Loyal Metro Connection listeners may recall that back in December 2011, we brought you a story about D.C.-based actor, improvisationist and comedian Justin Purvis, who, as a teenager, was diagnosed with Choroideremia.
This rare genetic disease causes progressive loss of vision, almost exclusively in males. 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.
At the time, he cheekily described it like this: “When people ask me about it, I say it's ‘donut 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 Choroidermia — Justin took a 35-day road trip, so that he could see a whopping 13,000 miles of America, potentially for the last time. By the end of that trip, Tod’s vision was at 40 percent. Justin’s vision was down to 14 percent.
As the brothers traveled, a film crew tagged along, documenting the adventure. They released Driving Blind on Vimeo earlier this year.
Justin says preparing for the road trip, and filming it, was quite the endeavor, chock full of one of his favorite activities: planning.
“The one thing I’ve learned — and I think I learned this from my mother — is you plan for everything,” he says with a smile. “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 [tell people] we’re planning this trip: ‘If there’s anybody near these places, please let us know because we would love to come stay with you or interview you for the film.’”
But as Justin and Tod would soon learn, director Brian James Griffo had scheduled some surprises along the way — including a night hike in Texas’s Enchanted Rock State Natural Area, and a visit to a sensory deprivation tank in Portland, Ore.
“That was a surreal experience,” Justin says. “I’m an internal person. And so my worry was getting in to a place where I’m completely internal [and] just going to turn on myself.”
But instead, he says, he found the experience to be “mind-expanding.” His brother, on the other hand, seems to have been shaken by the whole thing. As he says in the film: “It brought me to this kind of place where… it’s just lonely and scary to just lose your vision. And it just kind of all made me think I don’t want to go blind.”
Justin suspects he was more comfortable with the experience because he’s “had a lot more time to deal with the vision loss. I was diagnosed when I was 14 and my brother was diagnosed when he was 37. He wasn’t diagnosed until a couple of years before we did the road trip.”
One of the recurring devices in Driving Blind involves the many people Justin and Tod encounter along the way. Each one is asked to respond to the question: “If you were going blind, what is the last thing you would want to see?”
The answers run the gamut, from “New Zealand” and “Alaska,” to “the sunset,” to the response that most resonates with Justin: “my children” and/or “my grandchildren.”
“Especially at this point in my life, as I’m starting to shift in to a more family-related want, the talk of seeing your children or seeing your grandchildren one more time really spoke to me,” Justin says. “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.
“I’m almost 38 now,” he continues. “And so a real possibility exists that come my 40s, I could lose the rest of it. And wanting to have a visual memory and actual memory of my child would be something that I would want to see.”
Justin says he takes hope from recent clinical trials conducted in the United Kingdom, where half-a-dozen people suffering from Choroideremia either had their vision-loss stop or reverse.
“They are very excited about these results,” he says. “They’re trying to get the clinical trials in the [United] States and in Canada. It’s just a time-consuming process and a financially-consuming process.”
Another device employed in the film is the use of quotations superimposed on the screen. One of them is from Henry David Thoreau: “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 want to be mentally, it can help to take that first step out,” Justin says. “When I was diagnosed with Choroideremia at 14, I was told I’ll be blind by the time I was 20. And then [I was] told in all likelihood it will be 40.
“It helped me to release some of the anger and stuff that I had as a kid because even though I know I’m still going blind, I’ve got more time. So I know to appreciate it.”
The DC Fiscal Policy Institute released its report card on D.C.'s efforts to help homeless families. Giving the city a "C" average, the card says "the District is taking steps" that may or may not result in any real change.
When you give to WAMU, your tax-deductible membership gift helps make possible award-winning programs such as Morning Edition, All Things Considered, The Diane Rehm Show, The Kojo Nnamdi Show, and other favorites.