RAGBRAI LI Route Announced on Jan. 27!

Steve Van Deest, a quadriplegic RAGBRAI rider, hand-cycled thousands of miles. But don't call him an inspiration.

  • 25 July, 2018
  • Courtney Crowder

JEFFERSON, Ia. — Steve Van Deest would hate to be remembered as an inspiration.

“No, you are!” was his common retort when someone called him a “hero” or told how uplifting it was to see him trucking along the Register’s Annual Great Bicycle Ride Across Iowa.

If he knew his younger sister Carla Leyen and I were sitting around talking about what a special guy he was, he’d be so angry, she tells me with a sort of cry-laugh. (There’d be a lot of cry-laughing during our late-night conversation in the shadow of Jefferson’s hairspray- fueled homage to 80s music.)

You see, all Van Deest ever wanted to be was normal, just another face in the crowd. As a C5 and C6 quadriplegic, he stuck out everywhere — except RAGBRAI.

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On this traveling parade full of all colors of the human experience, Van Deest and his sister could blend in, she said. And they mostly did. Save for when fully abled riders noticed that a man with only limited shoulder mobility was pushing away at a rate not much slower than them.

That’s when he got those “inspiration” comments.

A RAGBRAI mainstay, Van Deest and his sister rode their homemade four-wheeled bike at a time when hand cycles, Hase recumbents and specially made adaptive wheels didn’t mingle as comfortably as they do today with the road bikes that still dominate the ride. But in the wake of his pioneering treks, RAGBRAI has become more welcoming to riders of all abilities — even featuring a heavily promoted Adaptive Sports Iowa team of riders with all sorts of custom bikes and gear.

On Thursday, RAGBRAI will honor Van Deest, who died in September from heart and kidney failure, by dedicating that day’s ride to his memory. Leyen and her whole family will be on hand to give out buttons and koozies reading “Ride On Steve.”

“The road wasn’t always smooth,” the paraphernalia reads, “but we still enjoyed the ride.”

In the overnight town of Sigourney, they’ll bring out his four-wheeled cycle and tool around on it, letting people ride or take pictures with the bike that was so RAGBRAI famous, it appeared on the Register’s front page with a write-up by the Iowa boy, Chuck Offenburger.

As much as Van Deest changed RAGBRAI, the ride changed him, too. Giving him physical and emotional strength to push himself in other areas. He started to drive and took an enormous amount of pride in his Chevelle. He trained dairy cows, even taking the reins from his two nieces, Audrey Leyen and Hannah Starnes, when he felt like he could do a better job.

Maintaining his independence became has important as his faith, his family and his friends. And he was successful at it, staying fit and holding a job right up until the end of his life.

But, still, “he had to fight to be treated equally everywhere,” Leyen said.

Well, everywhere except RAGBRAI.

Carla Leeyan of Reinbeck poses for a portrait holding a plaque in memory of her late husband Steve in downtown Jefferson during the second day of RAGBRAI with on Monday, July 23, 2018.

Treks across Iowa

Van Deest and his two younger sisters grew up on a dairy farm in eastern Iowa, where he went to work in the family business after receiving a diploma from Maquoketa Valley High School.

In 1980, just less than two years out of high school, Van Deest was in a car with a handful of friends when a pickup truck came racing around a corner and slammed into them. Two of the passengers were killed, and Van Deest and another woman were paralyzed.

Ever hard-working, Van Deest pursued education after his accident, first getting an associate degree in agribusiness and then earning a bachelor’s in social work from the University of Northern Iowa.

“He prided himself on working,” Leyen said. “He loved, loved being a social worker.”

And he doted on his nieces and nephews, who he would let sit on his lap as he popped wheelies.

Losing the use of his body at age 19, he invented “silly little things” to make his life easier, Leyen said. He created a device that allowed him to dump the drainage bag connected to his catheter with the push of a button. He flattened all the forks in his house so he could hold them easier, and he rigged up a playing card holder to make games go smoother.

For Van Deest’s clan, RAGBRAI was always a family affair. Their mother, Carol Hoeweler, drove for the Dubuque Bike Coalition for years, and Leyen started riding in 1991.

In 1995, Van Deest bought his mobility bike — a three-wheeled streamlined wheelchair — at the Iowa State Fair and decided to do the 1996 tour across Iowa. Leyen planned to Rollerblade alongside next to him, figuring they’d do about 10 miles of each day.

“Steve wanted to do RAGBRAI, so we just did,” Leyen said. “That’s how things went: Steve wanted to do them and he figured out a way and we just all helped make it happen.”

