I cried several times reading 'Until I Say Good-bye: My Year of Living with Joy' by Susan Spencer-Wendel. Her memoir chronicles her battle with ALS and her resolution to live the last years of her life with joy, hope, love and beautiful moments with all the people she loves most. At one point in the book she thinks about her funeral and says, "Till then, I will live in the Taoist way: peaceful, not strident about wants or beliefs. I will live in the now.
As Lao Tzu wrote:
'Be content with what you have; rejoice in the way things are.
When you realize there is nothing lacking, the whole world belongs to you.'"
When faced with the knowledge that you will no longer have the function of your body as ALS melts away your nerves and muscles but leaves your mind completely intact, how would you choose to use your days? Would you as Susan Spencer-Wendel decided to do, use your only functioning finger, your thumb, to tap out an entire book in four months? Would you choose to reconnect with your birth father's family and find your biological mother? Would you choose to take trips with each member of your family and your best friend knowing that the damage done to your body on these adventures would only make you weaker? Would you choose to live with joy or wallow in the injustice of being struck with a terminal illness that has no cure when you are only 44 years old with three beautiful children, an amazing husband, and a career that you love?
Susan Spencer-Wendel chose joy again and again and wrote a life affirming book that made me want to tell my daughters and husband every minute how much they mean to me. When I look in the mirror and see a healthy woman staring back at me, I feel lucky. In yoga class, even in the most challenging moves, I am free because I can move my body. My limbs are not dead weight. I can still hug my husband, and take my dog for a walk unfettered. I don't need someone to help me on a toilet, or push my wheelchair. And yet I still frown on things I don't have or what I haven't accomplished or why my body isn't the way I want it to be.
Just like when I read and taught 'Tuesdays with Morrie' by Mitch Albom which recounts the lessons Mitch learns from his old professor who is dying from ALS to my students over the past 15 years, Susan's inspiring life lessons about living with joy snapped me into the now and reminded me to be present in the simple gifts of every day moments with my two daughters, my husband, my home, and my friends. When I drink wine, eat great food and am able to carry a conversation at the same time, that is a gift. When I get to brush my daughter's tangled hair in the morning, that is a gift. When I get to carry my 4 year old to bed at night, that is a gift. And when I get to type with both hands and write my truths, that is a gift.
What are the simple gifts in your life that you haven't paid attention to lately? The time is now.
I'd like to thank Susan for having the strength and courage to write this book even in her weakened state. Reading her adventures with each of her children especially the trip to NYC with her daughter, made me cry. She knows that she won't be there to see her daughter walk down the aisle, so she took her 14 year old to Kleinfeld's, the famed "Say Yes to the Dress" bridal shop, to see her daughter in a wedding dress.
With humor and reverence, Susan recounts the year she spent reconnecting with her family in Greece, spending time with her friend, Nancy in the Yukon, taking her son, Wesley, to swim with the dolphins, spending a romantic trip in Budapest with her husband, taking her son Aubrey to Captiva Island, and taking her sister on a cruise.
She chronicles these trips with grace, love and, of course, joy for the simple gifts that each person she loves has given her. While visiting her birth father's family, her friend, George played a video of Susan showing her young, vibrant and healthy. Watching the video gave her one of those "bright-line moments, where [her] handicap whomps [her] over the head" and what does she do? Fuss? Cry? Mourn?
No. Susan chooses instead to "dwell in what there remains to be grateful for." She says, "My hands are snarled, but I can still touch. I cannot hold, but I can feel. I have my connection to the world, which ALS will never take away." If she can be this way in the face of so much loss and find the beauty in life, why can't I? Why can't you?
My profound thanks to Susan Spencer-Wendel for reminding me to be grateful for all the gifts, big and small, that I have every day.
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