By William Smith
Jerry Jackson, 78, has been blind most of his life.
He’s also a passionate cyclist who plans to complete the entire RAGBRAI route later this month. He’s done it several times before but noted this may be his last.
“Unless I decide to do it again when I’m 80,” he said with a grin and sincere intent.
It’s doubtful Jackson will be the oldest participant in the race. And he knows for sure he won’t be the only blind rider. He’s one of seven, among the 10,000-plus riders.
But he’s sure to be the oldest blind rider on the route. A true RAGBRAI rarity.
Jackson didn’t start his life blind. He gradually lost his vision over the years — the fallout from a rare genetic disease that has robbed Jackson’s two daughters of their sight as well.
From a sensory perspective, Jackson experiences RAGBRAI differently than most. But the vibe is the same – an intoxicating mix of camaraderie and excitement.
“Most people probably enjoy the scenery. I hear people all around us. Boom boxes and radios blasting away. You hear all kinds of music,” Jackson said.
Riding With A Friend
Equipped with a standard white walking cane, Jackson has no trouble getting around by himself. He works two jobs in Burlington — repairing bicycles at Bickel’s Cycling and Fitness and providing customer service at the Agency Street Hy-Vee.
Jackson was an avid cyclist before losing his vision and has ridden RAGBRAI several times. After becoming visually impaired, he started using a tandem bike, requiring a partner to pedal the other end.
This time around, Jackson will be riding with his friend and Burlington resident Doug Beck. They’ve ridden RAGBRAI on a tandem bicycle before and have developed an unstated synchronization. Their pedaling cadence melds together, which is important for a smooth ride on a tandem bike.
“We don’t have to talk while we’re riding,” Beck said. “You see other people on tandems talking a lot more, saying when they are going to shift.”
Beck does more than ride with Jackson. As Jackson’s designated captain, Beck acts as Jerry’s guiding arm even while walking. Jackson can traverse almost any terrain with his cane, but having an assistant describe the surroundings makes life easier.
“Not that you would hear Jerry complain. You never hear him complain,” Beck said.
Jackson laughs when he hears people say that.
“I guess I’m blessed. I don’t have to see a lot of things other people have to see,” he said, with a smile.
A Rare Condition
If Jackson ever lamented his lot in life, no one saw it.
“It’s not that bad,” the ever-affable Jackson said. “I think just about any other disability would be worse. I have no reason to complain about being blind. God gives me the strength to make the best of each day.”
Jackson was diagnosed with a rare disease called ADNIV — autosomal dominant neovascular inflammatory vitreoretinopathy. It is hereditary, affecting just a few families in Iowa and one family in Ohio.
The disease is so rare that Jackson and his family were featured in several publications — from the “Des Moines Register” to “People” magazine. In 2013, of the approximately 123 diagnosed cases in the U.S., 84 were in the Jackson family bloodline, dating back to the early 1800s.
“Now we have found it in hundreds of family members,” he said.
Both of his daughters, Shawnna Williamson and Shannon Jackson have been impacted by ADNIV. Jerry’s grandchildren and great-grandchildren have a 50 percent chance of inheriting the disease.
Jerry got one glimpse of one grandchild, Bobbi, shortly after an eye surgery. He vividly remembers every detail.
“This one time, she was sitting on my lap in the car going down the road, and the sun happened to hit her face, and I was looking that way. I really wasn’t focusing on her face, but I just happened to catch a glimpse,” he said.
An Unknown History
Jackson started losing vision in his early 20s when he worked for the now-defunct Leopold Desk Co.
“I was driving home from the desk company, and I started noticing spots floating around,” Jackson said. “I went to the doctor, and he had never seen anything like it before.”
He was unaware of the history of blindness in his family. His great-grandmother was known to be blind but was not alive when Jerry was born. While his mother lost her sight when she was in her 50s, and his grandmother lost her sight when she was in her 60s, neither was affected at the time Jerry experienced his problems.
