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Betting on Seabiscuit: How Laura Hillenbrand Beat the Odds with Chronic Fatigue Syndrome and Wrote a Bestseller

  [ 828 votes ]   [ Discuss This Article ]
www.ProHealth.com • January 1, 2003


Laura Hillenbrand beat the odds to write the hit horse-racing saga
while fighting chronic fatigue syndrome, a mysterious disorder
starting to yield its secrets.

BY LARRY KATZENSTEIN

Laura Hillenbrand does not keep the pell-mell schedule
that one might expect of a newly crowned literary lioness.
The author of Seabiscuit: An American Legend, the unlikely
page-turner about the ungainly racehorse that became a
long-shot champion, is busy consulting on a Seabiscuit
movie, which began production in Kentucky this past fall.

But to Hillenbrand, 35, who lives in Washington, D.C.,
“busy” doesn’t mean what it does to most people. To her it
means talking on the phone. She receives scores of invitations
every month to appear at bookstores or give speeches
or write articles—and declines almost all of them. On
some days, she doesn’t have the strength to leave her
house, and therein lies another tale of long odds, perseverance
and unexpected fame.

Hillenbrand is afflicted with chronic fatigue syndrome, a
disorder marked by physical and mental exhaustion, recurring
aches and fleeting fevers. She came down with it 15
years ago—remembers the day it struck, in fact—and was
bedridden off and on for six years. She toiled on Seabiscuit
for four years, often keeping a box of breakfast cereal close
at hand so she wouldn’t have to waste precious energy
walking to the kitchen, sometimes writing (in longhand)
with her eyes closed to stop the vertigo. The book, a
chronicle of the racetrack world of 1930s America, has so
captivated readers (the hardcover was a No. 1 New York
Times best-seller last year, and the paperback remains on
most best-seller lists) that the news of what she overcame
to create it has transformed Hillenbrand into a leading
spokes-person for victims of chronic fatigue syndrome, or
CFS.

“As I lay in bed over the years, I wished that somebody
prominent would go out and make an articulate case for
CFS patients,” she says. “So when Seabiscuit’s success gave
me the opportunity to take on that role, I thought, OK,
that’s what I’m going to try to do.”

To people with the disorder, many of whom have been
misdiagnosed or even stigmatized as malingerers, Hillenbrand’s
candor has been a godsend. “Laura has told her
story so graciously and compellingly,” says Kim Kenney,
head of the Chronic Fatigue and Immune Dysfunction
Syndrome Association of America, a patients’ group. “Her
triumph has not only inspired patients but has really made
a difference in helping the public understand what people
with this illness have to go through.”

Hillenbrand’s willingness to serve as the poster child for
chronic fatigue syndrome coincides with other welcome
developments, including new thinking about its causes.

Though a cure for the syndrome does not exist, researchers
have recently amassed evidence that counseling
and supervised exercise therapy can often help patients.
Perhaps most impressive, medical researchers at the U.S.
Centers for Disease Control and Prevention in Atlanta are
working on the first test for screening and possibly diagnosing
the syndrome. Says Dr. William Reeves, who directs
chronic fatigue syndrome research at the CDC: “The
field is progressing quite rapidly.”

it all began for hillenbrand the evening of March 20,
1987. She was then a sophomore at Kenyon College in
Gambier, Ohio, a straight-A student with hopes of becoming
a history professor. She had always been active, riding
horses since age 5, swimming competitively (100-meter
backstroke) in her suburban Maryland high school, biking
and playing tennis in college. She’d eaten at a restaurant
that day, and by nightfall was doubled over with pain—
food poisoning, she figures. “I was so sick we called paramedics,”
she says. For three weeks she was miserable, then
awoke and couldn’t sit up. “Even if the building had been
burning down, I wouldn’t have been able to get out of
bed,” she says. She returned home to Bethesda, the Washington,
D.C. suburb where she grew up, and spent the
next two years virtually bedridden.

Frustration with medical practice is a frequent side effect
of chronic fatigue syndrome, and Hillenbrand would see
seven internists and numerous specialists who attributed her
illness to Epstein-Barr virus infection, a sinus infection, bulimia
and, though she was 20, the onset of puberty. Some
said the problem was all in her head. “‘Couldn’t handle
school so dropped out,’” she says one physician noted.

