Friday, July 07, 2006

Moving toward normal

Moving toward normal In a long battle with chronic fatigue syndrome, writer talks of her day-to-day victories and medical progress.

By JOAN MORRIS Contra Costa Times
Published Friday, July 7, 2006

Dorothy Wall's Oakland, Calif., home, not far from the University of California, Berkeley campus, is a model of linear simplicity.

Bookshelves line the walls in perfectly straight lines, and the furnishings are sparse both in number and design. The hardwood floors that diffuse the glow of the afternoon sun are arranged in rows of narrow planks.

It is the home of an organized mind and an ordered life that should be, but isn't, at odds with Wall's creative life work, that of a writer and writing consultant. Does the home speak more to Wall's style or her illness? Even Wall isn't sure. So much of who she is these days is related to her almost-30-year march alongside chronic fatigue syndrome.

The disease can render its sufferers virtually invisible, confined by a nebulous illness and often ignored by a public that doesn't understand or appreciate the true nature of their disease. But inside the confines of her home, Wall is very much a solid figure, in control of her environs and her life. And with her recently published book, "Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome" (Southern University Methodist Press, 352 pages), Wall is attempting to give a voice and a face to the illness.

It wasn't always so. When Wall developed the chronic disease in 1978, she had no idea what she was suffering from and neither did the doctors who treated her symptoms, lectured her about burning candles at both ends and tried to send her to therapists to deal with her "issues."

Whether they vocalized it or not, there were those who labeled Wall a malingerer. There was no cause for her illness; therefore, there was no illness.

But Wall, who jokes she was never on the forefront of a single trend until 1978, was one of the first to fall victim to what later would be called chronic fatigue syndrome.

In the late 1970s and early 1980s, hundreds of people were going to their doctors complaining of odd symptoms. Doctors at first didn't recognize the pattern; and many patients, including Wall, were told there was nothing wrong with them.

Wall was in the middle of an upheaval when she fell ill. She was a single mom going through a messy divorce and trying to rebuild her social life. She also was finishing up graduate school and working four days a week at a bookstore. She drove herself to the point that when she contracted mononucleosis, it hit her particularly hard. She now believes that might have been the trigger that soon brought on her CFS.

At first, Wall thought she was suffering a recurrence of mono. Or perhaps she'd picked up another virus or the flu. When her symptoms worsened, she saw a doctor, who prescribed antibiotics and suggested she take it easy. But weeks went by when she was too ill to function. She lived in a fog, racked with pain and with barely the energy to take care of her daughter.

One morning she awoke to realize that after two months, she genuinely felt better. The next day, she had a relapse.

"That's when I knew I had something else," Wall said. "I just didn't know what."

For the next 15 years, Walls said, she "passed." Passed for healthy, passed for normal, passed for happy. But she wasn't. Somehow she struggled through, watching as doctors scoffed at those like her and as the disease became a national joke, called the "Yuppie Flu."

But every year she grew a little stronger. She was never well, but she became less ill. And the better she felt, the more she pushed herself.

"People who cope with this illness try to cultivate the normal," Wall said, "including things in your life that normal people have - lunch with a friend, reading a book to my grandson, working. You work really hard to have those things."

But Wall pushed too hard, and in 1995, she had a complete collapse. She was unable to leave her bed for more than an hour a day, and it has taken her 10 years to get to where she is now. Wall rarely leaves her home for long and must allocate her time. She works from a home office, spending a few hours on the computer, a few on the phone.

She is like an energy miser, carefully doling out her precious coins of energy. She functions well, she said, if she stays within her "energy envelope." Venture too far outside for too long, and the price is dear.

When health experts realized they were dealing with a real disease, they began looking for a way to diagnose it. What they discovered is that while the onset of the disease might be different for some, there are three distinct symptoms that define CFS: overwhelming pain, crippling exhaustion and a brain that seems locked in a deep fog.

Early research focused on finding a single cause for the illness - a virus or pathogen, a chemical exposure, a genetic predisposition. Two decades later, researchers still have not identified the cause or a cure, but they now agree that any of those things can be a trigger that launches an attack. They've also discovered that CFS, or a type of the illness, has existed for many years, couched in euphemism of the time.

For Wall and others who have had the disease for many years, there is no expectation of a cure. They live by carefully managing their lives, monitoring their energy output and pacing themselves. Symptoms, from the pain to the occasional plunge into the cognitive fog, are treated with medications. The best they can hope for is to hold on to what they have.

For those newly diagnosed, the news is more heartening. Early treatment of symptoms and a slowdown of activity has allowed many to make a near-full recovery, although they must be forever mindful of the illness.

And more good news, Wall said, is that doctors are more knowledgeable about the disease and less likely to dismiss symptoms as "all in your head." Much work, however, is needed, she said. Of the diseases that get federal funding for research, CFS languishes at the bottom of the list.

It's not easy to live with the disease, Wall said, but it is easier than it was. The order she imposes on her life might, from the outside, make her appear as a prisoner in her home. She ventures outside little and follows a precise schedule to ensure she accomplishes what she can without pushing herself too hard.

The most difficult is accepting those limitations. The disease is with her always, but when symptoms flare, they typically focus on her throat, leaving it sore and raw and robbing her of speech. If she catches a cold, it's likely to leave her unable to speak for months at a time.

Reducing her exposure to cold viruses means reducing her contact with others, particularly her young grandson. In the winter, visits with him must take place outdoors, and she can't hold or touch him.

But when you think of Wall, don't think of her as a victim, she said. "I don't want CFS to define my life."


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