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.
What an example Susan Spencer-Wendel sets for parents everywhere! To accept her fate so gracefully -- and concentrate on the things that really count in life…children, family & friends, she's the ultimate inspiration. Her honesty about her situation is refreshing. This book is the one I'm choosing for book club this month. It will make for a thought-provoking discussion as we head into 2014 about what really matters in our lives. Loved, loved, loved the book -- and am following Susan's life on Facebook now.
SciFi/Fantasy and Classics to History, Adventure and Memoirs to Social Commentary—I love and listen to it all!
Boy, do I feel bad giving somebody with ALS 3 stars, but, while this book had a quite a bit going for it, it did indeed have a few notable drawbacks.
First the drawbacks. It wanders and could've used somebody to draw in the threads tighter so it didn't feel like we were jumping from one epiphany/adventure/loving thought to another without proper segues.
Two: Sure, this is about Life, not Death, but the ALS is soooo sanitized, you'd think it was easy. I'm working on my second novel, and a character of mine has ALS, so all I know about it comes from research, and it is brutal. I certainly don't expect Susan to make her book all about her suffering (especially as this is something her children will be reading later), but perhaps she could've put in some more about how hard the illness is. Her children could only be that much prouder of her, and people with ALS (PALS), and their friends and families could use the inspiration she provided. She missed a chance there. Really, it comes off as easy. She travels. Easy. Carried on the beach. Easy. Eats all her favorite foods. Easy. She wants this/that/the other and her family says no? Well, she wants it, so they're gonna do it for her anyway.
It's only at the end where she needs help toileting, and that's only a blip on the radar without embarrassment. Communication is the one thing that is difficult. For a woman whose life was words, I expected more emotion I suppose. Then again, I'm just big into emotion, so make of it what you will.
The best part of this book is that this is a loving family, and an adopted woman fitting pieces together before she dies, saying yes to life as much as she can.
And Karen White, who BRUTALIZED "Daring Greatly," does an admirable job here.
This is a good, credit-worthy book, well worth the listen, just park some expectations by the door.
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.
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.
The grace and grit that Susan Spencer-Wendel displays in coping with her ALS diagnosis is awe-inspiring. Few of us would have the financial or social resources that she had in living her final months so elegantly, yet it is the heart of this woman I respect, not her travels and purchases. Her husband's tender care-giving is almost beyond comprehension.
Readers are likely to have tears from time to time, but this is no cheap tear-jerker. It is beautiful and poignant. I recommend it highly.
This was such a moving account of a woman's journey through her diagnosis and day to day life of living with ALS. Before reading this book, I was quite unfamiliar with ALS but Spencer-Wendel does a phenomenal job of explaining how debilitating this disease could be. My mouth dropped to the ground when she described how transculent her hand was right before she started seeking medical care that led up to her diagnosis. I sympathized for her when she detailed her gradual loss of all of her muscles - even her tongue. It was devastating to hear someone go through this - I can't imagine what her family and her had to endure.
With that being said, her title did her story justice. She did in fact live with joy. Little things that healthy women take for granted - such as applying make-up - she became proactive about. For example, she made sure that she wouldn't need to worry about not being able to put on make-up or having someone else do it. She simply had make-up permanently tattooed to her! How ingenious! She discovered (spoiler alert) her birth parents and even traveled to Greece to reconnect with some family. There are healthy people that haven't been able to travel anywhere outside of the States so to hear her travel, not once but twice, to Greece was commending.
I was inspired by her bravery and her refusal to succumb willingly to ALS. Even though she had a definite death sentence, she managed to still live her life. It was amazing - a very inspirational read! Unfortunately, she recently passed but I hope that her legacy continues to live on through her family and children. It's never good-bye Mrs. Spencer-Wendel, but we will see you later!
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.
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