In Their Own Words: Jim Bernardin, 27, Chicago, Illinois
Disease: Stargardt disease, the juvenile version of age-related macular degeneration, characterized, initially, by the loss of central vision.
Diagnosis: When I was 11,
a doctor noticed significant central-vision loss, which happens
with Stargardt. But for a year, I was passed around to doctors
who told my parents it could be neurological, could be a brain
tumor, could be psychological. Finally, my ophthalmologist, who
was trying to give me a new prescription, looked into my retina
and saw the tell-tale signs of Stargardt.
Vision: In college, I realized I wasn’t making eye contact with other people. That’s part of the social agreement: You have to check in, make eye contact, let people know you’re normal. And that’s something I was missing. I also wasn’t able to read normal textbooks; I had to order large-type books.
What happens is, information in the center of my eye is not being transferred to my brain. A lot of people think I see a black hole, but that’s not what it is. It’s sort of a continuum of my peripheral vision. If I were to put my hand in front of my face, and make a fist, my fist would completely disappear.
Living with Stargardt disease:For a person continuing to lose his vision, there wasn’t a big future in graphic-design work, which I’d been doing. So I had to switch gears, and I was always a theater and a comedy nerd. In Chicago, where I moved several years ago, there’s a huge outlet for writing, standup and improv—at venues like Second City. I’m doing all of that.
One thing that’s sometimes difficult is crossing the street. If I can’t see whether the crosswalk is green or red, I’ll stand there and wait for another person to come along, and cross when they cross. And if I’m going to a restaurant, beforehand I’ll look up the menu on the Internet, where I can blow it up as big as I want. I have good friends that would read me the menu, but I want to be self-reliant.
Helping Others: Lately, I’ve been able to be a line of support for others losing vision. I’ve done some Q-and-A's with groups and spoke with a bunch of young blind campers who came to Chicago. Second City put them in touch with me. I give my email out to a lot of people who have real-life questions pamphlets don't tend to cover. My blog has also brought a few random folks my way.
Talking to younger kids, in particular, is enriching for me. A lot of them are worried about how people think they're weird. "Well first of all," I tell them, "all the coolest people I know are weird in their own way, and, more importantly, being different and unique is going to pay dividends for you later. Own it! Rock on with your blind self!"
The Bernardin Family and FFB: A few years ago, I got a tattoo on my arm that says “Stargardt’s,” and I recently added to it two angel wings, each with one of my sister’s initials, because they’re my Stargardt’s angels. They’re twins, and when they were 18, and I was in college, they were also diagnosed. They’ve been there for me, and I’m there for them. I think the tattoo was a moment of ownership, of me thinking, “It’s not the best thing in the world to have, but it is unique, and you gotta figure out how to make this work for you.”
That’s where the Foundation comes in. My family’s active in raising awareness and funds for FFB, because we believe the research is far enough along that it’s possible there may be a treatment for us, even a cure. And the best way to get there is through the Foundation.