The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 07 December 2015 07 December 2015
by Sally Jacobs, Boston Globe Staff
It is hard to write a book. It is harder still when looking down at a piece of paper makes you dizzy, when you are so persistently tired that just taking a shower requires a three-hour rest, and when, sometimes, the bookshelf across the room starts to ripple like an accordion.
Somehow, Laura Hillenbrand did it, managing to overcome a legion of crippling symptoms in order to write not just any book, but the stupendously successful Seabiscuit: An American Legend, which was on the bestseller list for more than a year and is now being made into a movie. Never mind that her disease, chronic fatigue syndrome, is one that some doctors do not believe exists at all. Never mind that she appears in pink-cheeked health, so much so that Pond's skin cream recently featured her in an advertising spread in Vanity Fair and Self magazines. Or that she is actively engaged as a consultant on the film. The fact is that much of Hillenbrand's life has been a saga of sickness, one now made worse by her immense effort to write her book, and one that is almost as gripping as that of the valiant 1930s racehorse who is the heart of her story.
Consider her troubles: Since the day she turned in her final draft two years ago, Hillenbrand says, she has been plagued by a recurrence of vertigo, spawned by her illness, so intense that she is barely able to read or write. She doubts she will ever write another book. Not only do shelves ripple, but the couch bucks, the armoire lists, visitors bob up and down, and sometimes the floor drops out of sight. Savaged by exhaustion, she rarely leaves her trim yellow brick townhouse and counts as a good day one when she can walk a whopping three blocks. She cannot drive a car or fly in a plane. She does not go to the movies because the light is too intense. She has been out to dinner only once in five years, and even then she had to be driven the one-block distance. Hillenbrand, in fact, says she is far too tired even to marry her live-in boyfriend.
''If I were to get married, I would really want to show up, you know?'' declares Hillenbrand, 35. ''I don't want to do it if it's going to be this really arduous deal, and I think right now it would be really hard to do. The deal is that we are waiting until I get stronger.''
Her boyfriend, Borden Flanagan, a political-science instructor at American University, agrees, adding, ''Another problem with a wedding is all those people coming from out of town. Laura doesn't know if she can do anything one day to the next, so I think we'll wait.''
It has been 15 years since Hillenbrand ate a piece of chicken at a hotel buffet and got an apparent case of food poisoning that culminated in her collapse and a diagnosis of CFS one year later. Since then she and Flanagan, whom she met at Kenyon College six months before she fell ill and has been with ever since, have endured the mercurial course that is characteristic of the illness. There have been periods of disabling fatigue that left her bedridden for months at a time. There have been night sweats and fevers, spasms of vertigo, and once a period of partial blindness. At times she was unable to shower for such a long stretch that her hair ''looked soaking wet.'' Some friends and family members, at least in the early days of her illness, rolled their eyes in disbelief. One doctor attributed her condition to puberty. Another told her, ''You've just got to get up and get going, honey.''
But there have also been periods of relative wellness, periods during which Hillenbrand began to write about the horses and the curve of the track that have long been her passion. Perched in her bed, she pecked out stories for magazines with names like Equus and Turf Flash. And then, in 1996, as she was going through some racing documents, Hillenbrand came across the name of Seabiscuit, the famous thoroughbred who triumphed over astounding odds to become a racetrack legend and an icon in Depression-era America. She knew the name well: A dog-eared copy of the children's book Come On, Seabiscuit, which she bought from the Bethesda Elementary School fair at age 7, sits on her bookshelf. But this time, it was the three unlikely men who helped transform Seabiscuit's career as much as the horse himself who fascinated her. Hillenbrand, who grew up riding horses on her family's Maryland farm, identified as much with Seabiscuit's half-blind jockey, Red Pollard, as the horse.
''I feel like I am Pollard,'' declared Hillenbrand. ''I can't write because I have vertigo. He couldn't ride because he had no talent. Seabiscuit saved him and gave him a reason to live. It's the same for me. I thought, `I can tell this story.' ''
A Runaway Bestseller
Five years later, the book was released to an avalanche of acclaim. In the first week, it landed on the New York Times bestseller list; it shot to first place in the second week and remained on the list for more than a year. It has sold nearly 800,000 copies, and the film, starring Jeff Bridges, Chris Cooper, and Tobey Maguire as the jockey, has begun production and is expected to be released in July 2003. Because of her illness, Hillenbrand has been unable to go on tour or even make it to the studios of all the television and radio stations that want to interview her. Instead, ''Good Morning America,'' ''NBC Nightly News,'' and the like have lugged their equipment up her concrete stoop and set up their lights in her small, lemon-walled living room. Her ficus, she says, laughing, has made so many TV appearances that it is ''getting its own publicist.'' On days that she does interviews, she rests in the morning and, she says, ''I tell Borden not to talk to me.'' Sometimes when she is being interviewed on the phone, she keeps her feet in the tiny refrigerator next to her desk to keep a check on her ever-present fever, to which she attributes her rosy glow. She is still sick, but it is different now.
''I'm on the other side of this illness, in a way, because I've had success,'' explains Hillenbrand, dressed in a black blouse and short red-and-aqua patterned skirt. ''No one could call me a malingerer now, and I think that is part of the reason I wrote the book. I wanted to achieve something in the world of healthy people, to demonstrate I am not a malingerer. That I'm not lazy.''
Hillenbrand's success, however, has hardly cleared the clouds that hover over CFS. Largely dismissed as ''yuppie flu'' in the 1980s, CFS has come to be recognized as a medical condition by the Centers For Disease Control and Prevention, one identified not just by fatigue, but by a constellation of symptoms such as muscle pain and headaches. It has neither a known cause nor a cure and endures as something of a medical mystery. Like many of its victims, Hillenbrand, a slender woman with straight blonde hair, can appear to be in good health. She withstood an interview of four hours and trotted up and down the stairs repeatedly. Although symptoms sometimes ease over time, cases that persist, such as Hillenbrand's, tend not to dissipate.
