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2:40 am
Sat March 9, 2013

Living A Life Of Joy 'Until I Say Good-Bye'

Originally published on Sat March 9, 2013 5:18 am

Susan Spencer-Wendel knows how to spend a year.

She left her job as an award-winning criminal courts reporter for The Palm Beach Post and went to the Yukon to see the northern lights. Then to Cyprus, to meet family that she never knew. She and her husband, John, took their children on trips on which her daughter got to try on wedding dresses and Susan got kissed by a dolphin.

She also got a new dog, put a splendid hut in her backyard and wrote a book. It's called Until I Say Good-Bye, and it's a memoir about the year she says she wanted to devote to joy — before she's claimed by ALS, a neuromuscular disorder often referred to as Lou Gehrig's disease.

Susan was diagnosed in 2011, at the age of 44. In an interview conducted a few months ago, she tells NPR's Scott Simon that when she got the news, she felt "equally grateful for a life of perfect health and determined to face it with bravery." And a sense of humor, too: Asked how they broke the news to their children, Susan and John say, "Very carefully! Don't overwhelm them with bad news. Just a little bit at a time." John must help speak for his wife, since muscle damage caused by ALS has affected her speech.

She wrote the book — all 89,000 words of it — on an iPhone, using her right thumb, the only finger she had use of. It took three months, and she compares the task to climbing a mountain or finishing a triathlon. "First and foremost, I wrote the book for my family and friends to have, to jog their memories after I'm gone," she says. "I also realized that, as a storyteller, it's an amazing tale of twinning good and bad fortune. Themes that touch everyday people: friendship, devotion and discovery."

Not everything went as planned during Susan's year of joy. She went with her best friend to see the northern lights — but no lights were to be seen. "As you know, life isn't perfect," she laughs. "The lights did not show. Still had a wonderful time there."

For John, it's been an understandably difficult time. "Every day I wake up, and I feel sad. That's my first emotion," he says. "And then I roll over, and I look at Susan, and I realize that she's not allowing herself to feel that way, so I can't, and I don't." Susan adds that she has down moments but is "generally doing pretty darn well."

That upbeat attitude is reflected in the book, which is genuinely funny. She says she didn't want to write something maudlin. "If you think it's funny, then we've made it home," she says.

We checked in with Susan this week. Asked how she's doing, she wrote: "My pat answer is, as well as can be expected. My body and voice become weaker every single day, but my mind becomes mightier and more quiet. You do indeed hear more in silence."

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

SCOTT SIMON, HOST:

Susan Spencer-Wendel sure knows how to spend a year. She left her job as an award-winning, criminal courts reporter for the Palm Beach Post and then went to the Yukon, to see the Northern Lights. She went to Cyprus, to meet family she never knew. She and her husband, John, took their children on trips in which her daughter got to try on wedding dresses, and Susan got kissed by a dolphin. She also got a new dog, put a splendid hut in her backyard; and she wrote a book. It's a memoir about the year she says she wanted to devote to joy before she's claimed by ALS, a neuromuscular disorder often known as Lou Gehrig's disease.

A few months ago, we spoke with Susan Spencer-Wendel from the studios of WPBI in Fort Lauderdale, Fla. And because muscle damage caused by ALS affects speech, she was joined by her husband, John. And Susan told us how she felt after being diagnosed with ALS in 2011, at the age of 44.

SUSAN SPENCER-WENDEL: I'm equally grateful ...

JOHN WENDEL: (Repeating) I'm equally grateful ...

SPENCER-WENDEL: ...for life of perfect health...

WENDEL: ...for life of perfect health...

SPENCER-WENDEL: ...and determined to face it...

WENDEL: ...and determined to face it...

SPENCER-WENDEL: ...with bravery.

WENDEL: ...with bravery.

SIMON: She's also faced her terminal illness with a great sense of humor. As for how she shared the news of her illness with her children...

SPENCER-WENDEL: Very carefully.

(LAUGHTER)

WENDEL: (Repeating) Very carefully.

SPENCER-WENDEL: Don't overwhelm them with bad news.

WENDEL: Don't overwhelm them with bad news.

SPENCER-WENDEL: Just a little bit at a time.

