A Dying Mother Battles Lou Gehrig's Disease

Susan Spencer-Wendel is dying of ALS. In her new book, she documents her final year of joy.

Susan Spencer-Wendel

Susan Spencer-Wendel

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What would you do if you had a year to live?

That's what Susan Spencer-Wendel had to decide. She's 46, and she's dying—she knows it, her husband John knows it and so do their three children. She has amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, a neurological condition that attacks the nerve cells responsible for powering muscles.

In her new memoir, "Until I Say Good-Bye: My Year of Living With Joy," Spencer-Wendel—an award-winning journalist who lives in West Palm Beach, Fla.—describes her attempts to make the most of her final days. When she was diagnosed in June 2011, "I wept in the doctor's office," she told U.S. News via an e-mail typed with her right thumb, the only finger she can still use. She Googled ALS once, and then never again. "One look at the ALS website—the description, the equipment, no cure—was enough."

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She and her husband broke the news of her condition to their children slowly. "We didn't drop a bomb on their life," she says. "We gradually answered their questions more and more directly. They led us. They asked what they really wanted to know."

The diagnosis came after 44 years of "perfect health," Spencer-Wendel says, and she was determined to spend her remaining time wisely. That meant taking the trips she'd longed to take, and organizing what she was leaving behind. Planting a garden full of memories for her family. And, because she was a writer, recording what she vowed would be her "final wonderful year," which she would live with joy and without fear.

"I am a journalist," she says. "A truthteller by nature. I was naturally compelled to do it—it was not hard. It was a mission, a purpose."

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In "Until I Say Goodbye," Spencer-Wendel describes the special trips she began taking after her diagnosis. She went to the Yukon to see the northern lights with her best friend. She went to Budapest, Hungary, and she went swimming with dolphins. She went to Northern California to meet her birth mother, and to Cyprus, the home country of the deceased birth father she never met. She also went to Kleinfeld Bridal in New York City with her teenage daughter, Marina, where she watched the 14-year-old try on wedding dresses—dresses for the wedding she knows she'll never see. She simply wanted to make a memory, to "glimpse the woman she will be."

She ends the book with a plea to the friends and family members who have promised to take care of her children, making sure Aubrey goes to Cyprus to meet the relatives he looks so much like, and fostering Wesley's drawing skills. "I am not gone. I have today. I have more to give," she writes. "I know the end is coming, but I do not despair. I leave you, my children, the memories of all we enjoyed and discovered. I leave this book."

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The tales are painfully honest, and they're heartbreaking because we know the inevitable outcome. But mostly, they're inspiring. Spencer-Wendel, even in the darkest of moments, remains insistent on happiness—staggeringly so.

Today, she says she's doing "as well as can be expected. My body and voice become weaker every single day, but my mind becomes mightier and more quiet. You do indeed hear more in silence." She can no longer walk more than a step or two to the bathroom, even as her husband holds her. "My limbs look like swizzle sticks with pearl onions stuck on the ends," she says. "I often choke while eating and drinking."

She's become fascinated with space, and her family has paid a few recent visits to the Kennedy Space Center in Orlando, Fla. She says she thinks of the astronauts—who often don't like to put their space suits on because they can't scratch an itch—when she cannot scratch herself.

"Until I Say Goodbye," which was published in March, will be translated into more than 20 languages, and Universal has purchased the movie rights. Spencer-Wendel appreciates the attention, though she finds it both surprising and overwhelming. "I am constantly saying, 'This is unbelievable' and 'Someone pinch me,'" she says. "If this wasn't a dream, it would be a nightmare." She just hopes readers laugh a little as they thumb through the pages of the book—even if they cry.