Shining Stargardt's

Q: So, What exactly is wrong with your eyes?

A: First of all, I like to think of myself as "differently sighted." (JK, LOL.)

I have what's commonly known as Stargardt's Disease. Okay, maybe not "commonly known," since barely anyone has ever heard of it... but there are other names, and that one happens to be easy to say (if not spell).

I wanted to link to the Wikipedia page to explain it, but it's not very helpful. SO here's how it's been explained to me:

If the eye were a camera (a traditional camera, not one of those stupid digital things), the retina would be the film. Light bounces off an object and travels through the rest of the eye to hit the retina to make the image.

The macula is the center of the retina, and it deals with everything in your central vision, including the most accurate stuff that you use to identify words, faces, and random twisted metal on the side of the road. While you use your peripheral (outer) vision to perceive a moving object coming from the side, you use the central vision to identify things.

SOme of us are lucky enough to have "macular degeneration," where the macula -- clearing house for all that useful central vision -- gets eaten away. Most people with macular degeneration get it when they're older, and the onset is pretty fast. In my case, Stargardt's, it happens before the age of 20 -- or, in my case, before the age of 10 -- and sticks around for the rest of your life.

One advantage of STargardt's, as opposed to the older and more common kind, is that the damage is often pretty limited. In my case, I just have a small blind spot. I've met other people with the same condition, and it seems to affect everyone a little differently; mine stopped its progress when I was about 12, and some people get progressively worse. So, actually, I'm pretty lucky.

At the moment, there's no treatment, and I don't really expect one. Most of us Sytargardt's people do pretty well; we're reasonably successful, often a little bookish (ironic, because we can't really read much), and unusually friendly. There doesn't seem to be any great urgency to find a cure, and I'll probably be OK as is for the next several decades Still, the thought does cross my mind of what it would be like to have normal sight. Now, what exactly does that mean, again?

We All Look Alike, Part 1

Last week, at a theater workshop, I complimented an actor for doing a great job in a scene. He stared at me for a moment, then said, "I know you."

The actor insisted that he had worked with me before. I agreed, we had both been at the workshop in the spring, but he remembered playing a part for me in a reading. He said the name of the director -- I didn't recognize it -- and recalled that it had happened ten years ago. I was a little embarrassed to admit that I would have been in high school at the time. Instead, I said that we would figure it out.

Yesterday, I pressed him on the matter, and I asked him the name of the director again. When I said that I didn't know the name, he thought for a moment, and then started to question himself. The playwright had been blind... and apparently, I looked just like him.

It never ceases to amaze me how often that kind of thing happens. There's always the temptation to say, "Hey, I'm the blind guy: I'm supposed to mix people up." But there are reasons for it, and I'll get into those in future stories of mistaken identity.

Why "not not"

I think I should start by explaining the title of this blog.

I was spending my second summer working in a camp in New Jersey when a fellow counselor admitted something to me. She and I had been neighbors the year before, and she had assumed, because I never made eye contact with her, that I thought she was ugly. I did not think she was ugly. In fact, I had often thought about how not ugly she was. But I understand what happened.

Thanks to a small blind spot, right in the middle of both eyes, I tend to look just to the right of people (or, from their perspective, the left) to see their faces at all. Even then, I can't see faces too well until I'm about eight or nine inches away. That can be uncomfortably close in American culture, unless you're dating.

So, it began to dawn on me that my beautiful counselor colleague probably wasn't the only one. Plenty of people mistake my lack of eye contact for rudeness, obliviousness, disgust, or just plain quirk. I probably possess all of those attributes, but not as often as it might appear. That's why I decided to take action.

The next summer, when we went around introducing ourselves, I proclaimed:

"My name is Jeremy, I'm from New York City, I teach theater, and I'm not blind, but I'm not not blind."

Since then, that's how I've introduced myself. People get the idea pretty quickly, and it also leads to questions. For instance:

• How did I get this way?
• Have I always been like this?
• Can I read? What can I see?
• What does it look like?
• Does being blind give you super-powers?

I'll be answering some of those in this blog (hint: if I gave away my super powers on the web, my enemies would come after me), but I'll also have some commentary about life and stuff that comes from my not-nearly-20/20 perspective.

Also, if you have any vision issues (or if you know someone who does), I would love to have other people post stuff here. Even if no one else reads this thing, I will. I'm fascinated by what I have to say (ahem).

And on we blindly stumble.