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    Until I Say Good-Bye: A Book About Living
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    Until I Say Good-Bye: A Book About Living
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    Until I Say Good-Bye: A Book About Living
    Ebook393 pages4 hours

    Until I Say Good-Bye: A Book About Living

    By Susan Spencer-Wendel and Bret Witter

    4.5/5

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    About this ebook

    Moving and inspirational reflections on life from one woman, diagnosed with ALS, making the most of her final days with family and friends.

    In June 2011, Susan Spencer-Wendel was diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease. It is a disease that systematically destroys nerves that power muscles; Susan, 45 years old and a mother of three, already walks with braces and is losing her ability to speak. Though Susan cannot stop the rapid decline of her body, she refuses to let her life stop before its time. Since her diagnosis, Susan has made sure that every day counts, is more present than ever in her daily life, and ready to share her strength, determination, and spirit.

    Susan’s story began growing interest when she published a piece in her local paper about a trip she took to see the Northern Lights following her diagnosis. But this was just the first of many special travels, including a visit to Budapest, where she and her husband spent the first two years of their marriage; a cross-country journey to Northern California to meet her birth mother; and soon a trip to Cyprus, the home country of her deceased birth father, to reunite with the relatives of a man who never knew she existed and return their treasured family Bible.

    But one of the most important adventures Susan has planned—the story that drew national attention when mentioned by the Wall Street Journal—will bring Susan to New York City with her 14 year old daughter, Marina. Susan and Marina, both big fans of TLC’s Say Yes to the Dress, will visit Kleinfeld’s Bridal, where the two can share the experience of Marina’s search for the perfect dress for the wedding Susan will never see. In her own words: “I told her so many times: ‘Baby, we’re going to Kleinfeld’s for your dress one day.’ And I always keep my promises. At least the ones that mean something. . . . I will watch my beautiful daughter walk out of the dressing room in white silk and see her ten years in the future, in the back room right before her wedding, giddy and crying, overwhelmed by a moment I will never share.”

    Though the two will not be buying a dress quite so early in Marina’s life, their plans, and Susan’s story have begun to touch people around the world. Universal Studios has acquired film rights, and foreign book rights have been sold in UK, Taiwan, Germany, Italy, Holland, Brazil, Hungary, and Israel, with much more in the works. Susan writes, “I’m beyond thankful so many people can relate to and empathize with our story. I’m glad people are moved. I’m happy Marina and I have stumbled, accidently, on something that crystallizes what it means to be a family, to grow up, to dream, to die, but more importantly to live fully and joyfully.”

    BREATHE DEEPLY is a truly magical story and so much more than one woman’s “bucket list.” 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.

    LanguageEnglish
    PublisherHarperCollins
    Release dateMar 4, 2014
    ISBN9780062344212
    Author

    Susan Spencer-Wendel

    Susan Spencer-Wendel was an award-winning journalist at the Palm Beach Post for twenty years. She holds a master's degree in journalism from the University of Florida, and has been honored for her work by the Society of Professional Journalists and the Florida Society of News Editors. She received a lifetime achievement award for her court reporting from the Florida Bar. She lives in West Palm Beach, Florida, with her family.

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    Reviews for Until I Say Good-Bye

    4.5/5

    11 ratings9 reviews

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    • 5/5
      Wonderful book!!!
    • 5/5
      This is such a moving momoir by journalist Susan Spencer-Wendel. When she was told that she had ALS she planned life experiences to have with her family before she became totally disabled. Her husband is a rock. Her courage and attitude and a model for all of us.
    • 4/5
      What a wonderful outlook Susan had on life and dying. Most people would be angry and upset. But she took a different outlook and thought about her family and friends and what special memories she would leave them with. This was a book that her children can read in the future and understand a part of their mother that they did not get to experience. It must of been nice to take all those luxurious trips that most people could not if they only had a limited time to live. I wish she would have gotten into more detail of the medical issues she was going through due to the ALS. Not a lot of people know a lot about it and she could have done more of a service to the ALS community if she would have put in more medical aspects. Also think that the end was not truly told. But I still believe it was worth the four stars that I gave it. It was written beautifully and an enjoyable read.
    • 5/5
      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 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.
    • 4/5
      Written for her three children and husband by a successful, 44-year-old journalist after finally being diagnosed with ALS – Lou Gehrig’s disease – a neuromuscular disorder that would leave her just one more year of rapidly declining health and mobility in which to make her brief remaining time with her family a memorable and productive one. Adopted as an infant, the author meets her biological mother for the first time and travels from Florida to Greece to meet the extended family on her biological father’s side that she never knew. She also takes each of her children – a 14-year-old daughter and two sons, 9 and 11 – on special trips to places of their choosing, trying to pack as many experiences in as possible while also keeping family life relatively “normal.” The author tapped out most of the book on an iPhone, as her abilities to speak clearly or type on a laptop rapidly got worse. This poignant memoir of a year before dying comes across, understandably, as patched together in haste, but makes a good companion read to other books about mindfulness and joy such as The Happiness Project by Gretchen Rubin, or maybe with other books about facing death such as The Last Lecture by Randy Pausch or The End of Life Book Club by Will Schwalbe.
    • 5/5
      ALS is awful! My Aunt (second mom) just died of this a month and a half ago...

      This book is a wonderful testament to a woman, Susan, who has the best possible attitude she can living with this sad disease. She is making the most of her life! This book is special, as she opens her life to us, the reader!
    • 4/5
      I read a review of this book on a newsletter from Bookreporter.com. I have had two close friends die of cancer in the last year and, as I watched them accept their fate with grace and dignity, I wondered how a person did that. I thought this book might answer that question. It did, at least it did for this person. Susan Spencer-Wendel started to notice changes to her left hand first. Her husband wondered if it might be ALS (also known as Lou Gehrig's disease) but her doctor didn't think so. Susan continued on working as a journalist, raising her three kids and avoiding thoughts of her progressive muscle deterioration. Finally she couldn't avoid the issue and she was diagnosed with ALS at the age of 40. She made a decision to live out her remaining time making memories for herself, her children, her husband and her friends. She didn't want to chase some elusive treatment or spend hours in doctors' offices. She took as her mantra a saying from Dr. Seuss "Don't cry because it is over. Smile because it happened."I hope I never have to consider what to do if I have a fatal disease. But if that does happen I hope that I can "get my Zen on" and follow Susan's example.
    • 4/5
      3.5 starsThe 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 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.
    • 5/5
      I started reading this book in tears. This story, although sad, was beautifully written. The author gave her children so much to remember her by and so much love. A must read.