2015), and Fox News produced a one-hour
special on his life, the majority of Americans who have watched him on PBS and Fox
News productions had no idea he was sitting in a wheelchair.
Antony Weller, novelist, became a gradual paraplegic through multiple sclerosis (MS).
Before the disease changed his life, he was a jazz and classical guitarist, and had
published several books of fiction and nonfiction. Now he had to write through dictation.
About his physical disability, he states that Mark Twain, Henry James and even John
Milton (after he became blind) used dictation. He said, “Complaining changes nothing,
and doesn’t make you feel better—so you learn not to complain.”
Then there is Jean-Dominique Bauby, AKA Jean-Do, who was the editor of the French
magazine Elle. After suffering a massive stroke in his forties, he found himself locked in what he called a ‘cage’ called ‘locked-in syndrome’ that kept him imprisoned through
total body paralysis, unable to communicate with those his loved. He escaped through his
magnificent imagination and was able to not only converse with them, but to write a
memoir. The Diving Bell and the Butterfly became an award-winning movie. How did he
accomplish this fete? By working out a system of dictation using the alphabet and the
blinking of his left eyelid. He was able to use his memories and mind's eye to feel alive
again and escape his entrapment through the words that needed to be spoken, especially
to his children. His indomitable fortitude was a magnificent tribute to the human spirit.
Bauby died a few days after publication of the book.
My nephew Brian is another one of my heroes. Due to damage of his motor system, he
is unable to look after himself and requires around the clock care. His caretakers bathe,
feed and dress him. But Brian, who is bilingual, is blessed with a phenomenal memory
and intelligence and has one of the most loving hearts I know.
I have never forgotten the time he received a pair of pajamas. He said, “I’m so lucky.”
I choke up even as I write this, because it is so humbling. Brian has never felt sorry for
himself. Although I have relatives who have never flown to Michigan, Brian has made
the trip twice despite the challenges it brought.
My sister spent much of her pregnancy in bed, but Brian was born three months
prematurely, weighing in at only two pounds. Prior to the latter part of 1960, there were
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