Their father came up with an idea to stabilize the mobility bike, by removing the front wheel of Leyen’s bike and attaching it to the back of Steve’s chair.

Seated on their fused-together tandem contraption, the pair rode almost every mile , and continued to do so for 13 years in a row.

In 2008, Van Deest was having a hard time regulating his temperature and tired quicker than he had before. He left the route early that year.

As his wheelchair was loaded into the van, Leyen remembered thinking that the moment would mark his last year on RAGBRAI.

The next year, he told Leyen not to register him.

“He knew that part of his life was over,” she said. “I think we knew too, but it was still hard to recognize.”

About five years later, he got a bad bone infection, which, in hindsight was “the beginning of the end of a very slow process,” his niece Audrey Leyen said.

At the height of his health problems, the family emailed T.J. Juskiewicz, RAGBRAI’s director, and asked him to let the riders know about Van Deest’s hardships.

“Steve believed in the power of prayer,” Leyen said, “and he knew if anyone was going to pray, it would be his RAGBRAI family.”

RAGBRAI Day 4 photo: Ames to Newton

RAGBRAI Day 4 photo: Ames to Newton

What RAGBRAI is about

Grabbing a quick bite to eat, Mike Benge, a paraplegic who uses a hand cycle, said that RAGBRAI has become more welcome each of the seven years he’s participated. The route has handicap accessible Porta Potties for the first time this year, he offered.

“People will ride up to me and assume this is just a recumbent bike,” he said, “but when I say it’s not and I explain what it is, it opens up a whole new avenue for conversation.”

Under Juskiewicz, who has been with the ride for 15 years, RAGBRAI’s focus on welcoming riders of all abilities has grown. He gets calls regularly from people who have lost the use of some of their limbs and want to know if they will fit in on RAGBRAI.

“I say that more than any event in the cycling world, RAGBRAI welcomes everyone,” he said. “I have followed-up with many of the people who called to find out what they thought and they all say that not only are they coming back, but they are encouraging others to come out as well.”

Speaking at the September funeral, Juskiewicz remembered how the famously dry-humored Van Deest would take 10 to 12 hours to finish a day’s ride.

“The courage it took him to complete a simple 50-mile day and the effort he had to put in to be out there was tremendous,” Juskiewicz said. “I would get goosebumps watching him.”

Van Deest would have hated having his “courage” pointed out, but he did love RAGBRAI with unwavering vigor. His family thinks it was one of the focal points of his year that would keep him getting up every day.

“He hated getting off the bike at night,” Leyen said. “He’d want to keep riding.”

RAGBRAI’s not perfect, Audrey Leyen said; sometimes riders will get pushy about people going slow.

“But most of the time people are really willing to help,” she said. “With some of the tough hills, you’ll see people pushing each other up or holding people up and it’s just, like, that’s what RAGBRAI is about.”

Carla Leeyan of Reinbeck wears a pin in memory of her late husband Steve in downtown Jefferson during the second day of RAGBRAI with on Monday, July 23, 2018.

Enjoy the ride

One of the family’s favorite memories of Van Deest on RAGBRAI was coming out of Marshalltown (they forget the year) when it started to rain pretty hard and Leyen thought aloud about turning back. They were barely three blocks away from where they stayed the night before, but Van Deest argued.

“We made it this far,” Van Deest said in what everyone calls his trademark Eeyore voice, “we might as well keep going.”

Keep going he did through the last years of his life, which were like a rollercoaster, according to his family.

He was always ornery, his niece Hannah Starnes said, but he never complained about the overwhelming pain he experienced as his body began to fail.

Thursday’s memorial ride is going to be a mixed bag for the family. They haven’t exactly processed how to feel. They’re sad, obviously, but there’s a peace that Van Deest in a better place.

That day will undoubtedly be filled with memories of his RAGBRAI weeks: how he kept each year’s rider wristband displayed on his wheelchair; how with his limited mobility his hugs seem to sweep you up in close; and how, in his final days, he asked for the training rig he’d made to mimic his mobility bike be brought to the hospital.

It’s a dichotomous thing to remember someone for an event where they felt like they could finally fade into the chorus line. But Van Deest is an embodiment of the RAGBRAI spirit that friendships made on wheels can cross all barriers — physical or otherwise — and last a lifetime.

“He did RAGBRAI for the relationships and to have fun on the back of a bike in the middle of Iowa,” Leyen said. “When you strip everything else away, that’s what I think RAGBRAI is really about.”

I won’t call Van Deest an inspiration; he’d hate that.

But I will say he was a great reminder that even though our roads will never be smooth, we can still enjoy the ride.

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