(Buffalo-AP, March 1, 2003) -- Amy Tan has been concealing a secret that has caused her a lot of sleepless nights. For three years, Tan has been in severe pain ... and afraid. She has late-stage Lyme disease.
Her prognosis is uncertain, but, in a recent telephone interview, the best-selling author of "The Joy Luck Club" said she is hopeful that she will slowly regain her health.

"It's kind of wrecked my life in a lot of ways," said Tan, 51. "I'm being treated. Things will get better ... they can't possibly get worse."

Tan's illness first appeared three years ago, at a time in her life when things should have been getting nothing but easier for the novelist, who will speak at the University at Buffalo March 26.

Her writing career had sustained - and built upon - the momentum generated by "The Joy Luck Club," her first book, which became an international best seller in 1989.

Still a young writer, Tan found herself in the unique position of being universally adored. Book clubs loved her; so did college professors. Chinese-American women called her a role model. She co-wrote the screenplay for her novel, which became a popular movie.

But Tan knew something was wrong when she began waking up every morning with a sore, painful neck.

At first she thought it was her pillow. So she began to buy new pillows, one after the other. Then, she noticed a spot on her skin that she thought looked like a rash, or a spider bite. It didn't look like the traditional "bull's-eye" mark of a Lyme-infected tick bite, so Tan, an active outdoors woman, didn't worry.

Extreme fatigue followed, and more pain. Tan was hospitalized for brief spells. No one knew what was wrong with her until she saw a doctor who specialized in diagnosing and treating Lyme disease. The verdict: positive for chronic neuroborreliosis, or Lyme disease of the central nervous system.

Tan was relieved to finally know what was wrong, but devastated by the answer.

"It was such a mysterious illness to me for so long," she said. "Things are a little sticky when it gets to be late-stage."

Nowadays Tan is undergoing regular treatment, she said, and slowly starting to feel better. She takes things day by day.

According to federal data kept by the Centers for Disease Control in Atlanta, about 16,000 Americans contract Lyme disease each year, usually by being exposed to infected ticks, carriers of the disease.

"I think it's important for people to realize that it's a much more common disease than people expect," said Tan.

Tan has been writing as much as she can, despite her illness. She has two new books about to debut. In the fall, a nonfiction book of essays and musings called "The Opposite of Fate" will appear. Next year, she plans to publish her fifth novel, which she isn't ready to talk about.

"The Joy Luck Club" was chosen as a finalist for the National Book Award and the National Book Critics Circle Award. In 1991, Tan published "The Kitchen God's Wife," which quickly rose to the No. 1 spot on the New York Times best-seller list. In 1995, "The Hundred Secret Senses" was published, followed by "The Bonesetter's Daughter" in 2001. She has also written two children's books.

Tan, who lives in San Francisco and New York City with her husband of almost 30 years, attorney Lou DeMattei, was born in Oakland, Calif., in 1952.

Her Chinese family, living in America, faced many of the same situations as other ethnic families. Being Chinese-American in the 1950s and 1960s constituted an "otherness," for families such as hers, in much the same way that people of other ethnicities were disassociated from the larger American culture around them over the years.

Tragedy, superstition and mystery form a strong subtext in Tan's novels.

Tragedy came into her life at a particularly difficult age. She was 14 when both her father and her brother Peter died of brain tumors. Peter died in 1967, her father in 1968.

That left Tan, her mother, and one younger brother as the only members of the household. There were some very tense times, Tan recalled, as she grew up under her mother's watchful - and sometimes highly critical - eyes.

"She wanted us to mourn them all the time," said Tan, stressing the last three words. "We didn't want to do that. We wanted to forget. It was difficult, because at the time, people didn't seem to be forthcoming with offers of counseling. That would have helped."

Tan's mother died of Alzheimer's disease in 2000.

(Copyright 2003 by The Associated Press. All Rights Reserved.)

Could it be? All the dates and ages fit.

Very nice article! I do hope she has a good LLMD and is getting the BEST possible help!

I am sorry to see she is scared and in pain. Wonder if she could find us here and we could help her out in some way?

BUT... Do ya think she would hold it against us if we didn't read her book? If so... I am in BIG trouble!

HEY.. I have at least HEARD of it.... and I've heard of the movie too.... but I didn't see the movie either. Bad meeeeeee.....

Maybe Mel Gibson would take me to see the movie? I think I will ask!

Ok.. nighty night.

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The ducks interpretation of Lyme has been challenged by those who research it, diagnose it, treat it, and live with it, and they don't have, in my opinion, a plausible alternative explanation as to what is going on.

You inspire me! And I want you to get well so you can be in the Rock Bottom Remainders again and sing your heart out.

:-)

She thought the article, which was supposed to be on her upcoming talk in Buffalo and not her illness, was great for Lyme awareness, but highly erroneous about what she actually said.

For one thing, she has not been concealing a secret for three years that she has Lyme Disease. She did not even consider Lyme disease until recently and was not diagnosed until February. On the other hand, she did have symptoms for over three years and it is neuroborreliosis.

She told the reporter: "Things are going to get better. Now that I'm diagnosed and being treated, thing's can't possibly get worse."

That was edited to: "Things are going to get better...they can't possibly get worse," making it sound like she was teetering on the brink of death, which is when she'd actually utter such dire words.

She said the disease has "wreaked havoc on her life," not that it "wrecked her life."
She also said, "Then again being in a rock band at age 51 has done even more to wreck my life."

She told me emphatically she is not scared and in pain. She acknowledged pain in her arm and shoulder, but that is much better since she started antibiotics. The AP story made it sound like she was on morphine and huddled in a dark little corner in an asylum. She is actually conducting her life pretty much as it comes along but has to take frequent rests. She takes ibuprofen for pain.