WENDEL: Just a little bit at a time.

SIMON: "My Year of Living with Joy," which she wrote with Bret Witter, and a little help from technology.

You wrote this book on your iPhone.

SPENCER-WENDEL: I did...

SIMON: (LAUGHTER)

SPENCER-WENDEL: ... 89,000 words...

WENDEL: Eighty-nine thousand words, all on the iPhone.

SPENCER-WENDEL: All I have is my right thumb.

WENDEL: She only has use of her right thumb, and that's the only way she could type.

SPENCER-WENDEL: Would you like us to read...

WENDEL: Would you like us to read an excerpt of how she did that?

SIMON: Please.

WENDEL: (Reading) By June, I had lost the ability to use my iPad. The keyboard was too big, and it tired my right hand to move it back and forth. I decided to write the book using the notes function on my iPhone, instead. John would slide the phone into my useless left hand; where, by serendipity, my curled fingers formed a perfect holder. I would type each letter with my right thumb - tap, tap - the only digit I could use. When I typed the last letter of the first draft in mid-September, three months after beginning in earnest, I couldn't believe what I had accomplished. I felt as if I'd pulled myself up a mountain with nine fingers tied behind my back. I let the moment linger, the thrill of a triathlon completed. I looked at John, who was sitting across from me in the tiki hut. I expected to smile, to beam with the dream fulfilled. I cried, and formed the words as best I could: What will I do now?

SIMON: Susan, help us understand why you wrote the book - for your children but also, you've always been a writer.

SPENCER-WENDEL: First and foremost, I wrote the book...

WENDEL: (Repeating) First and foremost, I wrote the book for my family and friends to have, to jog their memories after I'm gone.

SPENCER-WENDEL: And I also realized, as a storyteller...

WENDEL: I also realized that as a storyteller, it's an amazing tale of twinning good and bad fortune, themes that touch everyday people - friendship, devotion and discovery.

SIMON: Let me ask you about some of these trips. You went to the Yukon to see the Northern Lights with your best friend, Nancy.

SPENCER-WENDEL: Yes.

SIMON: But the lights were off.

SPENCER-WENDEL: As you know, life ain't perfect.

WENDEL: (Repeating) As you know, life ain't perfect. (LAUGHTER)

SPENCER-WENDEL: The lights did not show.

WENDEL: The lights did not show. We still had a wonderful time there.

SIMON: John, may I ask you a question?

WENDEL: Of course.

SIMON: What's this period been like for you?

WENDEL: Well - difficult. Every day I wake up, I feel sad. That's my first emotion. And then I roll over, and I look at Susan. And I realize that she's not allowing herself to feel that way, so I can't - and I don't.

SIMON: Susan, how are you doing?

SPENCER-WENDEL: I have very, very down moments.

WENDEL: She can have down moments.

SPENCER-WENDEL: But generally, I have doing pretty darn well.

WENDEL: Generally, doing pretty darn well.

SIMON: This book is so funny.

SPENCER-WENDEL: I'm so glad to hear you say that.

WENDEL: (Repeating) Glad to hear you say that.

SPENCER-WENDEL: I really don't want people to think...

WENDEL: She doesn't want people to think it's a maudlin book.

SPENCER-WENDEL: If you say it's funny, we've made it home.

WENDEL: (LAUGHTER) If you think it's funny, then we've made it home.

SPENCER-WENDEL: Yes.

SIMON: Well, Susan Spencer-Wendel and her husband, John Wendel, in Fort Lauderdale. She tells a story of a year in her life with ALS in the new book "Until I Say Good-Bye." Thank you so much.

SPENCER-WENDEL: Our pleasure, too.

WENDEL: Thank you. Our pleasure.

(SOUNDBITE OF MUSIC)

SIMON: We checked in with Susan this week. Asked how she's doing, she wrote: My pat answer is, as well as can be expected. My body and voice become weaker every single day, but my mind becomes mightier and more quiet. You do, indeed, hear more in silence.

You can read an excerpt from Susan Spencer-Wendel's book at npr.org/books. This is WEEKEND EDITION, from NPR News. I'm Scott Simon.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.