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Laura Hillenbrand articles on ME/CFS

Discussion in 'Action Alerts and Advocacy' started by Roy S, Jul 28, 2011.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    Laura Hillenbrand wrote an article about her illness experiences several years ago that I just recently found. It's easily one of the best things I've ever read on these subjects; probably the best. A note of caution though; there are strong statements in it.

    Laura Hillenbrands Defining Moment
    By Laura Hillenbrand

    When CFS came crashing down on me in 1987, It seemed that there was nothing it did not take. But for me, the cruelest twist was not what it stole, but what it left behind.

    Virtually unstudied and invisible to standard diagnostic test, CFS existed in a vacuum of understanding. In the absence of easy answers, an arrogant, irrational assumption was made. If extant tests revealed nothing, the problem wasnt that medical knowledge was limited, it was that patients werent really sick.. CFS, it was decided, was simply hypochondria or fakery. In the horrifying spring of 1987, I learned that I was facing not only a catastrophic disease, but a poisonous stigma as well.

    Like so many other patients, I felt the stigma every day. I was called lazy and a deadbeat and accused of playing for attention and pretending to be ill. From doctors, acquaintances, even relatives, I received not compassion and care but hostility, derision, disgust, dismissal. When I asked for help, I was excoriated for troubling other people just so I could enjoy being waited on. Intellectually, I understood that my illness was real, and that I was blameless. But emotionally, it was impossible to be steeped in scorn without absorbing it. CFS took everything from me, and in its place left grinding, relentless shame. I was ashamed of myself, ashamed of the failure of my body, ashamed of my helplessness.

    That shame was ruinous. I became so afraid of encountering contempt that I avoided seeking help even when I desperately needed it, compounding my suffering exponentially and leading me into relapses. When I couldnt avoid asking for help, I felt overwhelmed by guilt, especially when the assistance I requested was given with bitterness. Over and over again, I drove myself to collapse to prove that I wasnt malingering. Worst of all, I felt so suffused with shame that I couldnt offer my body the compassion that it needed to heal.

    My disease became my dirty little secret. Whenever I could hide it, I did, fearing that disclosure would bring humiliation. When I began to write professionally, working almost entirely from bed, I hid my illness from all but my most trusted editors. I revealed it to only one interviewer, a woman whom I trusted enough to explain why I couldnt accept her invitation to ride her horse. CFS? she said. I thought that was all just made up. When I first spoke to the man who would become my editor at Random House, I said nothing about my disease, sure that he would never agree to work with me if he knew my secret. It was my literary agent, who knew I had nothing to be ashamed of, who eventually told him.

    As I prepared for the release of my book, Seabiscuit: An American Legend, I stood at a crossroads. A book tour was customary, but far beyond my capabilities. I told Random Houses publicist about my disease and the impossibility of traveling even very short distances. Interviewers would have to come to me. My publicist said that the media was going to need an explanation. Was I wiling to go public with my illness?

    The prospect was terrifying. It seemed possible, even likely, that I would meet with the same derision that I had faced from the beginning, only this time it would be public, and on a far greater scale. But as scary as it was, it was also a golden opportunity to educate the world about a disastrously misunderstood disease. I had to say yes. I penned a short essay explaining my illness and the obstacles it had created as I wrote my book, and my publicist included it in my press packet. I held my breath.

    The next three years were a whirlwind. I did hundreds of interviews, and it seemed that every journalist wanted to talk as much about CFS as about Seabiscuit. At first, telling my story was intensely uncomfortable. But my perspective quickly changed. I began to focus on the fact that I was speaking not for myself, but for countless other people who were enduring CFS. Though I was bedeviled by the sense that my own illness was unseemly, when I thought of all the other people whose lives had been stolen from them through no fault of their own, and whose suffering was exacerbated by an unjustified stigma, all I felt was compassion. That change in perspective freed me, and suddenly all I wanted to do was fight for understanding. I became more and more involved with CFS advocacy. I spent a full year writing a lengthy article for the New Yorker, telling my story with the raw honesty that I had never been able to muster before. The experience was transforming. All of my useless years of suffering now had a meaning, a purpose. I could use them to help someone else.

    The epiphany came in an unlikely way. My struggle with CFS was the subject of a story on 20/20. Just after the show aired, a couple of shock jock radio deejays in a major city mocked my illness on the air, suggesting that it was faked. Here was the thing I had feared, but my reaction startled me. I didnt feel humiliated. To my astonishment, I didnt even feel the slightest bit ruffled. I thought the deejays foolish and depraved, but the derision no longer found a home in me. I shrugged it off and forgot about it.

    The sense that my illness was disgraceful was finally gone, thanks to the work of advocacy. It is the greatest paradox of my experience with CFS that public exposure, the very thing that I had avoided because of the shame it triggered, turned out to be the one thing I needed to shed that shame forever.

    <http://www.cfids.org/cfidslink/2009/010708.asp>
    barbc56 and ahimsa like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I havent read 'Seabiscuits' , can anyone give it their rating and maybe compare to Oslers web??

    cheers!!!
  3. Valentijn

    Valentijn Activity Level: 3

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    Muahahaha. *coughs* I'm laughing WITH you, not at you! :)
    "Seabiscuit" is a novel about a horse that got very famous (at least in the US) when it became a movie about a horse.

    The lucky horse doesn't have ME, just the author.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I thought oslers web was a horse????????????????????????????
    hehehe
  5. Tulip

    Tulip Guest

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    She is such an amazingly expressive writer.

