I’m reading a book that is breaking my heart. It’s Until I Say Good-Bye: My Year of Living with Joy, by Susan Spencer-Wendell with Bret Witter.
It covers July 2011 – August 2012, when Spencer-Wendel, having been diagnosed with ALS, spent a year taking trips and creating memories for herself and her family while her health was still good enough to do it. She was a journalist before her illness, and she tells her story with clarity and candor.
After her first major trip, to the Yukon with her best friend, Nancy, to see the northern lights, it becomes apparent that these trips will weaken her. She feels weak in the cold weather, and the weakness persists when they return to warmer temperatures. On the way home, they stop in Vancouver, where they walk down about 400 steps to see the sunset with friendes on a particular beach – and then back up the 400 steps to where the car was parked. Spencer-Wendel writes:
“I have been unable to walk right since. I stumble. I cannot lift my legs. When muscle fiber breaks down in healthy people, it repairs itself stronger. That is the biology behind exercise. When muscle breaks down in an ALS patient, it never recovers. It is gone forever.”
Spencer-Wendel did not anticipate how much these adventures would deplete her. Yet when her friend later asks her if she regrets it, she says no. “It was beautiful. A moment I cherish and would not trade.”
Her physical therapist sees how she has weakened and tells her she needs to stop, that the effort of traveling is hurting her. Spencer-Wendel replies, “Not a chance.”
It reminds me a bit of Edna St. Vincent Millay’s poem, “First Fig”:
My candle burns at both ends;
It will not last the night;
But ah, my foes, and oh, my friends—
It gives a lovely light.
The candle of Spencer-Wendel’s energy and muscle control is going to burn quickly no matter her choices, but she chooses to burn it brightly. She “spends out,” to use Gretchen Rubin’s phrase. She does not try to conserve her energy for any vague, future time that will not come.
I’m only about seventy pages into the book, but so far, once she receives a definitive diagnosis, there’s not a shred of self-pity. There is grief, especially when she first receives that diagnosis. There is gratitude—lots of it—for forty-some years of a happy, healthy life. But there is no Why me? The author describes herself as someone who is spiritual and believes in God. But there is no search for a reason or any purpose of God in her suffering. There is just determination to live joyfully and creatively in the time that she has left.
This book breaks my heart and makes me cry.
The word “brave” gets used a lot to describe people with terrible injuries and debilitating, terminal diseases, but it keeps coming to mind as I read her story.
I’m challenged by how purposeful she is. Soon after her diagnosis, she begins to get clarity about how she wants, and does not want, to deal with ALS. And she takes action, with purpose and intention, to live that year the way she wants.
I admire the concepts of clarity and intentionality, of purpose. It seems like so much of the time, I kind of muddle along, just trying to get through whatever busy season I’m in as well as I can. I think somehow I’ll have the time and energy to do things differently after the holidays, after I finish the big project, after we get back from the trip, after I clean out the piano room. To be fair, Spencer-Wendel characterizes her own life before ALS as “my autopilot life,” happy and fulfilling though it was.
When I was young, my stepmom had a little book of proverbs collected by Moishe Rosen. The one that always stuck in my head went something like, “Experience is the best teacher, but the tuition is less if you can get it secondhand.”
We’ll see where the rest of this book goes. But I’m hoping that, as I read Susan Spencer-Wendel’s beautiful, heartbreaking account, I learn just a bit more from her experience about living with clarity and purpose.