Susan Spencer-Wendel wrote her life story on an iPhone using
only her right thumb, as all her other fingers have stopped
functioning since she was diagnosed with amyotrophic lateral
sclerosis, or Lou Gehrig's disease in the summer of
2011.
The memoir, titled 'Until I Say Goodbye' took her three
months to write and it will be published in March.
HarperCollins paid her $2 million for the story, which will
be translated into 25 languages, and Universal paid $2 million more
for movie rights.
HarperCollins calls Susan’s story 'a powerfully emotional,
inspirational and irrepressibly joyous look at the things that
matter most… Until I Say Goodbye is the fulfillment of her final
wish: "To make people laugh and cry and hug their children and joke
with their friends and dwell in how wonderful it is to be
alive."'
Just as the book hits store shelves, Spencer-Wendel expects
she will have lost her ability to speak.
'My decline is speeding up: each day I lose more steps and
words,' Spencer-Wendel wrote in an e-mail to her former employer,
the Palm Beach Post.
'I now choke at most every meal, episodes which leave people
around me screaming "Should we call 911?" Ergo, I don’t eat much
anymore.'
She believes she just celebrated her last holiday
season.
'I knew it would be this way,' she said. 'So for Thanksgiving
we had our major holiday event. Our entire families — 40 in all —
came. Was wonderful. Hectic, but wonderful.'
For Christmas, she asked for a ring that could be passed as
an heirloom to her daughter, Marina, 15, or the future fiancees of
one of her two sons one day.
Mine is a story of twinning good and bad fortunes, which I
find profound meaning in,' she wrote. 'I read every day a passage
about joy and sorrow from Kahlil Gibran’s "The Prophet." It is
about how "the deeper sorrow carves into your being, the more joy
you can contain."'
'"Is not the cup which holds your wine the very cup burned in
the potter’s oven?"
'I believe this,' she added. 'That in the long trajectory of
my family’s lives, a deep sorrow now will open worlds of feeling
for them in the future.
'This comforts me, brings me great peace. And the ability to
delight in today and today alone.'
When she found out about her diagnosis, she quit her job as a
courts reporter for the Post and planned a series of bucket-list
trips, including a trip to Canada's Yukon Territory with a best
friend and another to
Budapest with her husband of 20
years.
Details of her sojourns were published in the Florida-based
newspaper, to an unprecedented reader response, and
she transformed her dispatches into the
memoir.
Readers have been impressed by the writer's stoic attitude to
her illness, summed up by her declaration: 'Our
decision [is] to just be. Accept. Live with joy anyhow. And die
with joy, too.'
The BOOK
