wave it my way.
People with the severely disabling chronic autoimmune disease APS-2 (still being called CFS, ME, or CFIDS in many people) have a celebrity spokesperson in Laura Hillenbrand.
Her latest book is Unbroken: A World War II Story of Survival, Resilience, and Redemption.
Laura’s success would be exceptional for most people, but hers is stunning. She did her research and writing, very slowly and carefully, from bed – not an unusual situation for people with CFS, as the worst sufferers are completely bedbound.
Like most people with CFS, Laura is excruciatingly weak from the disease. She spreads out the personal and professional activities she needs to accomplish to avoid overdoing and relapsing into a worse physical condition. “Overdoing” can mean as little as sitting up, walking, or riding in a car.
Laura’s experience with CFS typifies the disease’s sudden onset, its course, and its personal and social impact on most of the people who have it.
What Laura endured from the medical establishment in the 1980s and 1990s when CFS was still nearly unknown was horrific.
I identify with what Laura went through. Most people with “CFS” can identify with it. Because much of it is still going on.
I had an experience similar to Laura’s, as my untreated, lifelong autoimmune disease devolved into “CFS” in 1982. Most of us have endured scoffing from doctors and family doubt.
With the disease, which is physical, not psychiatric, comes a natural disinclination to accept the sudden permanent disability that one must endure. Most of us struggle to work, to live, and to maintain a normal life, which can lead to worsening of the condition.
The most important thing to do when one feels tired, including when one has a debilitating autoimmune disease, is to sleep as much as possible; and to rest, supine if possible, when awake.
The earlier in the disease course that this “treatment” can be put
into practice, the better may be the outcome for some people.
Struggling to care for oneself with “CFS” is overwhelming,
and often impossible.
People with the disorder struggle everyday to do things that people without it can do without thinking, planning, or becoming ill afterwards.
Laura has, now, what we all need, loving people to care for her.
Care for your beloved person with “CFS”.
And please give to research.
We all need that magic wand.
- Cathi Carol, 2012
Articles by Laura Hillenbrand:
Laura Hillenbrand’s Defining Moment
Laura Hillenbrand, CFIDS website, 2009
Interviews with Laura Hillenbrand:
“A Matter of Dignity” and “Success & CFIDS: Fighting the Public Perception”
Mark Giuliucci, CFIDS Chronicle, Summer 2001
CFIDS Interviews with Laura Hillenbrand
- “Hillenbrand knows that some work remains before the general public completely understands the disease. She tells about one piece of e-mail that she received shortly after Seabiscuit was published. ‘You wrote a great book,’ it says. ‘Too bad you had to fake an illness because you’re lazy’.”
Chronic Fatigue Forced Author to Pace Herself
Monique Angle, USA Today, July 23, 2001
Against All Odds
Sally Jacobs, The Globe, October 24, 2002 (Reprinted at the M.E. Society of America website.)
Malcolm Jones, Daily Beast / Newsweek, November 11, 2010
- “Is there a reason Laura Hillenbrand keeps writing about runners? ‘Unbroken,’ her follow-up to ‘Seabiscuit,’ is about a man with Olympian survival instincts. Kind of like the author herself.”
The Defiant Ones
Steve Oney, Wall Street Journal, November 12, 2010
- “In her new book, the author of ‘Seabiscuit’ turns to the unimaginable ordeal of an Olympic athlete and WW II hero. Because of her own debilitating illness, they struck a special bond.”
Laura Hillenbrand releases new book while fighting chronic fatigue syndrome
Monica Hesse, Washington Post, November 28, 2010
- “Laura Hillenbrand says she copes with her illness by detaching herself completely from aspirations.”
Chronic Fatigue Syndrome: A Celebrated Author’s Untold Tale
Aaron Gell, Elle, December 2, 2010 (One page version)
- “Laura Hillenbrand spins irresistible accounts of heroic figures undaunted by long odds.
But she’s frequently so unwell that she scarcely leaves home.”
Q&A with Seabiscuit, Unbroken author Laura Hillenbrand
Tim Layden, Sports Illustrated, December 15, 2010
We Knew Them When
Kathleen Wheaton, Bethesda Magazine, July-August 2008
- “Meet six authors who grew up here and have hit it big in the literary world.”
Video of Laura Hillenbrand:
Laura Hillenbrand and Louis Zamperini on The Today Show discuss ‘Unbroken’
Random House Website.
A war hero’s “Unbroken” bond with his biographer
CBS News, May 27, 2012
- “Author Laura Hillenbrand spent seven years researching and writing her bestselling book “Unbroken,” a portrait of Olympic track star, World War II hero, and Christian role model Louis Zamperini. But because of her health condition, she never met him in person – until recently. Chip Reid reports.”
Laura Hillenbrand’s Website.
Laura Hillenbrand at IMDB.
Laura Hillenbrand at Facebook.
© 2013 Cathi Carol. All rights reserved. Please do not republish without permission.
Last Updated: March 30, 2013
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