What would you do?
If you knew you were dying, what would you do? What would you see? Who would you spend your last year with? Susan Spencer-Wendel faced these decisions at forty-four years old when she was diagnosed with amyotrophic lateral sclerosis (ALS) - Lou Gehrig's disease - an irreversible condition that systematically destroys the nerves that power the muscles. She shares her story in Until I Say Goodbye: My Year of Living With Joy. Yes, the book is sad in parts, but the author's optimism and sense of humor shines through and makes us realize that "every day is better when it is lived with joy".
When I first picked up this book I had no idea who Susan Spencer-Wendel was. After reading her story, I have nothing but the utmost respect for her. What I found most remarkable is that rather than focus on what she could not do anymore, she chose to focus on what she could. In healthy people, a muscle fiber will break down and repair itself stronger with exercise, whereas, in an ALS patient, it never recovers and is gone forever. Knowing this, Susan still pushes on and lives life to the fullest. After receiving such a devastating diagnosis, many would go to the ends of the earth chasing an elusive cure. Not Susan. She chooses to experience life with joy and accept what is, not what she would wish. It took her three months to type Until I Say Goodbye on an iPhone, using only her right thumb - the last finger still working. Having been an award winning journalist at the Palm Beach Post in Florida for almost twenty years, it was with joyful determination that she recorded her life until now and her wishes for the future.
Oh, the adventures Susan fits into what she refers to as her "last year of living". While she is still able to move around, she travels to the Arctic Circle to see the auroras with her lifelong friend Nancy, the warm climate of Cyprus to discover her heritage, and takes one-on-one special trips with each of her three children to plant memories to blossom in their future. The youngest, Wesley, has Aspergers Syndrome - a form of autism - and he has always wanted to swim with the dolphins. The first chapter in the book describes their trip to Discovery Cove and the pleasure Susan feels watching the expression of wonder on Wesley's face as he clings to the dorsal fin of the dolphin. But, her favorite picture from the trip is the one that shows her husband, John, holding her half out of the water so she can kiss the dolphin's snout. She compares the gentle giant before her to the one holding her up in the water. She is blessed with a wonderful husband who eventually will bathe and dress her, feed her when she is too tired to hold a fork, and make her feel safe when it all becomes too much to bear. These are the sad parts of the book, but the author does not focus on them. She shares both the good and bad times, all with the utmost courage - many times keeping the loss of yet another mobility to herself to avoid the sympathetic remarks.
Reading a book like this is a great reality check and a reminder to appreciate life no matter what trials you have to deal with. You can't control what happens to you, only your reaction to it, so make the best of it.