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Until I Say Good-Bye: My Year of Living with Joy Hardcover – March 12, 2013

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Editorial Reviews

Amazon.com Review

Author One-on-One: Cokie Roberts and Susan Spencer-Wendel

Cokie RobertsSusan Spencer-Wendel

Cokie Roberts is a political commentator for ABC News and the author of We Are Our Mothers' Daughters.

Cokie Roberts: You are a journalist. Has writing about ALS helped you deal with it? How in general has writing shaped you?

Susan Spencer-Wendel: As a journalist, I am a truth teller, no matter how uncomfortable it may be. There is no pretending. This helped me a great deal to recognize the reality of ALS. I have written thousands of stories as a newspaper reporter, which prepared me. One, because I’ve seen all kinds of tragedy in my career. I realized bad things happen to good people on quite a regular basis. And, two, because I knew how to distill events into stories. Writing is wonderful because it forces us to crystallize our jumbled thoughts via words.

CR: When it came to literally writing this book you faced some physical challenges. Can you tell us how you ended up writing the book?

SS: With ALS, the tiniest muscles fail first. Like the ones in your fingers. I was no longer able to type on a regular keyboard. I did not have the strength in my finger to press the keys. So I began on an iPad. Typing each letter on the touchscreen. Then my hand began to drag across the screen. Right about then, I landed a book deal, which was a tremendous incentive to improvise. I had always used the notes function on my iPhone to jot things down. Phrasing which came to me, grocery lists, or on trips, when getting out a laptop was not possible. I loved knowing that it was always there. I'd write anywhere and everywhere. As I waited for the children at music lessons, etc. I held the phone in my left hand. Propped it flat atop my curled fingers, and used my right thumb to type 89,000 words in four months. One letter at a time. Such is the power of desire. On the phone, I can only see 7 lines at a time. Which actually is a blessing. To hyperfocus on the sentence at hand. Active verbs. Few adjectives. I had an outline, a recipe, to create the book. An absolute must for a book, I believe. Bret Witter helped so with that. He saw the full picture, the book, when I saw only a tiny screen. He reminded me where I was at when I was absolutely awash in memories.

CR: You write about looking at life joyfully. Is that what you want readers to take away from this book—that even in rough situations they can experience great joy?

SS: Of course. I am not trying to be Dr. Phil, but I do hope it will inspire people to set their intention to do so. And make them feel lucky...

CR: Is that message especially important for your children to hear?

SS: Absolutely. I hope they learn "My ma did not feel sorry for herself. So neither will I."

CR: Many people with your diagnosis would either crawl into a cave or go from doctor to doctor trying to survive a little longer. You chose not to do that. Why?

SS:The problem with a cave is it has no windows. And the problem with knocking on umpteen doctor doors is there is nothing behind the door. There is no cure. Period. I'm realistic. A cure, a drug, won't come in time for me. I am not giving up. I am accepting. There is a difference. It was a chain reaction in my mind. I am not sure what set off what. Like an orchid lying fallow, neglected in my side yard, and one day a bloom appears. The factors were just there. Nature itself was a factor for me. Nature is so perfect. Photosynthesis. Pollination. Conception (Huge smile!). The monarch butterflies which migrate thousands of miles to Mexico to convene there. The rainforest canopy, where ants can fly so they don't fall to the ground. The laws of physics. That objects in motion have energy. I don't have the will or motion and, ergo, the energy to fight nature, beautiful nature. Also a major factor is my husband, John. I so want him to have a chance at another life. Not saddled with the weight of an invalid wife. Desire is root of all suffering, I believe. To want something you can't have. The cure is to not want it. I practice not wanting a cure, preparing to die. Choosing the path of least resistance. Going gracefully into the night.

What about your children??? People wonder.

Remember, they are MY children. I know what is best for them. I know that they are well-provided for. I know the love that surrounds them. I know the more gracefully I accept things, so too may they. I know they have my strength. I have not wavered once in these beliefs.

CR: Your therapy—travel—was not an easy one to accomplish. You had to go through tough things physically in order to see some of those faraway places. Were the trips worth the sometimes scary situations you found yourself in?

