Until I Say Goodbye: Susan Spencer-Wendel and Her Joyful Last Days


It is not the time or circumstance that dictates our lives, rather, it is the perceptions we keep of our experiences that do. Take Susan Spencer-Wendel for instance, and how she continues to maintain a beautiful life while combating a degenerative disease known as amyotrophic lateral sclerosis (ALS).

Susan, a mother of three, discovered one day in June 2011 that she was suffering from a deadly degenerative disease called ALS. What makes this medical condition dreadful is that the muscles start dying on their own, and there is no hope in recovery. The patient becomes weaker day by day and as a consequence, the body activity declines rapidly.

Now imagine a 45 year old, mother of three getting this news! You are in the prime of your life, and sususan_spencer_wendelddenly, you discover a clinical condition that would not only cause early death, but that would also make the rest of your life painful. Such dreadful news can cause depression in any human being. Or is it the words chosen to describe the event a contribution to these thoughts? Susan took a totally different approach. “My muscles are dying, they cannot return. I will never again be able to move my tongue enough to clearly say, ‘I love you’,” she wrote. “Swiftly, surely, I am dying. But I am alive today.”

Susan’s decision was simple. She was determined to make the rest of her days, the best of her days. Susan accepted the illness just as the other blessings that life had showered her with. A loving husband, beautiful children, and the will to enjoy every moment of life became her strengths. With these pillars of strength, she decided to travel her favorite destinations.

“Time to stop dreaming and start doing, I thought,” she mentioned of her trip.

She took her 14 year old daughter Marina to New York to pick out her wedding dress at Kleinfeld’s Bridal,  the same location TLC reality show ” Say Yes to the Dress” is set. They are both fans of the show and Susan knew that she would not live to see her daughter walk down the aisle.

“As my beautiful daughter walks out of the dressing room in white silk, I will 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,” she wrote. “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 said to her at Kleinfeld’s, ‘You are my beautiful’.”

She traveled everywhere she wanted to go, never letting her illness stop her. She went to Budapest, the place she spent her early married life. She went on skiing holidays, and traveled to Northern California and Yukon. Her remarkable zeal to create beautiful moments in life in spite of all the odds makes her a living legend. Susan accepted everything that life offered to her, be it bliss or suffering, her zest turned everything into beautiful moments for her and everyone in her presence.

This is not all, to share her zest for life, love and beauty, Susan shares her life in her book titled “Until I say Good-Bye.” It is a lively memoir of how she celebrated life while combating the deadly ALS. This beautiful book shares the message that to live a blissful life, one does not need a lot of physical power, all one needs is the will to create beautiful moments from whatever life has to offer.

At the end of the day, it’s not about how long you live, but rather, it’s about how you lived the amount of time that life has given you. #Rewordit



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