Pursuing Your Vision When You're Losing Your Sight (Transcript) | WAMU 88.5 - American University Radio

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Pursuing Your Vision When You're Losing Your Sight

MS. REBECCA SHEIR

00:00:03
Sometimes, as with someone like Jordan Bruns, an experimental treatment works and a person can get back to life as more or less, you know, normal. But in other cases, a medical diagnosis might force someone to confront a very different future with a very different definition of normal. Case in point, D.C. resident and actor, Justin Purvis. A man on a mission to watch his dreams come true while he still. Jessica Gould brings us his story.

MS. JESSICA GOULD

00:00:31
Justin Purvis has the kind of stage presence that makes him instantly recognizable even in a crowd.

MS. JESSICA GOULD

00:00:45
But if you're sitting in the audience, chances are, he won't recognize you.

MS. JESSICA GOULD

00:00:54
Purvis first discovered there was something wrong with his eyes at Boy Scout camp when he was 12 or 13.

MR. JUSTIN PURVIS

00:00:59
They all ran off in the night to go play capture the flag and I ran out there, I didn't get lost, but I just realized that I can't see anything. I don't know how these people are maneuvering around in the dark.

GOULD

00:01:11
After a few years and countless hospital visits, doctors finally diagnosed him with Choroideremia, a degenerative eye disease that can lead to total blindness.

PURVIS

00:01:21
I remember obviously feeling that the world was ending. When I talk about it with people, I say to them, that was the point that my childhood ended, but I know that I still had fun and did stupid childhood things. But I definitely began to look at the world in a new way.

GOULD

00:01:35
In fact, Purvis literally sees the world different 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. The rate of vision loss changes from person to person. At 35, Purvis has 15 percent of his eyesight left.

PURVIS

00:01:58
I use the term, when people ask me about it, I say it's donut vision or bagel vision if you want to be healthy, I guess. I have limited extreme peripheral vision. Centrally, I can see what's right in front of me, but then there's that section of the donut, all the way around, where it's completely -- it's a dead zone.

GOULD

00:02:16
On good days, he can still see well enough to navigate city streets and perform with his improve group. Then there are his bad days.

PURVIS

00:02:24
There will be times when I'm reading a book and my eyes will just stop focusing and then all of a sudden the words just kind of just whoosh. And then I have to put down the book and walk away and, like, look at something very plain, like look at a white wall or something and try to get back to it. It's really annoying.

GOULD

00:02:44
The worst part, Purvis says, is there's nothing doctors can do about it.

PURVIS

00:02:49
What, what? Yeah, who called me? There you are, right there in my blind spot.

UNIDENTIFIED FEMALE 1

00:02:55
How have your eyes been doing?

PURVIS

00:02:58
I'm going blind. So, you know, but they don't seem to have changed much since the last time I was here.

1

00:03:05
What's the smallest line you can read here?

PURVIS

00:03:08
A-P-E-D.

GOULD

00:03:10
For years, Purvis tried to hide his disease.

PURVIS

00:03:13
If I tripped over something, I would stand up immediately and do like a gymnast pose to be like, aha, I stuck the landing. So I would just be the fool so you'd forget that I had stumbled over something or I'd run into somebody.

GOULD

00:03:26
And he developed little tricks to help him manage social situations.

PURVIS

00:03:30
Every time I meet somebody new, I look down at their waist to see if their hand is coming out or I've started, like, putting my hand out first to just beat them to it, to be like, yeah, or I'll just hug people. It's just easier and makes it fun because it's a little awkward when you just hug a stranger.

GOULD

00:03:45
Of course, Purvis says, there are times when the difficulties of his disease and the fear of his future wear on him.

PURVIS

00:03:52
I think in those times, I think to myself, I hope that I go to sleep and just wake up and have lost my vision. Like, I wouldn't have to deal with the waiting. It would be over and now I just have to deal with getting on with my life. But then I go to sleep, I wake up in the morning and I can see still and I shake it off.

GOULD

00:04:07
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 trip to see America while they still could. A couple of documentary filmmakers came along and the movie about their experience called "Driving Blind" is now in production. Then a few months ago, Purvis quit his day job to concentrate on acting and improve.

PURVIS

00:04:33
I think when you're rich, and back me up if any of you rich people in the house, you can do anything you want. It's almost like being pregnant, I feel like. Because when you're pregnant, you're like, I want pickles and ice cream now, and the husband is like, well, I just need leave, good perfect excuse.

GOULD

00:04:47
Purvis, who has watched his eyesight diminish to a tiny fraction, says performing makes him feel like he's 100 percent.

PURVIS

00:04:55
Getting on stage, having no idea what I'm doing, no idea what's about to come, just trusting that I'll make it somehow.

GOULD

00:05:02
And in that way, life is a lot like improve, you can't control what you're given but at least you can control what you make of it. I'm Jessica Gould.

SHEIR

00:05:16
To see photos of Justin Purvis performing and to learn more about Choroideremia and the search for a cure, visit our website, metroconnection.org.

SHEIR

00:05:44
Time now for a quick break. But when we get back, how birds adjusted their songs to compete with the buzz of the city and why noise can make a difference when it comes to the well being and survival of our feathered friends.

DR. PETER MARRA

00:05:56
What's interesting is, what are the species that don't occur here anymore that have already been impacted where their distribution is changed? And that's a much more -- when they're absent, it's a difficult thing to really understand.

SHEIR

00:06:06
That and more coming up on "Metro Connection," here on WAMU 88.5.
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