Rebecca Wells, YaYa Sister

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, Sep 7, 2008.

  1. Missizzy

    Missizzy New Member

    I came across this letter from Rebecca Wells, author of the Ya-Ya books. I did not know the degree of Ms. Wells' suffering. I will post the letter below. It is also available on her web-site.


    Ms. Wells' letter:

    Dear Ya-Ya Community,

    From my quiet home on an island near Seattle, I'm writing to share my
    joy with you at the publication of Ya-Yas in Bloom. Thank you for helping welcome my new novel into the world! At the same time that the buds on the cherry trees that grace the woods near my home are opening, this new book is blossoming.

    Spring! A new book, a new beginning!

    I'm also writing to give a special welcome to those of you visiting for the first time. This is a place where you can find friends, support, humor, and inspiration. Not to mention plenty of Ya-Ya fun. For those of you who have been part of this online sisterhood for some time, I send you my warm affection.

    I'm thrilled to have a new novel out. As attention turns my way, I ask myself the questions: "What are the life blessings right now?" and "How can I be of service?" I listen to Bob Dylan singing "Gotta Serve Somebody" over and over these days. I want to do what I can to serve others who are suffering. I have a spotlight turned on me right now. It's my job to direct that light where it's most needed.

    I think of Ya-Yas in Bloom as a miracle baby. I'd like to tell you why.
    During the same time in 1998-99 that my novels, Divine Secrets of the Ya-Ya Sisterhood and Little Altars Everywhere introduced the Ya-Yas to millions of readers, and the hot white light of success hit me as a #1 New York Times best-selling author, I was getting very sick and did not know it. At first I thought I just had a recurring case of bronchitis. I didn't foresee the difficult journey that lay ahead of me.

    Things went from one weird symptom to the next, then a whole cocktail of symptoms just to keep things jumping. Right when I thought it couldn't get worse, it did. Again and again. I stopped saying "Things can't get any worse than this." Those who have suffered know it CAN get worse.

    Years went by in which I did not know what was wrong with me. I was told maybe I had epilepsy, maybe I had dystonia, maybe if I only took the latest miracle anti-depressant that all my symptoms would magically disappear. (Pause very carefully if ANYone tells you that.)

    In the last seven years, my symptoms have included severe respiratory infections, intense muscular skeletal pain, severe fatigue, Multi-Chemical Sensitivity (MCS), hunger for air, extreme sensitivity to light and sound, seizure-like events, and freezing hands and feet (probably due to peripheral neuropathy). Weakness in my lower limbs has been one of the most physically dangerous symptoms because it can -- and has -- led to falling down.

    At times I was so deeply fatigued while writing this book that I could not lift my hands. When I was very ill, I lay in my bed and talked my book into a tape recorder, which was later transcribed. There were many times when I had to use a wheelchair to get to the door of my writing room, then be lifted by my husband into my writing chair because the door was not wide enough for the wheelchair to get through.

    To finish this book I had to accept the situation I was in and find ways to work that respected my limitations. I realized that I was being given small packets of energy to be used wisely. Once I accepted this I was able to complete the book.

    Ya-Yas in Bloom is for me a victory of the imagination over my illness and fear. The delivery was painful, but grew less so when I began to humble myself to the power of writing to help me keep going. When I was in the bleakest of times, before I was diagnosed or treated, writing this book kept me going. I love these characters, and their stories helped heal me. Writing can save.

    Like any act of creation, whether baking a pie or chopping wood, it can dispel the dark. Ya-Yas in Bloom, if I really let it, reminds me that miracles are possible for me, right here, right now.

    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.

    The incredible community has supported one another through both health and sickness. You Dahlin Gumbo Girls have held the hands of so many online Ya-Yas as they have dealt with a variety of health issues. I did not avail myself of that kind of community. I was afraid to let people know I was ill.

    On some level, I bought into the unhealthy belief that many of us suffer from: the idea that we should have been able to control everything. That somehow, we must keep up with this increasingly fast-paced culture we live in, no matter what the expense is to our body. My illness has taught me differently.
    After having seen 12 different doctors, I was not correctly diagnosed until my wonderful environmental health doctor, Dr. D, who treated me for chemical sensitivity (MCS), thought to test me for Lyme Disease. I received the results of the lab tests on Election Day, 2004. I tested positive. Now that was a day for news. Whew, boy.

    I immediately went online to learn more at
    Lyme Disease is the most widespread disease that is carried by ticks or insects in the United States. It is crucial that all of us, especially more doctors, become educated about its symptoms, diagnosis, and treatment. People are suffering, and sometimes dying, unnecessarily. This cannot stand.
    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 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.

    Now that I've been diagnosed, I have begun to reach out to more people, tell them the truth about my life and ask them for support. I know more deeply than ever that friends are everything. I need support from every corner of the universe to make it through this.

    I have advanced Lyme Disease. This, along with other factors dictates the course and design of my treatment. I've taken several rounds of antibiotics to try to eradicate the bacteria and will have to take more. In addition to Lyme, I also have a malaria-like infection called babesiosis which I probably got from the same tick or insect which introduced the Lyme bacteria into my body.
    Anti-malarial medication and antibiotics are treating the babesiosis. My doctor has temporarily stopped treating the Lyme until the babesiosis has been dealt with. After that I'll resume Lyme disease treatment with more antibiotics.

    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. I am blessed beyond measure for so many reasons, one of which is being able to afford good medical care. I only wish this were true for everyone.

