Keeping up the Fight
The following story appears in our September/October 2015 issue.
There is no cure for Amyotrophic Lateral Sclerosis. Researchers say life expectancy for those with ALS is about three to five years from the time of diagnosis, and only about 10 percent live longer than 10 years.
Those statistics don’t dim the optimism of Steve Smith ’87 H&HD, who was diagnosed with ALS in 2002. Today, at 51, he continues to live the best life he can with the help of his wife, Chie, and their two adult children, Dante and Jazmin. He says that resilience is a lesson he learned from his days at Penn State, where his skills at fullback helped the Nittany Lions to the 1986 national title.
“Coach Joe Paterno was a big part of why I am still living now,” Smith says via email (he breathes through a ventilator and is unable to speak). “He taught me if you don’t win every battle on the football field, you just keep fighting. He taught me that a four-yard gain is a good play, so I have been trying to get four to five yards every day of my life.”
But ALS has taken a toll. “He’s pretty much paralyzed,” says Chie Smith, who is with him most of the time in their suburban Dallas home. Smith is confined to bed or a wheelchair, and requires a feeding tube. The family prepares only organic food, processed in a blender. His ventilator requires a breathing tube in need of constant suctioning.
He passes his time watching TV, and occasionally the family will rent a van to accommodate all his equipment and take in a movie, one of his favorite activities. “The good movie was Jurassic World,” he says. And he relies on a computer to communicate, controlling it with facial twitches and eye movements. It allows him to “speak” to his family, type emails, even control home appliances and electronics. “It’s enabled him to just have some independence,” says Chie.
But the voice: it’s synthesized, doesn’t sound like him, and even cops an attitude at times. Like a male Siri speaking the right words, but maybe not using the proper tone or inflection. “The way it answers sometimes it sounds like it has a little bit of an attitude, so that can be kind of funny,” his wife says.
“At least it is male voice,” says Steve Smith. “Chie wanted to give me a female voice.”
B.J. Reyes, associate editor