09 Jan 2013 12:51:03
Susan Spencer-Wendel was given possibly the worst news imaginable: she had an incurable medical condition that would probably give her only another year or so to live.
But instead of surrendering to despair, the 45-year-old journalist embarked on a mission to wring every ounce of joy and pleasure out of her remaining months.
Her account of that journey is likely to become a bestseller in America this year. Until I Say Goodbye: My Year of Living with Joy is to be published in March. The eagerly awaited work brought Spencer-Wendel an advance of $2m and the film rights have been snapped up by Universal for a further $2m. Her remarkable story of how she turned a life-ending tragedy into something uplifting is also being translated into 25 languages.
After her diagnosis in June 2011 with Lou Gehrig's disease, otherwise known as motor neurone disease, Spencer-Wendel set about doing what mattered to her and her family and friends – and she was determined to enjoy the process.
She travelled the world completing a "bucket list" of objectives before the degenerative condition eventually took control of her body. They included a visit to see the northern lights over the Yukon with her best friend and a celebration of her 20th wedding anniversary in Budapest with her husband, John.
She even wrote about some of her adventures in the pages of her former newspaper, the Palm Beach Post in Florida.
She made scrapbooks to give to each of her three children and had special jewellery made for her best friends and close family. She also travelled to northern California to see her birth mother and to Cyprus, the home country of her natural father, whom she never met.
In one especially heartbreaking moment in the book, Spencer-Wendel goes to Kleinfeld bridal shop in New York to pick out a wedding dress for her 14-year-old daughter – an event that Spencer-Wendel knows she has no hope of living to see.
She describes that moment on the website about the book. "As my beautiful daughter walks out of the dressing room in white silk, I will see her 10 years in the future, in the back room right before her wedding, giddy and crying, overwhelmed by a moment I will never share … When my only daughter thinks of me on her wedding day, as I hope she will, I want her to think of my smile when I say to her at Kleinfeld's, 'You are my beautiful'."
However, the key to the excitement generated by the book is not the almost unbearable poignancy of such tender moments; it is the happiness they generate. Spencer-Wendel's memoir is determined to be a book about happiness, humour and love. "I am writing about accepting, about living with joy and dying with joy and laughing a helluva lot in the process," she says.
But her condition has been merciless. As her body began to fail her, she ended up typing the manuscript in just three months using the one finger she was still able to control enough to tap on an iPhone.
She did numerous pre-recorded press interviews for radio and television before Christmas as her voice was starting to fail her, leaving her speech slurred. But she has retained her sense of humour.
In a recent update posted to her Facebook page, Spencer-Wendel described having a shirt picked out for her to wear during a shoot with a photographer in December. "She showed me shirts, one slipped off the hanger to the ground. "Oh no!" she said. "Not the Dolce and Cabbana one!" I can no longer say words that begin with the letter G. Took me about 10 tries to explain it's Gabbana, not cabbana. We howled laughing!"
There is not much time left. Spencer-Wendel is now having trouble eating, meaning that last year's Thanksgiving – in which 40 or so members of her family joined her for a celebration – will be her last. She spent Christmas with her immediate family.
In a recent email to the Palm Beach Post, she described her last few weeks and how she keeps up her sense of happiness by reading each day a passage about joy from Kahlil Gibran's famous book of prose poetry, The Prophet.
"I believe this: that in the long trajectory of my family's lives, a deep sorrow now will open worlds of feeling for them in the future. This comforts me, brings me great peace. And the ability to delight in today and today alone," she told the newspaper's readers.
