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Until I Say Good-Bye: My Year of Living with Joy

por Susan Spencer-Wendel

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2471582,095 (3.91)15
A moving and inspirational memoir by celebrated journalist Susan Spencer-Wendel who makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS).After journalist Spencer-Wendel learns of her diagnosis of ALS, more commonly known as Lou Gehrig's disease, she embarks on several adventures. This includes taking her fourteen-year-old daughter, Marina, to New York City's Kleinfeld's Bridal to shop for Marina's future wedding dress-- an occasion Spencer-Wendell knows she will never see. This is her account of living a full life with humor, courage, and love, accepting death with grace and dignity, and showing the people we love and care about how very much they mean to us.… (mais)
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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. ( )
  LoriKBoyd | Mar 24, 2020 |
I feel really guilty about giving this book a two-star review, since it is literally a dying woman's memoirs, and obviously the writing process provided her with much needed comfort.

Susan Spencer-Wendel was diagnosed with ALS in 2011, and died in 2014, a year after this book was published. She begins the book by informing her readers that she has chosen to live fiercely, accepting her imminent death and embracing with open arms the life she has left to live. She travels extensively, visiting Canada, New York, Hungary, and Greece. She builds a Chickee hut in her backyard, where she plans to spend her remaining days in the Florida sun, writing her book on her iPhone and spending time with her family. She gracefully decides to enter hospice, where she eventually dies. Not all Susan's experiences in her final years require money, but I did get a bad taste in my mouth as Susan extols how she is able to live her short life to the fullest, as made possible by her financial resources.

Susan was a journalist, and while I did not read any of her professional work, I am shocked by the writing style of her memoirs. Perhaps this book would have been better as a blog or similar format, as it is written in short chapters/posts and conversational in tone. The casual, chatty voice of Susan's memoirs cheapens her message and adds an undertone of insincerity.

The call to living life to the fullest and being grateful every day, even while facing death at a tragically young age, is incredibly important. Susan was indeed very brave to face ALS with such an attitude, and I applaud her for this strength. She wrote this book in a rush, and in the end was writing on her iPhone Notes app. However, I do wish an editor had scrubbed her manuscript a bit more thoroughly. ( )
  bookishblond | Oct 24, 2018 |
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.
( )
  zarasecker18 | Aug 22, 2018 |
The memoir of living with ALS. Susan is 44 and it starts with the movement of her left hand- or lack of movement. After 2 years of denial, where her speech and walking is affected, her diagnosis is confirmed- life ending ALS. She has 3 children and a husband and chooses to spend her time left traveling and enjoying her family, friends and pets. ( )
  camplakejewel | Sep 18, 2017 |
3.5 stars

The 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. ( )
1 vote LibraryCin | Feb 20, 2017 |
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A moving and inspirational memoir by celebrated journalist Susan Spencer-Wendel who makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS).After journalist Spencer-Wendel learns of her diagnosis of ALS, more commonly known as Lou Gehrig's disease, she embarks on several adventures. This includes taking her fourteen-year-old daughter, Marina, to New York City's Kleinfeld's Bridal to shop for Marina's future wedding dress-- an occasion Spencer-Wendell knows she will never see. This is her account of living a full life with humor, courage, and love, accepting death with grace and dignity, and showing the people we love and care about how very much they mean to us.

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