Second sight

This month’s Virginia Dare MS 150 bike tour wound through some of Virginia’s most scenic and historic countryside: along the banks of the James River, past stately colonial plantations, down to Williamsburg and back to Richmond.

A.C. Roane may not have been able to see it — but he could appreciate it just the same.

Roane’s view of the surroundings on his two-day charity ride was limited primarily to the blurry shapes and swatches of color that indicated the location of his cycling friends — a group known as the “Chain Gang” — on the road ahead of him.

For almost three decades, beginning shortly after Roane’s graduation from Virginia Tech, the hereditary disease retinitis pigmentosa (RP) has been stealing his sight. Today he is 50 and long ago quit driving a car. He views the world through a tunnel of fog that will only shrink as the disease progresses.

As if RP wasn’t enough to cope with, Roane also suffered a stroke in 1997 — at the age of 43.

“It was just a fluke thing,” he says. “Other than the RP, I was always healthy as a horse. I had low blood pressure, and no clue anything was wrong.”

The day of the stroke, Roane was upstairs in his bedroom preparing to take his daughter to a piano lesson, when the room started spinning violently. He was able to call to his daughter for help, and at the hospital learned that he had an extreme narrowing of the arteries at the back of his head.

Fortunately, the stoke damage was in a relatively unimportant, “forgiving” part of the brain that controls equilibrium, and within a year he had fully recovered. But the experience left its mark.

“I’ve always felt that life was really fragile,” says Roane, “but when this happened it really drove it home.

“It was like someone flipped a switch and the whole world turned upside down.”

So what, you might ask, is Roane doing on a two-day bike ride — and raising money for multiple sclerosis?

On the one-year anniversary of his stroke, Roane says, he felt the need to celebrate his recovery and challenge himself at the same time. He signed up for the Virginia Dare MS bike ride without knowing a single other participant or knowing anyone with MS (his sister-in-law has since been diagnosed). He simply enjoyed riding bikes, and had never gone a long distance.

“I wanted to do something to signify I was totally back,” he said.

The ‘chain gang’ is born
Although he had trained and felt physically fit, Roane began that first tour in 1998 with no small amount of trepidation.

“It’s a big group doing the ride, but it gets spread out over 75 miles [a day’s leg],” he observes. Roane has particular difficulty seeing his way on back roads with no center lines or side lines, and in transitions from sunlight to shadow. “I was afraid I would miss one of the [marker] arrows,” he chuckles, “and ride off into the sunset!”

Coming out of the first rest stop, however, he heard the familiar voice of neighbor Gordon Fox.

“Riding with anyone?” asked Fox, who was accompanied by a friend – and with that was born the “Chain Gang.”

For seven years now, Roane has ridden with the group through everything from torrential downpours to terrific heat – not to mention an obstacle course of hazards from potholes and dogs to gravel, glass and railroad tracks. All such obstacles are relayed to him verbally, and he usually manages to average about 17 mph over the two-day ride.

The camaraderie of riding with a group, Roane observes, is wonderful; but equally important is the feeling of accomplishment the ride gives him.

“With what I have, you need to step and out and stretch yourself a bit,” he says. “I’ve found that when you challenge yourself to do things, it gives you confidence. If you don’t stretch yourself, your world starts to get smaller and smaller.”

Although Roane gave up working in the insurance business years ago, he continues to thrive in his role of stay-home dad to daughters Natalie, a new J.R.Tucker H.S. grad, and Anne Carey, a rising freshman at Deep Run H.S.

He goes snow skiing and water skiing and ran the Ukrop’s 10K with his daughter in March. In the familiar environment of his Wellesley home, he gardens and often does the cooking for the girls (who particularly favor his spaghetti) and his wife Brenda.

He can be so proficient at these tasks, in fact, that a newcomer to the scene would never guess he has limited sight. But in unfamiliar surroundings his limitations become “painfully obvious,” says Roane — who adds that anyone who stumbles or says “excuse me” to inanimate objects as often as he does can’t help but develop the ability to laugh at himself.

‘A screeching halt’
His only bike-riding mishap had nothing to do with his lack of vision, either. In that race, two blocks from the finish line, Roane’s bike shoes got hung up in the pedals and he broke his wrist in the resulting fall.

Another freak “off-bike” accident on the way to a tour left riders unscathed, but cost Roane and his group their cycles. As the carload of bikers approached Fredericksburg on I-95, the straps of the bike rack gave way and the entire contents crashed to the pavement in a tangle.

“We brought I-95 to a screeching halt,” laughs Roane. “Those bikes looked like pretzels!” Although it ruined the ride for that weekend, he says with a shrug, the insurance paid for a new bike that he loves: a titanium model weighing a mere 17 pounds.

With a disease as progressive as his, Roane cherishes each year that he can continue to ride in the Virginia Dare, and holds out hope that researchers will find a way to arrest RP.

He never hesitates to participate in studies of the disease, such as the program that required him to make multiple trips to Johns Hopkins University in Maryland. Who knows? Given the right breakthrough, he might someday be able to enjoy the sight he misses most – his daughters’ faces as they grow up.

Meanwhile, Roane and the “Chain Gang” raise hefty amounts of cash for multiple sclerosis research – though he insists his former employer and perennial sponsor, Northwestern Mutual (John Van Der Hyde Agency), deserves much of the credit for the $400 in pledges he collected this year.

Obviously, it would take a lot more than near-blindness to make Roane miss a Virginia Dare ride. “I have so many wonderful friends,” he exclaims, as he savors his memories of the latest tour. “People are always willing to help. And what a wonderful job the MS Society does — the ride is so well-organized.

“Besides,” he laughs, “They treat us like celebrities!”

For information on the Va. Dare tour, or donating to the MS Society, visit http://www.nationalmssociety.org/var/home.
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Greater Richmond SCAN (Stop Child Abuse Now) will sponsor a screening of the documentary “Resilience: The Biology of Stress, and the Science of Hope” from 6 p.m. to 7:30 p.m. at St. Mary’s Hospital in Room 164. “Resilience,” the companion film to “Paper Tigers,” chronicles the birth of a new movement among pediatricians, therapists, educators and communities, who are using cutting-edge brain science to disrupt cycles of violence, addiction and disease. A short discussion will follow. Admission is free. To register, visit http://tinyurl.com/ResilienceScreening. Full text

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