Susan Spencer-Wendel (1966–2014)

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.… (mais)

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.
… (mais)