MS. REBECCA SHEIR
Welcome back to "Metro Connection." I'm Rebecca Sheir, and we're calling today's show, "On the Mend," with stories about restoring, reviving and bouncing back. Now you may recall that back in December, 2011, we brought you a story about this guy.
MR. JUSTIN PURVIS
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. I definitely began to look at the world in a new way.
Back then, when we were chatting with D.C. based actor, improvisationist and comedian, Justin Purvis, he was talking quite literally. As a teenager, he was diagnosed with Choroideremia. That's a rare genetic disease that caused progressive loss of vision. Justin was down to about 15 percent vision when we met, able to see directly in front of him, but not much in the periphery.
When people ask me about it, I say it's doughnut vision, or bagel vision if you want to be healthy, I guess.
Since that story aired, Justin has been quite the busy man. He's performed in a bunch of plays around town, including his own one man show, "Hysterical Blindness." And, with his older brother, Tod, who also has Choroideremia, Justin took a 35-day road trip to see America, potentially for the last time. As the brothers traveled, a film crew tagged along, documenting the adventure. They released "Driving Blind" on Vimeo earlier this year.
All right. Ready for the grand adventure.
MR. TOD PURVIS
Yeah. It's just great to get started on it.
The stress of prepping for it, getting to this point -- I'm so much happier just being, like, officially being on the road. I figure, at the end of this, we'll either be really close, or we'll never talk to each other again.
This week, I met up with Justin, who now has 14 percent vision, and I asked how much he and his brother planned their 13,000 mile itinerary.
The one thing I've learned, and I think I learned this from my mother, is you plan for everything, and then that allows you to be ready for the unexpected. So, we had everything planned out. I had reached out through family, and reached out through the Choroideremia Research Foundation to just be like, we're planning this trip. If there's anybody near any of these places, please let us know, because we would love to come stay with you or interview you for the film.
But as I would come to find out, the director had surprises for us along the way, which involved us taking a day to do these things. All of them are in the film, because they were great, like...
Let me guess. Can I guess?
The sensory deprivation tank.
Yes. That was a surreal experience. And I talked a little bit about it beforehand with Steve, who was the guy who was driving us around Portland that day, about how I'm an internal person. I'm more internal than external, and so my worry was getting into a place where I'm completely internal, I'm just gonna turn on myself. But, I found it to be kind of mind expanding.
It's really interesting hearing you talk about it this way, because your brother, in the film, seems to have been pretty freaked out by the whole thing, and he related it to his vision loss, and how this was actually -- he was blind.
It brought me to this kind of place where it's just lonely and scary to lose your vision. And it just kind of all made me think I don't want to go blind, you know?
I've had a lot more time to deal with the vision loss, because I was diagnosed when I was 14. And my brother was diagnosed when he was 37. He wasn't diagnosed until a couple years before we did the road trip.
A very interesting device that the film uses is people you meet along the way are asked to answer the question, if you were going blind, what is the last thing you would want to see? And we hear a whole bunch of different answers.
I'm curious which, if any, especially resonated with you?
I think, for me, especially at this point in my life, as I'm starting to shift over towards a more family related want, the talk of seeing your children or seeing your grandchildren one last time, really spoke to me. Because I don't have any kids yet. I want children, and although the doctors say that my vision loss has plateaued at this point, the majority of people affected by Choroideremia have the most vision loss occur in their 40s. And I'm almost 38 now, and so a real possibility exists that it's plateaued now, but come my 40s, I could lose the rest of it.
And wanting to have the visual memory and the actual memory of my child would be something that I would want to see.
You're talking about, sort of, the path that your vision is taking. The man that your brother meets up with in Louisiana, he has Choroideremia. He's in his 50s. He's walking with a stick. And he says that he's confident that neither you nor your brother will go blind, that a cure, that treatment, you know, something will be found.
It's hard to relay what it was like for 40 years, to have no hope. And now I'm 54, and I have every confidence that you and your brother aren't gonna go blind.
In the news lately, over the last few months, in the United Kingdom, they did a clinical trial for people affected by Choroideremia. And six of the people -- it either stopped the progression or they gained some of their vision back. So, Artman, who was the guy that we knew, he was the former President of the Choroideremia Research Foundation, I think he's right. They have done the clinical trials. They are very excited about these results. They're trying to get the clinical trials started here in the States, and in Canada.
It's just a time consuming process and financially consuming process, which is why money made from the sales of the movie will go to the Choroideremia Research Foundation and to help with finding a cure.
Something else that we see throughout the film is the use of quotations. Sort of, the movie's almost divided into sections, chapters, passages punctuated by quotations by everyone from Kurt Cobain to Bob Dylan to the quote that I wanna talk about -- Henry David Thoreau. The quotation is, "It's not what you look at that matters; it's what you see."
I think quotes like that are great, because if you're in a place that you don't wanna be, mentally, it can help you to take that first step out. You know, when I was diagnosed with Choroideremia at 14, I was told I'll be blind by the time I was 20. And then, as I was re-diagnosed a few more times, and then told, all likelihood, it will be 40 that you'll lose your vision. It helped me to release some of the anger and stuff that I had from as a kid. Cause now I'm seeing -- even though I know I'm still going blind, I got more time, so I know to appreciate it.
Well, Justin Purvis, thank you so much for taking the time to talk with me today.
Thanks for having me.
You can see some pretty amazing images from "Driving Blind," and watch a full scene from the film on our website, metroconnection.org. And if you want to see Justin Purvis in person, he'll be in Faction of Fools production of "Pinocchio," opening March 8th. We have information about that on metroconnection.org too.
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