Living with Joy: New book chronicles alum’s journey with Lou Gehrig’s disease

Susan Spencer-Wendel (left) and her best friend Nancy Maas Kinnally on a trip to the Yukon.

When veteran journalist Susan Spencer-Wendel (international studies ’88) was diagnosed with Lou Gehrig’s disease (ALS) in summer 2011, she was determined to write her own ending to her life story.

There is no cure for ALS. But instead of viewing her diagnosis as a death sentence, the award-winning Palm Beach Post courts reporter embarked on a quest to spend the next year living with joy, making special memories with friends and family.

She journeyed to Cyprus in search of information about her deceased birth father. She swam with dolphins with her youngest son. She took her 14-year-old daughter to Kleinfeld’s Bridal in New York City to try on wedding dresses. She traveled back to Hungary where she and her husband John had spent the first two years of their marriage. She took a trip to the Yukon to see the Northern Lights with her best friend, Nancy Maas Kinnally (English ’88).

After the Yukon trip in fall 2011, and as her body and strength began to decline, Spencer-Wendel realized she needed to write all of this down.

“I started on the iPad but my hand would drag across the screen, so the iPhone was the only option,” she wrote in an email. “I used the Notes app on my iPhone a lot, making grocery lists and so forth. I love the fact that you can do it any time. I did not say, ‘Ruh-roh, I have to write my book this way.’ I just wrote when I wanted to.”

But when a book offer came from HarperCollins, Spencer-Wendel started working eight to 10 hours a day, relying on her skills as a storyteller, using her one working thumb — her right one — to type 89,000 words in four months.

As she noted in an interview with Cokie Roberts, “Such is the power of desire. On the phone, I can only see seven lines at a time. Which actually is a blessing. To hyper focus on the sentence at hand. Active verbs. Few adjectives.”

The result is Until I Say Goodbye: My Year of Living with Joy, which was published in March and debuted on the New York Times nonfiction bestseller list. Universal Pictures has also bought movie rights to the book. Spencer-Wendel has almost 10,000 followers on her Facebook page, and about 300 people showed up for her only book-signing so far, at the West Palm Beach Barnes & Noble.

The book is a love story for her family, but it is also a story of a very special friendship, one that began when two 11-year-old girls met in junior high and ended up at Carolina together. [See related column here].

“I want you to understand this, because it’s important,” Spencer-Wendel wrote in the book. “Every day, when I need something, John is there. Every moment I despair, the thought of my children comforts me. And at every turning point in my life, when someone has stepped forward, it has been Nancy.”

Kinnally, a public relations specialist, said in an email that their time at UNC “really cemented our lifelong friendship.” The two friends were both attracted to the fact that “students at UNC are engaged in the world beyond the classroom.”

Nancy (left) and Susan at their 1988 Carolina graduation.

“Our sophomore year we roomed together, along with two other girls, in very tight quarters in Cobb dorm,” Kinnally said. “Our junior year we discovered a common passion for foreign travel, each studying abroad. I went to Brazil and Susan to Switzerland.”

Years later, Kinnally accompanied her friend on her journey to Cyprus, where a relative remarked on the special nature of their friendship.

“It’s not something that can ever be re-created,” Kinnally said in the book.

As the media requests from USA Today, People magazine, NBC’s The Today Show (watch a video here) and others have poured in, Kinnally, John and Spencer-Wendel’s sister Stephanie have helped with many of the press inquiries. Kinnally said at times it has been difficult, but her best friend’s sense of humor and positive outlook continue to be a lesson for her.

“I’ve really enjoyed having the opportunity to talk publicly about one of my all-time favorite subjects: Susan,” she said. “I am inspired by her example of choosing happiness over despair, by her generosity of spirit, and by her determination to pursue her dream of becoming a published author even after becoming almost completely paralyzed.”

Susan, her husband John, and friend Nancy atop Huayna Picchu in Peru in 1997.

Spencer-Wendel wrote in a blog post that, as her body becomes weaker every day, her mind becomes “mightier and more quiet.”

What kind of beauty and strength is she finding today as she stops to listen to the world around her? On a recent visit, Kinnally was sitting on the couch with her friend and light was streaming through the blinds, making a pattern on the wall.

“Susan said, ‘Look at that. I would have never noticed that before, but it’s beautiful,’” Kinnally said.

The book is full of poignant moments, but it is also peppered with Spencer-Wendel’s sense of humor and an unflinching, honest portrayal of her condition. One of her favorite quotes is from Dr. Seuss: “Don’t cry because it’s over. Smile because it happened.”

When asked —how can you find joy when circumstances in your life are less than joyful — Spencer-Wendel wrote simply this:

“You have to try.”

[ By Kim Weaver Spurr ’88 ]