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.