In June 2011, Susan Spencer-Wendel learned she had amyotrophic lateral sclerosis (ALS)—Lou Gehrig's disease—an irreversible condition that systematically destroys the nerves that power the muscles. She was forty-four years old, with a devoted husband and three young children, and she had only one year of health remaining.
Susan decided to live that year with joy.
She quit her job as a journalist and spent time with her family. She built an outdoor meeting space for friends in her backyard. And she took seven trips with the seven most important people in her life. As her health declined, Susan journeyed to the Yukon, Hungary, the Bahamas, and Cyprus. She took her sons to swim with dolphins, and her teenage daughter, Marina, to Kleinfeld's bridal shop in New York City to see her for the first and last time in a wedding dress.
She also wrote this book. No longer able to walk or even to lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working.
However, Until I Say Good-Bye is not angry or bitter. It is sad in parts—how could it not be?—but it is filled with Susan's optimism, joie de vivre, and sense of humor. It is a book about life, not death. One that, like Susan, will make everyone smile.
From the Burger King parking lot where she cried after her diagnosis to a snowy hot spring near the Arctic Circle, from a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is not only Susan Spencer-Wendel's unforgettable gift to her loved ones—a heartfelt record of their final experiences together—but an offering to all of us: a reminder that "every day is better when it is lived with joy."
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About the Author
Susan Spencer-Wendel was an award-winning journalist at the Palm Beach Post for almost twenty years. A graduate of the University of North Carolina at Chapel Hill, she holds a master's degree in journalism from the University of Florida. She has been honored for her work by the Society of Professional Journalists and the Florida Society of News Editors, and 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 collaborated on five New York Times bestsellers. He lives in Decatur, Georgia.
Table of Contents
Introduction: Kissing the Dolphin 1
Still Lucky 9
The Clinic 28
The Wonder 32
Animals and Expectations 44
The Yukon: October
Thank You 64
The Northern Lights 71
Wreck Beach 81
Into the Past 89
Family Reunion 111
The Yurt 121
Closing the Loop 130
The Party 145
A Gift to Myself 151
A Couple 173
The Conversation 183
The Cruise: March
My Sister Steph 205
The Gift: April
The Bible 247
The Chickee Hut: May
A Place of My Own 263
Mango Madness 274
The Journey Inward: May-June
Stink Pickle 291
My Triathlon 297
Letting Go: May-June
Aubrey's Birthday 313
Helping Hands 322
Turtle Beach 356
Saint Andreas 364
The Old Man of Karpaz 371
New York City: July
Marina's Trip 384
For Good 411
Captiva Island: August
The Lion's Paw 417
Photo Credits 437
About the Author 438
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.
Most Helpful Customer Reviews
what an inspiration susan was to me. i am honored to have read her story and we never look at my own disability the same ay again. such a beautiful lady with a remarkable joy and zest for life. may her family be blessed.
This book is a love letter to her friends and family a garden of memories .it will show you how one amazing woman did what all us mothers only wished we could do it we knew we'd be leaving our children sooner than planned .read the book I promise it will enrich your life .you will laugh you will cry but most of all you WILL NOT put it down til you are done !!
Diagnosed with Lou Gehrig's disease in June 2011, Susan Spencer-Wendel had every excuse in the world to fold, but instead she reached for her ace in the hole and had the courage to play it. A veteran journalist from the Palm Beach Post, Spencer-Wendel believed in her own talent as a writer and storyteller, and with it she realized the extraordinary potential in the cards she had been dealt. The result is Until I Say Good-Bye, a memoir that entertains, provokes thought, and makes you thankful for each breath you draw. If you are expecting a tearjerker chick book, your expectations will be blown to smithereens. This is a book for everyone who thinks life is worth contemplating and enjoying, everyone who likes to laugh, and everyone who loves gorgeous writing. Make room on your shelf of favorites.
For anyone who has ALS or knows someone who has ALS this is a truly remarkable journey of a well known journalist who has ALS and the way she deals with this horrific disease. My husband has ALS and this book was very inspiring. I give it 5 stars.
Absolutely one of the BEST books I have ever read in my 60 years! It is sad, certainly, but moreso, uplifting & inspirational! Living with a chroinic disease, nothing like the author's, has made me depressed at times. No pill or therapist is better than this book; it should be required reading for doctors, therapists, all with chronic illness. I have a different outlook on my life and shall read this one again! I bought the hardcover for a friend who is not into e-books & sent it to her; I wish I could give a copy to every person I know so their lives would be viewed differently. Ms. Spencer-Wendel & her family are in my preayers now, for peace & comfort. I loved this book!!!
