Until I Say Good-Bye: My Year of Living With Joy [Versión Kindle]

The sickest she'd ever been was "after I ate a bad chicken sandwich in South America."

And now her left hand doesn't work.

Susan Spencer-Wendel lives in reality --- she's a veteran journalist for the Palm Beach Post.

It doesn't take her long to figure out she has amyotrophic lateral sclerosis (ALS): Lou Gehrig's disease.

She's married, with three young kids.

She's 44 years old.

She has a year to live.

And not a pleasant year. Muscles weaken. Walking becomes impossible. Then swallowing becomes a challenge. Then breathing. In the end, the patient finds herself trapped in a non-functioning body, waiting to die.

HarperCollins paid $2 million to publish "Until I Say Good-Bye" and Universal paid another $2 million for the movie rights, and neither did it so they could present a chronicle of death at work. Their reason is right in the subtitle: "My Year of Living With Joy." Because that was her resolution. Not to commit suicide before she couldn't. Not to despair. But to spend her time wisely:

"To take the trips I'd longed to take and experience each pleasure I'd longed for as well.
To organize what I was leaving behind.
To plant a garden of memories for my family to bloom in their futures.
Lou Gehrig was an athlete. ALS took his talent immediately.
But I was a writer. ALS could curl my fingers and weaken my body, but it could not take my talent.
I had time to express myself. To build a place of my own with comfy chairs, where I could think and write and sit with friends. Where I could wander through my own garden of memories and write them down.
A wandering that became, beyond my every fantasy, this book.
A book not about illness and despair, but a record of my final wonderful year.
A gift to my children so they would understand who I was and learn the way to live after tragedy:
With joy.
And without fear.
If Lou Gehrig could feel lucky, then so could I.
So should I."

It's hard to know what to say about this book. Really, it's beyond criticism. To write anything negative isn't to comment on its literary merits, it's to dish Susan Spencer-Wendel's life. And you can't. All you can do --- if you can read this book at all --- is to turn the pages, slack-jawed, in awe at her insistence on having powerful, individual experiences with her husband, her kids, her sister, her best friend and the birth mother she's only recently met. It seems impossible, but she gets around: the Northern Lights, Budapest, swimming with dolphins.

As I read this book, I discovered something unnerving: I was reading two books. One is the book she typed on an iPhone with her right thumb, the book Bret Witter then polished for her. The other is my book, the one I'd write if I knew I had a year to live. I'd like to think I'd have a short, private cry, then get on with my life. Not as a stoic, but because I understood that we're all dying, and the only difference between everybody else and me was that I more or less knew when. I'd like to think that's some kind of advantage.

And I'd like to think Susan Spencer-Wendel's final wish would be mine: "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."

How utterly soppy. How totally terrific.

Susan Spencer-Wendel was a busy mom, wife and courthouse reporter at The Palm Beach Post when she was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig's disease). Instead of folding up and planning a funeral, she bucks up and plans trips, memories for her family and friends.

She visits Hungary, Cyprus, the Yukon, and New York City, each trip with a goal. She takes each of her three children on a special trip they chose. She also has a beautiful chickee hut built in her backyard, where she writes the book, entirely with her right thumb on her iPhone.

The book is more funny than sad. She shows us how much one person can accomplish in the face of life-changing news, and how important it is to show the people around us how much we love them.

When a light is vibrant & bright, it captures your attention & can been seen from a great distance. So is the apt description of the author & her story. A talented writer showing her best stuff, her passion for the task is splashed on every page. I had the pleasure of meeting this inspirational woman on a serendipitous flight in January 2011. In the book, her actual diagnosis is made after we met but I distinctly recall her openness & her curiosity about the ease of using the touchscreen of the iPad I was using as she explained she had ALS & would soon be unable to use a keypad. As she tested out my iPad, she spoke of her concern for her future, more specifically her children's. We discussed books & she recommended The Guernsey Literary & Potato Peel Society. She shared her intention of writing her own book. I told her I would love to read the manuscript someday & we parted with mutual well wishes that could have been the end of it but something about her made me google her & then friend request her on Facebook. I wanted to hear the rest of her story & committed to pray for her every time her page popped up on my newsfeed. In the two years I have followed her progress, I have became an admirer of her purpose, the value she places on loved ones & her tenacity to finish on her own terms. She isn't reporting on some court case, this book isn't a job to her, it is a love letter to her children & a thank you to her husband and all those she loves. ITS ALL IN THERE! Her book has captured my attention & will be a far reaching story to any & all who read it. I'm so glad the light that shines from Susan illuminated my world ever so briefly & kept me curious for this book. I bought the Kindle version but will have to have the hard copy for my library too! I look forward to the film & wonder who will be able to portray her justly.

Thank you Susan for sharing the guts & the glory of a life, though not perfect but transparently, well lived.

I recommend this powerful book and even though I was just a stranger in a seat next to you on an unremarkable flight, Susan, I will remember you!