Waterloo native’s book explores life with ALS

344
Chris and Denise Benyo after finishing the Boston Marathon in 2014. (submitted photo)

Denise Benyo wouldn’t go down easy. After being diagnosed with amyotrophic lateral sclerosis, she spent five grueling years fighting tooth and nail against the disease.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. There is no known cure, and the average life expectancy of a person with ALS is two to five years.

“Even though the disease won, she spent five plus years kicking ALS’ butt. She was one of the few that lasted that long,” Chris Benyo said.

She lost the battle last July, but her legacy continues with the release of his new book called “All in: Living, Not Dying with ALS: A Journey of Faith.”

“‘You have ALS. There is no cure or known treatment plan. This is a fatal disease. Life expectancy is two to five years. I’m sorry.’ These words were spoken to us in a dimly lit doctor’s office on Dec. 9, 2010, less than six months after we married,” reads an excerpt from the book. “A choice needed to be made at that moment.

“Die with ALS or Live with ALS and be All In. By the grace of God and Denise’s amazing faith we chose to live not die with ALS. This is a story of love, of survival, and running, the sport that united us and enables me to keep the memory of Denise alive.”

Waterloo native Chris Benyo, 52, is listed as the author of the book, but Denise is the inspiration behind the publication.

“I’d love to take credit for this, but this is what Denise wanted. She wanted to write a book together when she knew she was nearing the end. That is totally her legacy. She wanted to help people,” he said.

Additionally, Chris said that Denise wrote many blog posts regarding her struggles with the disease, which were compiled and added to the book. Chris said his role in the book was to respond to his wife’s entries.

“When you get diagnosed, I think a lot of people spend time thinking about the end — what that will look like. If the roles were reversed, I’m not sure I would’ve lived with the disease. I would feel like I have no purpose to be alive.”

For Denise, though, every day was another opportunity to serve someone else, even after the disease took over most every aspect of her life.

That accumulated to she and her husband participating in marathons to raise money for the Les Turner ALS Foundation. In 2014, Chris pushed his wife in a cart through the Boston Marathon and the New Jersey Marathon, and over time they would raise nearly $180,000.

Chris now lives in North Aurora and is a physical education teacher in the Naperville school district. For more information or to order his book, go to amazon.com/All-Living-Dying-Journey-Faith/dp/1640284036.

Chris will be in Waterloo for a book signing from 10 a.m. to 2 p.m. Oct. 21 at Morrison-Talbott Library, and will also sign copies that have already been purchased. As someone who cared for a person with ALS and saw what the disease does, Chris hopes the book will serve as a tool to those facing a similar challenge.

“I hope that’s what the book does — touch not only someone living with ALS, but also the person caring for someone with the disease,” he said.

Print Friendly, PDF & Email