Susan Spencer-Wendel (1966–2014)

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 show more 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." show less

When the author was diagnosed with ALS she decided she wouldn’t spend her remaining time going to endless doctor’s appointments in an attempt to delay the inevitable. She made a conscious choice to spend a year crossing off items on her bucket list and making memories with the special people in her life.

Susan’s book is part travel journal but along the way we get a glimpse into her family, which includes meeting her birth mother for the first time, parenting a child with Asperger's show more Syndrome, and getting a puppy. Most of it was typed on her iphone using only her thumb, the last digit she can still control.

Susan writes about living with joy and accepting what is, not what we would wish. “Our decision to just be. Accept. Live with joy anyhow. And die with joy, too”. Susan doesn’t shy away from the physical realities of living with ALS, and while I’m heartbroken for her and her family, mostly I am moved by Susan’s courage, strength, positive attitude and sense of humor. She has left a legacy to her children, not of how to die, but how to live with joy and gratitude. show less

I loved this book right from the get go.

I was first attracted to this book because of the title and subtitle of it - Until I Say Goodbye: My Year of Living with Joy. I was also attracted by the fact that this was an autobiography, which is a genre that I really enjoy reading. I then came across this sentence on page 21: "A book not about illness and despair, but a record of my wonderful final wonderful year. A gift to my children so they would understand who I was and learn the way to live show more after tragedy: With Joy. And without fear." For me, from this moment on, I felt it was an honour and a privilege to be allowed into this very private, and emotional, time for the family as a whole.

This story is about a remarkable woman who suffered from ALS (or Motor Neurone Disease as it is also known) and how she chose to leave a legacy behind for her children which essentially said that just because you're ill and/or dying you can still have joy in your lives and enjoy those things that are really important to you. In many ways this speaks to me on so many levels that it's hard to sum them all up in a few words. In fact words seem to fail in encapsulating adequately why this means so much.

I must admit that I had to research what ALS was which was when I found out that it's other name was Motor Neurone Disease. My husband and I were great friends with a lovely lady who also had this illness which she later died from. At the time we found out that she was that ill I was pregnant with our first child, something I/we were never able to share with her.

Throughout this book one senses this joy that she was wanting to leave behind for her children without being left feeling as if she was trying to convince herself that things were going to improve and everything would go back to normal. Susan was both very honest and matter-of-fact without being morbidly so. She really did take the 'bull by the horns' (once she'd acknowledged the reality of what was going to happen, and had a really great time during her last year of her life. As part of this she said that "this year ... was about acceptance." She then quotes a poem by Kahlil Gibran called The Prophet(on page 116) from which the following two lines really resonated, and continue to do so, with me:

Then the woman said, Speak to us of Joy and Sorrow. And he answered:
Your joy is your sorrow unmasked.

Susan then ends this book with her saying goodbye to each of her children. She names them individually and then says "Goodbye my loves".

I would recommend everybody read this book. I absolutely loved it and I feel sad that she died but I also am enormously touched by the legacy that she managed to leave behind for children that we, the public, have been allowed to be privy to. Thank you Susan for your inspiration, honesty and deep love. Thank you too Susan for allowing us to share this journey with you and your family. May you forever rest in peace. show less

3.5 stars

The author was in her 40s when she was diagnosed with ALS (aka Lou Gehrig’s Disease). ALS eats away at muscles until a person can no longer walk, talk, or do pretty much anything for themselves. There is no cure and it is terminal. She was married and had three children. She quit her job as a court reporter, and spent time with her friends and family doing something she loved: travelling. In that time, she also met her biological mother (she was adopted) and found out her show more biological father had already died, but she went to Greece to meet his family, as well. She simply wanted to enjoy the time she had while she could still do things.

Susan had a great attitude and plenty of determination, as she wrote much of this book on her iPad, hunting and pecking the letters with one thumb. The book wasn’t nearly as sad as I thought it might be, but I’m sure that was due to her attitude. Of course, there were a few times where I teared up, anyway. I did know someone with ALS, though I hadn’t been in contact with her for a few years. I heard that she was also very positive and tried to enjoy life as much as she could for as long as she could, so I imagine she had a similar attitude to Susan. For anyone who likes inspirational stories, this is definitely it. show less