Posted on Jul 26, 2015 in Blog |
This story was written i think back in 2005, but i found it most helpful.
I have advanced neurological Lyme disease. It affects the way I think, move, write, read, eat—every aspect of my life.
During the same time in 1998-1999 that my novels, Divine Secrets of the Ya-Ya Sisterhood and Little Altars Everywhere introduced the Ya-Yas to millions of readers, I was becoming 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 kept developing. I stopped saying, “Things can’t get any worse than this.” Because they did, again and again.
Years went by in which I did not know what was wrong with me. I was told maybe I had a brain tumor, perhaps epilepsy; maybe I had dystonia, maybe if I took the latest miracle anti-depressant all my symptoms would magically disappear. (Pause very carefully if ANYone tells you that.)
In the last seven years, my symptoms have included 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 dangerous symptoms because it can—and does—lead to falling down.
At times I was so deeply fatigued while writing Ya-Yas in Bloom that I could not lift my hands. I often 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 Ya-Yas in Bloom 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. Like any act of creation, whether baking a pie or chopping wood, creativity can dispel the dark. Ya-Yas in Bloom 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. I had bought into the unhealthy belief that many of us do: that we should be able to control everything. That we must keep up with our increasingly fast-paced culture, no matter the expense to our bodies. My illness has taught me differently.
Even after seeing twelve different doctors, I was not correctly diagnosed until my wonderful environmental health doctor, Dr. B, 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 and other insects in the United States. It is crucial that all of us become educated about its symptoms, diagnosis, and treatment. Particularly in its advanced stage, Lyme Disease can be very difficult to diagnose. 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 has been reported in every state except Montana. The Center for Disease Control estimates the actual numbers of those infected each year is at least tenfold of what is documented as cases. Some Lyme specialists believe the numbers are even much higher than that.
Now that I’ve been diagnosed, I have begun to reach out to 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 am aware that my late diagnosis means I am in this for the long haul, perhaps even for life.
Unfortunately for most people, insurance covers very little of the cost of Lyme-related doctor visits and treatment. My out-of-pocket medical expenses are staggering. I am now part of a club of people with a stigmatized disease that many doctors refuse to touch. While I am lucky enough to have a doctor who is willing to provide open-ended treatment, many of my fellow Lyme patients have gone without appropriate care. As a consequence, they have lost their health, their jobs, their homes, their marriages, and even their lives. 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: that 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, as well as the knowledge that there is a divine presence much larger than myself who loves me unconditionally.
In terms of a prognosis, there is every good reason to believe that in time, with continued treatment, I will get much better. I take hope from colleagues and friends like Amy Tan and Jordan Fischer-Smith, who have been in treatment longer than I, and who have generously given me support and counsel. I also participate with a wider Lyme community online where I find information and solace. I am so lucky to have a girlfriend here on the island, darling Mei-Mei, with whom I share a similar diagnosis. Our frequent conversations and visits are a touchstone for me. Without my new Lyme friends, I would be one lonely Ya-Ya.
I urge you all to learn more about Lyme Disease and become involved. Ask your doctor about it and educate yourselves, your children, your friends and family. If you are bitten by a tick and suspect you have been infected, go see a Lyme-literate physician. Get treated early and adequately. Don’t wait, as I did, and let a treatable disease turn into a chronic one. For more information or to make a donation, go to:
Take sweet care. Keep laughing, no matter how dark things may seem, and count your blessings one by one by one.
Many prayers and all good wishes, Rebecca Wells