Until I Say Good-Bye audiobook

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 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.

I found this truly inspiring. It's a book about how Susan Spencer-Wendel celebrated the last year of her active life. She had been diagnosed with amyotrophic lateral sclerosis when she was forty-four. It's a muscle wasting disease which finally renders its victims completely helpless, literally unable to lift a finger. Far from caving in under this diagnosis, Susan decided to celebrate her final year of active life by having various adventures with her closest friends and family.To start with she handed in her notice as a journalist with the Palm Beach Post in Florida. It was a big wrench to give up on her years of work as a court reporter, but as is obviously throughout the book, she was determined to try and be positive, rather than dwell on her losses. Quite a lot of us may try and follow this sort of philosophy in our lives, but when you see it being played out in circumstances that most of us would find so overwhelming, it has a big impact. She took herself and her children to swim with dolphins. She went to Budapest with her husband for their wedding anniversary. She took Wesley, her son with autism, to Cape Canaveral to see the Atlantis space shuttle launch. She went to the Yukon Territory with her best friend Nancy, to see the aurora. (It didn't happen, but they had a fabulous time.) She even took her 14 year old daughter to Kleinfeld's bride wear shop in New York, to get an insight as to how her daughter would look like in the future, on her wedding day. Having been adopted as a child, she also went on an adventure to find her natural birth mother, and then afterwards she travelled to the Mediterranean, to meet the Cypriot family of her now deceased natural father. They welcomed and embraced her.... It truly was a year of adventure.Most of all, throughout the book, I picked up on the wonderful relationship she had with her friends, her husband John and the rest of her family.(view spoiler)[ "We talked about everything. I may have been circumspect with others, but with John no subject was off limits.It was hard for me to say "When I can no longer stand..." "When I can no longer eat...", When I can no longer speak..." It was hard for John to hear.Hard. But necessary.I made clear my end-of-life wishes and my hopes for him when I die: that he remarry......He said that after I die, he wanted to go back to school to become a physician's assistant. That it was a better career for a single father of three, and that he believed he would be good at it and enjoy it....I now study anatomy. I had often struggled to explain to John precisely where the itch was I needed him to scratch. So I am learning the lingo: "Right posterior second metacarpal please."He scratches in the exact right place. I smile. John is learning anatomy too. He is learning to be a physician's assistant with a real patient.I am doing what I can to launch him into a life without me." (hide spoiler)]Susan ended up writing the final parts of the book on her iPhone, as she could now only cope by holding the phone in her left hand, and using her right hand thumb to type the letters.This book is an amazing tribute to life lived with passion, and what a wonderful heirloom for her family. It was a real joy to read the book and get to know something of this courageous woman.

Beautifully told and such an inspiration. I would read it again to remind myself to live in the moment and cherish all that comes my way.

An easily readable book on a tough topic.This memoir recounts the experience of a 44-year-old woman diagnosed with ALS. Instead of giving into self-pity, Susan Spencer-Wendel makes a conscious choice to live out her remaining time with joy -- taking trips she's always wanted to take with the people she loves and forming happy memories, even as her functioning declines. Naturally, reading about Susan's deteriorating health and bleak prognosis was painful. But I feel this is an important book to read for people who, like me, need to be reminded to appreciate what they have.The book wasn't perfect, and I considered a three-star rating at times. The narrative sagged occasionally, weighted down by details which were probably more interesting to live through than to read about -- an occupational hazard of writing and reading memoirs in general. Also, while I recognize that this surely says a lot more about me than it does about Susan, while I fully admired Susan's bravery and positive attitude, I also felt that I couldn't completely relate. Boy, would I be a wreck if this happened to me. There was some acknowledgement of Susan's considering suicide and feeling discouraged, but a lot more emphasis was placed on her positive attitude and successful insistence on restraining her urge to complain and always seeing the glass as half-full. When I read about someone who displays so much more courage than I would have, part of me is in awe and part of me feels a bit distanced, like I can't relate to someone who would have done so little griping and complaining. But again, that's me, not the book, and Susan has set a powerful example for those of us not suffering terminal illness but rather, the myriad little hassles of life.Four stars. A quick read. An important lesson.

