Amy Tan was in bed when she saw him: a nude man, hovering in the doorway. Assuming it was her husband, Lou, she called his name. No answer. "I reached over to touch the man, and my hand went right through him!" she recalls. "The only thing I could think was, 'Oh no! Lou has died and he's turned into a ghost.' "
In fact, her husband was watching TV in the living room, and the couple shrugged off the 2001 incident as a bad dream—until other visions came calling: two little girls jumping rope, a Victorian woman in a garden, a fat poodle dangling from the ceiling. "After the first one, I knew I was hallucinating," says Tan, 51. "I just didn't know why."
It would take two more years, after she had consulted 11 doctors and paid $50,000 in medical bills, before Tan would learn what was plaguing her: Lyme disease. Now, in a new collection, The Opposite of Fate: A Book of Musings, the bestselling author chronicles, among other subjects, her battle with the disease, which at one point threatened to end her career. "To not be able to write anything creative because you're just trying to hang on word for word—it was like being on a tightrope," says Tan, "and knowing you were going to fall."
Things only worsened as her symptoms progressed over the years. "Her mind was becoming more disorganized," says Lou DeMattei, 53, a tax attorney and her husband of 29 years. "She started to rely on me increasingly to do the simplest things for her, like go to the post office. It was a difficult time, as Amy was thrashing about for a diagnosis and she couldn't find one."
Such a predicament is not unusual for Lyme sufferers, whose symptoms are often so wide-ranging that a diagnosis can be difficult. For Tan, the trouble began in 1999, when she experienced a stiff neck, followed by joint pain, numbness, insomnia—and a strange rash on her leg. "I thought it was a blood blister," she recalls, "so I covered it with a Band-Aid and didn't really look at it anymore."
If Tan turned a blind eye to some of her symptoms, it was partly because she had other things on her mind: During that time her mother, Daisy—the inspiration for Tan's 1989 hit novel The Joy Luck Club—was dying of complications from Alzheimer's disease. Various doctors also chalked up Tan's conditions to stress and middle age. "I thought to myself," she says, "'My mother is dying and I can't sleep. What's so unusual about that?' " And yet, as the rash reappeared and spread, so too did a pervading sense of paranoia and the depression that Tan has struggled with all her life. "I had this overwhelming feeling that somebody was about to attack me," she recalls. "It was this constant anxiety."
In the summer of 2001 Tan embarked on a 40-city book tour to promote her novel The Bonesetter's Daughter. "I was exhausted," she says. "Any time I had any time off, I would sleep for almost 24 hours." Back from the tour, Tan began to hallucinate in earnest. But it wasn't until November 2002, during an appearance with her spoof band, the Rock Bottom Remainders (Stephen King and Dave Barry are bandmates), that Tan hit bottom. Flubbing "Material Girl," she says, "I was mortified."
She resolved to find an explanation for her deteriorating health. When she came across Lyme disease information on the Internet, "it was like watching This Is Your Life," she says. Thinking back, she recalled pulling ticks off her dogs, along with many hiking trips in woods in Marin County, Calif., where Lyme disease is endemic. Finally, last January she was diagnosed with the disease by Dr. Raphael Stricker, a San Francisco hematologist experienced in treating tick-borne diseases. "When Amy came to me, she was truly miserable," says Strieker. "Her symptoms were pretty advanced."
These days Tan takes an antibiotic to treat her symptoms, though she continues to suffer headaches, stiffness and numbness in her feet and must walk with a cane. "She still has episodes where she gets very, very sick," says Strieker, noting that she will need at least three months of intravenous antibiotic treatment (which she plans to undergo soon) to fully recover.
For now, Tan is concentrating on her book tour, as well as raising awareness of the disease through Lyme Aid4Kids, her new charity. "Setting up this organization is one good thing that has come out of my having Lyme disease," says Tan. The other? Taking antibiotics over the last year made her skin more sensitive to the sun. "It gave me a tan," she says. "So even though I may have felt terrible, people kept telling me, 'Gosh, you look great!' "
Alison Singh Gee in San Francisco
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