Sunday, October 5, 2014

Until I Say Good-Bye - My Year of Living With Joy - Read 52 Books in 52 Weeks - Week 41

For the 41st week of the Read 52 Books in 52 Weeks challenge, I read Until I Say Good-Bye - My Year of Living with Joy by Susan Spencer-Wendel. This is the second book about ALS (Lou Gehrig's Disease) that I'm so thankful that I've read. (The other was Tuesdays with Morrie by Mitch Albom.)

In Until I Say Good-Bye, Susan documents her last year of life after being diagnosed with ALS in June 2011. She was 44 years old when she was diagnosed, and had a husband and three young children. She was an journalist, who ended up taking a leave of absence and then quitting her job so she could focus her energy on spending her remaining time with her family and friends.

She was passionate about traveling, and made that the central part of her last year. She selected family members and friends to go on various trips around the world - some destinations were of personal significance to Susan while others were choices of the traveling companions.

What was especially amazing about this book is that Susan wrote it by typing letter by letter on her iPhone using only her right thumb, her last finger still working. It reminded me of a book that I read earlier this year, The Diving Bell and The Butterfly, about a man in his 40s who had a stroke which ultimately resulted in locked-in syndrome. He was completely paralyzed with the exception of his left eye. He wrote his book by blinking to select special letters one by one.

At any rate, Until I Say Good-Bye is such an inspiring story of how to live one's life fully, with grace, and intention. Although it is difficult to read the impact that ALS had on Susan, she faces each progressive decline with fortitude and a positive attitude. Her focus was more on living well than focusing on what she is losing.

As she said, for example, when she realized she could no longer swim: "It's gone...[There is] nothing I can do [about it].  Slipped away like a charm off a necklace. So how shall I handle it? Pine away for something I can no longer do? Something I adored? No. For that is the path to the loony bin. To want something you can never have. I am the master of my mind. I have a choice about how to feel."

She shared later in the book a quote from Lao Tzu: "Be content with what you have; rejoice in the way things are. When you realize there is nothing lacking, the whole world belongs to you."

She said her intention for writing the book was to write "...not about illness and despair, but [to be] a record of my 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."

What I liked about Susan's attitude is that she was focused on creating a garden of memories for each child. She wrote about her youngest son, who has Asperger's, what he remembered about the trip they took together. When he was able to recall memories from the trip, she said, "Mission accomplished....Wesley's garden is already growing."

Some of her reflections are about issues she has with her parents who adopted her as a baby. Her adoptive mother's treatment and expectations of her were, at times, painful to read. Even her adoptive father's lack of acknowledgment of ALS and her journey were surprising. Yet, her father was supportive of her in many other ways - especially in helping modify her home to make it more visually appealing to her as well as functional to meet her needs as the disease progressed.

She said of her father: "I know he hurts, I have heard him say, when he thought I couldn't hear, 'I don't cry, because if I start, I will never stop.' I thought Dad couldn't say those words to me. But how his actions speak volumes. How all our actions speak more than we can know."

On their holiday card for 2011, Susan and her husband, John, included a quote from The Prophet by Kahlil Gibran:

Then a woman said, Speak to us of Joy and Sorrow.
And he answered:
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

When I looked up this quote, there is actually a bit more to the passage that seems fitting when I think of loss and grieving. It is something that resonated with me as I thought of the loss of my dad in January 2012:

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.

It was interesting to read about how each of the children reacted to Susan's diagnosis. She seemed surprised at times that they didn't talk with her about ALS. Yet, as a psychologist advised her and John, it was best to not talk about the disease with their children. "Children ask, he told us, when they are ready."

That being said, what seemed to be more important to her was not conversations about ALS with her children, but her strength of attitude. As Susan said, "The stronger I am, the stronger my children will be."

One of the parts of the book that was particularly difficult to read were the chapters about the trip that Susan took with her oldest daughter to New York. Among the many things they did, they went to see Wicked on Broadway. One of the songs in the show is called "For Good." The witches sing good-bye to one another, accompanied by harp and horn.

Of course, when I read this, I immediately thought of Sophia as my oldest daughter who plays the harp. The book notes some of the lyrics that were powerful for me to read. So, I found the entire song lyrics online and thought that the parts below were the ones that I wanted to remember as they relate to both Sophia and Olivia:

I've heard it said,
That people come into our lives
For a reason
Bringing something we must learn.

And we are lead to those
Who help us most to grow if we let them.
And we help them in return.

Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you.

It well may be
That we will never meet again
In this lifetime.

So, let me say before we part:
So much of me
Is made of what I learned from you.

You'll be with me
Like a handprint on my heart.

And now whatever way our stories end
I know you'll have rewritten mine
By being my [daughter].

Because I knew you
I have been changed...
For good.

Near the conclusion of the book, Susan writes about how the past year unfolded. She said that "events rarely happen as anticipated." None of things she planned turned out as she envisioned they would. "But [they] were perfect memories, nonetheless. Because I did not have expectations....Accept the life that comes. Work and strive, but accept. Don't force the world to be the one you dream. The reality is better."

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