    Seabiscuit the movie starred Tobey Maguire (Spiderman fame). Laura really hit the bigtime with it. Kind of on a par with Black Beauty..

    http://en.wikipedia.org/wiki/Seabiscuit_film
  6. meadowlark

    meadowlark Senior Member

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    "Seabiscuit" is simply the greatest nonfiction I have ever read. I recommended it to half a dozen friends, who later told me that they thought "yeah, yeah, okay, it's great, but there are a lot of great biographies in the world." When they finally read "Seabiscuit" they were almost speechless trying to describe how beautiful it is.

    Though I adore the actors involved, IMO the movie really missed it.
    ahimsa likes this.
  7. Roy S

    Roy S former DC ME/CFS lobbyist

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    Seabrisket was a culinary masterpiece.;)
  8. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    One's about a horse, the other's about a spider.
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    ahimsa likes this.
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    There is a discussion thread here on the same subjects:
    http://www.mecfsforums.com/index.php/topic,8204.0.html
    Even though it was in 1970 I remember not feeling shame when I first got sick. It was dumped on me by others. And even though I was as deeply involved in advocacy as anybody ever has been, those feelings never went away completely.

    The bizarre thing is that the shame should be on those people who try to make patients feel shame.

    There was a great deal of shame dumped on early AIDS patients. One of the things I remember that turned it around was that gutsy lady Elizabeth Taylor speaking in public in front of Congress, in Hollywood, and at press conferences and elsewhere. She told people they should be ashamed of how they are treating AIDS patients. She acted like she was angry, but I don't think it was an act.
  11. Roy S

    Roy S former DC ME/CFS lobbyist

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    http://www.elle.com/Beauty/Health-Fitness/Chronic-Fatigue-Syndrome-A-Celebrated-Author-s-Untold-Tale

    Except for Flanagan, her boyfriend, who stuck by her, Hillenbrands tight circle of college friends seemed to forget all about her, and her family offered a collective shrug.
    The isolation was devastating. Its like you go to another place, like youre not
    on this planet anymore, Hillenbrand says. You reach a level of despair and suffering where you just dont feel like the rest of the world.
    She didnt get the family support she should have, says Hillenbrands sister Susan Avallon, a script reader. Thats one thing I still feel bad about. It took years, unfortunately, to find out how bad it was."
    Snow Leopard likes this.
  12. Roy S

    Roy S former DC ME/CFS lobbyist

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    Bumping this up for newbies that may have missed it;
    because that girl can write!
    barbc56 and Little Bluestem like this.
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I second meadowlark’s opinion of Seabiscuit.
  14. barbc56

    barbc56 Senior Member

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    She wrote a second book called Unbroken about a serviceman trapped in a raft for a long period of time during WWII. It received very good reviews and I have it on my reading list.

    Thanks, Roy:)

    Barb
  15. JT1024

    JT1024 Senior Member

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    From Amazon:

    The Story of Unbroken by Laura Hillenbrand

    Eight years ago, an old man told me a story that took my breath away. His name was Louie Zamperini, and from the day I first spoke to him, his almost incomprehensibly dramatic life was my obsession.

    It was a horse--the subject of my first book, Seabiscuit: An American Legend--who led me to Louie. As I researched the Depression-era racehorse, I kept coming across stories about Louie, a 1930s track star who endured an amazing odyssey in World War II. I knew only a little about him then, but I couldn’t shake him from my mind. After I finished Seabiscuit, I tracked Louie down, called him and asked about his life. For the next hour, he had me transfixed.

    Growing up in California in the 1920s, Louie was a hellraiser, stealing everything edible that he could carry, staging elaborate pranks, getting in fistfights, and bedeviling the local police. But as a teenager, he emerged as one of the greatest runners America had ever seen, competing at the 1936 Berlin Olympics, where he put on a sensational performance, crossed paths with Hitler, and stole a German flag right off the Reich Chancellery. He was preparing for the 1940 Olympics, and closing in on the fabled four-minute mile, when World War II began. Louie joined the Army Air Corps, becoming a bombardier. Stationed on Oahu, he survived harrowing combat, including an epic air battle that ended when his plane crash-landed, some six hundred holes in its fuselage and half the crew seriously wounded.

    On a May afternoon in 1943, Louie took off on a search mission for a lost plane. Somewhere over the Pacific, the engines on his bomber failed. The plane plummeted into the sea, leaving Louie and two other men stranded on a tiny raft. Drifting for weeks and thousands of miles, they endured starvation and desperate thirst, sharks that leapt aboard the raft, trying to drag them off, a machine-gun attack from a Japanese bomber, and a typhoon with waves some forty feet high. At last, they spotted an island. As they rowed toward it, unbeknownst to them, a Japanese military boat was lurking nearby. Louie’s journey had only just begun.

    That first conversation with Louie was a pivot point in my life. Fascinated by his experiences, and the mystery of how a man could overcome so much, I began a seven-year journey through his story. I found it in diaries, letters and unpublished memoirs; in the memories of his family and friends, fellow Olympians, former American airmen and Japanese veterans; in forgotten papers in archives as far-flung as Oslo and Canberra. Along the way, there were staggering surprises, and Louie’s unlikely, inspiring story came alive for me. It is a tale of daring, defiance, persistence, ingenuity, and the ferocious will of a man who refused to be broken.

    The culmination of my journey is my new book, Unbroken: A World War II Story of Survival, Resilience, and Redemption. I hope you are as spellbound by Louie’s life as I am.

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