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Pursuing Your Vision When You're Losing Your Sight

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Justin Purvis has the degenerative eye disease choroideremia, which can lead to total blindness. Purvis doesn't know whether he'll eventually go completely blind or not, but he's not taking any chances. With only 15 percent of his vision left, he's on a mission to watch his dreams come true, while he still can.
Justin Purvis has the degenerative eye disease choroideremia, which can lead to total blindness. Purvis doesn't know whether he'll eventually go completely blind or not, but he's not taking any chances. With only 15 percent of his vision left, he's on a mission to watch his dreams come true, while he still can.

Justin Purvis has the kind of stage presence that makes him instantly recognizable, even in a crowd. But if you're sitting in the audience, chances are, he won't recognize you. Purvis first discovered there was something wrong with his eyes at Boy Scout camp, when he was 12 or 13.

"They all ran off into the night to play capture the flag and I was very excited to play, and I ran out there," Purvis says. "I didn't get lost, but I realized I can't see anything. I don't know how these people are maneuvering in the dark."

After a few years, and countless hospital visits, doctors finally diagnosed him with Choroideremia, a degenerative eye disease that can lead to total blindness.

"I remember obviously feeling like the world was ending," he says. "When I talk about it with people, I say to them that was the point my childhood ended. I know I still had fun and did stupid childhood things. But I definitely began to look at the world in a new way."

Seeing the world differently

In fact, Purvis literally sees the world differently than most of us. Choroideremia is hereditary, linked to the X-chromosome. The disease usually affects males, and it's very rare. Researchers estimate only 6,000 men in the U.S. have it, and the rate of vision loss changes from person to person. At 35, Purvis has 15 percent of his eyesight left.

"I use the term when people ask me about it, it's donut vision," he says. "Or bagel vision if you want to be healthy. I have limited extreme peripheral vision. Centrally, I can see what's right in front of me. And then there's that section of the donut all the way around where it's a dead zone. I don't see the things that are there."

On good days, he can still see well enough to navigate city streets and perform with his improv group. Then there are his bad days.

"There will be times I'll be reading a book and my eyes will just stop focusing," he says. "I'll be looking at it and all of a sudden. Whoosh. I have to put down the book and look away, and then I have to try to look at a blank wall. There's like these floating dead spots. It's really annoying."

Dealing with the difficulties and differences

For years, Purvis tried to hide his disease.

"If I tripped over something, I would stand up immediately and do a gymnast pose to be like, 'A ha! I stuck the landing.' I would be just be the fool so you would forget that I stumbled over something or ran into somebody," he says.

And he developed little tricks to help him manage social situations.

"Every time I meet someone new, I look down at their waste to see if their hand is coming out. Or I've just started putting my hand out first to them. Like yahah! Or I just hug them. Makes it easier. And it's fun. Because it's a little awkward when you hug a stranger," he says.

Of course, Purvis says there are times when the difficulties of the disease - and the fear of his future - wear on him. "And I think in those times, I think to myself, I hope that I go to sleep and just wake up and I've lost my vision," he says. "Then I wouldn't have to deal with the waiting. It would be over. But then I go to sleep and wake up in the morning and I can see still. And I shake it off."

So these days, Purvis is doing his best to embrace his life - illness and all. Last year, he and his brother - who also suffers from Choroideremia - took a cross-country road trip to see America, while they still have some vision left. A couple of documentary filmmakers came along, and the film about their experiences - called Driving Blind - is now in production.

Then, a few months ago, Purvis quit his day job to concentrate on acting. He doesn't know if he'll go completely blind. But Purvis, who has watched his eyesight diminish to a tiny fraction, says performing makes him feel like he's 100 percent.

"Getting on stage," he says. "Having no idea what I'm doing, no idea what's about to come, and no preconceived notions of what I'm going to do, just trusting I'll make it somehow."

And in that way, life is a lot like improv. You can't control what you're given. But at least you can control what you make of it.

[Music: "In Your Eyes (instrumental)" by MPP from MPP]

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