Laura Hillenbrand On ME/CFS, Her Formerly Athletic Life and How She Gets By: the SI Interview

January 17, 2011

Posted by Cort Johnson

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The CFIDS Association highlighted these two stories on Laura Hillenbrandt in the CFIDSLink and they seemed particularly poignant to me since they focus on her former quite athletic life and her life as it is at present and how this formerly very athletic person deals with such a devastating case of ME/CFS. It was eye-opening to see what an athlete she was and what a sports nut she remains :) . Over a month after it was released Unbroken is the #1 Non-fiction Bestseller.

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4765-laura_hillenbrand.jpgTwice in the last decade, author Laura Hillenbrand has written best sellers in which the central figures are dynamic and courageous athletes. In 2001 she published Seabiscuit: An American Legend, about the underdog Depression-era racehorse. Her current work, Unbroken, is the story of middle distance runner Louis Zamperini, who competed in the 1936 Olympics, later crashed in the Pacific as an Army bombardier and survived 47 days adrift at sea and more than two years in a Japanese POW camp.

Yet the writer whose books are so filled with physical energy has been robbed of hers. For 23 years Hillenbrand, 43, has suffered from an extreme form of chronic fatigue syndrome, with accompanying vertigo, that leaves her almost perpetually exhausted. “I move very little, almost never leave my home, and sit in silence alone, most of the time,” says Hillenbrand in an e-mail.

In her subjects she finds the freedom that she can’t have in her daily life. “I love to write about individuals who lived lives full of motion,” she says, “because this illness leaves me trapped in stillness. In my mind, I’m with my subjects, whether it is aboard Seabiscuit’s back as he puts away War Admiral or aboard a raft lost on the Pacific as a Japanese bomber strafes it with bullets and sharks circle alongside.”

Long before her illness struck, Hillenbrand was an athlete. She was an accomplished age-group swimmer and an equestrienne. At Kenyon College, she says she played tennis “obsessively.” She later began cycling. It was not competition that drove her but the joy of simply playing. “I was a socially awkward and troubled kid,” says Hillenbrand. “And I didn’t like myself much. But when I was playing a sport, I felt liberated and elevated. I miss sports every day.”

She has since chosen subjects who have fought adversity. She writes of their victories, which become her own. “To succeed, an athlete must transcend the boundaries of the body and the mind, pushing through pain and exhaustion, doubt and fear and mental fatigue, extending his or her body to its structural limits,” says Hillenbrand. “One thing that made Louie Zamperini so special a subject was the way in which all of the attributes he called upon to be a great runner were the same attributes he called upon to survive in combat, as a castaway on a life raft and as a prisoner of war.”

Hillenbrand’s health has wavered through the years. She had what she calls a “catastrophic CFS relapse” in 2007 and has been improving slowly since. She lives in a Washington, D.C., townhouse with her husband, American University political theory professor G. Borden Flanagan, whom she met 24 years ago at Kenyon, just before becoming sick. (They were married in 2006.)

Promoting Unbroken has tired Hillenbrand, but, she says, “it is tremendously important to me to bring the story of Zamperini, and the POWs who served alongside him, to the world. I owe it to those men, who opened up their histories to me. And I want so badly to define myself by something other than this all-consuming disease. These books have given me that gift.”

The Sport Illustrated Interview

Laura Hillenbrand loves sports. Her debut book, ‘Seabiscuit,’ chronicled the career of the storied racehorse, and her second book, ‘”Unbroken,” focuses on the harrowing journey of Olympic sprinter and P.O.W. Louis Zamperini. Despite her love, Hillenbrand suffers from chronic fatigue syndrome, which limits her physical activity. Hillenbrand sits down with SI.com to discuss the impact of sports on her life, horse racing and her illness.

SI.com: You were a competitive swimmer, you rode horses, you played tennis. Which were you most accomplished at, and at what level? (I believe Kenyon had — perhaps still has — a strong swimming program; so you were probably quite good.)

Laura Hillenbrand: I was always a sports-crazy kid, and did everything from soccer (terrible at it) to tennis to showing horses to a crazed melee called “gym hockey,” which I adored even though it left me bruised from head to toe. I swam competitively from age 7, in summer and sometimes winter leagues, eventually specializing in 100-, 200-meter backstroke and butterfly, and some individual medley. These were just kid’s leagues, but I did pretty well, especially as I got older, once going unbeaten for a season.

But swimming didn’t engage me in the way other sports did. My mother wanted me to be on the team when I was a kid, but in the middle of high school, I hung it up.
Kenyon has a superb swim team — I think their men have won their division’s national championship for more than 30 years running — but I had stopped competing by the time I reached college, and have no idea if I would have been good enough to make the team.

