In a book full of determination and inspiration, perhaps the most inspiring thing is that Susan Spencer-Wendel’s memoir Until I Say Goodbye exists at all. Diagnosed with amyotrophic lateral sclerosis (ALS) at age 44, she typed out the book letter by letter with her right thumb, her only finger still able to type.
What is ALS?
Sometimes called Lou Gerhig’s disease, ALS is an incurable progressive disease of the nervous system. It typically develops between the ages of 40 and 70. Muscles weaken and paralysis takes over the body, eventually making it impossible to walk, dress, speak, swallow, or breathe. In Susan’s case, her health issues began with weakness in her left hand.
In a healthy person, muscles experience microscopic tears when exercised. The body repairs the muscles which results in muscle growth. In an individual with ALS, the muscles are unable to repair the microtears, so exertion weakens the body.
A Year of Living with Joy
The average survival time with ALS is 3-5 years from the time of diagnosis. Knowing this and determined to make the most of her time with the people she loved, Susan left her job as a court reporter and began a year of living with joy. She travels with her best friend to see the northern lights and to Cyprus to pursue family roots. She takes her children on trips that feed their passions and cajoles her daughter into trying on wedding dresses, knowing she won’t be there when her teen daughter falls in love and marries.
Susan’s husband John takes on the role of caregiver as Susan’s muscles weaken. He dresses her, feeds her, and helps her with personal care, telling her, “the least I can do for you is everything.”
While the story has elements of heartbreak, there is no anger or bitterness. In the book, she tells us, “I have today. I have more to give. I know the end is coming but do not despair.” Instead it is full of wry humor and optimism despite the situation she finds herself in.
Susan passed away on June 4, 2014. She is survived by her husband, her three children, and the legacy of this book. Until I Say Goodbye is for all of us, but most of all, it is a gift to her loved ones, full of love for their unique talents and quirks and a reminder that “every day is better when it is lived with joy.”
Crossroads Hospice & Palliative Care provides care to patients facing serious, life-limiting illnesses including ALS. Please call 1-888-564-3405 to learn more about our services. Until I Say Goodbye by Susan Spencer-Wendel is available to order wherever books are sold.
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