SS: Absolutely. I would not use the word "scary" though. We weren't swimming with sharks. When I was exhausted at the bottom of the stairs at Wreck Beach, I wasn't scared. More just worried. I adore traveling. So it was natural to go, not difficult to accomplish at all. But not without the help of John, Nancy and Steph. If they sound like saints in the book, that's cause they are saints.

Review

“Susan Spencer-Wendel had to face the question, ‘What would you do if you had a year to live?’ This profound, tender, and often funny account of her experiences will remind readers of what really matters most: love.” (Gretchen Rubin, New York Times-bestselling author of The Happiness Project)

“It’s a touching and brutally honest account of one mother’s inspiring attempt to get the most out of the time she has left.” (USA Today)

“Her honesty and frustration are underscored with a wicked sense of humor . . .” (ABC News)

“All you can do . . . is to turn the pages, slack-jawed, in awe at her insistence on having powerful, individual experiences . . .” (Huffington Post)

“This heartbreaking and heartwarming good-bye will make you laugh as much as it makes you cry. Susan Spencer-Wendel’s determination to find the joy in life after having been dealt the ALS card is both inspirational and enlightening.” (Cokie Roberts, New York Times bestselling author of We Are Our Mothers’ Daughters)

“Spencer-Wendel writes with courage and strength. . . . Her life will sadly be cut short, but in writing her story, she shows her family and friends how to go on, choosing happiness and love over fear.” (Publishers Weekly)

“. . . almost unbearably moving chronicle of how Spencer-Wendel went about creating lasting moments in that year for the ones she loved . . .” (New York Daily News)

“A poignant, wise love story.” (Kirkus Reviews)

“The inspirational account of a woman whose ALS diagnosis and subsequent physical decline don’t prevent her from enjoying life to the fullest, which she proves.” (O, the Oprah Magazine)

“The tales are painfully honest, and they’re heartbreaking because we know the inevitable outcome. But mostly, they’re inspiring. Spencer-Wendel, even in the darkest of moments, remains insistent on happiness-staggeringly so.” (U.S. News & World Report)

“Her heart-ripping book chronicles what she did immediately after her diagnosis: she decided to embrace life while death chased her down..…endearing and all too human” (New York Times)

“The mother of three children ages 7 to 15 describes her poignant last efforts to travel the world and stay close to her family and community.” (AARP.com)

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Product Details

  • Hardcover: 384 pages
  • Publisher: Harper (March 12, 2013)
  • Language: English
  • ISBN-10: 0062241451
  • ISBN-13: 978-0062241450
  • Product Dimensions: 5.5 x 1.3 x 8.2 inches
  • Shipping Weight: 1.2 pounds
  • Average Customer Review: 4.6 out of 5 stars  See all reviews (650 customer reviews)
  • Amazon Best Sellers Rank: #285,458 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

236 of 247 people found the following review helpful By Jesse Kornbluth TOP 1000 REVIEWER on March 12, 2013
Format: Hardcover
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.
Read more ›
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93 of 95 people found the following review helpful By Torym on March 12, 2013
Format: Hardcover Verified Purchase
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.
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53 of 58 people found the following review helpful By lannie on March 13, 2013
Format: Kindle Edition Verified Purchase
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!Read more ›
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29 of 30 people found the following review helpful By Sharon A Gough on March 15, 2013
Format: Kindle Edition Verified Purchase
I enjoyed this book on many levels. Originally having taken care of patients with ALS, I was curious to see how Susan kept from becoming a frightened bitter person. I did see a frightened woman who demanded to live her remaining days, her way. To connect herself indelibly to her roots and her loved ones. The journey she takes completes her. She makes memories for each of her children, husband, family and friends? She is reverent and irreverent at the same time. Also ever aware the activity she is choosing will cause the ALS to advance, even faster. I was delighted to see a person that is able to say death is coming but I will enjoy each day God gives, to the fullest. I cry when the tenderly thought out excursions for her children, do not go as she would like, because the memories are her dreams and her children have other dreams , just as important and ultimately more fulfilling. I marvel at the devotion of her husband, who becomes, husband, caregiver, mother and father to the family. Highly recommend this book. You will appreciate the joy of life!
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