Of course, Jackson had no idea the condition was hereditary. Neither did his doctors. It was shortly after Jerry experienced problems that a cousin and his mother had similar symptoms; it was concluded there likely was a genetic cause.
By 1973, Jackson’s vision had deteriorated to where he had to stop driving. He didn’t need someone to tell him.
“I couldn’t see far enough ahead to feel it was safe,” Jackson said.
He underwent several laser surgeries over the following years, but none of them were successful.
The disease caused Jackson’s retina to swell, restricting blood flow through the blood vessels. This caused abnormal blood vessels to grow in the retina, which Jackson described as similar to a clump of grapes. Those vessels were inherently weak, causing dangerous hemorrhaging inside his eyes.
Thus began the numerous laser surgeries, which burned Jackson’s retinas to the point of blindness. The upside was, that Jerry got to keep his eyes — even though his retinas look like a volcanic landscape. The treatment took his sight before the disease could.
Jackson still remembers the pain.
“They would shoot it with a laser to stop the bleeding,” Jackson said. “You would see this flash, and it would just burn.”
It was during this time that Jackson’s disease was named ADNIV. Physicians at the University of Iowa Hospitals and Clinics spent years drawing blood from Jackson’s family so they could study the disease and identify a genetic marker. Researchers even turn up at family reunions.
According to Richard Lewis, a research editor with the University of Iowa, ADNIV can be traced through five generations of Jacksons. Lewis created a family tree listing all of the family members who might have been affected.
“It was only recently known that it (ADNIV) is confined to certain families and is being passed down from one family member to another,” Lewis said.
Adapting and Thriving
Jerry has learned to use the sounds around him to compensate for his loss of vision. When he comes near a car or another object, the echoes from his cane have a different tone.
He can tell the difference between parking lots by the texture he feels under his cane. He also memorizes his route to work and other places through local landmarks, and he used to be able to discern when a traffic light changed just by the clicking noise it made.
Traffic lights in Burlington don’t make that sound anymore, but that doesn’t stop Jerry from crossing the street.
“If there’s traffic, I can tell which way it’s going, but I can’t tell if someone is turning,” he said.
By now, Jerry Jackson doesn’t think in terms of “sighted” and “unsighted,” save for the times his obvious condition enters the conversation.
“I’m lucky. I remember what things looked like. I remember colors and other things that people born with blindness don’t know,” he said.
After years of becoming more adept at repairing bicycles, Jackson started a bike ministry through his church — Burlington Baptist Church. The ministry makes a point of repairing bicycles for those who need them for work and other necessities.
“We’re so busy we can barely keep up. I’m running out of room,” Jackson said.
The bike ministry at Burlington Baptist Church isn’t interested in demographics. The used bicycles they repair and give away are equally distributed to everyone, often through local charitable organizations.
That includes children who need a way to school. Single mothers who need a way to work. Locals who have lost their driver’s license. Recently released inmates who don’t have easy access to transportation. Anyone who needs a hand.
“It’s not always the kids. It’s the older people too,” said bike ministry member Paul Fraise.
Jackson got the ministry rolling about eight years ago. He asked Burlington Baptist Church minister Kendall Adams what he thought of the idea.
Adams responded by asking the church for volunteers to help Jackson. Fraise and fellow church member Randy Simmons were two of the first to join, and they have been with the club ever since.
“The one thing we are having a hard time finding for the ministry is a used three-wheeled bike. We don’t see those as much anymore,” Jackson said.
The members meet in Jackson’s basement every week, toiling under bright white lights as they catch up with each other. Jackson, who uses the back half of the basement for his own classic bike collection, usually leads the project.
They usually don’t know who the bikes are going to, and they don’t care. However, occasionally, when they get a request — often for a child in need — the members get to see the results of their volunteer work in person.
It’s always wonderful.
“That’s just been a blessing,” Jackson said.