Friday, August 19, 2016

Laura Hillenbrand: Leaving frailty behind

Author Laura Hillenbrand: Leaving frailty behind
Paul Costello on August 17, 2016

Laura 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.

Thursday, August 18, 2016

Hillary's stance on Disability

The thought of considering Clinton felt hypocritical of me.  I told myself, "How can I support someone who probably cares more about Wall Street than me?"  But I certainly couldn't consider Donald Trump, who mocks disabled people and assumes we're stupid enough to think that's not what he was doing.  So, begrudgingly, I told a Hillary supporter with a disability that I was now considering supporting Hillary. He immediately introduced me via email to a blind Clinton staffer. Within literally minutes, she emailed me at 9 p.m. saying she would like to speak to me about the campaign. I was so encouraged by how quickly they responded, after the months I was ignored by Bernie.
She didn't treat me like a nuisance like the Bernie campaign did but rather an asset.  She wanted to know my legal and advocacy opinion on disability policy.  She explained in detail how Hillary planned to initiate change for us with sophisticated, legal political strategy.  And, then she asked me to come on board and help the campaign best meet the needs of the disability community ...  I soon realized that the Clinton campaign didn’t just care about the disability community; they hired us and treated us like the intelligent people we are. 

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