Millions will flock to see Unbroken, the film, when it’s released on Christmas day. The book, of course, was written by Laura Hillenbrand, the author of Seabiscuit, who has had a severe and decades-long case of chronic fatigue syndrome.
It presents a huge opportunity for the public to understand that this is a real illness with severe consequences which can affect anyone – even one of the best known and loved authors in the world. And once you’re caught you’re probably not going to get out of it.
With some of the best medical care in the world an hour’s drive away, Laura Hillenbrand, twenty-seven years after she became ill, remains mostly home bound. All the medical resources in the world, after all, can’t help you when little is known about your disorder.
The Face of ME/CFS – Every Five Years or So.
Laura Hillenbrand clearly doesn’t want to be the everyday face of ME/CFS, but every couple of years, when a book or a movie about a book comes out, she is willing to be very clear about its devastating effects.
In this weekend’s New York Times Magazine (“The Unbreakable Laura Hillenbrand“) and, in particular, in the Washington Post (Laura Hillenbrand releases new book while fighting chronic fatigue syndrome) articles, Laura talks about the disorder frankly and at length. Both present vivid portrayals of the limitations the disorder presents.
“She cannot attend literary festivals, deliver bookstore readings or give library talks and signings. Even the physical act of writing can occasionally stymie her, as the room spins and her brain swims to find words in a cognitive haze. There have been weeks and months — indeed, sometimes years — when the mere effort to lift her hands and write has been all that she can muster.” The Unbreakable Laura Hillenbrand
Not many people go to work to escape a disorder that’s ravaging their bodies, but that’s exactly what Laura does. She finds “a way out” in her characters.
“I’m looking for a way out of here. I can’t have it physically, so I’m going to have it intellectually. It was a beautiful thing to ride Seabiscuit in my imagination. And it’s just fantastic to be there alongside Louie as he’s breaking the NCAA mile record. People at these vigorous moments in their lives – it’s my way of living vicariously.” Laura Hillenbrand
Still Very Broken
“I sent her one of my Purple Hearts. I said, you deserve this more than me.” Louis Zamperini
In some ways, things have changed – Laura’s found new drugs to help suppress some of her worst symptoms – and in many ways it hasn’t. She still has chronic vertigo and is still mostly homebound.
But doctors still don’t study ME./CFS. There are still no drugs for it, and the NIH, incredibly, is still spending about the same paltry amounts on it that it was twenty-seven years ago.
Laura wasn’t taken seriously back then – and the disorder is not being taken seriously now. The effects of that neglect, of course, are immense.
“I was not taken seriously, and that was disastrous,” she said indignantly. “If I’d gotten decent medical care to start out with — or at least emotional support, because I didn’t get that either — could I have gotten better? Would I not be sick 27 years later?” Laura Hillenbrand – The Unbreakable Laura Hillenbrand
Circumstances are somewhat better today but not by much. Other Laura Hillenbrands – young women with seemingly bright futures ahead of them – are having those futures snatched from them every day. They’ re not being taken seriously. They’re not being believed by their families. They’re getting dismissed by their doctors. They’re being told they’re depressed – to just buck up and get out there and exercise – and they’re buying into it, hoping against hope as their bodies are screaming in pain, that somehow the doctors are right. Of course, just like Laura decades ago, they’re getting much worse.
“Energy is finite, and she typically has enough for one activity a day. She is constantly measuring herself, monitoring herself.” Washington Post
It’s deja vu: thirty years later the same scenario is being repeated day in and day out. The system is still … broken.
Almost Unprecedented Success
We don’t hear from Laura very much, but the world should hear about her. She’s not just a popular author – she’s basically “rewriting the book” on what it means to be a successful writer. She’s an outlier in the publishing world. Barnes and Noble bookseller Sallye Leventhal had this to say with regard to Unbroken: “There are other phenomenal best sellers, but not this phenomenal,” she said. “Not with this velocity, year after year after year.”
The hardcover edition of Unbroken was on the bestseller lists for 185 continuous weeks. It sold so well that her publisher, Random House, waited almost four years before releasing the paperback version. Seabiscuit, her first book, and Unbroken have sold over 10 million copies.
“I have to detach myself completely from aspirations. I hardly ever listen to music anymore because it arouses all of this yearning in me.” Laura Hillenbrand Washington Post
Laura Hillenbrand’s story not only presents an opportunity to “reset” the image of chronic fatigue syndrome in the public’s eyes, but to give other young women (and men) struggling with dismissal and neglect some understanding of what they’re going through – an understanding that could help them, unlike Laura, perhaps avoid the sinkhole of depression she initially fell into.
Her ME/CFS story needs to be gotten out, but it’s not clear that it is – at least not on a large enough scale. Corrine Blandino, a former athletic trainer who has been mostly home bound for decades, recently asked her nurse – who is very up on chronic fatigue syndrome – whether she was aware that Laura has chronic fatigue syndrome. She didn’t. She knew Laura was ill – but she didn’t know she had ME/CFS.
Let’s make it our goal this holiday season to make sure as many people as possible know Laura Hillenbrand has ME/CFS. Let’s also let them know there’s no mystery why she and so many others are still sick decades later. A medical system uninterested in helping her has guaranteed that.
Laura Hillenbrand may be unbroken, but the medical system that should be helping her is broken.
Emailing and sharing on Facebook and Twitter the New York Times and Washington Post articles is a good ways to start. Telling family and friends about Laura’s story as you see the movie is another. Commenting on her and the movie’s Facebook site is another. I compared the story of her travails with ME/CFS to Louis’s travails during the war. Louis Zamperini was tested severely during the war, but afterward his life was a piece of cake compared to Laura’s.