Treating ALS with Joy

Illness is intertwined with narrative: its symptoms shape content, chronology, emotions, and the self. But they also shape the physical creation of narrative itself.

Jean-Dominique Bauby “writes” The Diving Bell and the Butterfly by blinking, the only physical motion that he can still control as a quadriplegic. In Until I Say Goodbye: My Life Living with Joy, Susan Spencer-Wendel “writes” an entire 363 page novel with her right thumb in the Notes application on her iPhone: ALS has weakened all her other fingers. And to (attempt to) wrap my mind around this, I have written this post in the same way.

ALS: Amyotrophic Lateral Sclerosis. Also known as Lou Gehrig’s disease. With the slow death of motor neurons comes deteriorating muscle, loss of motor control, and eventual death of the victim.

After months of ignoring her inactive left hand, Susan Spencer-Wendel’s official diagnosis leads to her own inevitable acceptance. Denial of the disease disintegrates along with her muscles.

Finally facing the grim future of terminal illness, Spencer-Wendel makes a commitment: to live her last years in joy. To “dwell in what their remains to be grateful for” (293). To accept, even embrace her illness.

Spencer-Wendel retraces her past and resolves mysteries about her adoption by befriending her birth mother and traveling to Greece, the land of her deceased birth father. She boldly travels to places new and old: Alaska with her best friend, to see the Aurora Borealis. Hungary with her husband, to reminisce in the land of their newlywed days. And a series of trips with the kids, to create memories that will last for a lifetime, even if their mother will not.

But amongst these exciting adventures, Spencer-Wendel must quit her job, abandoning her identity as a courts reporter for Palm Beach Post. She has to forfeit the responsibility of picking up her kids from school, from driving all together, because her unpredictable loss of control has turned her into a safety hazard.

Spencer-Wendel finds a way to share her experiences with ALS and joy through her passion for writing. She sets out to write “a book not about illness and despair, but a record of my final wonderful year” (21). While understanding that her journeys arise from the crippling terminality of ALS, she appreciates them for what they are.

What I love about Until I Say Goodbye is that you don’t have to be near “goodbye” to leave this text with a refreshed perspective on life. Illness is a life-altering event for victims and their supporters, but through narrative, it can extend it’s reach. Illness narratives can resonate with more than just the ill, but also with the well.

“Serious illness can change you…or simply reveal who you are” (144). Illness may have been a catalyst, but Spencer-Wendel realizes that these dreams, these journeys, have always been a part of her. She challenges us to take a step back, to reflect on how we live our lives. And, as she reminds us throughout the novel, “smile” (78).

“We can despair. It’s what we summon after the tragedy- the tenacity- that matters” (247). For Spencer-Wendel, that tenacity is the joy of life.

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