I was very interested in learning more about Susan's story as my Mother in law was recently diagnosed with ALS. I found myself relating to many of her daily struggles and concerns. This book is inspiring! Her attitude and outlook on life positive, even though her outcome certain. This book will make you appreciate your good health- remind you that tomorrow is not promised and hopefully change your attitude on life. Best wishes to Susan and her family!
This is a great book. Susan Spencer-Wendell writes in a way that does not make you feel sad as you read it. Excellent read on ALS.
Really enjoyed reading this book and could not put it down as I really got into it. What an inspiring story!
I read about this book in Guidepost Magazine and watched the video. This is one of the bravest woman and her family as she experiences her Bucket list after the diagnosis of ALS (Lou Gehrig's disease) I plan to purchase copies for several friends. It isn't sad, but truly a heroic adventure.
One of the best books I have read in a long time. Thank you Susan for sharing your intimate story with the world. How blessed your family is to have this piece of you always. This book will help many in their own life struggles. My own Mother has Parkinson's and this book has helped me understand a little more her thoughts and fears.
A heartbreaking yet heart warming story. A great read! Truly inspirational.
Spencer-Wendel, when faced with a difficult and terminal illness, took her life to new heights with great spirit. She shares her story with honesty, humor, and great generosity. I could not put it down and remained so touched by her and her stories ever since.
I can't wait to read this book. I watched my grandma who i was extremely close to suffer from this disease. It amazes me the strength the author had to write this story with just her thumb working all written on her iphone. She done more with her thumb than most people do with their whole body. Very inspiring
Wonderful story! A non-fictional acount of a womans fight with ALS . Her year of givng to her family and to herself. I did not want to put it down! Anyone who is going through, or, caring for someone with this disease should read this book. Ii
After reading this book, various words come to mind...educational, sadness, uplifting, humor, grace, love of family, friendship, insightful, courage, and many more. Having a classmate who is stricken with ALS, this book helped me learn a little bit more about this awful disease and what some of the physical things are that he is going through. This is a "must read."
I did not enjoy this book. I felt that Susan was bossy and rude to her friends and family. My whole book club was very excited to read this book and no one in my book club really enjoyed the book. The person that was most excited about reading the book could not even finish the book.
I just read this book and I have to say that I enjoyed reading this book. Susan Spencer-Wendel the author of this book tells her story of a fatal diease and how she's copes with this day after day. She's a mother, wife, daughter, and sister. A 44 year old woman so very young but her days are numbered because of this terrible diease. I reccomend reading this book and it makes you realize you cannot take your life or your family for granted, because you never know what can happen.
I couldn't go on reading this...... I'm. Not as strong as I thought. The very idea of taking my 14 year old , Sami,wedding dress shopping because i KNEW I would not be there for her wedding broke my heart. This is the first book I have EVER started that I walked away from unfinished. I. Sure its about strength and the human condition. Probably very good..... maybe even life changing..... but I couldn't finish.
Such a lovely story.I would love to leave it at that in honor of Susan.On the other hand I feel like I need to come to her defence and to all (including my brother) that have suffered with this hidious disease.To watch step by step as their abilities are stripped away-it's not a pretty site-very gut wrenching is one of many ways to describe it.I know every is entilted to their opinion(April-26-2013-2stars) and I really don't believe that you read this book nor did your so called "book club and if I'm wrong did you all have tissue to catch the drowl that was dripping out of your mouths?Please don'tEVER call this woman names again, RUDE espescially.YOU are the low life piece of scum,RUDE person I believe I've ever encounterd!!!!! AND THAT MY DEAR IS"MY" OPINION.My condolences to Susan's family and please forgive me if I caused you any embarrasment.
So amazingly honest and heart warming. Half way through i Googled more information. Such a tough disease i cant even fathom and yet she keeps going.
A very brave women with debilitating ASL prepares herself, her husband, her children, and her friends for this severly incapacitating illnes through until her death. An excellent book.
Outstanding story ofiving with a termin diagnosis. Excellent storyteller but i had ai little problem following because the story was not told chronologically. Super story about living with joy You know she was a good and generous friend because so many gave to her. ?
I am a nurse who has the privilage of taking care of a patient with ALS. Her name is Joy. So you can see why i picked this book..or it picked me. This book is fullfilling to my heart and soul. From the first page to the last it captured my attention. A must read for anyone who faces challenges. We can all learn to live for the now.
We should all learn from Susan and live everyday of life to the fullest extent possible. We never know if it may be our last.
I enjoyed the book very much, as it was very positive. Although Ms. Wendell knew that her life was going to end soon, she still retained a sense of wonder about the world around her. She held no grudges about how she could have been "dealt this deck of cards," nor did she expect others to suffer for her. She decided to simply live each day "to the best of her ability" and to take each day as it comes. Very comendable.