UNTIL I SAY GOOD-BYE: My Year of Living With Joy

Susan Spencer-Wendel with Bret Witter

In the spirit of The Last Lecture and Tuesdays with Morrie, a powerfully emotional, inspirational and irrepressibly joyous look at the things that matter most and a celebration of life in the face of death.

‘This profound, tender, and often funny account of her experiences will remind readers of what really matters most: love.’

Gretchen Rubin, author of Happier at Home & The Happiness Project


Susan Spencer-Wendel, BEFORE I SAY GOODBYEWhat would you do with one last year? Susan Spencer-Wendel was determined to laugh instead of cry.
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 44-years-old, with three young children, and she had only one year of health remaining.

She decided to live that year with joy.

She left her job as a journalist and spent time with her family. She built a meeting place 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 went to the beach with her sons and to Kleinfeld’s bridal shop in New York City with her teenage daughter, Marina, for a glimpse of the wedding she would never attend.
She also wrote this book. No longer able to walk or even lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working.

And yet 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 sens of humour. It is a book that, like Susan, will make everyone smile.
From a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is Susan Spencer-Wendel’s unforgettable gift to her loved ones and to us: a record of their final experiences together and a reminder that every day is better when it is lived with joy.


Susan Spencer-Wendel, extraordinary woman and author of Until I Say Good-Bye, passed away in June 2014 after a long battle against ALS.

Here’s a message from her family, posted on Susan’s Facebook page:

‘Susan Spencer-Wendel passed away peacefully this morning at home. Her family is grateful for the love and support of her many friends and fans. Although she was not always able to respond, she loved reading the messages she received from around the world. As was her wish, this page will live on and be updated. Please continue to visit.’

Visit Susan’s page here:


A note from Lisa Highton, Two Roads Publisher

‘It was an absolute privilege to meet Susan and work with her on her amazing book. She was one of the most joyful and honest people I have ever met, with an enormous sense of fun and an utterly beautiful smile.

Susan was completely thrilled by what was happening with her book worldwide and so interested in people and events around her. She took everything that life had to offer and made every second count – right to the end I’m sure.’   



Susan’s website 

Until I Say Good-Bye on Facebook

The Guardian


Susan Spencer-Wendel was an award-winning journalist at the Palm Beach Post for almost twenty years before being diagnosed with ALS at the age of 44. A graduate of the University of North Carolina at Chapel Hill, she held a master’s degree in journalism from the University of Florida, was honoured for her work by the Society of Professional Journalists and the Florida Press Club, and received a lifetime achievement award for her court reporting from the Florida Bar. Until I Say Good-Bye, her memoir of living with an incurable disease, was a New York Times bestseller and has been translated in over 20 languages. She lived in West Palm Beach, Florida, with her husband and three children.

Bret Witter has collaborated on five New York Times bestsellers. he lives in Decatur, Georgia.

21 responses to “UNTIL I SAY GOOD-BYE – Susan Spencer-Wendel with Bret Witter”

  1. Steven Sikes says:

    Hello Susan, Just came across your incredible story reflecting your vibrant spirit, your family, and goals accomplished. I’ve been searching for biomarkers for ALS, as well as potential triggers. If I can help in any way, let me know. I’m now in South Florida.

    kindest wishes, Steve

  2. […] to Two Road Books, Spencer-Wendel was diagnosed with ALS in June 2011. The disease is one that cause the nerves in the brain and spinal cord that control […]

  3. […] thumb and her iPhone.  It will be pushed in March.According to Two Road Books, Spencer-Wendel was diagnosed with ALS in June 2011. The disease is one that cause the nerves in the brain and spinal cord that control […]

  4. Katie Hutchins says:

    Hi Susan, Our thoughts and prayers are with you and your family. My brother n law was also diagnosed with ALS in 2011 as well. He is going through what you are going through as we speak. Every day, we are praying for Pete and you, God has got big plans for you guys.

  5. Bobby Holmes says:

    Dear Susan,
    ALS sucks. I just read an excerpt from your book in Reader’s Digest
    Thank you for your positive outlook.
    My wife was diagnosed with ALS in 2010 and passed away on January
    30, 2012.
    She, too, lived that time in a positive way and we crammed a lot of
    living in that year.
    God bless you and your family!

    • Lisa says:

      Thanks for being in touch and telling us a little of your story. You should visit Susan’s Facebook page (Until I say Good-Bye) it’s as refreshing as her book!

  6. Jane Malone says:

    Susan,my thoughts and prayers are with you and your family. My husband was diagnosed with ALS in Dec.2005 and died in March 2007. He tried very hard to maintain a positive attitude and to retain whatever independence he could. We had a ‘Pig Roast’ in Nov. 2006, and many family members and friends came to reminisce, and share that precious time with him. Our children were 10,12 and 18 when he died, so I very much relate to your situation.
    Day by day…that’s all anyone can do.I look forward to reading your book. Wow! You’re amazing.

  7. Wendy Rogers says:

    Am so looking forward to reading your book but so sad that you are going through so much so bravely. I know I might have to wait for this book to arrive in New Zealand but will try to download through Amazon on my kindle. God bless you

    • Lisa says:

      thanks very much for your comments – the book is definitely available in New Zealand right now! We published simultaneously – hope you enjoy it.

  8. PhyllisSaunders says:

    Our 48 year old daughter was diagnosed with ALS on Nov. 29, 2011 and regressed rapidly. Lost all ways of communication. Couldn’t talk nor move arms and her hands were fists. She kept in good spirits despite the fact that she was dying. We lost her Oct. 10, 2012. She’s now resting in peace.

  9. rygene smith says:

    Hello Susan, i was so touch while watching you on the tv news i know your such a good wife and good mother of your 3 adorable children , i know god is good i love your positive outlooks in your life hope you can give more inspiration to those people who are fighting right now that kind of disease i will pray for you and yopur family as well .God bless

  10. deb kingham says:

    My beautiful mom, Marquerite Thorn was dx with ALS in Oct. 1999. Mom lost her battle and ended her journey on earth Dec. 15,2002. We miss her every day and always feel her with us on all those SPECIAL DAYS! Thank you. God bless you and your family and friends. Deb Kingham, Tipp City, OH

  11. Julienne says:

    Where can i buy a copy in melbourne Australia please.?

  12. Gay Allworden says:

    Thank you for sharing your story. It made me laugh and cry. Best wishes to you and your family.

  13. Daina says:

    Hi Susan, thank you so much for such a wonderful book, you are so inspiring and my thoughts are with you and your lovely family. My courageous daddy was diagnosed with ALS in 2011 and he died 23rd February 2013. I finished your book today and while I laughed with you and howled (and howled!) at the frustrations that the disease brings, I feel more at peace right now than I have since he died. From the bottom of my heart, thank you.

  14. Patsy Horn says:

    I was diagnosed with ALS in 2010. I admire your strong attitude and thoroughly enjoyed your book. Thank you for inspiring me to live with JOY!

  15. laura says:

    ho letto il libro e voglio imparare a ..lasciare andare…grazie Susan

  16. Shirley Adams says:

    Dear Susan: I just finished reading your book and loved it. I hope you will do a follow up and let us know how you and your family are doing. Your husband and sister sound amazing. What a great support for you.

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