Sunday, November 14, 2010

Willing To Be Misunderstood

I’m about to do something I’ve never done before  which is to publicly write about my health challenges. Unfortunately, I have a long history with auto-immune disorders. My first diagnosis was Myofascial Pain Syndrome. A few years later it was Fibromyalgia. Five or so years after that I was diagnosed with Lyme Disease. More recently, the diagnosis has been Chronic Fatigue Syndrome (CFS). In my opinion, CFS is the “end-all” of the multitude of non-life-threatening auto-immune diseases. In other words, if you have a history of having to battle life’s “normal” challenges while coping with a compromised immune system at the same time, you will eventually end up in the deep, dark medical-pit called CFS. Now, I’m no doctor. I’m merely speaking from my own life experiences.

What gave me the courage to speak on this subject publicly was a USA Today article that was lovingly brought to my attention by my super-supportive husband. This article is about the author of the bestselling non-fiction book recently made into a movie about a long forgotten, sweet-natured race horse, named Seabiscuit. This inspiring story of the underdog race horse gave hope to thousands of Americans during the Great Depression. This esteemed first-published-book author, Laura Hillenbrand, has been house-bound for the past ten years due to a quite serious bout with the mysterious disease dubbed CFS. Despite her condition Ms. Hillenbrand became a shooting star in the publishing world. The article describes this author‘s difficult circumstances by saying, “CFS, a mysterious and debilitating malady with a trivial-sounding name, has turned the 43 year-old into an unwilling recluse, a modern-day Emily Dickinson.”

This article goes on to introduce her newly-released non-fiction book, Unbroken. Ms. Hillenbrand’s second book is about an Olympic runner and WWII bombardier who survived his plane being shot down over the Pacific and then being held captive by the Japanese. During his captivity, Louis Zamperini was continually beaten and starved. The author stated she could truly relate to his pain and suffering during his captivity.
In the case of Ms. Hillenbrand, CFS has so debilitated her body that she cannot leave her home. All her interviews are conducted by telephone or emails. Mr. Zamperini has held 75 lengthy interviews with the author, yet he has never met her in person. Reportedly, Hillenbrand is able to type on a key-board but cannot read a book because looking down exacerbates her vertigo one of the many symptoms of this condition.

Ms. Hillenbrand speaks about her passion to write by saying, “I have an illness I cannot defeat, so I’m interested to see how other people have endured great hardship.” And, finally, she stated the following about what suffering has taught her, “I would never say ‘Thank God I got CFS.’ But, yes, suffering can make you more compassionate.”

Why am I writing about Laura Hillenbrand? I’m not sure. However, I suppose it’s partly because I can instantly identify with her plight. She’s an author and she suffers from CFS. The fact that she’s a highly successful author who has endured this mysterious, trivial-sounding condition since 1987 seems to impart something to me that I obviously hunger for validation.

CFS was recognized as a disease in 1988 by the Center for Disease Control and Prevention. Yet it’s cause remains unknown and there is no known cure. It’s also known as Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS). Because there is no scientific test to determine the validity of this disease and there is currently no known cure, some sufferers like myself are prone to feel weird, weak even ashamed of ourselves. I occasionally feel as though I have something akin to leprosy! Some shameful thing that simply must be hidden from the outside world.

The USA Today article published a very nice, recent author’s photo of the 43 year-old Ms. Hillenbrand. In this picture she looks as healthy as a “horse” (pun intended since Laura dearly loves horses). That’s another part of the problem of being diagnosed with CFS. There are absolutely no visible signs of just how much the normal, healthy-looking person may be privately suffering.

Whenever I go out, people tell me how great I look. I believe they are being sincere because I don’t go out of the house unless I feel well enough to look my best. Some people in my circle of friends and associates think I’m faking being sick so I won’t have to do anything I don’t want to do. So I can say, “I’m sorry. I can’t attend that social event because I don’t feel well.” or “I’d love to have you over to my house but I’m just not up to it.” What my circle is never permitted to see once they’ve just seen me out and about looking fine and appearing to be perfectly healthy - is the huge “crash I routinely experience after any social outing. During these crashes I literally cannot lift my head off the sofa. And, it’s not because I’m so “fatigued”. It’s because I am in excruciating pain and feeling as though I’ve just come down with a terrible case of the flu.

I can’t speak for anyone else, but what CFS means to me is extreme pain all over my body, a sense of imbalance, vertigo, nausea, sleep problems, severe brain fog and confusion, poor powers of concentration, headaches, earaches, alternating feelings of fever with chills or hot flashes, varying levels of anxiety, and, finally, depression. Consequently, the way that I’ve come to understand this mysterious condition is to realize that every single bodily function requires energy. Blinking one’s eyes uses a certain amount of energy. When your body literally becomes “stuck in a never-ending energy-depleting loop of fighting auto-immune dysfunctions, all the body’s energy is expended and thus depleted. The afflicted person has no energy reserves to call upon. Therefore, a simple luncheon with friends or an hour of routine housework can burn up all the body’s available energy. The end result can be what Laura Hillenbrand was quoting as saying, “Sometimes it hurts to move my eyes.” That’s the overwhelming characteristic of CFS to me unexplained, extreme pain all over the body.

In my preceding post I applauded the huge success of my first book-signing event. After much behind-the-scenes preparation, I was able to “meet and greet” all the people who appeared at my table to purchase my book. I stayed at my post for almost nine hours without a meaningful break. To me, that was nothing short of a miracle!

Part of the behind-the-scenes preparation was that my best friend, Linda, was at my side ready to take my place if I needed to remove myself from the event. Also, my always supportive and very wise husband stood nearby to oversee everything and to lend a hand if and when he was needed. Without my husband and Linda, I don’t think I would have had the courage to attempt to conduct such an energy-depleting occasion. Thankfully, all went wonderfully well.

During the weeks following the book-signing, several concerned, loving friends commented to me on how well I held up for the event. However, what they didn’t see was the ugly aftermath! No one but my husband had the opportunity to witness the devastation inflicted upon my body by that festive event. Yes, it was certainly a miracle. But even miracles sometimes come at a high price.

Again, why am I writing about this? I’ve managed to sort through my emotions and have narrowed it down to two primary purposes. First, as already stated, I felt marvelously “validated” by reading about a successful author who suffers from the same condition as myself. And, secondly, I felt extremely “encouraged” by reading about Laura Hillenbrand. Her case is much more serious than mine. Yet she has chosen to be “powerful” not “pitiful”. Even though CFS has caused her to become a suffering prisoner, much like the subject of her new book, she doesn’t allow it to keep her down. She can’t overcome her disease nor can she ignore it. Nonetheless, she has chosen to work around it without allowing the disease to stop her from pursuing her passion.

I too have chosen to become powerful. I choose to pursue my passion. I choose to follow the wonderful example Ms. Hillenbrand has set for overcoming life’s difficulties through the power of passion. Let’s all band together and move forward toward our purpose with the power of our passion. How divine!