The Herald, Sharon, Pa.

March 14, 2013

Dying writer pens memoir for her family

By Sandy Scarmack
Herald Staff Writer

HERMITAGE — An award-winning journalist with family ties to Hermitage, has published the journey of her final days battling Lou Gehrig’s disease, told in her memoir, “Until I Say Goodbye - My Year of Living With Joy.”

The book, published by Harper Collins, was released Tuesday. A movie deal is in the works.

Susan Spencer-Wendel, 45, recently resigned from her longtime position as an award-winning court reporter for the Palm Beach Post, after a 2011 diagnosis of amyotrophic lateral sclerosis left with her with dwindling muscle control that she knew would shortly result in paralysis and eventually in death.

Married to John Wendel, whose parents Janet and Dick Wendel live in Hermitage, she made the decision to make the most of the time she had left, sharing special memories meant to last a lifetime for her husband and each of her three children, Marina, Aubrey and Wesley.

Susan and John took a trip to Budapest, Hungary, to celebrate their 20th anniversary and recall the years they spent there while he was on a Fulbright Scholarship to teach English. She started a newspaper while she was there.

Since her diagnosis, she has swam with dolphins and traveled to the Yukon to see the Northern Lights with her best friend, Nancy.

She relies on her husband to do the physical work for her. He bathes and dresses her, feeds her and has learned to do her hair.

Her speech, when she can speak, is garbled, her  her mother-in-law said.  But Wendel is able to understand her and speaks for her.

She tapped out the entire book on her iPhone, using her right thumb, the only part of her she can move. Near the end of the book, she relied on eye-movement technology to finish the typing. The book was co-written by friend and writer Bret Witter.

She spends her days in a specially built “Chickadee” hut in the yard where she is just now reaching the pinnacle of her writing career, but well aware that time is very limited, her mother-in-law said.

The entire family of 40 spent the holidays together and Susan writes on her Facebook page that she thinks it will be the last holiday they spend together. She asked for rings for Christmas that she could pass on to her daughters.

Her husband, once a pharmaceutical sales representative, quit his job to care for her.

A book advance of $2.3 million, along with another couple million in movie rights have secured her family’s financial future, but “there was so much more Susan wanted to say. She wanted to make memories for her family because she knew she wouldn’t be around,” Mrs. Wendel said.

Wendel has said he is considering going back to school after Susan’s death to become a physician’s assistant and his wife has written “Good! That makes me happy!”

She also writes in the book that her husband told her upon learning of her diagnosis “the least I can do for you is everything.”

She took her teenage daughter, Marina, bridal shopping in New York City, because she knew she wouldn’t be around for the day her daughter walked down the aisle.

She writes in the book that she wanted “her to remember the day we shopped for dresses. I wanted to see her in a wedding gown. And for her to remember that I was happy and smiling.”

She also traveled to California recently became reunited with her birth mother, and to Cyprus, the home country of the birth father she never knew, Mrs. Wendel said.

Her message to her family is not to grieve, Mrs. Wendel said.

“She told John she expects him to marry again, to find love and find someone who will run triathlons with him,” Mrs. Wendel said.

The book and her story has been chronicled on NPR, Today, and numerous media outlets.

The author, and her husband, will be at book signings in West Palm Beach, Fla., on Saturday, where she will thumbprint copies to autograph books.