Susan Spencer-Wendell - Until I Say Goodbye

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."

Comment: I got this book randomly at the library and was interested in it because it would be an auto biography of someone who was aware of her illness and wanted to leave something for her children. Before starting this book, I had never heard the author's name.

Susan Spencer-Wendell was a journalist and had a very busy life when the first signs that something wasn't right became obvious. Her left hand seemed weird and she couldn't move her fingers properly. From this to a devastating diagnosis felt like a second but realizing what her life would end up being made her want to try to create memories with her family while she was able. She found ways to share things with her husband and children and also her closer family members, and this book would be her final goodbye, something those who loved her could cherish.

It was predictable of me that, after having finished the book, I went on to search some superficial information about the author and what happened and such. I say this because throughout the book the author clearly intended on presenting herself in the most positive and uplifting way possible. There aren't many references to her bad thoughts or to the certainly bad moments and stages she went through. There are hints of it, yes, but very minimal that it almost feels as if she wasn't as sick as she clearly must have been.

Since I had no knowledge about the author nor about her situation before reading this book, the "story" was engaging to me and I did feel for this woman, who was quite young, and a disease like ALS was so heartbreaking for besides not having a cure, it also led to a situation in which she would lose control of her body. The way this information is presented means the author and those close to her would have a short span of time to be together and to deal with the impact of this situation.

To minimize this for her children and to leave them something they can remember fondly, instead of just thinking about her disease, she planned on writing this book, which at some point a publisher friend made possible. Susan does set up the book with information on her professional and personal life and I wondered on the chance she was given, to write her won words somehow and to know they would be published. I wasn't really thinking about it from that angle, but some reviews of other readers have highlighted the "privilege" Susan and her family had regarding some things and how this also colored what she was able to do.

With this in mind, it is certainly "lucky" that she could travel so much and go to many places - to create the memories and to investigate her biological parents' origins, especially her father's - in a way that is made to seem simple and easy but it clearly must have been not. I will not go into the financial aspects of what her experiences meant but I will simply have to assume the family was well and could afford those things. Others with ALS might not have the same opportunity, and their final days might be very different... but this is Susan's story with all that is involved.

The experiences themselves are the sweet and nostalgic type, of course, doing things with those around her, especially the children. Not everyone is able to say goodbye in such a fashion and the kids were quite young, but some things are everlasting... for the three kids it certainly must be. I did wonder how Susan could physically accomplish some things, though...she required a lot of help for most of the experiences and I figure she must have minimized what it cost to her and, to an extend, to her husband, who was with her through everything.

This was an interesting book to read. I thought it would be more emotional but the author's journalist background gave it a more practical aspect, i'd say. It also had less ALS content than what I imagined, and I suppose that was on purpose, after all this is a memoir for specific people, not a study on the illness' progress.

Grade: 7/10