Dr. Fred Gill, Hillenbrand's former doctor and now chief of the internal-medicine consult service at the National Institutes of Health, says Hillenbrand's case is ''remarkably severe'' and describes her limitations as ''on the extreme side.'' Several of her symptoms, such as temporary blindness and the sensation of pitching and rolling, are not typical. But Gill and others say CFS symptoms vary widely. Hillenbrand has tried a few of the medications recommended by the CDC, but they have not worked well. Now she takes only diuretics to alleviate facial swelling. She rarely sees a doctor, she says, because ''there's nothing much he can do.''
Her real caretaker is Flanagan. It is he who has bathed her brow during the worst of it, who moved into her mother's Maryland home with her after she first collapsed in 1987, who turned her in her bed when she could not do so herself, and who now watches to make sure there is not too much salt in her food or that reporters do not tire her out. Although Hillenbrand's three siblings have been supportive, only her brother lives nearby, and he does not see her often. Her father, who is divorced from her mother, ''has nothing to do with my illness,'' she says, and her mother declined to be interviewed. Flanagan is the only one she allows to drive her, she says, because ''he works the brakes so well. It doesn't affect the vertigo.''
Flanagan, a wiry 37, acknowledges that the years have been hard on him, too. In the early '90s, when Hillenbrand was largely bedridden, Flanagan says he felt consumed by her illness and floundered in his graduate work; he still has not finished his dissertation. At some point, the couple realized Hillenbrand would probably never be able to carry a child. The future, he says, ''was empty. It seemed like my life was going to be an unending spectacle of Laura's suffering.'' He thought of leaving more than once.
But Hillenbrand's success has buoyed him as well. ''It's been so great to see her flourish after all the years of being ground down, to see her come back,'' exclaims Flanagan. ''I sort of feel like a roadie for Aerosmith.''
Hillenbrand's symptoms seemed to subside during the years she wrote the book, and as publication approached, she debated with her editor whether to discuss her condition in public. Since then, her frankness has only enhanced her appeal and drawn a steady stream of reporters to her side. And then, of course, there is the book itself, which by almost any assessment is a triumph.
Anything is Possible
Seabiscuit is a riveting story about a gimpy-legged horse who defied all the odds to become one of the greatest racers in history, one so beloved that his name was mentioned in more newspaper articles in 1938—the year of his sensational triumph as Horse of the Year over archrival War Admiral—than either Franklin Roosevelt's or Adolf Hitler's. It is a masterpiece of reportage, chock-full of arresting detail. Hillenbrand plays the drama of the backstretch like one teethed, as she was, by her father's side at the dusty West Virginia tracks. But what makes Seabiscuit astonishing is that the only place Hillenbrand traveled for the book was the library. She never interviewed a single character face to face or saw any of the scores of places that she writes about. She did not visit any of the tracks where Seabiscuit pounded out his fame, although she had visited a few long before she became ill. She did not touch a single horse.
Instead, she turned the thermostat in her beige-walled office down to keep her fever low. She stacked cereal boxes and bowls across the top of her desk so she did not have to waste energy going downstairs for food. She constructed an elaborate contraption to hold up reading material so she did not have to look down. And then she got on the phone. Over four years, she interviewed more than 150 people, many of them grizzled jockeys and track veterans in their 90s. She posted scores of notices on the Internet, searching for more. She pored over old newspapers and track records, emptied eBay and other web sites of track memorabilia. She hired a former jockey to visit a racing library. She listened to crackling audiotapes and watched scratchy newsreels. And in a way, as her editor sees it, her condition may have helped the book.
''Laura doesn't have kids and she doesn't go out, so for years this was her central passion,'' says Jonathan Karp, executive editor at Random House, which published Seabiscuit. ''Even though she has this illness, in a way it may have given her a focus and impetus that allowed her imagination to find some kind of deeper connection to Seabiscuit that perhaps other writers might not have. She got obsessed.''
Karp and Hillenbrand's agent, Tina Bennett, of Janklow & Nesbit Associates, say that Hillenbrand's illness did not slow her progress at all, despite several health setbacks, including a temporary loss of sight in her lower left eye. It did alter the standard relationship among writer, agent, and editor. Rather than Hillenbrand going to New York to work on the book, Karp went to Washington, D.C. Bennett did not actually meet Hillenbrand until one year after the book was published and they had worked together for five years.
But the editing homestretch—several grueling weeks and so many late nights—did Hillenbrand in. The day after she turned in her manuscript in the fall of 2000, Hillenbrand collapsed. Or, as she puts it, ''the sky fell again.'' The world began to pitch and hurl. The night sweats resumed in force. The exhaustion crept through her bones. Now she is able to read and write only a few paragraphs a day. She spends those paragraphs like a miser: a few e-mails one day, a few sentences in the article she is working on about her chronic fatigue. If her recurrence is, as she says, ''the price I am paying for the book,'' she feels it has been well worth it.
''The illness got me used to accepting that I couldn't do or have very much. All possibility disappeared from my life,'' says Hillenbrand. ''Now, with all this love coming in and people believing in me, I can believe in myself. So in a way, Seabiscuit is to me what he was to people in the Depression. He is possibility.''
Sally Jacobs is a Staff Writer for The Boston Globe. This was a lead story from that newspaper on 10/24/2002. © Copyright 2002 Globe Newspaper Co. Copyright permission granted.
Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.