This time last year Susan Spencer-Wendel already knew the clock was ticking louder by the day. The Lou Gerhig’s Disease was steady and relentless, but when she first learned the diagnosis she vowed to live the rest of her life “with purpose and intent,” as an article in Saturday’s Palm Beach Post revealed yesterday. Has she ever been victorious!
Our heroine – her body soon limited in a way she could only type with one finger – dashed out 89,000 of the most amazing and victorious words you can imagine over a four-month span last summer and, this Tuesday, the whole world will be able to share “in the free and breezy State of Susan” when Harper Collins Publishers unveils all 364 pages of her valiant book, “Until I Say Goodbye – My Year of Living With Joy.”
Written with the help of Bret Witter, the book is hardly a self-help book (although it will undoubtedly lift the spirits of its readers) nor is it a gloomy look at what is inevitable with amyotrophic lateral sclerosis (it is untreatable.) No, instead Susan shares her wit and her spirit and, in the words of Witter, “tells a love story about a woman who is in every way an ordinary person and (because of her unflappable soul) everyone can relate to her.”
The author, now in her late 40s, has been a reporter for the Palm Beach Post for the last 20 years. She is pretty, determined, feisty and funny. A graduate of the University of North Carolina, Susan and her husband have three daughters and life was good until that day in June, 2011, when doctors discovered the curse of Lou Gehrig’s Disease. It paralyzes the body, ever so slowly, and the thumb that Susan used to complete her book – this after the rest of her fingers went numb – is now very weak.
“I know what I’ll do,” she told fellow Post writer and friend Jan Tuckwood earlier this week. “I’ll get a purple ink pad and sign my books personally!”
Such pluck is hardly lost on Witter, who edited the book “and sorta’ helped arrange the furniture” so the book flows and is so enjoyable. “I have never been as inspired by anyone, ever, as I have been by Susan. It has been an honor to help her plant her ‘garden of memories’ for those she loves--and for you,” he wrote on the book’s website.
“I have cried many times thinking how she will soon leave us (honestly, I am crying right now), but more than that I have laughed, because even though her legs are like swivel sticks and her feet like pearl onions, as she recently wrote,” he added. “Susan is funny, ferocious and full of life. Just like her extraordinary book.”
One poignant chapter includes a special moment when she took her oldest daughter, age 15, to Kleinfeld’s, the famed bridal store in New York, and watched her daughter put on a wedding dress. “I simply wanted to make a memory. I wanted to see my beautiful daughter on her wedding day.
“I wanted to glimpse the woman she will be,” Susan wrote. “Maybe I would cry. Mothers cry, right? But I knew I would laugh, too. Because I would be with Marina. I would be imagining her happy.”
She tried to explain the memories she was collecting in Jan Tuckwood’s story in the Palm Beach newspaper yesterday. “You can set out with the expectation of one memory and get a completely different one — and you can be happy with that one, too.”
Witter witnessed Susan’s uncanny ability to seize the moment time and time again. “She never set an expectation in her mind that an experience has to be a certain way or it’s a failure. She said: ‘I’m going to enjoy the experience, whatever happens.’
“She wrote the book the same way,” he explained. “Susan let the experience of writing it guide her. When you live like that, without expectations, you enjoy life more,” Witter said, Susan’s karma greatly influencing his own life. “She is part of me now,” he told the Post writer.
“Her biggest lesson — it feels like a cliche, but it’s most important,” Brett interjected, “is don’t make excuses and say you can’t do something. Do what you want to do and enjoy what you have. If Susan can enjoy her life, why am I putting expectations on my life and worrying if I meet them or not? Why am I not enjoying my life?”
Wow! For somebody who is terminally ill to have such grace, that is “big medicine” indeed, “Writing this book was not work. Like each journey I took during the year, it brought me joy,” the author said. “It kept me alive. When I typed the last letter of the first draft…I couldn’t believe what I had accomplished. It felt as if I’d pulled myself up a mountain with nine fingers tied behind my back.”
This Tuesday her book will be released in both hardback and e-version. In it Susan Spencer-Wendel will share what has been, very markedly, the greatest year of her life because she willed it to be. She made it be. No wonder the words of Buddha became her mantra: “Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.”
While no one would have dared predict it when Susan wrote so madly last summer, our heroine – still very much alive -- will get to see her book hit the shelves and, for her daughters most especially, roll her thumb on a purple ink pad so that each of her girls will have a signed copy of their mom’s memories for the rest of their lives.