Looking back, Hillenbrand says she doesn’t blame the doctors
for not identifying her illness, given that so little was
known about it at the time. “But I do blame them for making
assumptions about my character and implying that I was
somehow responsible for this illness.”

Finally, a physician at the Johns Hopkins University
School of Medicine in Baltimore diagnosed her correctly.
She recovered somewhat and started working as a freelance
magazine writer, often covering horse racing. In
some ways, her experience was typical: about half of
chronic fatigue patients recover significantly within the
first five years of succumbing, according to the CDC.

Overall, though, Hillenbrand’s illness has been more severe
than most cases, she says. In 1991, she had a relapse,
becoming even sicker than before. “I spent two straight
years lying in bed staring at the ceiling,” Hillenbrand says.

In nearly two decades of searching for the cause of
chronic fatigue syndrome, researchers have turned up no
definitive answer; some believe that the disorder has multiple
causes, perhaps as heart disease does. But there are
leads. The 1980s-era theory that chronic fatigue syndrome
was caused directly by the Epstein-Barr virus, the infectious
agent behind the fatiguing disorder known as mononucleosis,
has turned out to be partially true. That virus
and others seem to play an indirect role in the disease.

In a study of 250 Londoners with either mononucleosis or an
upper respiratory tract infection, 9 percent of the mono
patients were diagnosed with chronic fatigue syndrome
six months after first becoming ill, whereas none of the
patients with upper respiratory tract infections developed
the affliction. The study, led by researchers at St.
Bartholomew’s Hospital in London and published last
year in the Lancet, is the first conclusive evidence that a
viral infection can trigger chronic fatigue syndrome.

In addition to infectious mononucleosis, studies suggest
that two other infectious illnesses—Q fever and Ross River
virus—can lead to chronic fatigue syndrome. To learn more
about the risk factors that make people susceptible to chronic
fatigue syndrome, the CDC is funding a study that will
track patients in the Australian state of New South Wales
who contract Q fever, Ross River virus or infectious
mononucleosis.

But infectious agents may not be the only culprits. Peter
Rowe, a pediatrician and director of the chronic fatigue
syndrome clinic at Johns Hopkins Children’s Center, has
documented that some young people who developed the
syndrome also have a disorder called neurally mediated
hypotension; their blood pressure plunges after they’ve
been standing for several minutes, leading to dizziness,
weakness and, over time, exhaustion.

Other medical researchers have failed to find the same link between bouts
of low blood pressure and chronic fatigue syndrome, but
Rowe remains convinced it’s a factor in some cases and
says he has given such patients blood-pressure-regulating
drugs with good effect. Likewise, Rowe and other researchers
have argued that a heart rate abnormality, postural
tachycardia syndrome, in which a racing heart causes
light-headedness, may also be involved in chronic fatigue
syndrome.

Even though the disorder has been recognized only fairly
recently as a clinical entity—the CDC officially defined
chronic fatigue syndrome in 1988—it probably isn’t new to
humanity. Physicians and historians of medicine say it
closely resembles neurasthenia, a so-called nervous exhaustion
that was one of the most commonly diagnosed
conditions in the United States and Europe in the second
half of the 19th century.

“If you read the descriptions of neurasthenia in 1880 in
journals, textbooks and the diaries and letters of patients,
you would be in no doubt that what they’re describing is
chronic fatigue syndrome,” says Dr. Simon Wessely, a
London psychiatrist and coauthor of the 1998 book Chronic
Fatigue and its Syndromes. But neurasthenia, originally
thought to be caused by infection or overwork, fell out of
favor as a diagnosis before World War I, largely because
doctors failed to find a concrete reason for it.

Historically, says DePaul University psychologist
Leonard Jason, physicians have treated many mysterious
chronic illnesses as psychological problems. For example,
some experts once thought multiple sclerosis was caused
by “stress linked to oedipal fantasies,” he says. “But later,
with the development of sophisticated imaging technologies,
researchers showed clearly that MS is a neurological
disease that has a physical cause.” Similarly, he predicts,
advances will reveal that “physical causes also underlie
most cases of CFS.”

