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 GOODBYEIn 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. While Susan cannot stop the rapid decline of her body and her inevitable death, she refuses to give up on life. A woman of immense strength and indomitable spirit, the forty-five-year-old mother of three has made every day count.

After her diagnosis, Susan began taking special trips: to the Yukon, to see the Northern Lights with her best friend; to Budapest, where she and her husband spent the first two years of their marriage; to Northern California, to meet her birth mother; to Cyprus, the home country of the deceased birth father she never met. But one of her most important adventures was a visit to New York City and Kleinfeld’s Bridal, where she and her fourteen-year-old daughter, Marina, shared an unforgettably moving experience: shopping for the perfect dress for a wedding Susan will not see. “As my beautiful daughter walks out of the dressing room in white silk, I will see her ten years in the future, in the back room right before her wedding, giddy and crying, overwhelmed by a moment I will never share. . . . When my only daughter thinks of me on her wedding day, as I hope she will, I want her to think of my smile when I say to her at Kleinfeld’s, ‘You are my beautiful.’ ”

News of Susan’s remarkable story has spread across the world, and the response has been overwhelming. Now, in this unforgettable memoir, she invites readers on her transformational journey, sharing the gratitude and wisdom that guide her. “I am writing about accepting, about living with joy and dying with joy and laughing a helluva lot in the process.” Until I Say Good-bye is the fulfillment of her final wish: “To make people laugh and cry and hug their children and joke with their friends and dwell in how wonderful it is to be alive.”



Susan’s website 

Until I Say Good-Bye on Facebook

The Guardian

ABOUT THE AUTHOR A journalist for over twenty years, Susan Spencer-Wendel left her job as an award-winning courts reporter for the Palm Beach Post when she was diagnosed in 2011. She has been honoured by the Society of Professional Journalists, the Florida Press Club and Florida Bar for her coverage of legal issues. 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 lives in Florida with her husband, John, and their three children, 14-year-old Marina, 10-year-old Aubrey and 8-year-old Wesley. Susan is writing the book on her iPhone. As she says, ‘thank god for technology’.

Bret Witter will be helping Susan put the book together. Bret has collaborated on many acclaimed books, including the #1 New York Times bestseller Dewey: The Small-Town Library Cat who Touched the World; the New York Times bestseller Until Tuesday: A Wounded Warrior and the Golden Retriever who Saved Him; and The Monument Men: Allied Heroes, Nazi Thieves, and the Greatest Treasure Hunt in History. He lives in Decatur, Georgia, with his wife, Beth, and his children, Lydia and Isaac. Visit his website at



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There are 21 comments for this post

  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.

    • Lisa says:

      thanks for being in touch Jane – our sympathies for your loss – we’re sure you’ll appreciate Susan’s book.

  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.?

    • Lisa says:

      Any Dymocks store should have it – definitely on their website. Let me know if you can’t track it down. thanks.

  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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