By Guest Blogger Tod Purvis
If you knew you were going blind, what would be the last thing you would want to see before everything went dark? A loved one’s face, the ocean, a sunset, the Grand Canyon?
In 2010, my brother Justin and I tried to answer that question. We set out on a 40 day, 13,000 mile road trip around the continental United States. We did this not only to have a great adventure, but also because we’re going blind.
Both Justin and I have been diagnosed with a rare eye disease calledchoroideremia
. This degenerative disease, which affects only 6,000 people in the United States, slowly erodes sight by causing the physical decay of a critical part of the eye itself. Vision loss starts in the outer, or peripheral, vision and moves inward (which led us to map our route around the periphery of the continental U.S.). With no treatment and no cure, those affected by choroideremia face the possibility of total blindness at some future time. Currently, I have about 40 percent of my vision remaining, while Justin is more affected, with about 11 percent left.
We were incredibly fortunate to be joined on our journey by a three-man film crew who captured our every move during the trip. Their hard work and creative skill resulted in the creation of a documentary film, Driving Blind
One of the main reasons for having this adventure was to cram as much visual information into our eyes as we could while we were still able to see. But it turned into so much more. Not only did we get to see some of the most amazing sights in America, we met some incredible people as well – some were friends and family, though many were strangers we happened on in the course of any given day. And we learned something – when you have a rare disease and you start to share this with people, you learn that everybody has something. That everybody needs something. And that everybody is willing to give something.
I’d like to tell you about one of the experiences from our trip. On Day 19, we arrived in Portland, Ore. We met up with Steve, the friend of our director. Steve decided, since we had been driving so much, that he wanted to be our chauffeur. So we all climbed into his classic bio-diesel Mercedes Benz and took off.
Steve drove us around for about two hours, showing us all the sights in the city, which neither Justin or I had seen before. Finally, he asked us if we wanted to do something new and different, something that might open our eyes. When we agreed and asked what Steve had in mind, he would only say, “It’s a surprise.”
We pulled up to a house somewhere in suburban Portland. Steve led us inside, where we learned that we would be getting into a sensory deprivation tank. If you don’t know what that is, it’s a lightless, soundproof tank filled with saltwater that is warmed to body temperature. You get undressed, climb in the tank and float there in total darkness. The warm water gives a sensation of weightlessness, while the pitch-blackness…well, here’s what happened to me.
When I got in and closed the door of the tank, there was a little light in the back top of the tank that you were supposed to turn off when you were ready to start. So I laid back and began floating in the water and then reached up and turned off the light. I’m floating there in total darkness. Not too bad…yet. Then as I’m floating there, I start to think “This is what blindness is.” Darkness. Nothingness. And (I can admit this) I started to get really sad – and really scared. All I could think was, “Wow. I don’t want to go blind. This totally sucks!!”
By this point, I was starting to really freak out and I was about to call it quits and get out. And that’s when I saw it. Now remember – this is a totally black box with no lights on and no light can penetrate in from the outside. But I realized that, if I turned my head a certain way, I could see a tiny reflection off the plastic cover of the light in the ceiling of the tank. Enough to where I could actually reach up and touch it and reassure myself that it was there.
Now, for you to understand how amazing this was, you have to know more about choroideremia. It ruins your night vision as well as your peripheral vision. Lighting conditions that a normally sighted person might call dim are, for me, almost completely black, making places like restaurants and movie theaters visual minefields where I’m constantly afraid I’ll walk into something or someone. So the fact that I could see anything in this dark box thrilled me. I actually starting laughing and it brought me up out of that literal dark place where I had been. And that’s when I realized that it was going to be okay. Those are the little moments that we all need from time to time.
This happened on just one day out of 40, and the other days were just as amazing. Each one took us to a new place of incredible natural beauty – mountains, oceans, deserts, each more awe-inspiring than the last – or brought us into contact with a complete stranger who, upon hearing our story, wanted to share some unique local food or experience or place with us. It was the trip of a lifetime – a trip we only embarked on because of our disability.
And to the question, “What would I want to see before I go blind?” The answer is: Everything. I’m still taking it all in.
For more about our journey and our documentary, please visitwww.drivingblindfilm.com
. All proceeds from the film will go to theChoroideremia Research Foundation
Since finishing the trip, Tod moved back to Los Angeles and took the longer trip, with Brian, of creating and editing Driving Blind while also working full-time as an editor for television. Tod is currently working on
“Real Housewives of Beverly Hills.” He is now putting together a book version of the film,
Driving Blind: Behind the Wheel – A Photographic Journey into Blindness. Last year Tod took up snowboarding, and is looking forward to a different kind of journey when he marries the love of his life, Darci.