Edit: Laura Hillenbrand tells me via Facebook that she’s never stopped speaking out about the illness. I have clearly missed those interviews, so I’ve corrected this entry.
Laura Hillenbrand – author of Seabiscuit and, most recently, Unbroken - is interviewed in Tara Parker-Pope’s “Well” blog at the NYT. The title – “An Author Escapes from Chronic Fatigue Syndrome” – is unfortunate and sort of misleading, but the interview is a good one. (Also: Don’t read the comments. The IT HAS TO BE LYME DISEASE! people are out in force. When all you have is a hammer…)
Ms. Hillenbrand has spoken publicly about ME/CFS before: Her award-winning essay “A Sudden Illness” appeared in the New Yorker in 2002.
I came upon that essay – which, by the way, took her six months to write – not long after I fell ill, and I’ve recommended it countless times. It is the best summation I’ve come across of so many aspects of the illness. I was struck, when I first read it, by how precisely alike our experience of the onset was. I, too, thought I had food poisoning. I also found it comforting, then, that my illness was not as severe as hers. And of course, in the intervening years, it has become so.
She does a beautiful job of conveying in “A Sudden Illness” what it was like in the years before the discovery of XMRV in late 2009. She lived many more of those than I did. It was a recipe for despair, to try to look for a cause or a reason. There was so much bad and conflicting information out there, and it was impossible to know what to believe.
I have had so many of the symptoms and experiences she describes therein – the weight loss, the mental confusion, the constant fever, the overwhelming vertigo, and the more frightening ones, too. I’ve had some dismissive doctors as well, but thankfully, by the time I fell ill, the illness had a name, if a trivializing one. Unfortunately, as she describes, after only a short time, I, too, knew more about it than my doctors.
Ms. Hillenbrand is certainly the best-known person we have with ME/CFS. I certainly understand not wanting to make her career about the illness – my blog title is No Poster Girl, after all – but the fame her talent and hard work has brought her means she has the power to make people take notice of it in a way few of us with it do.
Laura Hillenbrand and I have one other thing in common, but it’s a lucky trait, not an unlucky one: We are both married to philosophers! Her husband, G. Borden Flanangan, teaches at American University.
Anyhow, I’ve kept you long enough. Go read that essay!