    I'm trying to take everything one day at a time. To wake up every day and play the hand I've been dealt as best I can. I'm discovering what we all have to learn eventually: attitude, not external circumstances is what determines happiness. Happiness does not depend on having a healthy body. It has to do with taming the mind, with learning to accept each moment. Prayer, meditation, healing imagery, and kindness sustain me. The ever-constant love of my husband holds me up. He has never wavered in his love and support. The knowledge that there is a divine presence much larger than myself who loves me unconditionally and who wants my happiness sustains me. As for success, I define it differently now. As Vicki Baum puts it: "A woman who is loved always has success."

    My suffering has opened my heart more fully to the suffering of the world. When I have a malaria-like infection, how can I not feel deeper compassion for the 2 million people, mostly in Africa, who die of malaria each year?
    These days I am slowly getting better. I am blessed to walk into my writing room on my own, sit down, and write. At present, because my hands are so cold, I wear gloves to type, and use a heat lamp to warm the area above the keyboard. My doctor feels very confident that once Lyme is cleared from my body, the effects of what is probably peripheral neuropathy in my hands and feet will go away.

    Now, when I'm at the computer, I set a timer for 20 minutes, then get up and walk around and stretch. I don't work for 12-14 hours a day like I used to. I pace myself and try to listen to my body. The mind is not always one's best friend, period. It will try and sucker you into being a perfectionist workaholic if you're not careful. We all have to listen to our bodies; I just need to listen much more carefully than most others do. I have to not go past my body's limit -- whatever it is on a given day. I have to be extremely careful about keeping stress to a minimum.

    In terms of a prognosis, there is every good reason to believe that in time, with continued treatment, my body will rid itself of Lyme and babesiosis and that I will grow much, much healthier. I take hope from my colleague and friend, the writer Amy Tan, who was once so sick with Lyme Disease she could not walk one city block. After two years of proper treatment, she's just back from trekking in Bhutan!

    Writing Ya-Yas in Bloom required much emotional and physical energy from me for a very long time. The grace I received is that the stories contained in my book truly did blossom forth with their own powerful energy into my life, and that energy sustained me during the times when I was unable to work and was struggling simply to survive.

    For the hardback edition of Ya-Yas in Bloom, I'm doing promotion from home. How I'll miss my bookseller friends and meeting y'all -- all my readers, those of you who've already read Little Altars Everywhere and Divine Secrets of the Ya-Ya Sisterhood, and those who are just meeting the Ya-Yas for the first time in my new book. (And yes, not touring will also make me miss dressing up and prissing across the stage to embody the characters of the Ya-Ya universe, as the actress in me does love to do!)

    As those of you who visit the website regularly probably know, there is nothing I like more than blasting up some good music and dancing in my living room. Especially when the moon is full. I'm not always strong enough to do that these days. But when I can, it is more special than before, because every single movement of my dear body, which bears so much so valiantly and does its best to fight infection, is a further sign that I am loved.
    I urge you all to learn more about Lyme Disease and become involved. Educate yourselves, your children, your friends and family, and ask your doctor to learn about Lyme Disease. Visit Please do what you can do, from right where you are right now.

    When we give, when we help, WE ourselves receive a gift. No matter what our circumstance, we are most blessed when we share with the world.
    I like to imagine how the Ya-Yas -- Vivi, Caro, Teensy, or Necie -- would respond if one of them was diagnosed with advanced Lyme Disease, or any disease, for that matter. There would be no stopping those women. I can see them now!

    Thank you all for taking the time to read this. I deeply appreciate any prayers you might choose to send my way. If not prayers, then maybe some of Ya-Ya Necie's "pretty pink and blue thoughts." I've come to understand that the two are very closely related. I hope your reading of Ya-Yas in Bloom will bring you what it brought me as I wrote it: laughter, tears, and some healing along the way.

    84,000 Blessings . . . and

    Rebecca Wells

    Rebecca Wells is not a doctor or medical professional. The information provided in anywhere on this site should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Rebecca Wells makes no representation or warranty regarding the accuracy, reliability, completeness, currentness, or timeliness of the content, text or graphics. Links to other sites are provided for information only -- they do not constitute endorsements of those other sites or any physician, product, or service they may recommend. Copyright ___ 2006, Rebecca Wells

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  2. gapsych

    gapsych New Member

    What a poignant post. Thanks for sharing.

    I think anyone with a DD, can identify with this.

    At first I did not recognize her name but then when Ya Ya Sisterhood was mentioned, I knew who she is.

    Amy Tan, who wrote The Joy Luck Club, also has Lyme. Late stage to the point that she was hallucinating.

    I may have told this story before, so if I have, I apologize for my foggy mind.

    Amy Tan, was not always sure if she was hallucinating. Most of her hallucinating involved seeing people she knew standing in the room. What she did was to have her dog with her most of the time and if the dog barked, she knew that there really was someone in the room.

    What a novel take, excuse the pun, on therapy dogs. Sometimes we have to be creative for our DDs, eh?

    Take care and hope you are doing well.

    [This Message was Edited on 09/07/2008]
  3. luvdogs

    luvdogs New Member

    I finally found you! I sent you a few e-mails but have received no response. LionMama told me you had been really busy with your family. I was glad to hear that you were ok (I assumed, and now assume from your post).

    Rebecca Wells and Amy Tan are two of my favorite authors. And since I read a lot (or used to, until my eyes started acting up), I was very sad to hear about their illnesses. Authors can be like old friends.

    I would love to hear any news about all the generations of your family. My father gently passed away last week. I am trying to bounce back from surgery. Only it isn't really a bounce, more like a bumpety bump bump.

    I hope our live conversation didn't put you off. I guess I was a little nervous, and then there's the brain fog. The brain fog makes me forget things off and on. I do have my moments of lucidity.

    Oh yes and don't our canine companions serve us well. Even if only to remind us whether a hallucination is real or not.