Until I Say Good-Bye: My Year of Living with Joy

by Susan Spencer-Wendel, Bret Witter

Overview

Susan Spencer-Wendel’s Until I Say Good-Bye: My Year of Living with Joy is a moving and inspirational memoir by a woman who makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS).

After Spencer-Wendel, a celebrated journalist at the Palm Beach Post, learns of her diagnosis of ALS, more commonly known as Lou Gehrig’s disease, she embarks on several adventures, traveling toseveral countries and sharing special experiences with loved ones. One trip takes Spencer-Wendel and her fourteen-year-old daughter, Marina, to New York City’s Kleinfeld’s Bridal to shop for Marina’s future wedding dress—an occasion that Susan knows she will never see.

Co-written with Bret Witter, Until I Say Good-Bye is Spencer-Wendel’s account of living a full life with humor, courage, and love, but also accepting death with grace and dignity. It’s a celebration of life, a look into the face of death, and the effort we must make to show the people that we love and care about how very much they mean to us.

Product Details

ISBN-13:	9780062241474
Publisher:	HarperCollins Publishers
Publication date:	03/04/2014
Pages:	400
Sales rank:	214,029
Product dimensions:	5.30(w) x 7.80(h) x 1.00(d)

About the Author

Susan Spencer-Wendel was an award-winning journalist at the Palm Beach Post for twenty years. She holds a master's degree in journalism from the University of Florida, and has been honored for her work by the Society of Professional Journalists and the Florida Society of News Editors. She received a lifetime achievement award for her court reporting from the Florida Bar. She lives in West Palm Beach, Florida, with her family.

Bret Witter has co-authored eight New York Times bestsellers, including the #1 bestseller The Monuments Men. He lives with his family in Decatur, Georgia.

Table of Contents

Introduction: Kissing the Dolphin 1

Liftoff: July-September

Still Lucky 9

The Clinic 28

The Wonder 32

Wesley 39

Animals and Expectations 44

The Yukon: October

Auroras 57

Thank You 64

The Northern Lights 71

Wreck Beach 81

California: October

Into the Past 89

Family Reunion 111

The Yurt 121

Closing the Loop 130

Christmas: December-January

Together 137

The Party 145

A Gift to Myself 151

Hungary: February

Youth 161

A Couple 173

The Conversation 183

Budapest 189

The Cruise: March

My Sister Steph 205

The Gift: April

Panos 223

The Bible 247

The Chickee Hut: May

A Place of My Own 263

Mango Madness 274

The Journey Inward: May-June

Scrapbooking 283

Stink Pickle 291

My Triathlon 297

Letting Go: May-June

Swimming 307

Aubrey's Birthday 313

Helping Hands 322

Hospice 331

Funeral 338

Cyprus: June-July

Fearless 345

Turtle Beach 356

Saint Andreas 364

The Old Man of Karpaz 371

New York City: July

Kardashians 377

Marina's Trip 384

Tattoos 390

Support 393

Kleinfeld's 402

For Good 411

Captiva Island: August

The Lion's Paw 417

Acknowledgments 435

Photo Credits 437

About the Author 438

Interviews

Questions from Cokie Roberts to Susan Spencer-Wendel:

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

SS-W: 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-W: 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-W: 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-W: 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-W: 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-W: 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.

Editorial 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

Journalist Spencer-Wendel discovered she was ill when her left hand suddenly became withered. As she struggles to come to terms with knowing something is wrong—not wanting to find out, then not fully believing the doctor's ALS diagnosis—she writes with courage and strength. When she gets the news, the 40-something author is in her prime, blessed with a great reporter job at the Palm Beach Post and loving family. Using benefits from an insurance policy, she quits her job and decides to take trips with her family and friends, so that she can have all of the amazing experiences she's put off and create lasting memories. She goes to the final space shuttle launch with her youngest son, having never been to Cape Canaveral, even though her home is only hours away. A few months later, joined by her best friend, she sees the aurora borealis in the Yukon. It's there that Spencer-Wendel's philosophy plays out, as it does many times more, as she briefly caught the lights before tripping and missing the rest. She is appreciative and grateful for those few seconds and banishes regrets. There are certainly moments of heartbreak that she doesn't shy away from, such as when she goes shopping for bridal dresses with her teenaged daughter, knowing she'll miss any future wedding. Spencer-Wendel's 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. (Mar.)

Publishers Weekly

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

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 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

. . . 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

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

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

Huffington Post

Her honesty and frustration are underscored with a wicked sense of humor . . .

ABC News

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

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

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.

the Oprah Magazine O

Diagnosed at age 45 with amyotrophic lateral sclerosis (Lou Gehrig's disease), Spencer-Wendel plunged into a live-each-day-fully whirlwind that has already made news (she was spotlighted in the Wall Street Journal, and the film rights to her story have been acquired for $2.5 million). Here she recounts trips to the Yukon to see the Northern Lights, for instance, and to Northern California to meet her birth mother. Most telling, she shops in New York with her 14-year-old daughter for the wedding dress she won't live to see her daughter wear. Foreign rights have been sold to nearly 20 countries, and the first printing is 250,000 copies.

Library Journal

With the assistance of Witter (Until Tuesday: A Wounded Warrior and the Golden Retriever Who Saved Him, 2011, etc.), crime reporter Spencer-Wendel chronicles her life and the decisions she has made since being diagnosed with ALS (Lou Gehrig's disease). Amyotrophic lateral sclerosis is a wasting disease that progressively causes loss of control of voluntary muscle movement. In her mid-40s and a happily married mother of three with a thriving career, the author rejected the option of assisted suicide in favor of making her last years memorable despite the inevitability of increasing disability. Although not believing that her death would ruin the lives of her husband and children, she understood that it might "affect their ability to live with delight. To live with joy." Spencer-Wendel was determined to overcome her dread of losing mobility and to live her life to the fullest even as the disease progressed. As inspiration, the author found solace in Lou Gehrig's 1939 farewell speech, in which he described himself as "the luckiest man on the face of the Earth, even after 'catching a bad break.' " The author decided to spend her remaining time to travel to places she longed to see, taking friends and family with her. In this way, she left them a legacy of joyfully shared memories. One of the more difficult decisions she made was not to hoard her remaining good health. She determined that she would not search out experimental programs, nor even spare herself physical strain, even though traveling took a further toll on her mobility. Each of the trips more than met the author's expectations: a visit with her son to swim with dolphins, shopping in New York with her daughter and a journey with her husband to Romania, where they lived for the first two years of their marriage. A poignant, wise love story.

Kirkus Reviews