Susan Spencer-Wendel's Until I Say Good-Bye: My Year of Living with Joy is a moving and inspirational memoir by a woman who makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS).
After Spencer-Wendel, a celebrated journalist at the Palm Beach Post, learns of her diagnosis of ALS, more commonly known as Lou Gehrig's disease, she embarks on several adventures, traveling to several countries and sharing special experiences with loved ones. One trip takes Spencer-Wendel and her 14-year-old daughter, Marina, to New York City’s Kleinfeld's Bridal to shop for Marina's future wedding dress - an occasion that Susan knows she will never see.
Co-written with Bret Witter, Until I Say Good-Bye is Spencer-Wendel's account of living a full life with humor, courage, and love, but also accepting death with grace and dignity. It's a celebration of life, a look into the face of death, and the effort we must make to show the people that we love and care about how very much they mean to us.
©2013 Susan Spencer-Wendel (P)2013 HarperCollins Publishers
Mother, knitter, reader, lifelong learner, technical writer, former library assistant & hematologist.
Let me start by saying that I am neither capable nor even allowed to pass judgement on such a personal memoir, thus Until I Say Good-Bye presents quite a paradox for me. If I could have given my perspective without first entering a rating, I would certainly have done so. I admire Susan Spencer-Wendel for many characteristics - her ability to live with ALS unflinchingly, her humor, grace, acceptance, desire, and perseverance in writing the book. The author states, "First and foremost, I wrote the book for my family and friends to have, to jog their memories after I'm gone." In this capacity, she succeeds immensely. In the face of her rapid neuromuscular decline until she is left with only the ability to type with her right thumb on her iphone, she manages to write this book with the help of Bret Witter.
The paradox for me is that I think this book is most successful as a very personal memoir, for the author's children, family, and friends, but the publication of this book, along with a movie deal, will allow Spencer-Wendel and her family the ability to "Live with joy. And die with joy, too.” This is such an intensely personal story that while I can admire the author, I don't think I can ever really understand her circumstances along with those of her family. It does serve as a reminder of how lucky most of us are, something which we will most likely not be able to acknowledge so personally until we experience our own unlucky circumstances.
Susan Spencer-Wendel's "Que Sera, Sera" spirit throughout the book is at times hard to grapple with emotionally, but nonetheless inspirational. She did not plan to have ALS, but she has taken what life has given to her and made the best of it. Her book is about making memories with her loved ones, many of which turn out unexpectedly. Some very low-lows come with the book--however, without them we wouldn't feel her very highs.
If you were told you only had a year to live, what would you do? Susan Spencer-Wendel decided to create memories for her loved ones, travel the world, and live her last few months on earth with joy. This book is her way of not only chronicling her struggles as her body slowly deteriorates from ALS but also tell the story of her life for her children to cherish one day when she is no longer with them. The lessons she imparts and the love she shares makes this an inspirational read for all my friends because you never know when your time on this earth will be up.
There are so many experiences Susan Spencer-Wendel shares about her unique life: getting married on the fly and moving to Hungary with her new husband, watching the space shuttle take off from the top of a van in the Florida heat, swimming with dolphins, creating an oasis of peace in her backyard, etc. I think my favorite part of the book, however, was the trip she took with her best friend to see the Northern Lights. The friendship she and Nancy share is truly inspiring, and I hope that if any one of my friends is ever placed in the position where they lose use of their muscles, I will be there to help zip up their snow suit and strap them to a dog sled.
As a 22 year old woman, when I read books, I read them in my own voice, which is really off-the-mark from Susan Spencer-Wendel's. Karen White's narration made me feel like I was hearing Spencer-Wendel's story from the woman herself, almost as if she were in the room with me, recounting the stories from memory. White read this as if she were Spencer-Wendel, with all the emotion and humor she had written into the book. It really felt as if she were narrating with joy, just as Spencer-Wendel was living with joy.
The author bravely bares much of her family life, her work life, and her physical struggles with ALS. She is a courageous reporter on the crime beat for her newspaper for 20 years, until she can no longer make it up and down the courthouse steps without falling. Unlike some who might stop working before that humiliating point, she does not. We begin to see she's like that throughout all the domains of life, including this writing.
Many parts of this rather short memoir are full of juice, others are a little flat, obviously padded out to complete the book she was rushing to publish before she could no longer communicate. She typed much of this book on an iPhone, using only 1 finger, so who am I to complain about any of it, including the fact that it feels like this was a magazine article stretched out to become a book.
The writing itself is good. It's the content that left me feeling there was a point in her life after being diagnosed with ALS where she started pushing friends and family into colorful situations in order to create material to write about, and the material suffers for this.
She's careful to not invade the privacy of her husband and children too much, and so we see them only glancingly, and only in specific anecdotes. One of the most fascinating aspects of her story might have been how a marriage relationship endures, changes, suffers, or grows in such a struggle, but she avoids that mostly, and it leaves a yawning gap in the picture.
But clearly, this memoir screams the message that she is doing ALS and end-of-life on her own terms, and so she does. Despite its flaws and gaps, the book is compelling reading.
Susan Spencer-Wendel's story is remarkable, yet sad. Susan choosing to accept her fate and live with joy is a great lesson for us all. The performance was very good. The book itself made me "google" Susan to see where she is now and how she is doing. Although parts of the book are a bit repetitive, the story is very emotional with an uplifting message.
My grandfather died of ALS. I wish he had Susan's attitude! Her no-nonsense battle to leave her children and husband with a sense of who she was, and what was important are inspirational. This is not a "read in one sitting" book, it can get heavy in parts. But there is a lot of joy, introspection, and some practical tips along the way. Susan examines and evaluates her priorities as her bady starts failing her, and lists the concessions she had to make along the way to meet her goals and fulfill her bucket list. I will probably liswten to this at least once more, to glean some tips.
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