A Renaissance Man, Sightless

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Oct. 18, 2000 Wired.com News

A Renaissance Man, Sightless

by Jessie Seyfer

Gordon Gund spent his youth flying airplanes, playing hockey at Harvard, and pursuing a passion for photography.

He didn't stop when he began to go blind at the age of 25.

Gund, now 60, owns the Cleveland Cavaliers basketball team, co-owns the San Jose Sharks hockey team, runs several companies, and in his free time, skis and goes sportfishing.

He's also the founder of the Foundation Fighting Blindness, one of the largest private donors to eye research in the United States. Gund decided to start the foundation in 1971 after he went from faded nighttime-vision to complete blindness in just a couple of years.

Suffering from retinitis pigmentosa, a hereditary disease in which the retina slowly dies, has clearly not held him back. But learning to live without sight was an agonizing transition, one that forced him to redefine what was important in his life.

Gund speaks openly about this difficult time, when his desperate search for a cure led him to all manner of quack doctors, and when he "hit bottom," alone in Odessa, Ukraine, receiving painful and useless eye treatments at a Cold War-era hospital.

The experience made him realize a dire need for eye research in the United States, and, surprisingly, has not left him cynical. Gund still gets excited about new treatments for eye diseases, and is even considering retinal implants for himself, as soon as they're proven safe and effective.

Wired News spoke with Gund about his experience with retinitis pigmentosa, and why he thinks retinal implants are among the most exciting new technologies that may one day cure blindness.

Wired News: What was it like to be rapidly going blind at 25?

GG: What happened was I started having difficulty seeing at night, and began to run into things and have trouble driving. There were lots of embarrassing times. ... At first I didn't think much of it, but gradually I realized I finally had to stop driving, and stop flying. You sort of lose your steps of independence one step at a time, and that's the hardest part. I was diagnosed with RP in 1965. By 1970 I had lost my night vision, and in '71 my day vision started to close in. In six months my day vision went. It was like a tunnel of vision shrinking down and getting smaller and smaller, to nothing.

WN: What kinds of treatments did you seek?

GG: (My wife Lulie and I) tried every place. There was no research going on at the time, none that was promising. At one point I went to Russia to get a treatment that was advertised as working for people with RP. There were 10 or 12 daily injections, sometimes in my temples. ... My wife had to go back to care for our newborn son, and I sort of hit bottom there. I was in the Ukraine, in Odessa, in this old mansion, run down and decrepit, for six weeks. No one spoke English, I didn't speak Russian, and I couldn't see, so I had to get pretty basic with myself. As hard as that was, I attribute it to changing my life.

I realized I could still be effective with people, I could still interact with them, and still continue those relationships. There were other things I cared about, and blindness didn't mean the end of all things. My wife and I started the foundation, and it's been a gateway for us to turn this into something with a positive feeling to it, and the research is making extraordinary progress.

WN: Since your condition is hereditary, have any of your siblings or children displayed the symptoms of retinitis pigmentosa?

GG: No, because I have the recessive type, which means it's only expressed if two recessive genes -- from the mother and the father -- both end up in the child. That was apparently the case with me, and although there was a 25 percent chance of that happening with each of my brothers and sisters, it didn't. I was one of six, so I guess we're pretty lucky. None of my children have it either.

WN: After your experience with treatments that didn't work, do you find that you're at all cynical in the face of new "breakthroughs," which often don't pan out?

GG: There are a lot of people who offer a lot of so-called silver bullets and treatments, and many are well-intended, but some are not. People going through a loss of sight are very vulnerable and you have to be careful. I'd say I'm much more careful about jumping into things.

WN: Have you given up on your own eyes after all this time?

GG: I still harbor hope for myself. I think the retinal chip could help once its resolution is improved and it's proven safe. It's truly a step forward. I'm hopeful about it, but I think we're several years away from true success with it. There are also groups working on brain implants, which beam images directly to the (brain's vision centers). This may be of better use to people like me, whose retinal cells have partially or completely died. There's also some incredibly exciting gene therapies that are emerging. It's really a great time for research.

WN: Has blindness kept you from doing anything you wanted to do in life?

GG: Well, for 30 years now I haven't seen a sunset or a sunrise. I have color in my head all the time, and I think in color, but I don't get to refresh my knowledge of it. I miss seeing the faces of my children and family and I miss moving around totally independently. But when you realize you can't do anything about that, except wish you had it and spend a lot of time angry, to me that's not useful or enjoyable. I'd much rather do things that are productive and make a contribution. I have a tremendous life and partner -- my wife -- and a great family. Those are the things that matter to me.