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Racing With ALS

Doug Schneebeck has ridden in the 111-mile El Tour de Tucson bike race eight years in a row – twice alone on his road bike, five times on a tandem with his wife, Jean Bannon, and this year with Jean on a long, low recumbent tandem known as a TerraTrike.

Doug is a biking stud. In 2009, he was the top-ranked mountain biker in New Mexico, and his fastest time for the Tucson race was 4 hours and 32 minutes. You did the math right: that’s a pace of nearly 25 miles an hour over more than 100 miles.

In 2010, Doug was diagnosed with amyotrophic lateral sclerosis (commonly known as ALS), a degenerative brain disease that shuts down the ability to initiate and control muscle movement.

I featured Doug, then a commercial litigator at the Modrall law firm, in a column last year as he launched his own particular brand of ALS therapy, which was to keep acting like an athlete and to try to shed a little light on the disease through a personal blog.

I’ve kept up with the blog (www.osohigh.com) for the past year, because Doug is a terrific writer who frequently posts entertaining items about cracking his head open in a restroom in Prague or crashing into a bus in Arizona or the challenges of using a porta-potty in bike shorts when your hands don’t work.

And just last week, Doug dropped me an email to update me on life since we had last seen each other.

“As you would probably predict,” Doug wrote, “ALS has not paused. By the end of the race season, we were using Velcro to keep my hands on the bars because of my declining grip strength. Chewing and swallowing have become difficult so I have a feeding tube in my stomach. My hands have become pretty useless for operating electronic gadgets, so I am writing this e-mail with the help of a computer that tracks my eye movements across an on-screen keyboard.”

That’s what ALS does. One day, you can brush your teeth, and, the next day, someone else is doing it for you. One day, you can walk with help, then you’re in a wheelchair.

Despite all that, Doug qualified for the U.S. National Para-cycling Team on a tricked-out tricycle (so wobbly that his wife named it the Suicycle). Over the summer, he and Jean went to para-cycling events in Italy, the Czech Republic and Canada and, even though he didn’t make the team that competed at the Paralympics in London, he ended last season in first place in the world in his class.

So, I would have been shocked if it had been anyone but Doug telling me that, despite the motorized wheelchair and the feeding tube and the specially equipped SUV, he would be riding in the 111-mile Tour de Tucson one more time.

Doug and Jean did it this year on the TerraTrike, outfitted with slings to hold Doug’s arms as he sat in the rear seat and pedaled while Jean sat in the front and pedaled and steered.

El Tour de Tucson is a huge, chaotic race, and Doug and Jean were riding in a sea of fast bikes a few inches off the ground. For this, they needed a posse.

“Just a comment about friends,” Doug wrote in his blog not too long ago. “Unless something effed up like ALS happens to you, you’ll probably never know who they would be, but some of your friends (especially some you wouldn’t predict) will just show up in your life bearing the gift of time – time to help you with the things your hands won’t do anymore, time to re-create your bike into a machine you can ride, and time to just hang out or go out for a ride they don’t actually have time for.”

Some of those friends – John Blueher, Dan Porto, Paul Mohr and Nancy Fortin on their road bikes – assembled on a recent afternoon in advance of the Tucson race to go for a test run on the bosque trail, flanking Doug and Jean on the recumbent and looking out for hazards.

Blueher helped to wiggle Doug’s hands into his cycling gloves and fed him an energy drink. Mohr helped lower Doug from his wheelchair into his bike seat.

They gathered again on the night before they would leave for Tucson, drinking rum, smoking cigars and making last-minute adjustments to the recumbent trike to make it easier to push and pull it across the sandy riverbeds that are part of the Tucson course.

It was a chance for me to ask what you learn about friendship when one of your friends begins to need your help in ways you never could imagine.

Mohr choked up when he told me it’s Doug who is inspiring him to be a better athlete and to understand what it means to face adversity.

“To see that Doug has these goals and they are monstrous goals and helping make that happen is a real thrill,” Mohr said. “The man gets around in a power wheelchair, and he’s out racing a 111-mile course. It’s that drive. With a diagnosis like ALS where everybody’s saying you can’t do this and you can’t do that, the rebel in Doug is saying, To hell with that, I’ll have a life.”

Blueher, who has been riding with Doug several times a week since Doug got his tricycle and started competing in para-cycling, told me through tears that his experience with Doug has changed the way he thinks about disabilities.

“It just has taught me I guess that people are people. Doug’s just Doug. He’s not somebody with ALS; he’s just Doug.”

Jean told me that she and most of their friends think of their time spent helping Doug cycle and maneuver through his days as a privilege, not a chore. “It’s love of Doug,” Jean said. “That’s why we’re all doing it. And it changes all of us.”

Blueher said he’s honored to help. “I get to be with somebody who has a fantastic sense of humor and is so encouraged about living as much as he can every day,” he told me. “And most of us don’t do that. We take it for granted.”

One of Doug’s close friends likes to say that Doug – ever cheerful, funny and sharp and always pushing for a bigger adventure – is teaching all of his friends what it is to be a man.

In advance of the Tucson trip, Doug had written: “Saturday will be a celebration – maybe a very long one – of the role of friends and wheels in our lives. Why 111 miles? … I think the point is to attempt something that should not be possible. At this point in ALS, just breathing in and out can be a challenge. How lucky am I to still have the legs and lungs to make the whole enchilada El Tour a possibility? And the friends to make it happen.”

The crew finished El Tour de Tucson in 9 hours and 29 minutes this year, and Jean told me it was “an awesome, exhausting, delightful, bittersweet happy day.” The smiling pictures she texted me after the race attested to the happy part.

UpFront is a daily front-page news and opinion column. Comment directly to Leslie at 823-3914 or llinthicum@abqjournal.com. — This article appeared on page A1 of the Albuquerque Journal

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