The Search for Spot, Part 1

Thanks to a few lucky coincidences, I have stumbled upon a team of Stargardt's Disease experts. What's more, they're looking for research study participants. As long as they don't further blind me, I'm happy to oblige.

It took a little while to set up an appointment, but we made one for last Friday. I would try to describe the entire visit on one post, but you probably have better things to do with your life, like taking out the garbage or learning to tap-dance. So, I'm splitting this up hour by hour.


Part 1: Paperwork

On Thursday night, I had been having dinner with a friend when I mused, "Gee, wouldn't it be funny if they gave me a clipboard and asked me to fill out a form with tiny print?"

"Oh, that's ridiculous," she said. "At an eye doctor? If they knew you were sort of blind?"

"It happens everywhere I go," I replied, "but there's always a receptionist who, when I tell her I'm legally blind, helps me to fill it out. I dictate, and they write. But I'll bet you somebody does hand me a clipboard."

So, naturally, that's what I expected at the experts.

The next day, I arrived at the doctor's office exactly on time, at 12:30, gave my name and sat down. Not long after I arrived, one of the researchers came in, and the receptionists pointed to me and said, "he's here." It turns out, "he" wasn't me; they had been expecting a patient since 10 in the morning. But we quickly established who I was.

After several questions, four annoying eye drops, and a few simple eye tests, the researcher had every reason to think that (1) I have Stargardt's, (2) I can barely see the "E" on an eye chart, and (3) my prescription sunglasses don't make that much of a difference. It was at this point that someone informed her that the 10:00 patient had finally arrived, only three hours late, and we went back into the waiting room.

"OK, let's get you registered," she said in passing as she went to the desk.

"Ah," I thought, as I saw her grab a clipboard. "Brilliant. She's going to sit with me and let me dictate as she fills out whatever paperwork there is. Thank goodness, I'm in a place where people know exactly what my problem is."

She handed me the clipboard.

"So, can you fill this out?"

I sat there for what felt like an eternity but probably lasted a mere three seconds of shocked silence. I started: "Um..."

"It's three pages," she explained. "You only need to fill out the top part of the first page. For the next two pages, you have to circle yes or no for each of the [single-spaced, more than fifty] questions. Don't leave anything blank; you have to circle no if the answer is no."

My reply: "Um..."

"So, can you do it?"

"I..."

This is normally where I would explain that I'm legally blind. She had just conducted a test that told her that. She had just asked fifteen questions that made it abundantly clear how poor my vision was. Now, I do have my little monocular, which allows me to do some spot-reading of small text -- I've used it to fill out forms before -- but it had literally been years. Maybe she forgot? Maybe she has really, really bad short-term memory?

"Um," I tried again, "I could, maybe... Are you going to be doing anything for the next forty-five minutes? Because it would take about that long."

"Yes," she replied. Which was true. There was that patient who had arrived three hours late. Unlike me, who had arrived exactly on time.

"OK, I guess I can try it," I sheepishly sulked.

"Great, I'll check back in with you later." And off she went.

I think it may have only taken me 35 minutes to complete the 2.5 pages. Filling out a form with a monocular is a lot like riding a bike: you never forget how to do it, and it involves incredible frustration, bad posture, and eye strain. (It's been a while since I rode a bike, so I'm not sure that last part applies.)

She came back over just as I had finished, and she asked how I was doing.

"Actually, I'm done," I proudly reported.

"Good," she approved. "Here's more."

I filled out the second set of questions and signed one of the forms, but decided to leave the second one blank. I didn't feel like spot-reading five single-spaced pages about a research study, and I really didn't feel like signing my consent to something I hadn't read. I let her read it to me later.

That was the first 90 minutes or so. The guinea pig part came next.

All Museums Are the Same

...at least, it would seem that way if I didn't have friends to read the labels.

I spent a decent chunk of my childhood visiting the American Museum of Natural History, and I went back with my girlfriend yesterday, for the first time in almost ten years. One difference I noticed was that many of the labels are now printed on plastic, using easy-to-replace cards. Back in the day, the dinosaur names were set in stone. Literally. Which, in retrospect, made it difficult to update to the latest scientific information.

Even as a kid, when my vision was much better, I never really read the labels. I could just have easily been going to an art museum. The dioramas were my favorite part -- I went back to see them, and was relieved to find out that they were still intact -- but I still can't tell you exactly what they represent. They just look cool.

True, a museum staff goes to great lengths to arrange its exhibits in a form of narrative, so that you get the story of the species or artist without having to read a word. But, really, without those descriptions, the story usually isn't too important. Museums, to someone like myself, are about seeing cool stuff and wondering how they made it.

I will say, those stone labels were really big and easy to read. Maybe it's because fewer people had glasses back then?

More on Color

You might say that I'm not not colorblind. I wouldn't, but you might.

Yesterday, I mistook a co-worker's dark purple shirt for black. This doesn't happen too often, but it's just common enough to make me think that, while I'm definitely not colorblind, I do seem to be color-slow.

