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- March 25, 2013
- Vol. 79
- No. 12
Bucket List Author Susan Spencer-Wendel: Trips of a Lifetime
Diagnosed with ALS, Susan Spencer-Wendel Traveled from Hungary to the Yukon, Making Memories with the Family and Friends She'll Leave Behind
The lights may not have appeared as planned, but the trip was the beginning of a much bigger journey for Spencer-Wendel, 46. Soon the veteran Palm Beach Post journalist was plotting a lifetime's worth of travels to be taken before ALS took her. (The incurable neurodegenerative disease, also known as Lou Gehrig's disease, is typically fatal within five years of diagnosis.) Among the adventures she chronicles in her new memoir Until I Say Good-Bye: My Year of Living with Joy: a trip to Hungary with her husband of 21 years, John, 48, to revisit the cities where they spent the first years of their marriage; beach-combing on Captiva Island with her son Aubrey, 11; swimming with the dolphins with younger son Wesley, 9; and a pilgrimage to Cyprus to visit the homeland of her late birth father, whom she never knew. "It is not so much what the trips meant to me," says Spencer-Wendel, who communicates largely by typing with her right thumb on her iPhone, "but rather the people I traveled with. I was planting a garden of memories to bloom in their futures."
Nowhere was that hope more heartbreakingly clear than on a trip to New York City last July. There Spencer-Wendel's only daughter, 15-year-old Marina, tried on wedding dresses at famed bridal boutique Kleinfeld, with the aim that years from now, when she shops for the real thing, she'll remember the moment they shared together. Like many of the trips, "there was a lot of meaning that wasn't planned," says Spencer-Wendel's sister Stephanie, 48, who joined them. "We watched Toddlers & Tiaras in our hotel and were rolling. We saw Wicked; what captured the trip was the line, 'I've been changed for the better because I've known you.' We all cried."
The mixture of laughter and tears has been a cornerstone of Spencer-Wendel's outlook since her diagnosis, which came after she began to notice symptoms such as muscle twitches and weakness in her hands. Now a frail 87 lbs., she is by turns overwhelmed with sadness (she cries and requests to stop the interview when asked about her hopes for her children) and wickedly funny. Of accepting her illness, she says, "What else are you gonna do? You're screwed! So you might as well be happy." It's an irreverent attitude she tries to share with others. "I take my cues from Susan," says John. "She's hanging in there so I am too." But he admits that looking back on the trip he and Susan shared to Budapest "is sad. It's sad thinking that I can still go back there and she probably won't."
Even as her muscles progressively deteriorate, Spencer-Wendel continues to seek new experiences—she and John recently took a flower-arranging class—while savoring the memories she has made during the past two years. "I have never been afraid before, and I'm not afraid now," she says. "The trips have left me with an abiding sense I have done what I wanted to do."
April 25, 2015
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