Worn Out At the Finish Line
Seabiscuit author paces herself
out at the finish line: Chronic fatigue forces author of "Seabiscuit"
to pace herself
For most, CFS symptoms don't go away, say officials at the Centers for Disease Control and Prevention. The agency reports only 12% of CFS patients fully recover. But a study by [David Bell], published in the May issue of the journal Pediatrics, found 80% of children diagnosed with CFS during a mid-'80s cluster outbreak in New York had improved by 1998. None of the children in the study had been diagnosed with the most serious cases, but Bell believes recovery rates for adults may mirror rates for children.
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But she cannot fully enjoy the success of her book, the best-selling and critically acclaimed Seabiscuit: An American Legend. She's too weak to venture out and see her book displayed on store shelves. She can't even leave her Washington, D.C., home for days at a time.
For the past 14 years, Hillenbrand, 34, has suffered from chronic fatigue syndrome, a debilitating disease that, since its discovery in the mid-1980s, still has doctors baffled. In addition to suffering extreme exhaustion, Hillenbrand has night sweats, is sensitive to artificial light and runs constant fevers. Her symptoms don't improve with bed rest and worsen with mental and physical exertion. A simple shower requires almost three hours of rest.
"(CFS) is absolutely intolerable at times," she says. "In the early 1990s I could not read or write (because of vertigo). There were months when I couldn't get down the stairs. I simply lay in bed and hung a watch on the windowsill and watched the time go by." To write the book, Hillenbrand had to sacrifice her social life and conserve all of her energy, essentially writing until she was physically exhausted each day.
'The yuppie flu'
There is no cure, but treatment can reduce a few of the symptoms for some patients, says David Bell, a national CFS specialist who was one of the first researchers to study the disease.
CFS was first noticed during several cluster outbreaks in the 1980s. At that time it was believed to affect only upper- and middle- class Americans and was termed the "yuppie flu."
Doctors still don't know what causes CFS, but some experts believe it may be triggered by multiple viruses, brain damage or problems with the autonomic systems, which control circulation, digestion and respiration. Since the outbreaks, researchers have investigated many viruses, including mononucleosis and human herpes virus-6, but have found no link to CFS, says Dimitris Papanicolaou, an endocrinologist at Emory University in Atlanta.
But the virus theory is supported by several studies that found the immune systems of CFS patients appeared to be under attack, says Anthony Komaroff, a Harvard professor who has conducted several government-funded studies on CFS. Researchers also have found white spots on the brains of CFS patients, he says, but they haven't been able to determine how the spots affect body functions because few tests can be conducted on a living patient's brain without causing further damage.
A difficult diagnosis
A year after getting sick, Hillenbrand was still searching for a doctor who understood what was happening to her body. She was 5-foot- 5 and weighed only 100 pounds. She spent her days exhausted, fighting vertigo, severe fatigue and fevers. One doctor told her the symptoms were psychological; another thought she had bulimia. She was eventually diagnosed in 1988 by a CFS specialist at Johns Hopkins University.
Diagnosis is difficult because it is based on symptoms; there is no blood test that can pinpoint the disease. Doctors exhaust all possibilities -- testing for cancers and blood diseases -- before they diagnose the patient with CFS, Komaroff says. In his 1999 prevalence study, Jason found that only 10% of people with CFS symptoms are actually diagnosed.
Most, like Hillenbrand, have had to struggle to prove to doctors, friends and family that their symptoms are physical and not the result of laziness or depression. Hillenbrand says she still gets angry letters from readers insisting she's faking her illness to get publicity.
Without a blood test to confirm the disease, many primary-care doctors are cautious of "being fooled" or don't prescribe pain medication for fear of causing addictions, Bell says.
Many are influenced by the name, which focuses on one symptom and downplays the severity, he says.
"When you say 'I have chronic fatigue syndrome,' people say, 'Oh, yeah, I have that, too!' " Hillenbrand says. How can chronic fatigue "describe a disease where you cannot sit, eat, walk?"
For most, CFS symptoms don't go away, say officials at the Centers for Disease Control and Prevention. The agency reports only 12% of CFS patients fully recover. But a study by Bell, published in the May issue of the journal Pediatrics, found 80% of children diagnosed with CFS during a mid-'80s cluster outbreak in New York had improved by 1998. None of the children in the study had been diagnosed with the most serious cases, but Bell believes recovery rates for adults may mirror rates for children.
Another study, to be released next month in the Journal of Chronic Fatigue Syndrome, finds that of those given various treatments -- including melatonin, magnesium and multivitamins in a controlled study -- 76% showed improvement after three months and 90% improved after two years, says Jacob Teitelbaum, the lead investigator in the study.
When the vertigo was too severe, she would lie flat on her bed and write her thoughts on a notepad without looking at the pages, waiting for a time when she could type the notes on her computer.
From her home office, Hillenbrand was able to piece together Seabiscuit's history using the Internet, the phone and old newspaper clippings. She placed ads in racing magazines and made cold calls using an old racing phone book to locate track veterans. She taped her telephone conversations with sources and transcribed interviews onto the computer, typing until she was exhausted with eyestrain.
