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

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

by Susan Spencer-Wendel

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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. ( )
  LibraryCin | Feb 20, 2017 |
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.

( )
  janb37 | Feb 13, 2017 |
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. ( )
  THCForPain | May 27, 2016 |
Until I Say Good-Bye: My Year of Living with Joy by Susan Spencer-Wendel

362 pages

★★★★★ ♥

In 2011, Susan is diagnosed with ALS (or better known as Lou Gehrig’s Disease) and told she has about one good year left of good health and only a few to live altogether. After the initial shock, she makes a decision to quit her job as a journalist and make a year of joy by being with friends and family, traveling with the ones she loves, and taking in all the joy around her. And she made this book as she says in her first chapter: “A book not about illness or despair, but a record of my final wonderful year. A to gift to my children so they would understand who I was and learn the way to live after tragedy: With Joy. And without fear.” And even more impressive? She would write most of this book in the end of good health – when she was already in a wheel chair, unable to move, barely talk, or do much of anything – by using her one movable appendage (her right thumb) and type letter by letter her life story on her iPhone.

Right away I was sucked into this story by this amazing woman. Each chapter is started by a photo that depicts something within that chapter. She obviously knows how to write after many, many years of being a journalist and she throws it all out there – the good and the bad. She is completely honest and open with her situation, from beginning to end. Not every chapter is filled will happiness and joy, living with a terminal disease is difficult. But this woman is just absolutely amazing and grateful in everything she did. I fell in love with this book and I fell in love with Susan. I want to be this woman’s friend. Her outlook is so inspirational. Many of her stories made me smile – stories about her trips with her children (one a teenage girl, one the middle child with an old soul, and a youngest with Aspersers), her caring and loving husband, her family, and her friends. Some made me cry, mostly because I was overwhelming with inspiration in her thoughts.

More than once she uses the quote by Dr. Seuss: “Don’t cry because it’s over. Smile because it happened.” What wonderful words to live by. ♥

Check out this YouTube Video: http://www.youtube.com/watch?feature=player_embedded&v=5OufJOj75Dc. A 2 ½ video by the author and her husband and about the book. A sweet, heartwarming intro on what to expect
( )
  UberButter | Feb 9, 2016 |
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Amazon.com Product Description (ISBN 0062241451, Hardcover)

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 toseveral countries and sharing special experiences with loved ones. One trip takes Spencer-Wendel and her fourteen-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.

(retrieved from Amazon Thu, 12 Mar 2015 18:09:12 -0400)

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.… (more)

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