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.
