Chronic fatigue forced author of 'Seabiscuit' to pace herself
Laura Hillenbrand spent four years of her life — at times 12 hours a day, seven days a week —researching and writing the story of a "rough-hewn, undersized" horse that became a racing champion.
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'
Nearly 800,000 Americans have CFS, says Leonard Jason, a community psychologist and CFS researcher at Chicago's DePaul University, whose study on the prevalence of the disease was reported in 1999 in the Archives of Internal Medicine. Some experts say the illness can affect anyone, but Jason says his study indicates that women and minorities are particularly susceptible.
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
Hillenbrand's battle with CFS began with a bad case of food poisoning. Then, she was a straight-A student at Kenyon College in Gambier, Ohio, and an avid swimmer. For two weeks she struggled to get to class, fighting nausea and stomach pain. Her symptoms worsened until she no longer could get out of bed. Finally, she dropped out of school, intending to return when she felt better.
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.
Working against CFS
When Hillenbrand began writing Seabiscuit, vertigo made the words on her computer screen appear to dip from side to side. Placing her laptop on several books created an upward vision angle and helped quell the vertigo.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."