Memoir of journalist with ALS documents her appreciation of the world around her
Susan Spencer-Wendel is dying. At 46. She knows that. Her husband, John, knows that. Her three children know it. It's just a fact of life for them.
And now the world will know her story through her new memoir, “Until I Say Good-Bye: My Year of Living With Joy.” It's a touching and brutally honest account of one mother's inspiring attempt to get the most out of the time she has left. As the memoir's subtitle says, it's her year of “living with joy,” be it with friends, her family or complete strangers.
That year included everything from traveling in hopes of witnessing the Northern Lights — she did not — to tracking down family roots on Cyprus — she did — to visiting Kleinfeld Bridal in New York with her teenage daughter, Marina, only because she knows she won't be around when the real pilgrimage will take place.
Spencer-Wendel, an award-winning journalist who lives in West Palm Beach, Fla., has ALS, better known as Lou Gehrig's disease, the neurological condition that attacks the nerve cells responsible for controlling muscles. She was first diagnosed in June 2011. ALS eventually leaves its victims limp in wheelchairs, which is pretty much where Spencer-Wendel is spending her days this winter.
And although she now tires easily after a short conversation and needs to rest, she is still texting and is writing with the help of her husband, John, 48. They have been together 23 years. He acts as her translator-interpreter-voice, as he did for this story.
“Nothing surprises me about her,” he says. “I wouldn't have expected anything less from her. She's always set the bar really high. This book is what happens when you take someone who can't sit still and make them sit still.” (Movie rights to the memoir have been sold to Universal; a screenplay is being adapted.)
Her older sister, Stephanie “Steph” Harwood-Parlamento, who lives nearby, knows her sister's joie de vivre well.
“I think Susan is the person who best exemplifies someone living with joy despite the circumstances,” she says. “She has always looked at the world at its best. She enjoys every day, and her illness has brought that to a sharper point. She can still appreciate everything and everyone.”
And everyone agrees that Spencer-Wendel is still a pure force of nature, including oldest friend Nancy Maass Kinnally. They were born two weeks apart in 1966, were raised three miles apart in Palm Beach County and met in junior high when both were 11. She is in much of the book, a more-than-willing travel companion for her best friend.
Kinnally, a public-relations specialist, calls her friend's discipline “just amazing.”
“By the time she started (writing), she only had her right thumb to type with,” she says. “She would keep emailing me chapters on my iPhone.”
Spencer-Wendel wrote much of her memoir in a grass shack out on the lawn. And there has been no complaining in the process.
“There's no self-pity,” says her husband, who has taken time off from his job in pharmaceutical sales to care for his wife. “We all take our cues from her.”
That includes the couple's three kids, Marina, 15, Aubrey, 11, and Wesley, 9. “They've never seen it getting her down.”
Says their Aunt Stephanie: “They rub her nose. They brush her hair out of her eyes. They have very normal routines with their mother. Nothing is strange.”
Spencer-Wendel, who has difficulty communicating now, sums up the whole experience in her memoir's closing pages.
“Of course, if you've read up to here, you know events rarely happen as anticipated. The no-show Northern Lights, Stephanie upchucking on the cruise ... even Kleinfeld's — none of those things turned out just as planned. But were perfect memories, nonetheless.
“Because I did not have expectations. I guess that's a lesson, if there must be one. 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.”
Craig Wilson is a staff writer for USA Today.