I don’t know if I have Chronic Fatigue Syndrome. Sometimes I suspect that I do, like yesterday when I was exhausted from the moment I got up until I went to bed. But, CF fatigue isn’t necessarily the same as fibromyalgia fatigue. While CF is often present with Fibromyalgia, it’s a separate (although sometimes overlapping) disorder.
In order to understand it, I put myself back in high school. I had a particularly serious case of mononucleosis which who knows, may have something to do with my struggles today. I remember that getting out of bed seemed nearly impossible and when I did, say to put on some clothes, I had to immediately rest. When I wanted something from my father, I had to dial my grandmother using the phone in my bed, and asked her to call my dad for me. Mind you, we were in the same 1800 square foot house. However, simply yelling “dad, come here” was overwhelming. I could only muster the energy to whisper into the phone. Thankfully after a difficult 3 weeks, I was able to resume some semblance of normal activity, but it took at least 6 months to return to my normal self.
When I think of those days, I feel sorry for that 17 year old girl, but I can’t help but feel guilty admitting that I do. After all, I knew that I would feel better in a matter of weeks. People with CF have no such expectation. That’s why you may be surprised when I tell you that I find CF inspiring; specifically, Laura Hillenbrand’s 30 year struggle with the disease. There’s no question she has it; CF is an incredibly debilitating struggle for her. One that has left her not only house bound, but room bound.
If the name doesn’t sound familiar, perhaps her books will. Laura has written 2 best sellers that were adapted to successful movies, Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival, Resilience and Redemption. Not only is her work exceptional, she’s done it with the most debilitating fatigue you can imagine. Every day when I think, “I can’t possibly work on my book” I think of Laura and what she has achieved.
Last year I accidentally came across an article about Laura Hillenbrand. It was written in 2010 by Monica Hesse of the Washington Post. I have literally thought of this article every day since. In it, Laura explained that she has gone years without walking beyond the confines of her home. When Laura described her recent wins, she mentioned taking a shower standing up and accompanying her husband to Starbucks. Granted, Laura couldn’t get out of the car when she got there, but after spending years seeing nothing beyond her window, this was a special day.
In 2010, Louis Zamperini of Unbroken fame, was still alive. He told the Washington Post he didn’t know why all his communication with Laura was on the phone. When he learned the true reason, he sent Laura his Purple Heart saying, “You deserve this more than me”.
The article went on to share much more, some of which I included below. You can read the article in its entirety here:
“I have to detach myself completely from aspirations,” Hillenbrand says, discussing how she has learned to cope with her illness. “I hardly ever listen to music anymore because it arouses all of this yearning in me.” She numbs herself to the things she cannot have.
Journalists have liked pointing out the irony of Hillenbrand’s work: A woman for whom walking around the block constitutes a marathon writes about the finest specimens of physical endurance.
It’s not irony, she says. It’s escape. “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.”
Asked to describe, in detail, what exactly the rather blithely name hat exactly the rather blithely named chronic fatigue syndrome feels like, Hillenbrand says, “I got sick when I was 19, and I’d been a really healthy 19-year-old, so I don’t have a lot to compare it to. Does it feel like the pain after you give birth? I don’t know.” There is nauseating vertigo. On bad days, “if the house was burning down, I could not sit up. It’s really a state of acute suffering when you get like that. It’s kind of like pain, but . . . ” she pauses. “I don’t know how to describe it.”
A tremendous love story (Note: A nytimes.com article published in December 2014 indicates Laura and her husband are separated).
They’d met in college at a campus deli, her a sophomore, him a senior. They’d been dating for just five months when Hillenbrand got sick, which happened suddenly and nonsensically, like a book that has had all of its middle pages torn away. First, they and a friend were driving back to Kenyon College after spring break. Then, Hillenbrand could barely move. Food poisoning, doctors said, but it wasn’t.
Eventually Hillenbrand was forced to leave Kenyon College. She relocated to Chicago where her boyfriend had been accepted to graduate school, but while visiting her mother in Maryland she collapsed and knew she’d never be strong enough for the flight back to Illinois. Washington became her default home. She and Flanagan remained apart until he could find a job in the area, at which point Washington became his default home, too.