I cannot recommend this book highly enough. Reading the description may make you think: Oh, no, too depressing. But this is truly one of the most inspiring books I have read in a good while. Susan Spencer-Wendel lets us in on a year of her life, that is sadly likely to be close to the end of her time here, where she chooses time and time again to live in and with joy, despite the challenges thrown in her path. And on top of all that, she keeps a sense of humor. I was so so so honored to have narrated this book.

Our book group is reading this and I have been unable to put it down. How do we face any challenge? Where does our strength of will, character and the ability to face another set back emanate from? What would I do with a year or with two? How do I dare feel hopeless at times? I love the fact she remains concerned about beauty, appearances, and works to feel like she hasn't lost everything she "is". How do you fit into the universe? What is the purpose of living well? Thank you, Susan, for giving me a perspective to consider. We ,too, have a friend with an ALS-type affliction. You have given her and us a gift.

Truly inspirational and thought inspiring. Highly recommended.

Fabulous. Amazing. Beautiful. One of the most spiritual books I have ever read. Susan is my type of girl. She suggested they drop a few "F" bombs while discussing her book deal, so they knew she wasn't worthy of Disney. She loves to drink. She loves her family. She is a journalist. A CRIME journalist. What I do not know for sure is if I would have the grace and dignity she has had within her last years of life. She did amazing things, inspired many, and continues to inspire the world with the beautifully written book. A true gem. One I will take with me for the rest of my life, and realize what a gift it is to live each day to its fullest.

I love a lot of different book genres - nonfiction, literary fiction, and memoir are my top three, but I'm also into mysteries and romance. I eat up women's fiction, especially if the gal's got a full-time job. But if I could only read one type of book for the rest of my life, I think I'd define my absolute favorite as: Books that make me a better human.Which brings us to this beautiful, heartbreaking book that made tears simply stream down my face. Susan, the author, was diagnosed with ALS (Lou Gehrig's disease) at 44. In addition to deciding to live her last healthy year with joy, she wrote this book. With her thumb, on a smartphone.I think this book was even easier for me to love because she largely stays away from dispensing advice. She just tells of her year, and her relationships, and what brings her joy. What a treasure Susan must have been to those around her - as well as those who benefited from her journalistic efforts.I loved this book for being part travel memoir, part a life well lived, and part reminder how freaking short life is - and how we don't know what's to come. All the more reason to love it all today.

You know, I pick books up off of the shelf @ the biblio for lots of different reasons and that can be fun - I really never know what will catch my fancy and I like it. This book I actually picked based on the cover (even though I know you should never judge a book by it's cover, Mom) and it was the little cut out of the dog that caught my eye.There IS a dog in this story but the dog chapter, like almost every other chapter in this book, is interesting not for the story about the dog but because of the way the author approaches getting her dog. The dog comes to them as a part of the list of things she wants to do in her last year of relative 'wellness'. I know, from experiencing it with my Dad, that ALS can take quick sharp turns when you least expect them and Susan Spencer-Wendel is aware of this and attacks all of the things she wants to do in this year with that in mind. She chooses to get her children a dog because they want one so much and will-take-care-of-it-and-walk-it-and-feed-it-and-clean-up-after-it but she knows that they don't have the time or the energy to cope with a beautiful new puppy so she finds a wonderful lab through a program at a local prison. Not the path that you could guess anyone would take but by the end of this book you won't find yourself surprised by anything this woman does. You also won't find yourself questioning or judging her (no matter how grumpy you are that day) and find yourself wishing she would be your friend. I know I really did - I have fantastic friends, award-winning friends - but I thought I'd add this author to any evening or dinner out I go on.It's beautiful and sad but it is worth the read. I'd rate it a 5-star book for the quality of the writing (not a surprise from a 20-year newspaper columnist) and give it a higher number of stars for pure inspiration. I'm going to suggest this to any adult and really think it would make a great book club choice because there would be so much to talk about - parenting, being a good friend, sister, daughter or partner and even planning for how you want to die, how you want to be celebrated, what you value as a person. She is funny and kind and it is a book I'll remember for a long time.