Early on, when my condition was being diagnosed, one of the tests they gave me was a color ordering test. Basically, I had to put a set of colored pegs in rainbow order. I had some time to complete it, and I probably leaned in pretty close to see the pegs, but I did put them in all but perfect order. The one mistake I made, according to the doctor, was one that any perfectly-sighted person might make as well.

Still, when asked to make a quick judgment about color, I make mistakes from time to time. Why?

Well, for one thing, when your brain is used to making stuff up (as mine is, to fill the gaps that the eye can't actually see), it can sometimes go a bit overboard. I've learned not to fully trust my eyes most of the time, especially when there's some kind of a life risk involved, like crossing a busy street. So, naturally, my brain will sometimes assign a color to a shirt that isn't actually there. It usually isn't too far off within the color spectrum, but sighted people get confused anyway.

The other issue is one a friend pointed out many years ago, having to do with peripheral vision. It turns out that in the periphery, the outer corners of your field of vision, everything is in black and white. The center of the vision is meant more for colors and details, and the periphery is meant for tracking movement. You know, kind of like when we were back in the forests, waiting for bears to attack. Not that we're not worried about that now... but I do live in New York City, so the risk is a bit lower.

Anyway, until your brain assigns a color to an object, your peripheral vision won't know what color it is, so the brain makes a guess. I use my periphery more than most people, so naturally, my brain guesses about color more than most. Thus, purple shirts off to the side of me look black.

I'm happy to say that the purple-shirt-wearing colleague was not offended. No one takes offense at being accused of wearing black. Some people might get offended at the reverse, but we can deal with homophobia in a future post... if we really have to.

Monkey See, Monkey See Color

Apparently, male monkeys are red-green colorblind. In this sense (and this alone), I do not resemble a monkey.

In recent research, scientists seem to have found a cure for colorblindness in monkeys. The method is gene therapy, which has often been floated as a possible cure for my condition. After about five months of gene therapy treatment, male monkeys were able to see the difference between red and green.

The adorable story is on NPR:

http://www.npr.org/templates/story/story.php?storyId=112897277&sc=emaf

The scientists in this story ask the same question that I have often asked of myself: namely, if you were to cure the physical eye, would the brain synapses still exist to process the image? In the case of the monkeys, the answer was a resounding "yes," despite the nay-sayers. I wonder if the same would happen for me.

Well, for the moment, this research is still monkey business. But, hey, in another five years... you never know.

Guest Post #1: Oouch

I got an email from my friend Andrew, who has the same vision impairment that I do, and we both thought it was worth sharing with everybody else. And as I took the short amount of time to post this, I found myself twisting and cracking my neck. Funny how life imitates descriptive prose.

Anyway, here it is:

I had the notion to peruse your blog this morning in search of confirmation that other not-so-sighted people might share my pain in a particular area. Notably, my neck. It is my suspicion that, unlike totally blind or fully-sighted people ("Sighty", as they are refereed to in my family), those harboring visual impairments also carry proportionately more stress between their shoulders. Craning my neck has been an occupational hazard that seems to slowly be taking a greater toll each time I bend over to read something with my magnifier or arc my chin toward the computer screen. The encumbrance of being legally blind is well-documented as far as the difficulties limited reading ability brings, but rarely is the physical stress of day-to-day low-vision operation acknowledged.

As a playwright, you might face the same thing. Even with easily adjustable screen enlargement applications, I find myself hunching toward the computer much of the time instead of increasing the magnification. It's natural, especially for those of us who grew up with more vision than we have now: when you can't quite see/read something, you get closer to it. You lean. You squint. With books and magazines (in the rare instance I attempt to interact with them such plane takeoffs, barbershops) I've gotten better at lifting them vertically to my face rather than lower my back to the flat surface they're on. But still, I'm choosing between extended elbow pain and the shadow of my head for the former or an awkward position and added pressure on my poor neck for the latter.

All of which is to say: ouch. Anyone else?

Back to wrestling with my instincts to lean toward the computer...

Don't let Sight get you down,

AB

Thanks, Andrew! Much obliged.

Not Not Blind Returns!

We're back! Welcome back to you, and I hope your summer was superb. Mine changed my entire freaking life... but we'll get to that in a future post. For now, here's a preview of what you can expect to read in the next few months:

Teaching Anecdotes

Camp was full of fun eye-sight-related stories. Plus, I will be working in a lot of different kinds of schools this year, and I expect that every group of kids will react differently to my "when I'm not looking at you, I'm looking at you" bit.

Medical Research

I'm planning to participate in real-life, actual research on my condition. As they do stuff to me, and as I learn new stuff, it will magically get posted right here.

Guest Entries

My old friend Andrew has already contributed a great insight into the experience of being partially blind -- watch for it in the next week or so -- and I hope it's the first of many. Others are welcome to contribute as well.

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There's a whole other category. It's a big, big deal. I don't want to give it away yet. Soon. I promise.

Dumb Observations (and Non-Observations)

You know... the stuff I normally post.


That's the table of contents. Chapters to follow, not in that order. Glad to be back.