Hillenbrand used eBay to locate Seabiscuit memorabilia from the Great Depression, had materials from the Library of Congress shipped to her local library and saved enough energy to travel to the National Agriculture Library, about 20 minutes away.
On the few days she was too ill to talk, type or jot down notes, she would compile questions and ideas in her head and wait for a moment when she could hit the computer.
Because the book took immense physical and mental energy over four years, Hillenbrand's symptoms have progressively worsened. She tries to work around her symptoms by resting, eating nutritious foods and taking antibiotics to prevent edema, which causes her face to swell. She has arranged her house to keep food and water within easy access, and she knows her physical limits.
For Hillenbrand, treatment has not been effective.
"For the first few years I tried everything, and hoped for a possible cure," she says. "Nothing helped, and a lot of things set me back. Emotionally, you put a big stake in everything you try. And it hurts every time" a treatment doesn't work.
Although Hillenbrand is frustrated by the lack of medical answers and her frail condition from writing Seabiscuit, she says the high price was worth it.
"Writing this book was a matter of dignifying my place in this world," she says. "I wasn't going to let it (CFS) defeat me."
Fighters: Author With Chronic Fatigue Scores a Hit
"Here comes this horse from the bottom of the sport, surrounded by a jockey who had been abandoned at the racetrack as a boy, who only had one good eye," Hillenbrand said.
A Motley Crew
This motley crew and homely horse became champions of their era. Now more than 60 years later, they are heroes again. Seabiscuit: An American Legend spent 23 weeks on the best-seller list.
The author was so weakened by chronic fatigue syndrome that writing the book was an exhausting ordeal every day.
"The world appears to be pitching up and down and spinning to me, and I feel as if I'm pitching up and down and spinning," Hillenbrand said. "And reading and writing makes that a lot worse. A lot of times it was a matter of lying on my back in bed with my eyes closed and a pad in front of me just writing. And I would be writing over the top of what I had written on the last line. But at least it was on paper."
Despite her illness, the author does not look ill. But that is one of the big misunderstandings of the disease, Hillenbrand said.
"One of the things you do try to do for your dignity's sake is look as well as you can," Hillenbrand said. "The word 'fatigue' doesn't come close to describing the kind of exhaustion you experience with this illness. I can't sit up, I can't stand up, I can't walk, I can't talk, I can't lift my hands, and breathing is actually difficult. That's how exhausted you get with this illness, and it's relentless."
Before her illness, Hillenbrand was a swimmer and an accomplished rider. Then one day she became violently ill.
"At first I thought it was food poisoning, but it just didn't go away. It took a couple of months for me to start thinking, 'This is really bad. This is not going away. And my doctors aren't getting this,'" Hillenbrand said.
A Typical Patient
"The person for me who finally got it was fortunately the head of infectious disease at Johns Hopkins," Hillenbrand said. "It was good to finally get that diagnosis. It was a relief even though he told me there was no treatment. No cure."
But there is some solace. The best-seller that gave Hillenbrand a reason to get up every day is being turned into a movie, and has brought the story of the Depression-era champion to a whole new audience.
Seabiscuit was a celebrity of the day who garnered more attention from newspaper columnists in 1938 than did then-President Franklin D. Roosevelt or Adolf Hitler.
The two met at a match race Nov. 1, 1938 at Pimlico in Baltimore. There were 40,000 people in the stands, and one in every three Americans was listening on the radio. No one thought Seabiscuit could win.
"You can hear the crowd all around him, and you can hear the astonishment in [the announcer's] voice when Seabiscuit takes the early lead," Hillenbrand said. "And War Admiral passes him, and the two went at just a dog-eat-dog battle, breakneck pace, all the way around the track."
And Seabiscuit won.
Just as he became a symbol of hope for a nation struggling through the Great Depression, Seabiscuit also became a gift to Hillenbrand as she struggled with a debilitating disease.
"The only time I'm not aware of my physical suffering is when I'm writing," she said. "And I get lost in this book and lost in these people for four years while I was working on it."
And when her editor called and said the book hit No. 1, it was as though Seabiscuit, and the men who saw him to fame, were right there with her.
"There was this unmistakable feeling of their presence around me, and it was the sweetest thing," Hillenbrand said.
It Chronic Fatigue Syndrome?
It is not considered to be contagious. When chronic fatigue syndrome first surfaced, a Centers for Disease Control study found that 98 percent of sufferers were white and 85 percent were female, leading to the condition being dubbed a "yuppie disease," since 80 percent of patients had advanced education and one-third were from upper-income families.
However, a more recent study painted a different picture.
A 1999 DePaul University study conducted in eight socioeconomically and racially diverse inner-city communities found that as many as 800,000 people nationwide may suffer from CFS.
It also found that: Latinos have the highest prevalence rates of CFS, approximately twice that of whites. African-Americans also had higher rates of the illness than whites. Professionals had lower rates than blue collar workers. Baby boomers in the 40- to 49-year-old range exhibited the highest rates of CFS.
At illness onset, the most commonly reported symptoms were sore throat, fever, muscle pain, and muscle weakness. As the illness progressed, muscle pain and forgetfulness increased and the reporting of depression decreased.
A patient must satisfy two criteria in order to receive a diagnosis of chronic fatigue syndrome, according to the Centers for Disease Control:
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