lacking. ????."
"I immediately went online to learn more at www.LymeDiseaseAssociation.org???.
"I learned I had to be very careful to be sure I was treated by a Lyme-literate doctor. I was fortunate to become a patient of a doctor very experienced in the treatment of Lyme Disease?????"
"Unfortunately, for most people, insurance covers very little of the cost of Lyme-related doctor visits and appropriate treatment. My out-of-pocket medical expenses are staggering. The cost to individuals and families for Lyme treatment can often cause serious financial strain. ????.."
1) News Article
Rebecca Wells, battling Lyme disease, translates her illness in 'Ya-Ya Sisterhood' sequel
Wednesday, March 30, 2005
BY BETH FOUHY
ASSOCIATED PRESS WRITER
Whether she is writing, meditating or gazing out her window at the salmonberry and wild cherry trees in her garden, Rebecca Wells takes time to count her blessings.
For the mega-best-selling author of "Divine Secrets of the Ya-Ya Sisterhood" and "Little Altars Everywhere," blessings are no longer measured in fame or riches or the legions of fans who have embraced the books and their tale of enduring friendship among four saucy, sassy Louisiana ladies.
Struck with chronic illness shortly after her books began their remarkable ride up the best-seller lists, Wells now finds quiet grace in living a simple life, and enjoying the fact that "Ya-Yas in Bloom," her latest installment in the saga, came to be written at all.
"I think 'Ya-Yas in Bloom' is perhaps a more tender book than my first two," said Wells, who has declined interviews because of her health but agreed to an e-mail exchange with The Associated Press. "Illness and the love I have been given have taught me about the need for tenderness. I know more deeply that we all need more compassion and kindness than this fast, consumer-driven world encourages."
The challenge of writing "Ya-Yas in Bloom" was just one part of Wells' terrifying descent into debilitating illness that began seven years ago, just as she was adjusting to the heady overnight fame wrought by her first two novels, which prompted women all over to form "Ya Ya" clubs to share books and do good works.
She began having dizzy spells which caused her to fall, and over time she became hypersensitive to sound. Then she developed respiratory infections, freezing hands and feet, and a multi-chemical sensitivity that made even the slightest whiff of perfume almost unbearable. For more than a year, she was tethered to an oxygen tank in her home near Seattle for at least two hours a day.
"The terror of not knowing what was happening to me was dreadful," Wells recalled.
After numerous misdiagnoses by a dozen different practitioners, Wells was finally diagnosed with Lyme disease and babesiosis, a rare, tick-borne illness with symptoms similar to malaria. Through a regimen of anti-malarial medications and antibiotics, she is hopeful that one day her body will be restored to some approximation of normal health.
Lyme disease bacteria are transmitted to humans by ticks that are carried by smaller animals and picked up by deer. The disease is often identified by an expanding "bull's-eye" rash that develops days to weeks after a tick bite. If untreated, the disease can cause joint swelling and brain inflammation. Lyme disease was named in 1977 when a cluster was identified in Lyme, Conn.
"I wake up every day and try to play the hand I've been dealt as best I can," said Wells. "There is deep joy in discovering that you can be sick and also happy. I look for the blessings and lessons in my illness, and trust that my soul is being formed."
Writing "Ya-Yas in Bloom" helped Wells focus on something other than her illness, but each day also sorely tested her will.
At her sickest, she was unable even to lift her hands, so she would lie in bed and dictate the book into a tape recorder. On better days, her husband, photographer Tom Schworer, would carry her to her computer, where she would work for 20 minutes at a time before stopping to rest. On her best days, she could write about four or five hours, less than half of her normal level.
In her bleakest moments, Wells said she drew inspiration from another esteemed Southern author, Flannery O'Connor, who wrote while suffering from lupus, a chronic autoimmune disease that eventually killed her.
"If ever there was a model to help me out here, it's Flannery," Wells said.
Another inspiration has been her friend and colleague, Amy Tan, the best-selling author of "The Joy Luck Club" and "The Kitchen God's Wife," whose own prodigious writing career also was nearly destroyed by Lyme disease. Tan, who suffered from the illness for four years before being diagnosed in 2003, says she didn't write a word during that time. She has since become an activist for Lyme disease awareness and a source of support for other writers suffering its ill effects.
"I got to know Rebecca in part because we both write about mothers and daughters, and the mothers tend to be intense and kind of looney," Tan said. "We talk a lot because she knows I understand Lyme disease, what it means to write and what it means to be public about it. She often says to me, 'Only another writer who has this would know.'"
In "Ya-Yas in Bloom," readers are reintroduced to Vivi, Caro, Neecie and Teensy, the boozy, raucous quartet who form the heart of the sisterhood. But here Wells digs deeper into the lives of the Ya-Ya offspring (better known as the Petites Ya-Yas) and further explores some of the male characters, especially Vivi's husband, Big Shep.
While insisting that the Ya-Ya books are not autobiographical, Wells says she bases many of her characters on the memorable women and men she knew as a girl growing up in a heavily Roman Catholic area of central Louisiana.
"In each of my books, the power of Catholicism has had a strong presence," Wells said. "And in this new book, we see this particularly with Vivi, as she struggles to make her peace with what was for her a very restrictive, punishing religion which treated women as impure sources of temptation, instilling guilt so deep it reached a cellular level."
With the huge success of the first two books, which collectively sold more than 8.5 million copies in the United States and spun off a hit feature film, HarperCollins is counting on a big showing for "Ya-Yas in Bloom," ordering 500,000 copies in its initial run.
But Wells' lingering illness means she may do little to promote the book. She's agreed to answer a few questions from participants in AOL's book club, which selected "Ya-Yas in Bloom" as its latest pick. And she helped redesign the Ya-Ya.com Web site, whose "Gumbo Ya-Ya" chat room has become a cyber sounding board for women seeking connections.
"In our present complex age, it is especially important to prioritize friendship and cultivate it like a beloved garden," Wells said. "Many women have told me that they read my books, and found encouragement to renew, expand and create unions of women that help them grow, change and weather the inevitable storms of life."
Wells makes her home on an island in Puget Sound, where she lives with her husband in a hillside home with sweeping views of the water. And as she begins work on her next Ya-Ya book, she has worked on accepting her new limitations while rejoicing in her continued gifts.
"The redheaded firecracker that I used to consider myself to be is passe," she said. "At first, I mourned losing her. But now I'm getting used to a more mindful way of being that is more about love than about time. That redhead I used to be moved too fast anyway."