COLUMBUS, Ga. — A rare spinal stroke in seventh grade left Ben Edwards paralyzed and uncertain whether he would be able to walk again. Now, he 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.”
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.
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. 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.”
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.
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.
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.”
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.
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.
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.
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. Ben finished last out of about 20 participants. 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.”
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.”
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.”
Now, Ben races with Kennesaw State’s club team. He works in the bike shop on campus and interns with the GICL.
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.”
About the Author