Part of the reason she is not scared is that she found this message board and registered under a pseudonym with a literary bent. It has been extremely helpful, she said, and she sends kudos to all its members and the way they support each other and give each other really great advice and constant 24 hour support. The Lyme board was how she learned she had to see a LLMD pronto and nothing else. That is how she was diagnosed using the Igenex Western Blot. She said she's gotten a ton of other advice by gleaning through the archives.

She said to those who had not read her books, not to worry, she hasn't read them either. Or rather, she can't remember whether she has, because that's a Lyme brain for you. She told Tincup that maybe she really had seen the movie and maybe just didn't remember she had.

As to being a spokesperson-- "not that anyone has asked," she said good-naturedly-- but she wants to "concentrate on getting well" and doing her work, for which she is "way, way overdue," and that is causing her anxiety. But at every opportunity she can and is appropriate, she will try to "increase awareness of the rising prevalence of Lyme disease, the difficulty of diagnosing it with current tests, the importance of Lyme literate doctors, the absolute need for longer and multiple treatment for chronic cases, the huge problem many of its victims face when insurance does not pay for treatment of a disease that is often devastating."

Having been made aware of the controversies as well, she is treading carefully about what she says now and to whom. This is not, she emphasizes to protect herself as much as to make sure the right information gets out. She has some friends in national TV and with local affiliates and will carefully inquire into what the media perceives are the issues before steering them toward a possible angle.

She is sorry she can't reveal who she is on this board. She would really like to maintain her privacy on this board like everyone else and not have her medical information and problems revealed to others outside of this board. She also wants to be treated like everyone else going through this.

Oh, and she did say she plans to continue to play in that really bad rock and roll band, which will perform in Seattle, San Francisco, and Los Angeles in April. So either she is really brain damaged by Lyme, or it's proof that Lyme can't beat her down.

I can see where we need a spokesperson but considering the truth behind the article I too would be concentrating on something besides the press and their erroneous reporting. Way too stressful!

Ps. I love pooches! What kind of pooches do you have?

quote:

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Originally posted by Lymelight:
Pooch, very interesting story, indeed...
Fuzzy Lyme brain is a real detriment when it comes to remembering chords, lyrics, tempo, etc. Then again, fuzzy Lyme brain isn't good for anything that requires cerebral activity. LOL!

---

Are you a musician? Has there actually been research done on this area? I think it's really interesting how neurological Lyme Disease affects a person musically. I, for one, realized something was wrong with my brain when I could no longer tap my toes in rhythm and sing at the same time.

Poochini

But seriously, you bring up a good point. I could play long pieces of music by heart until I got Lyme. Now I need the sheet music in front of me. My timing was excellent and I didn't need a metronome. After Lyme, I can't seem to keep tempo. I could also sing and play at the same time. Unfortunately, my Lyme brain can't seem to keep both synchronized. Additionally, my arthritic fingers have become a problem as well. Alas, the quality of life deprecating elements of Lyme...

Thanks for the explanation... I am glad she is not scared and not alone. That is no place to be. And I am glad she found some help here all ready.

And if she has YOU for a friend... her world is indeed a more special place.

And ding dong to the reporters who messed her around... NOT cool. It must be hard being "on guard" all the time and still having things like this happen.

You said...

"The AP story made it sound like she was on morphine and huddled in a dark little corner in an asylum."

No.. she is just in a rock band...

Geeze... can't they get ANYTHING right?

We all know there is a BIG difference...

I guess I should say I have heard of the band and heard her sing.. or play music.. or what ever it is she does.... ESPECIALLY since I've done stuck my BIG foot in my BIG mouth saying I hadn't read her books. She has gotta figure I am a real stupid toad right about now.... if she didn't before now!

You said..

"She told Tincup that maybe she really had seen the movie and maybe just didn't remember she had."

HA! Funny one! And she is right... That is VERY possible!

Ya know... I HOPE she was kidding around about that... or maybe not? YIKES!

Please tell me she wasn't one of the ones I called a little baboon.. or better yet.. a "goof ball" or a "goon"!

Or maybe I threw out a nicer remark her way... something like.. "big old corn fed mule".

I REALLY need to watch my mouth! hehehe

You said...

"She is sorry she can't reveal who she is on this board. ...She also wants to be treated like everyone else going through this."

If she wants to be Rin Tin Tin.. or Pickled Pigsfeet... it ain't no matter to me. We all put our pants on the same way around here.. one leg at a time.

Everyone is welcome.. and everyone is working towards the same goal... getting our lives back.

Please let her know we are here if she needs anything.

Now it is off to bed or off with my head! It's almost pumpkin time!

And guess what we had selected for that trip - - Amy Tan's "The Joy Luck Club" (abridged version, read by Tan herself). We were really swept away by her stories of courage amidst suffering. It was a moving experience - - inspiring, highly therapeutic and encouraging on a personal level.

So I had all this on my mind when I read that Amy Tan herself has Lyme! For me, it was one of those amazing convergences of fate that felt like a personal lift from a higher source.

If Amy happens to be reading this, thank you so much, and please know that you have unknowingly helped at least one person deal with Lyme Disease in a very meaningful way!

How is Ms. Amy doing these days... anyone heard?

Thomps said..

"So I had all this on my mind when I read that Amy Tan herself has Lyme! For me, it was one of those amazing convergences of fate that felt like a personal lift from a higher source."

It was a kind act indeed for her to come forward. Glad she could help you and so many others.

I do hope she is doing better now.

Here is another post that may interest folks...

http://flash.lymenet.org/ubb/Forum1/HTML/018714-2.html

http://flash.lymenet.org/ubb/Forum7/HTML/000026.html

But...that is always a guarded scenario at best.