Imagine your body healthy, your life active. Then imagine your body slowly shutting down, one piece at a time, until the only movement you have left is in your right thumb. ALS has taken your body captive but not your joy and not the remaining time you have left. Susan Spencer-Wendel didn’t have to imagine this happening to her because it did happen, and Until I Say Good-Bye is a memoir chronicling her battle with ALS and her plan to live life to its fullest while she still had the ability.
I saw this book in Oprah Magazine last year and put it immediately on my Christmas wish list. I was so very happy to receive it. Spencer-Wendel, a former reporter, uses that right thumb and her iPhone to tap out an entire book, letter by letter, that gives readers an insight into what’s happening in her mind. It is a somewhat painful read because you are acutely aware that Spencer-Wendel is dying. There is no cure for ALS, and the ultimate result of the disease is death. I held my breath during the last few chapters, waiting for an epilogue from Spencer-Wendel’s husband. (To the best of my internet researching ability, I am fairly confident that Spencer-Wendel is still alive.) Thankfully that epilogue never comes, and readers get to enjoy hearing about Spencer-Wendel’s family, how she made the best of her last year of real mobility, and how is coping in the prison that has become her body.
I’ve read a lot of criticism about this book because Spencer-Wendel is relatively well-to-do and has access to the best treatments and had connections to the publishing industry that ultimately helped her get this book published. But I think those criticisms are totally unfair. Are they factual? Well, yes. She had a very successful career as a reporter and during that time, she networked and made a lot of connections that ultimately helped her know the right people in the right places. She has access to doctors that many – most, I would venture to say – people suffering from ALS don’t have access to.
But does that mean her story isn’t worth telling?
Absolutely not. Because at the end of the day, she is a real person and she is dying. We are all one day closer to death, but the reality is that Spencer-Wendel has much fewer days than the rest of us. She is a mother. A sister. A wife. A friend. She is young – she turned 48 at the end of 2013. And she is dying of a disease that has taken her body from her, but not her mind. It has not taken her joy and her will to be present while she is alive, and that is a story that so beautifully and graciously tells in the pages of Until I Say Good-Bye.
I love this excerpt from the book. I’ll end with this because it so perfectly sums up this book, what you can learn from a dying woman, and why you should read it:
“I cannot lift my arms to feed myself or hug my children. My muscles are dying, and they cannot return. I will never again be able to move my tongue enough to clearly say, ‘I love you.’
Swiftly, surely, I am dying.
But I am alive today.”