One day in 1985, Ken Rietz was driving in Los Angeles. “I was calmly turning a corner on La Cienega Boulevard,” he says, “and almost ran over a family crossing the street.”
The public-relations executive and political-campaign manager realized that his eye disease, retinitis pigmentosa, was heading toward blindness.
“I didn’t hit anybody,” Rietz says. “But I never drove a car again.”
Retired after 16 years as a Burson-Marsteller executive, Rietz now runs his own public-relations firm, PSS Strategies. He has become nearly blind.
Rietz was born in Appleton, Wisconsin, and raised in Oshkosh. His father was a mail carrier, his mother a homemaker and part-time secretary. He attended the US Naval Academy but left after six months for medical reasons unrelated to vision. He then attended George Washington University but left during his senior year, in 1964, to work on Wilbur Renk’s campaign in Wisconsin to defeat incumbent senator William Proxmire.
Rietz has worked on more than a dozen races for House and Senate seats; he has also worked for the Republican National Committee and was a senior adviser for Fred Thompson’s recent presidential campaign.
His passion has become the Foundation Fighting Blindness. He is a member of its board of directors and helped establish For the Love of Sight, its annual Washington fundraiser. He has also served on the boards of the Federal City Council and the Fund for American Studies.
Rietz is married to Ursula Landsrath, “who takes care of all our dogs, our farm, and generally manages our life.” A son from a previous marriage, K.C., works in real estate in Fort Lauderdale.
Rietz lives in Delaplane, Virginia, 50 miles west of Washington. His office is in the basement of a Colonial-era church that was set for demolition before Rietz bought and restored it. It’s now registered with the Virginia Trust as a historic building.
He talked in the church’s basement about what he’s learned.
When did you find out you were going blind?
In 1976, I was living in California and was an active tennis player. I could still play fine, seeing the ball moving across the net, but I couldn’t see it lying on the court. Naturally, I felt kind of stupid and began to wonder what was happening.
I learned I had retinitis pigmentosa, or RP. It creates tunnel vision. So if I wasn’t looking directly at something, I couldn’t see it. I couldn’t find balls on the court because I had very little peripheral vision. A doctor tested my eyes, found I had good straight-ahead vision, and proclaimed that nothing was wrong.
I went to see two more doctors. Finally, one asked to look right into my eyes. He could see the RP when looking at my retinas. I had never heard of the disease.
He told me that it meant I would go blind. I was 35 years old, an athlete, active in every phase of life. I asked, “What can you do about it?”
He responded with those words a patient hates to hear: “There’s really nothing that can be done. Just go out and see as much of the world as you can while you can still see.”
I didn’t like that answer. Besides, it’s not correct. There’s a lot that can be done about the two diseases of the retina—retinitis pigmentosa, which destroys peripheral vision, and macular degeneration, which destroys central vision. That’s why I became active in the Foundation Fighting Blindness, whose research is helping to solve these diseases and give people back their sight.
Later, I learned that I’ve probably had RP my entire life. Things happened to me growing up that I couldn’t figure out at the time, but this explained it. For instance, I was a really good basketball player but couldn’t dribble. I just figured everybody saw the same way I did.
What was your emotional reaction when the doctor diagnosed the disease?
I felt that my life as I’d known it was coming to an end. And it was.
Yet back then I could still see, read, even play some tennis. Nine years later, around 1985, my life fundamentally changed. It was then that I lost my night vision and almost all of my peripheral vision. I couldn’t drive anymore.
I’m a pretty positive guy, so I began working on the problem. I got into the best eye clinic at UCLA and underwent a series of studies and examinations.
I wasn’t depressed long because I was taking action. At the Jules Stein Eye Institute, I became something of a guinea pig, volunteering for anything that had a chance of working. The researchers had me wear contact lenses with one colored lens to determine whether sunlight affected eyes with RP. Getting involved in such research helped me psychologically.
What was the biggest problem?
Moving around. I did fine in a meeting or living room, but if I had to move from one place to another, I’d trip over or run into things.
How did you get around LA?
By taxicab. I got to be known as the king of cabs. Later, when the public-relations company I owned merged into Burson-Marsteller, it provided a car and driver for me.
I excelled at faking it. Being in public relations and advertising, I figured that if people knew I couldn’t see, they’d be more reluctant to hire me.
All that changed 20 years ago when I met Ursula, now my wife. After a year with her, tripping over everything, I told her about my vision problem. She urged me to tell everyone.
Until then, I had told nobody. I just went through life stumbling and banging into things. People thought I was just awkward or sometimes rude. They’d come up to me at a cocktail party, and I wouldn’t even say hello. When someone extended his or her hand to shake, I ignored it because by then I’d lost all peripheral vision and couldn’t even see below my nose.
When Ursula urged me to start telling people, everything changed. Instead of considering me rude and awkward, they thought I was overcoming a big obstacle.