I played tennis obsessively at Kenyon, and even arranged to get a dorm room right next to a court so I could play in every spare hour, but didn’t join the team. In the summer before I got sick, I bought a bike and took up cycling.

To be honest, I was always uneasy with competing at any sport, even when I was good at it. Once, when I was playing in a summer tennis league, a girl I had beaten smashed her racket, handed it to me and stormed off. That mortified me and took all of the joy out of playing. I wanted to play sports not because I wanted to defeat someone else, but because I took such pleasure in athleticism itself — the speed or strength or agility my body could summon. Sports made me feel exquisitely alive. As I grew older, I stopped joining teams and started just playing sports for fun.

SI.com: To what extent did those sports define you as a young person? Did you derive a significant portion of your personality and self-worth from competition, as many young athletes do?

Hillenbrand: Competition didn’t shape me, but playing the sports themselves did. I was a socially awkward and troubled kid, and I didn’t like myself much. But when I was playing a sport, I felt liberated and elevated. To master a serve so it just kissed the corner of the service box, or to achieve communion with a 1,000-pound animal who would happily carry me over a fence because I asked her to, these things made me feel powerful and capable in a way that nothing else in my life did.

When I was 13, I had a sports moment that has always stayed with me. My riding instructor entered me in a jumping event. When I got to the show, I discovered that the fences were gigantic, probably four-feet high, higher than I had ever jumped, and my competitors were all adults. I was terrified. But when my horse and I entered the arena, I realized that I had nothing to lose, and decided to throw myself at this thing. “Throw your heart over the fence,” went the old saying, “and your horse will follow after.” I did just that. I think I rode really ugly, but to my amazement, we kept clearing fence after fence, and we were going very fast.

People in the crowd started cheering me on and clucking to my horse as we jumped. It felt like everyone there was pulling for me. In the end, my horse refused one fence, which was my fault, but we cleared all the others, and had we cleared the one we missed, we would have won. I have never felt a deeper sense of satisfaction than I did that day; it completely changed my idea of what was possible for me. Today, when I’m facing something that frightens and intimidates me, I remember that moment. I think I’ll draw on that experience for the rest of my life.

SI.com: Why write about sports now? I know you have said that Seabiscuit grew from your love of horses and riding, and even from your memory of a children’s book about Seabiscuit. Unbroken makes it two books where the central character is an athlete. Is there a way to summarize why you have taken this path?

Hillenbrand: I’m drawn to subjects who struggle against adversity, and struggling against adversity is what defines an athlete. To succeed, an athlete must transcend the boundaries of the body and the mind, pushing through pain and exhaustion, doubt and fear and mental fatigue, extending his or her body to its structural limits. I’m fascinated by the way in which sports draw out the essentials of character: perseverance, resilience, tenacity, daring. One thing that made Louie Zamperini so special a subject was the way in which all of the attributes he called upon to be a great runner were the same attributes he called upon to survive in combat, as a castaway on a life raft and as a prisoner of war.

SI.com: In that same vein, you said in a 2001 interview: “That’s the story of the individuals I wrote about: They were successful in overcoming what they had to deal with. Stepping out of my body and into their lives — they were vigorous men, who lived wild eventful lives that swung in gigantic parabolas — was an escape for me.”

This was about Seabiscuit, but it could have been about Louis Zamperini, too. It seems like the same emotions might hold now, but is the work not only an escape, but also an athletic competition of sorts for you, as well?

Hillenbrand: I love to write about individuals who lived lives full of motion, because [chronic fatigue syndrome] leaves me trapped in stillness. Creating a book is a very intense process for me; as I conduct research, or write, I imagine and reimagine the events, trying to feel the experience with my subjects. I try to gather every possible detail, so I can see and feel each event as vividly as possible. In my mind, I’m with my subjects, whether it is aboard Seabiscuit’s back as he puts away War Admiral, or aboard a raft lost in the Pacific as a Japanese bomber strafes it with bullets and sharks circle alongside.

Physically, I can’t escape this illness, or even this house, but when I’m writing, I’m not here; I am in another place and time, in another body, living through someone else. The thing I yearn for the most in my life is to have a healthy body again, so I especially enjoy writing about supreme athletic moments.

SI.com: A more personal question: Do you ever think now about the sports you once played? You have been very candid in past interviews about finding joy in the life you’ve been handed. But do you think about swimming or riding or any other athletic pursuit that so many others take for granted?

