Mountain biker overcomes paralysis

A rare spinal stroke in seventh grade left Ben Edwards paralyzed and uncertain whether he would be able to walk again. Now, the Chattahoochee County High School graduate is a competitive collegiate cyclist with a compelling story of perseverance.

“It made me a stronger person,” said Ben, 19, a freshman at Kennesaw State University. “It helped build character. I appreciate things a lot more. … Everything we have can be taken so easily.”

Collapsed

Ben’s U.S. Army family was stationed in Hawaii during his middle school years. He enjoyed playing all kinds of sports, so he was used to injuries and falls and “just rubbing some dirt on it and walking it off,” he said.

But during a track meet May 11, 2010, while walking back to the bleachers after an event, his legs couldn’t support him anymore, and he collapsed.

“Well,” he thought, “this is a bit more serious.”

He didn’t have any symptoms or health problems before that day.

“Completely random,” he said.

Ben still couldn’t walk when he arrived at a hospital’s emergency room. Then he lost motor skills in his arms and hands.

“Everything got worse,” he said.

So he was transferred to a larger hospital, where he was placed in a neck brace and admitted to the intensive care unit. A week of tests narrowed this 13-year-old boy’s probable diagnosis to a medical term with nearly triple the number of letters as his age:

Fibrocartilaginous embolism myelopathy .

It’s caused by a piece of cartilage that gets stuck in a blood vessel and creates a clot.

“That shut down part of my spine,” he said.

The disease is so rare and fatal, it can be confirmed by only an autopsy. In fact, Ben said, doctors told him just about 30 cases have been documented since 1960 – “and I’m the only survivor of that type of stroke.”

The condition isn’t genetic, nothing increases or decreases someone’s chances of getting it, and it comes without warning.

“But I was still pretty calm,” he said. “I didn’t understand the gravity of it yet.”

Challenged

Paralyzed from the chest down, Ben had limited use of his arms but not his hands. Doctors gave a grim prognosis: He wouldn’t walk again and wouldn’t have control of any bodily functions.

Ben interpreted those words not as a life sentence but as a life challenge.

“I just had a peace about it,” he said. “I’m a pretty religious guy, and I just came to terms with it. Whatever is going to happen, God’s going to use me.”

And it started with his right big toe.

He wiggled it after about 10 days of trying. Alone in his hospital bed, he finally had a positive sign to show his medical team and his family, so he hollered for a nurse.

“They were freaking out and running in and thinking something really bad happened,” he recalled with a laugh. “I just wiggled my toe. My mom was out, but she came in and asked me to do it again, and I could.”

With such movement at that stage of his paralysis, Ben said doctors told him, his odds of walking again increased significantly.

“That felt amazing,” he said. “… I was going to fight and recover the best I can. This is my situation, and we’ll see where that takes me.”

First, it took him to another hospital.

Rehabbed

On May 20, 2010, Ben was medevaced to Seattle Children’s Hospital, where he did intensive rehabilitation for one month. He took his first post-paralysis steps, three of them, 21 days later.

“My mom was crying,” he said. “… I still had to walk with assistance, but just knowing I could do that was huge.”

By the time he returned home on June 18, he had progressed from a wheelchair to a walker and to completely unassisted.

“The nerves just kept re-firing,” he said. “… I could walk again. I could function. I was still learning how to do stuff, but they felt comfortable I could live on my own.”

Back in Hawaii, he was in physical therapy for 10 months and occupational therapy for another year. He finished his recovery in time for high school. A 50-mile hike proved it.

In July 2011, the summer before his ninth-grade year, he joined his Boy Scout troop for the hike and carried his own 50-pound backpack.

“That meant the world to me,” he said. “It was just surreal for somebody who was in my condition to be able to do this.”

Transferred

In 2012, Ben’s father, Lt. Col. Dominick Edwards, was transferred back to Fort Benning. It was a homecoming to the Columbus area because he had been stationed here from 2004-07, when Ben attended Dexter Elementary on post.

“We love it here,” Ben said. “We were very excited to come back.”

Ben’s mother, Alyssa Edwards, is the records clerk at Chattahoochee County High School, where his siblings attend. Josh is a senior; Danielle is a sophomore. The family worships at Wynnton United Methodist Church.