At this point, I didn’t feel I knew enough about Laura. Before long, I came across a 2014 article in the New York Times titled, “The Unbreakable Laura Hillenbrand”. http://www.nytimes.com/2014/12/21/magazine/the-unbreakable-laura-hillenbrand.html?_r=0.
I’d like to say this article changed my life, because it taught me anything is possible. While I know that in my mind, getting my body to go along with it can be hard! But, I know now this is a limitation I have. It’s not necessarily something I have to have.
The article is too long and too important for me to summarize here. But I will share with you the most meaningful part of it, in my mind at least. I may not believe I can do anything yet, but after reading this, I certainly know opportunity can be found in the most unlikely places.
Expert from “The Unbreakable Laura Hillenbrand””
It may be tempting to think of Hillenbrand as someone who has triumphed in spite of her illness. The truth is at once more complicated and more interesting. Many of the qualities that make Hillenbrand’s writing distinctive are a direct consequence of her physical limitations. Every writer works differently, but Hillenbrand works more differently than any writer I know of. She has been forced by the illness to develop convoluted workarounds for some of the most basic research tasks, yet her workarounds, in all their strange complexity, deliver many of her greatest advantages. When I asked, for example, how she reads old newspapers on microfilm without traveling to a library, I was stunned to discover that she doesn’t. “I can’t look at microfiche,” she said. “I couldn’t do that even in my good vertigo years.”
Instead, Hillenbrand buys vintage newspapers on eBay and reads them in her living room, as if browsing the morning paper. The first time she tried this, she bought a copy of The New York Times from the week of Aug. 16, 1936. That was the day Seabiscuit’s team — his owner, Charles Howard; his trainer, Tom Smith; and his jockey, Red Pollard — first collaborated at the Detroit Fair Grounds. Hillenbrand told me that when the newspaper arrived, she found herself engrossed in the trivia of the period — the classified ads, the gossip page, the size and tone of headlines. Because she was not hunched over a microfilm viewer in the shimmering fluorescent basement of a research library, she was free to let her eye linger on obscure details.
“There was so much to find,” she said of her reading. “The number-one book was ‘Gone With the Wind,’ the Hindenburg flew over Manhattan with a swastika on it and Roosevelt made a speech saying America would never become involved in foreign wars.” Soon she bought another newspaper, and then another. “I wanted to start to feel like I was living in the ’30s,” she said. That elemental sense of daily life seeps into the book in ways too subtle and myriad to count.
It was in those vintage newspapers that Hillenbrand discovered her next book. “I happened to turn over a clipping about Seabiscuit,” she said. “On the other side of that page, directly the opposite side of the page, was an article on Louie Zamperini, this running phenom.” Hillenbrand had no idea what became of Zamperini in the years to come, as the war broke out and young men gathered on Hamilton Field near San Francisco to fly B-24 bombers across the Pacific, but something about the young runner caught her attention. Maybe it was the mischievous look in his eye or the way he tipped forward when he ran, as if falling toward the finish line. Maybe it was the way, as she would later write, “his ears leaned sidelong off his head like holstered pistols, and above them waved a calamity of black hair.” Whatever it was, Hillenbrand jotted Zamperini’s name in her research notebook on Seabiscuit and promised herself, “I’ve got to find this guy when I’m done.”
I’ll leave you with a quote from Laura H. It’s from her interview with Elle magazine in 2010 and explains why she loves writing. It also mentions her husband, which of course is bitter-sweet since they’ve separated. Maybe the rest of their story is yet to be written…
“I’m dealing with things that frighten me and with moments that are really miserable,” Hillenbrand said when we met. “But overall I feel happy in a way that can’t be shaken. A great deal of that is him”—she flicked a smile toward Flanagan. “And a great deal is the writing, because it’s the one way in which what I am in my essence can be realized. Everything else has been compromised, but I found a way to be who I really am on the page in a way I can’t be in my living-life, and that has made me really, deeply happy.”
And that my friends, is what I call an inspiring story.