Until I Say Good-Bye

Moving and inspirational reflections on life from one woman, diagnosed with ALS, making the most of her final days with family and friends.
In June 2011, Susan Spencer-Wendel was diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease. It is a disease that systematically destroys nerves that power muscles; Susan, 45 years old and a mother of three, already walks with braces and is losing her ability to speak. Though Susan cannot stop the rapid decline of her body, she refuses to let her life stop before its time. Since her diagnosis, Susan has made sure that every day counts, is more present than ever in her daily life, and ready to share her strength, determination, and spirit.
Susan’s story began growing interest when she published a piece in her local paper about a trip she took to see the Northern Lights following her diagnosis. But this was just the first of many special travels, including a visit to Budapest, where she and her husband spent the first two years of their marriage; a cross-country journey to Northern California to meet her birth mother; and soon a trip to Cyprus, the home country of her deceased birth father, to reunite with the relatives of a man who never knew she existed and return their treasured family Bible.
But one of the most important adventures Susan has planned—the story that drew national attention when mentioned by the Wall Street Journal—will bring Susan to New York City with her 14 year old daughter, Marina. Susan and Marina, both big fans of TLC’s Say Yes to the Dress, will visit Kleinfeld’s Bridal, where the two can share the experience of Marina’s search for the perfect dress for the wedding Susan will never see. In her own words: “I told her so many times: ‘Baby, we’re going to Kleinfeld’s for your dress one day.’ And I always keep my promises. At least the ones that mean something. … I will watch my beautiful daughter walk out of the dressing room in white silk and see her ten years in the future, in the back room right before her wedding, giddy and crying, overwhelmed by a moment I will never share.”
Though the two will not be buying a dress quite so early in Marina’s life, their plans, and Susan’s story have begun to touch people around the world. Universal Studios has acquired film rights, and foreign book rights have been sold in UK, Taiwan, Germany, Italy, Holland, Brazil, Hungary, and Israel, with much more in the works. Susan writes, “I’m beyond thankful so many people can relate to and empathize with our story. I’m glad people are moved. I’m happy Marina and I have stumbled, accidently, on something that crystallizes what it means to be a family, to grow up, to dream, to die, but more importantly to live fully and joyfully.”
BREATHE DEEPLY is a truly magical story and so much more than one woman’s “bucket list.” It’s a celebration of life, a look into the face of death, and the effort we must make to show the people that we love and care about how very much they mean to us.