Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Author Laura Hillenbrand: Leaving frailty behind

Author Laura Hillenbrand shares her story of “leaving frailty behind” as she copes with nearly three decades as a ME / CFS patient in a podcast with Stanford Medicine’s Scope. Hillenbrand eloquently shares her passion for life is far from diminished as she talks about how she has dealt with the challenges and adversity of a lengthy chronic disease. Laura Hillenbrand is a friend and strong supporter of OMF and has invited us to share her story. Hillenbrand remains steadfast in her commitment to OMF’s End ME / CFS project to find answers to help patients worldwide. Laura hopes you enjoy the podcast and that patients find inspiration and strength.

By Paul Costello, Stanford Medicine Scope August 17, 2016 (original post Stanford.edu Aug 17)

nullLaura Hillenbrand speaks like she writes: beautifully. She captures moments like getting on a horse to ride again in ways that make you feel like you, too, are riding and feeling the wind in your face.

Hillenbrand, one of the most successful writers of modern times, has suffered many years from Chronic Fatigue Syndrome or, as she likes to refer to it, Myalgic Encephalomyelitis syndrome. (She despises the term CFS, as she thinks it portrays those who suffer from it as lazy and contemptible.) Astonishingly, she wrote two great books while enduring vertigo and extreme exhaustion from her illness. Seabiscuit and Unbroken captured the imagination of readers and there are more than 13 million copies in print. Seabiscuit is the story of a racehorse that captured America’s heart during the Great Depression while Unbroken details the saga of Louis Zamperini, who survived a bomber crash in the Pacific in World War II and spent two and a half years as a prisoner of war.

For the summer issue of Stanford Medicine magazine, a special on well-being, I was curious what the word “well” meant to someone who has been unwell for so long – so I reached out to the author. In the conversation that followed, she graphically detailed how she was ravaged by the disease and how – after being stricken in 1987 – her symptoms at times were so severe that for two years she was incapacitated and house-ridden. She told me she has made a lot of recent changes in her medical treatments and in her life; she has pushed a lot of boundaries such as moving across country to Oregon to be with her boyfriend.

I sensed that Hillenbrand has uncovered a range of newfound strengths and is trying to leave her frailty behind. While she knows she can never escape her chronic illness, there is a sense of optimism and wonderment in her voice over her new beginnings.

As we ended our conversation I couldn’t help but ask about a new book.
She says she’s not ready to disclose the topic yet, but it will be “a whole lot of fun.”

Hopefully, readers who have loved her work will relish this 1:2:1 podcast for her startling frankness about how she achieved great writing success while besieged by a mysterious illness. For others who don’t know Hillenbrand’s writings or her personal story, I hope they’ll be in awe – as I am – that she did such excellent work while smothered in pain and darkness.

Author Laura Hillenbrand: Leaving Frailty Behind

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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