Until I Say Good-Bye: My Year of Living with Joy
385Until I Say Good-Bye: My Year of Living with Joy
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Overview
In June 2011, award–winning journalist Susan Spencer-Wendel was diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease, a disease that systematically destroys nerves that power muscles. Forty-five years old and a mother of three, Susan walks with braces and is losing her ability to speak. Unable to stop the rapid decline of her body, she refuses to let her life stop before its time. Since her diagnosis, Susan makes sure every day counts, is more present than ever in her daily life, and ready to share her strength, determination, and spirit.
Until I Say Goodbye is a truly magical story and so much more than one woman’s “bucket list.” 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.
“Touching and brutally honest.” —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.” —New York Times bestselling author Gretchen Rubin
“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.” —New York Times bestselling author Cokie Roberts
Product Details
ISBN-13: | 9780062344212 |
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Publisher: | HarperCollins Publishers |
Publication date: | 11/21/2023 |
Sold by: | Barnes & Noble |
Format: | eBook |
Pages: | 385 |
Sales rank: | 28,070 |
File size: | 3 MB |
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 bookthat 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 therapytravelwas 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.