Author Rebecca Wells and Lyme Disease Part II



Author Rebecca Wells and Lyme Disease Part II


From On the Net:

www.ya-ya.com




03/28/2005
A Personal Letter About Lyme Disease
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
ya-ya.com 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 ya-ya.com 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. David Buscher, 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 www.LymeDiseaseAssociation.org.
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 www.LymeDiseaseAssociation.org. 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
BLOOM ON!
Rebecca Wells

© 2005, by Rebecca Wells




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