Ventura Mayor Bill Fulton on the city's beachfront. He has retinitis… (Anne Cusack, Los Angeles…)
Bill Fulton — urban planner, urbane public speaker and mayor of Ventura — was starting to stumble. In dim meeting rooms, he had trouble reading. At the civic events he attended almost nightly, he left some people puzzled — even angered — when they extended their hands and he failed to grasp them.
"I can't always see it when someone wants to shake hands with me," he said. "When you're a politician, that's not good."
Fulton, a member of Ventura's City Council since 2003, will step down from office Monday and leave town next spring, largely as an adjustment to an eye disease that is slowly robbing him of his sight. It was diagnosed two years ago as retinitis pigmentosa, an inherited condition that has affected other members of his family.
Fulton, 56, is among 100,000 similarly afflicted Americans, including California political giant Willie Brown. As Assembly speaker, Brown for years quietly relied on aides to pass him notes about who was in the room just beyond his narrowed field of vision. Las Vegas mogul Steve Wynn also has RP, as it's called. In 2006, he was showing off a Picasso he had just sold for $139 million when he accidentally poked his elbow through it.
People with RP know the feeling — if not the cost — all too well. Attacking the retina, the disease eats away at peripheral vision and depth perception, making simple activities potentially risky.
After Fulton's diagnosis, some everyday pleasures were suddenly freighted with danger. An increasingly avid jogger, he started avoiding his favorite beachfront path, afraid he would trip or collide with an oncoming runner. Even on a treadmill at the gym, "I'd hang on in terror," he said, torn between focusing forward and looking straight down.
Over time, he steeled himself for outdoor runs. Now he jogs on the beachfront several times a week and plans to enter his first half-marathon later this month.
Driving is more problematic. Fulton often takes a bus to work and rides with colleagues to appointments he would have driven to alone. Sometimes his daughter Sara has helped out. There are times he has to get behind the wheel for short trips, he says, but they're increasingly rare — especially at night, when his vision is more limited.
"That puts a very significant limitation on an elected official," said Ventura City Manager Rick Cole. "We're not talking about [L.A.] Mayor [Antonio] Villaraigosa with his driver and his city car."
Those around Fulton have tried to adapt. On committees, members have learned they can't always get his attention in the customary way, by lifting a finger or raising an eyebrow. Instead they thrust out their hands and wave.
At a recent National League of Cities meeting in Phoenix, Fulton, a planning consultant who teaches at USC, took questions from the audience. But until a fellow panelist subtly alerted him, he didn't notice the hands that had gone up in one part of the room.
Even walking has been a learning experience, affording Fulton a new, sometimes painful perspective. On a familiar downtown street, he tripped over a sidewalk grate that was obvious to most pedestrians but not to those with impaired vision. Conferring with public works officials, he had it moved a few feet to a less traveled spot among the street's trees.
Americans with Disabilities Act "issues of accessibility are far more real to me," he said. "They're not an abstraction."
Fulton has known for years about the possibility of RP. During a routine checkup, an optometrist called his peripheral vision "surprisingly bad," and detailed tests confirmed Fulton's suspicion.
"It wasn't a surprise," he said, "but it was still shocking."
Fulton had his critics during his years as mayor. Several measures — including the closure of a library and the installation of parking meters — were seen by some as government overreach. But Fulton had no reluctance supporting them — or being equally open about his deteriorating vision.
His candor pleased family members such as nephew Eric Fulton, 33, who also has RP.
"For many years, I didn't want to think about it, figuring maybe if I ignore it, it will go away," said the younger Fulton, a corporate spokesman for a construction firm based in Bethesda, Md. "I think he has the wisdom of age and experience to know that doesn't fly."
Eric's mother is blind, and a cousin is also adjusting to RP.
Fulton announced in July he wouldn't seek reelection when his term was up this year. In a few months he will move to Washington, D.C., where he'll work for Smart Growth America, a think tank that advises cities and counties on development issues.
One advantage: He'll be near Eric and other relatives. Another, he said, is a mass transit system that will allow him to lead a normal life without driving.
Meanwhile, he'll keep taking prescribed vitamins and hoping for progress in RP research. No one can say whether or when his condition will get worse.
"I'm leaving not because I think I can't do the job but because this is an important part of my life I have to pay more attention to," he said. "I need to know how to adapt in a more systematic way. If my vision doesn't stabilize, at least my life will."