Hillenbrand: When I first became ill, which happened very suddenly in March 1987, a curious thing happened. In my waking life, I was so weak I had to lean against a wall for support as I tried to make it to my bathroom. But in my dream life, I became a super athlete. I won the Tour de France. I rode a Kentucky Derby winner. I took gold in swimming at the Olympics. Every athletic endeavor came without effort or flaw. Then I would wake, and find myself trapped in a body that could not function. The dreams were very troubling to me, compounding the pain I felt over the loss of my body.

It wasn’t until I made the emotional adjustment to the illness — accepting that this wasn’t going to go away overnight and I would have to learn to find happiness and make my life meaningful in spite of it — that those dreams stopped. Since then, if I dream of sports — which I do fairly often, mostly of swimming backstroke in meets — I am always ill in them, pushing against exhaustion.

I miss sports every day. Even after all these years, part of me hasn’t stopped thinking of myself as an athlete. I’m a great watcher of sports; all my life, I’ve been absolutely willing to watch any sport you put in front of me, whether it’s pro football or tractor pulls. In elementary school, I used to run home when school let out so I could catch the 3:00 p.m. showing of The Olympiad, my favorite program.

Now, as I watch athletes perform, I’m always imagining what it must feel like to be so free. That’s very poignant for me, but at the same time, it makes my experience of sports so much richer, because I appreciate so fully how wondrous athletes are. When a truly supreme athlete comes along — Michael Jordan, the racehorse Easy Goer, Greg LeMond and sprinters Michael Johnson and Usain Bolt have resonated particularly with me — I am spellbound.

Little things from my athletic life stay with me. In all my years riding horses I learned to instinctively rise out of the saddle and lean forward as a horse came upon a bump in the ground, in case he jumped or stumbled. When I’m in a car, I still habitually do that when we come upon a pothole. And when my husband throws a balled-up paper towel at the trash can, I instinctively swing at it, as if I’m on a tennis court.

Years ago, when I was in a good period with the illness, I got to ride a horse again, for half an hour. I was nothing like the strong rider I had once been, but my body still knew how to move in balance with the horse and to pick up cues in the horse’s gestures, exactly as it once had. The body never forgets.

SI.com: Almost a decade ago, you told an interviewer: “The biggest problem has been exhaustion. I’ve spent about six of the last 14 years completely bedridden. At times, I have been unable to bathe myself. I have gotten so bad I couldn’t really feed myself and a couple of times I needed someone to spoon feed me. I have had trouble rolling over in bed.”

What is the state of your health today?

Hillenbrand: Unfortunately, it’s not good. I was doing OK for several years after Seabiscuit, but in 2007, in my fourth year of working on Unbroken, I suffered a sudden, catastrophic CFS relapse. It was months before I was strong enough to get down my staircase, and two years before I was strong enough to leave the house. I had to finish the book while in disastrously bad condition, and on some days I was barely able to get my hands to the keyboard. I was afraid I wouldn’t get it done, but somehow, I did. I was fortunate in that nearly all of the research was done before the relapse, so all I needed to do was write.

For the past year and a half, I’ve been slowly, slowly improving, but it’s been a long and difficult haul. I’m now well enough to get around my house fairly well on good days, and sometimes go out, but there are more bad days than good. Promoting the book has been exceptionally difficult, and [it's] dragging me back down again.

Putting myself at risk now is a choice I’m making with eyes open. It is tremendously important to me to bring Louie Zamperini’s story, and those of the other airmen and POWs who served alongside him, to the world. I feel I owe it to these men, who opened up their histories to me. And I want so badly to define myself by something other than this all-consuming disease. These books have given me that gift.

SI.com: Have you ever wondered if your physical struggle has given you a heightened sensitivity (or work ethic) that has helped you write so passionately and so evocatively?

Hillenbrand: My illness has, in one way, made my physical life extremely simple. I move very, very little, almost never leave my home and sit in silence, alone, almost all the time. Whatever I am writing fills every corner of my world in a way it can’t for a writer who also has kids or a commute or a social life or travel or all the other things healthy people have that keep them in the present moment. I’m always trying to escape my body and the suffering that this illness brings, so I lose myself in these stories.

In the time that I have spent writing Seabiscuit, then Unbroken, I have become so familiar with the 1930s and 1940s that I almost feel as if I lived in them, even though I was born many decades later. The music, the clothing, the manners of speech, the historical setting — all these things feel more like home to me than the current era does, because I am so far outside of normal contemporary life. I don’t know if my immersion makes the story more immediate to the reader, but I hope it does.

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