One of the most surprising findings is that chronic fatigue
syndrome appears to be 100 times more common
than many experts previously believed. In a study led by
DePaul’s Jason, researchers surveyed some 18,000 people
in Chicago by phone, then gave medical exams to respondents
who reported chronic fatigue symptoms: 4 out of
every 1,000 people surveyed had the affliction, leading to
an estimate of more than 800,000 cases nationwide. And
contrary to the stereotype of the disorder as an affliction of
well-to-do young whites—“the Yuppie flu,” it was once
dismissively called—the researchers found that the syndrome
was most prevalent among the minorities and
lower-income people surveyed.

Also, nearly two out of three cases had no prior history of psychiatric problems, contradicting the widespread view that chronic fatigue
syndrome is really just a symptom of an underlying mood
disorder such as depression or anxiety. A notable feature
of the disorder’s prevalence is its pronounced sex bias.
More than two out of three chronic fatigue patients are
women. Researchers don’t know why.

it’s perhaps not surprising that Hillenbrand, leveled
by chronic fatigue syndrome, would relish delving into
Thoroughbred racing, a world of explosive energy
and thunderous speed. And Seabiscuit is, above all, a story
of redemption. The horse toiled in claiming races—the
lowest rung on the racing ladder—until a laconic, former
mustang breaker named Tom Smith saw something special
in the squat animal and trained him to become one of
the greatest racehorses of the century.

Seabiscuit’s owner, Charles Howard, was a San Francisco bicycle repairman
who became a millionaire car salesman. And a half-blind,
flat broke and presumably washed-up Canadian named
Red Pollard rode the race horse into history. In 1938,
Seabiscuit was America’s leading newsmaker, beating out
President Roosevelt and Mussolini in total inches of news
stories devoted to him.

“Here was a story I could get lost in, with fascinating
subjects whose lives were complicated and vigorous—
everything my life wasn’t,” says Hillenbrand. “Writing it
helped me redefine myself, to become Laura the author instead
of Laura the sick person. That was very rewarding.”
Over four years, she did little besides work on the
book. Each day, she meted out her limited store of energy,
calculating whether a trip to the pantry or the bathroom
was worth the expenditure. Her morning shower
flattened her, she says. In her small home office, she kept
everything within arm’s reach, including a small refrigerator.

Still, she did 150 phone interviews, transcribing each
one herself. In a passage of Seabiscuit that seemingly betrays the presence
of the author’s own struggles, Hillenbrand writes that
“for all its miseries, there was an unmistakable allure to
the jockey’s craft,” and goes on to say: “Man is preoccupied
with freedom yet laden with handicaps. The breadth
of his activity and experience is narrowed by the limitations
of his relatively weak, sluggish body. The racehorse,
by virtue of his awesome physical gifts, freed the jockey
from himself. . . . For the jockey, the saddle was a place of
unparalleled exhilaration, of transcendence.”

Writing Seabiscuit was Hillenbrand’s transcendence.
And like the once-downtrodden Thoroughbred, she became
a star. Critics poured praise on the book, which became
an instant best-seller, garnered awards and was celebrated
as one of the favorite books of 2001.

But her success came at a price. “The day after I turned
in my manuscript, my health collapsed,” says Hillenbrand.
“You want so much to defy this illness and live on
your own terms. I hoped I could get away with it, but I
couldn’t.” Debilitating symptoms of chronic fatigue, and
the devastating vertigo that accompanied them, had returned
with a vengeance.

medical researchers have long sought a reliable diagnostic
test for chronic fatigue syndrome, which a physician can
identify only after ruling out the many other possible causes
of severe fatigue. Now CDC researchers may be on the
verge of developing such a test, based on analyzing patients’
genetic material.

Essentially, the research-ers have found that chronic fatigue
syndrome prompts a complex physiological response
that leads to a telltale pattern in gene output. They extracted
from the patients’ blood cells the intermediate genetic
material known as messenger RNA, which is produced
when genes are instructing cells to grow, divide, fend off
an invader or otherwise be active. Using a recently developed
technology called gene expression microarrays, the researchers
tested the patients’ RNA, inferring from it which
genes had been active—that is, “expressing” their genetic
code, as scientists say. The technique enables scientists to
probe for tens of thousands of genes simultaneously and
determine which ones are active, or “on,” and which are
inactive, or “off.” Chronic fatigue syndrome, the CDC researchers
speculate, might yield a sort of genetic signature, a
pattern of the genes’ expression.