During his high school career at ChattCo, Ben was a member of the school’s three-time state champion academic decathlon team. He also was treasurer of his senior class. Although only one other student joined the mountain biking team he established, the lack of support didn’t deter him.

Motivated

Biking always has been part of Ben’s life. His parents competed on the same cycling team for the U.S. Military Academy at West Point. They graduated together in the class of 1995.

“Growing up, we watched the Tour de France instead of football,” Ben said with a smile. “I don’t even have a favorite football team.”

As a child, all his bike rides were on asphalt. Ben’s first mountain biking experience was during his sophomore year in high school, when his father invited to join some of his friends at Flat Rock Park in Columbus.

A time trial just so happened to be at Flat Rock then, and Ben didn’t need convincing to enter.

“I’m a competitor,” he said.

Ben finished last out of about 20 participants.

“That didn’t really sit well with me,” he said.

But instead of prompting him to quit, the result motivated him to do better.

The next year, as a junior, Ben teamed with his father in the two-man Southeastern Endurance Championships. The relay races are about 10 miles long. The winner is the team that completes the most laps in six hours. Ben and his dad finished fourth in the six-event series.

Ben was hooked.

“From that moment on,” he said, “I just wanted to race bikes.”

Buoyed

Ben likes mountain biking better than road cycling, he said, “because there’s obstacles all over the place. You can be fit and still not be the fastest mountain biker because you need extra skills. Not only do I have to be fit, strong and fast, but I have to be able to do that over rocks and roots and drops and all this stuff that’s constantly changing. So it’s more interesting.”

A broken collarbone from a training accident at Flat Rock ended his father’s competitive mountain biking, so Ben entered the solo events. He again finished fourth in the series.

Buoyed with confidence, Ben joined the Georgia Interscholastic Cycling League the fall of his senior year in 2014. He had raced against only adults and for 40-50 miles over six hours; the GICL events were against opponents his age for about 20 miles in approximately 90 minutes.

“The pace was a lot faster, and I was racing guys who had been at the national championships,” he said, “so it was like a complete eye opener.”

Ben finished seventh overall in the GICL’s four-event series, good enough to attract scholarship offers from King University in Bristol, Tenn., and Lees-McRae College in Banner Elk, N.C. He turned them down, however, because the financial aid packages weren’t enough to justify giving up staying in Georgia for the Hope Scholarship.

Now, Ben races with Kennesaw State’s club team. He works in the bike shop on campus and interns with the GICL.

Encouraged

During last fall’s mountain bike season, Ben raced in the second-best division, Collegiate B, and he was consistently in the top 10 out of 30 or 40 competitors.

“I wasn’t doing as well as I thought I could,” he said. “But for me, it was encouraging, because I take failure as ways to improve.”

He increased his training from eight to 10-plus hours per week.

Ben still is numb from his chest down and in his left leg.

“I can’t feel pain or temperature there, but I can feel touch,” he said.

Ben estimated his right hand has only 15 percent strength and 40 percent function. “There’s definitely still some issues, but I just adapt and move on,” he said.

Having had a spinal stroke and his current numbness don’t make him more at risk for injury than other cyclists, Ben said.

“If I were to break my leg,” he said, “I would notice and be able to not hurt myself any further.”

Determined

KSU Cycling Club co-captain Clay Wilderman, a sophomore, called Ben “very driven. He knows what he wants, and he’s very determined to get it.”

For example, Clay said, the Feb. 27 event at Auburn University was Ben’s first collegiate road race, and he finished 27^th out of 31 cyclists. But then in the time trial that day, he finished fifth out of 15 cyclists.

“He got the hang of it,” Clay said. “It was his second-ever road event time trial, and he knew what he needed to do against people who had been doing it for many months and years.”

That kind of spirit inspires Clay and the rest of the club, which has grown from two to eight members during the past year, he said.

“Ben wants us to have that same kind of drive on the bike or wherever we are in life,” Clay said.

Ben is majoring in business marketing. He hopes to work in the cycling industry. His dream job is to be a pro cyclist, he said, “but that’s not realistic, so I’d like to market for a big cycling company.”

Regardless, after finding meaning in the hardship he has overcome, Ben is grateful for this lesson:

“All of our negatives can be turned into positives,” he said. “All of our negatives are learning experiences if they enable us to enjoy our positives.”

This story was originally published April 23, 2016 at 1:00 PM with the headline "Mountain biker overcomes paralysis."