ALS has to be one of the most terrifying diseases out there. There is only one way that it will end - in death and typically one of suffocation as you lose the ability to breathe. Susan Spencer-Wendel suspected for two years before her official diagnosis that she was living with ALS. She wrote this book primarily so that her children would get to know her better and remember her after she would be gone, and some reviewers feel that while it works well in that regard, it does not work as well for the general public. I personally would disagree with that.I live with a chronic illness which I have had since age 27-28. It is nowhere near as debilitating as a ALS is, but it has certainly affected my life and there have been times when it has been hard to stay positive and enjoy all the blessings that I really do have. Spencer-Wendel chose to live her life with Joy. There are so many things in life that we have no control over but one thing we do control is our attitude. Books like this remind me not to take for granted my family, friends and all the beauties that are around me in the world each day. The author's family no doubt suffered as she moved through the disease process and she doesn't touch much on those effects other than on her husband which seems right to me as it is her story and not theirs.This is also a story of self-discovery. The author was adopted as a child and within these pages the reader learns of how she meets her birth mother and learns about her birth father. The book was not a hard one to read. I shed some tears but smiled a lot too. I think the book has something to say for each of us if we take the time to read it and incorporate it into our thinking.

Susan was an accomplished journalist, active, athletic in the prime of life...her early forties. She couldn't figure out the sudden withered looking hand, but decided it was just one of those weird things that her doctor would figure out and fix.Many months later and after more denial she was diagnosed with ALS, Lou Gehrig's disease. Untreatable, no cure, only a rather quick (3-5 yrs from the diagnosis) and painful exit. Your mind fully functional as your muscles and body leave you ... unable to walk, speak, eat, and eventually breathe. Heartbreaking because you know it's coming, the end is near, and yet so much to do. So much to put down on paper for her children and other loved ones. Thus, the book. And at this point she was only able to use her thumb and painfully write a book on her iphone with just one finger. Daunting. Yet, with a silent partner she did it.Susan, married with great husband, John and three children. All cherished, loved, but her youngest, Wesley, with Asperger syndrome and she worries about him. She wants/needs a way to find a thread for him that will help him physically connect with others. Enter Gracie, the dog. ha...isn't it always the way. That was great, many a tear with those descriptions of how Wesley and the dog bonded.The journey is well written and quite frank. Good especially for those dealing with loved ones who are facing a known ending. Probably also good for anyone else as a contemplative process but beware there is a lot of heavy sadness,without the saccharine. The Today Show has had the video of Susan Spencer (dated March 15th, 2013) on their website which I am sure you can still see. That is the most powerful of all.Recommended.

A beautiful story, actually a collection of beautiful stories. Exceptionally well-written (especially when you understand HOW a majority of it was written), a story that you begin (from write-ups and reviews) thinking will be a lesson in how to die gracefully...but a story than instead provides an incredible, unforgettable lesson in how to live. Two favorite words emerge, "serendipity" (an accurate description of my experience with this book) and "fearless"...a word the author grows into as she finds out more about herself, and a word the author eventually realizes defined her before she even knew. Symbols, stories, out of sequence information, experiences with her children and special others, discoveries of her past...all presented through the eyes of a woman who totally understands and displays an extraordinary and special gift of a deep and abiding love of life. I loved this book. It brought me to tears many times, but made me laugh and smile more than any book I can remember. My highest recommendation.

Yay Team SpenWen! I'm glad this will be made into a movie, and hope it will hasten a cure for Lou Gehrig's disease. This book was seriously uplifting, which is remarkable considering it's a dying woman saying goodbye to all she loves: her children, husband, her journalism career, all her family both adoptive and biological, friends, pet dog, travel, mobility, food and drink, etc. Susan Spencer-Wendel writes beautifully about persevering with dignity and humor, showing love and appreciation, making memories, and being fearless. I learned a lot about the disease ALS, plus the wonderful word "pettifogging," and I especially loved her scenic Greece and Hawaii descriptions. I have to say I hated the phrase "get my zen on" as much as the writer loves using it; and I was sad she wasn't able to find her father's bible, or an equally worthy gift for her Aunt Soulla.