Analyzing blood samples from chronic fatigue
syndrome patients and healthy people in the Atlanta area,
the researchers posed a simple question: Could the genetic
tool tell the difference between the samples? “The answer
is: yes, it can,” says Suzanne Vernon, a molecular epidemiologist
and the study’s lead researcher. She cautions that
more work is needed to confirm the findings in other
populations, for example. But she says the results are “very
exciting,” and she predicts that microarrays will someday
routinely diagnose chronic fatigue syndrome, whatever the
underlying cause.

“Most CFS experts would agree that there may be several
subcategories of [the disorder]—due to an infectious
agent or to stress and so forth,” says Vernon. “I anticipate
seeing an underlying gene-expression pattern common to
all CFS patients but, in addition, some unique genes expressed
that correspond to each subgroup.”

Treatment research has recently focused on two behavioral
therapies, one for the mind, another for the body. In
graded-exercise therapy, patients, under supervision, are
encouraged to gradually increase their activity level—beginning
with a two-minute walk, for example, and then
lengthening their workouts by a couple of minutes each
day. The idea is to increase stamina without risking the
overexertion that can be so devastating. Three studies on
graded-exercise therapy, all published since 1996, found
that many patients participating in exercise programs felt
better, and some even regained their former levels of physical
activity.

At Johns Hopkins, Rowe noticed that many of his
chronic fatigue syndrome patients had unexpected stiffness
and a limited range of movement. So on 100 or so of
them, he says, he has tried manual therapy in which a
physical therapist gently moves a patient’s limbs and body
to restore normal movement before encouraging her to resume
physical activity. “As the patients’ mobility has increased,”
he says, “their symptoms have diminished, and
many of them now can even exercise without suffering
relapses.”

The other approach is cognitive behavioral therapy—
counseling that focuses on the psychological and social
problems that patients often develop while trying to cope
with the affliction, including depression, frustration, social
withdrawal and feelings of helplessness. Cognitive behavioral
therapy aims at helping patients gain control
over their symptoms.

Wessely, the London-based psychiatrist and author,
says graded-exercise therapy and cognitive behavioral
therapy have helped some chronic fatigue patients for
many months and even years beyond the initial treatment
period. “They’re the best treatment approaches that we
have now,” he says.

But some patient advocates have criticized the behavioral
approach, saying it trivializes the affliction as psychological
in origin. Kenney, of the CFS patients’ group,
cautions that patients can’t just exercise the disorder away
and may harm themselves if they carelessly try to do so.
Wessely points out that the behavioral treatments have
also helped people with clearly physical illnesses such as
cancer and arthritis and insists that whether the cause of
chronic fatigue syndrome is physical or psychological
doesn’t matter.

“We always tell patients truthfully that we don’t know
what caused their [chronic fatigue syndrome]—maybe
they were stressed, maybe it was a virus. We say it’s like
being in a hit-and-run accident: it’s happened, and that’s
tough. Now, what can we do about it? We know that
psychological factors such as depression can affect the outcome
and so can physical factors like inactivity. And those
we can change.”

Hillenbrand has begun seeing a therapist who takes a
cognitive behavioral approach. “We’re talking about how
I’m perceiving the illness and what my expectations are,”
she says. “I don’t think I went into the illness with these
problems, but over the years of being traumatized by
chronic fatigue syndrome, you develop problems that
make it harder for you to recover from it. I’m feeling a bit
better, and I think ultimately the treatment will help me.”
What she’d really like to do—work on another book—
isn’t possible just now. “I absolutely destroyed myself in
finishing Seabiscuit, and my ability to read and write is severely
limited” because of chronic vertigo, she says. “I
have ideas that I’m itching to turn into books, but I can’t
touch them.”

Hillenbrand knew from the outset that writing Seabiscuit
would jeopardize her health, but she has no regrets:

“Whether it ruins me for good, writing this book was absolutely
worth it. Every morning I woke up happy because
I knew I was going to spend the day with these
men and with this horse.”


Larry Katzenstein is the author of the book Taking Charge of Arthritis:
An Action Guide to Managing Your Health and Well-Being.


Source: Smithonsonian Magazine, December 2002. www.smithsonianmag.com. (c) 2002 Smithsonian Institution. All rights reserved.



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