By Sarah Mansheim
Sitting on the sofa in his new home in downtown Lewisburg, Chally Erb grips a stylus that looks like an oversized Crayola crayon between his thumb and forefinger. He’s demonstrating how he can use it to activate his iPad, one of the new items the VA program has outfitted the Vietnam veteran with since he received his ALS diagnosis.
ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects the muscles of the human body, causing them to atrophy. Erb was first diagnosed in June of 2014 when he began having trouble moving his thumb and forefinger. Since then, the effects of the disease have spread to his arms, legs and feet, and Erb now walks with a cane or travels in a motorized wheelchair.
For a man who has spent his life as a clown and a performer, and an avid outdoorsman – stilt-walking, dancing, hunting, biking, kayaking, farming and white water rafting – the physical changes he is undergoing mirror the changes he and his wife, Beth White, are facing – a move to town from their Renick farm, a handicapped accessible van replacing his colorful pickup truck (readers will remember it – handpainted with swirls and handprints, the hood decorated with action figures and McDonald’s Happy Meal toys), and the need for assistance from a community that Erb has helped and entertained since he and his family moved to West Virginia in the 1970s.
When he and White moved to Lewisburg this month, they needed a wheelchair ramp for the front porch. Grant funding for ADA-compliant construction on their house is pending, but they couldn’t wait for the ramp. Enter S.J. Neathawk – Erb said he called up his friend Randy Luck at Neathawks and asked him if there was anything the company could do to assist them with buying the lumber and materials needed to build the ramp.
“Randy said ‘no problem, just get the materials list and bring it over,’” said Erb. Then, Erb’s friend, Renick contractor Philip Dailey, came to the house and did the measurements for the ramp, creating the materials list. Two days later, Erb said, Neathawks delivered the materials to their new house free of charge.
“I just really want to express my gratitude to Neathawks and to Randy,” said Erb.
Erb said that over the years, he has built two houses on his Renick farm property, and always bought his materials at Neathawks, where he and Luck became friends.
“Beth and I sent them a box of pastries from The Bakery on Court Street,” Erb said, “But I’d like everyone to know how good they were to us.”
The folks at Neathawks weren’t the only ones who gave Erb a hand on his new wheelchair ramp. Dailey came back with local carpenters Josh Lipton and Simon Lollis and built the ramp.
“They built it in a day or so,” said Erb. “It is excellent. We need to have Philip, Josh and Simon over for a big spaghetti dinner.”
Erb is also getting help from Patrick Driscoll, of Greenbrier Architectural Woodwork in Ronceverte. Erb and White’s new house is very small, with little room for furniture, so Driscoll is building them three beds with drawers underneath.
“Everyone’s been great,” he said.
• • •
“ALS is a mysterious disease,” said Erb. “There’s so much we don’t know about it. I’ve got a classic case,” he said about the way it spread from his arms to his legs and then feet. “I’m lucky though. It’s a slow progression.”
Before the onset of ALS, Erb was in excellent physical shape. An athlete and a dancer, Erb was a local fixture: clowning on stilts at area festivals, working out at the gym, rafting on the river and snowboarding down Snowshoe Mountain. He credits his earlier level of fitness with his relative health now.
“Before I got ALS, I had the body of a 40-year-old,” he said (Erb is 65). “Now, I can’t snowboard; I can’t bike or kayak or be a raft guide. I can’t run the tractor or do woodwork.”
The VA has assisted Erb with the purchase of his motorized wheelchair, his van and wheelchair lift and a walker.
“Beth and I are so grateful to the VA – and we’re really thankful to the taxpayers, because they’re the ones who are paying for it,” he said.
Erb’s other big helpers are his daughters, Deva Wagner and Lipara Winfield, and even more friends. Last summer, Erb’s friends took him on his last float down the river, and this past November, other friends helped him bag his last deer – a 9-point buck.
“My buddy Joe boosted me up in a tree stand and handed me my rifle, and this kid, Luke Dolan, made me a shooting stick that’s like a slingshot, so I could pull the trigger,” he said. Luke’s mother, Theresa Dolan, provides him with weekly massages at HealthSmart, which, Erb said, is crucial to his health.
“The circulation in your legs is reduced by a sedentary lifestyle,” he said. “You can get blood clots.”
Erb’s daughters recently helped him out in another way, and Erb is already looking to capitalize on the experience as a way to raise money for ALS research: they cut his hair. Erb hadn’t cut his hair since 1969, after he returned stateside from Vietnam; over the last couple of decades, he wore it in dreadlocks.
He said that when Wagner and Winfield cut his hair, they videoed it. Now, Wagner is editing the video, and when it is finished, she will share it on Facebook, where it will be passed around. In the video, Erb will challenge viewers to donate to the ALS Association, and when they do, he will send them one of his dreadlocks.
Erb said his doctor, Dr. Richard Bedlack, who works at the Durham, NC, VA hospital, and at Duke University, inspired him to keep helping people by entertaining them.
“He said to me, ‘You’ve been a performer your whole life – you can still do it and make a difference to raise funds for ALS research.’”
So, even though he’s hung up his stilts, Erb is working on a new clown costume that incorporates his wheelchair, and he plans to debut it at the Shanghai Parade on New Year’s Day. He’s also choreographing a duet he will perform with White at the Trillium spring concert in March.
“I’m going to be the face of ALS in West Virginia,” he said.
