03/14/2013 06:43 am ET Updated Dec 06, 2017

Susan Spencer-Wendel Has ALS: Lou Gehrig's Disease. But She's Dying on Her Own Terms: Joyously

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.


To read an excerpt, click here.

Here's a video of Susan and her husband.

And, if you want updates, a link to her web site.

[reposted from]