Gay Whetman stares now at pictures of her former husband and best friend, Mark, and feels the feelings she knew she’d one day feel as she snapped them off a few years ago. Those same feelings will move her to dutifully stand at a remote desert exchange station Friday night into the early hours of Saturday morning outside of Cedar City, handing cyclists snacks and drinks as they blur by. It’s perfectly symbolic, really, because life, as Whetman knows it, is a blur.
Mark is gone now, stolen away at the age of 49 from Gay and her four sons by the awful effects of ALS, a sickness better known as Lou Gehrig’s Disease. The thing is a monster that attacks human neurology, preventing the brain from communicating with the nerves and causing the muscles to break down. Often, it hits the extremities first, the hands and feet, and then takes aim at the body’s core, at muscles in the diaphragm, making it difficult for a victim to talk or breathe or live.
For Mark, who made his living by using his arms and hands to repair cars, the onslaught started straight in his throat. He began choking. Then he couldn’t easily eat or speak. Over a 20-month span, he faded from a strong, healthy 190-pound man to a ravaged patient who tipped the scale at 134 pounds. ALS is that kind of beast.
And Gay helped Mark fight it from beginning to end — July, 2008 to March, 2010. She’s fighting it, still, by working as a volunteer for the Saints to Sinners relay bike race, an annual ride from Salt Lake City to Las Vegas that includes nearly 400 racers who form 57 five- and 10-person teams to cover the distance, all in the name of defeating the disease that so dramatically has changed many of their lives and the lives of loved ones. Some of the riders are accomplished racers, some are novices, all of them care.
Gay and Mark’s story is unique in its details but not in its effect. Somebody is living a terrific life, somebody is diagnosed, somebody struggles to last as long as he or she can, somebody supports the afflicted to the best of his or her ability, somebody dies.
That’s the straight, hard truth. There is no cure for ALS — yet. But there is room for research and awareness and fund-raising and progression in the arduous battle. It’s the reason Steven and Jill Tew started the Saints to Sinners race four years ago, after Jill’s father, Ronald Frandsen, was diagnosed with the disease and later passed at age 62.
"The average life expectancy is three to five years after diagnosis," says Tew, a director at the Cardiovascular Center at Salt Lake City’s University Hospital. "It’s terminal. There is no cure. We’re trying to change that."
Mark Whetman’s diagnosis turbo-whirled his family in a direction it already was headed at a previously more gradual pace. Here’s the abbreviated version: After living in Kearns and having their four sons, Mark and Gay divorced in 2000. In subsequent years, they made the joint decision to attempt to bring the kids closer to one another and to each of them by spending more time together. They traveled to the kids’ athletic tournaments, they regularly visited with them, they grew close again. Not in a marital way, rather in a let’s-be-friends way.
"We became best friends," Gay says. "When Mark became ill, we all came together to help him. It was hard to watch him deteriorate. I went to the doctor’s office with him, gave him his food through a tube. We went to movies together. That was good because he couldn’t speak. We spent all our time together. On Sundays, we ate sundaes — because Mark could eat ice cream. He liked that."
Because time was short, Gay went nowhere without her camera — chronicling every small moment of happiness that came their way.
"I took pictures of everything — Mark with the kids, with his truck, with other family members. I took a thousand pictures. If it was anything that would mean something to him or us, I took that picture. What I learned was that it’s important to create family bonds and family memories. When I look at those pictures now, I’m grateful we had that time together. At the end, he left us on good terms. I learned people can forgive and come together again."
So, now, Gay — along with her youngest son, Brock — will take their position at the exchange station, handing out refreshment to riders a little past the midway point as they come and go in the night. The Saints to Sinners race begins at a park in Bluffdale early Friday morning and ends at Lake Las Vegas on Saturday. Cyclists will cover ground mostly on back roads, riding in shifts, rotating with team members, with support vehicles trailing behind.
The course is 516 miles long. Tew expects high temperatures along the route to reach 106 degrees, which is one of the reasons the 75 volunteers, like Gay and Brock Whetman, play such an important support role. The fastest teams will make the trip in less than 24 hours, the slowest in … well, a lot longer than that.
No matter how fast or slow, the 10-person teams pay registration fees of $1,400 and five-person teams pay $825. Riders also buy race cycling gear with proceeds, after covering event costs, going to the ALS Clinic at the University Hospital.
"It’s fun," Tew says. "And it’s for a good cause — raising funds and awareness to fight a disease that affects hundreds of thousands of people."
People like Mark and Gay Whetman.
Gordon Monson hosts "The Big Show" with Spence Checketts weekdays from 3-7 p.m. on 97.5 FM/1280 and 960 AM The Zone. Twitter: @GordonMonson.
Copyright 2014 The Salt Lake Tribune. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.