No Subtitles on Boradway

Since we're less than three weeks away from the due date, last night seemed like a great time to take a night out and go see a big Broadway show. We're both big Bernstein fans, so West Side Story seemed ideal.

I've been interested in seeing the current revival since I heard what they were doing with it. The show's original book writer (dialogue and story), Arthur Laurents, decided to go back and translate big chunks of the dialogue into Spanish. It makes sense: many of the characters are newly arrived Puerto Ricans who, for the most part, wouldn't speak English to each other.

What's more, the story of the musical is so well known and so simple that any audience should be able to follow it, in any language. Plus, Stephen Sondheim has spent most of his career regretting that he gave a young, uneducated girl the lyric, "I feel pretty and witty and gay." It sounds like something out of Cole Porter, not Hell's Kitchen.

So, heading into last night, I was really excited. It's not just the chance to see a show with great music and choreography: it's the chance to sit in an audience that would be at the same disadvantage that I have. There would be no subtitles or surtitles, like the ones at the opera where I first discovered that I couldn't read them. Here, the whole audience would have to listen and translate for themselves... except for the Spanish speakers, of course.

That's why I was a little disappointed to discover, a year after the show first opened, that they've decided to back-track on some of the Spanish. Now, they alternate verses with English and Spanish, so that the audience can hear the English first and understand what's happening. This was probably due to audiences complaining that they didn't understand what was going on. Even last night, with a good amount of linguistic hand-holding, a bunch of younger theatergoers complained that there was "so much Spanish, I didn't know what was going on." It's a little sad.

At the same time, it does validate my refusal to ever watch subtitled films. When people tell me that "you don't need to know what they're saying" in a Fellini film, I ask them to try watching one without subtitles and see if they still think that. Audiences crave dialogue they can understand; emotional expression isn't enough to get you through a story. SO, sure, since I know this show well enough, I didn't need the English; but for a kid who's never seen it before, it might be really frustrating.

I'd still highly recommend the production. It's some of the best dancing I've ever seen, and I can be a pretty harsh critic for a blind guy. I see just well enough to know how much energy, movement, precision, and coordination is happening. Sometimes, I use my little telescope/monocular to watch a couple at a time, and it was worth it here. Of course, the story is gripping, the characters are fun to root for/against, and the orchestra (spread across a pit and two house boxes) was freaking incredible. And, for the most part, the singing was pretty great. I wish they could do it without microphones, but we lost that battle years ago. Oh, and the set was fantastic.

Even if you can't quite see it all, a great musical gives you a lot to experience. The tiny visual details, and even the meaning of the words, are a tiny fraction of the experience.

Just Resign

As someone who was enthusiastic about the prospect of a legally blind governor, it pains me to say it. But, really, there's no way around it now.

I believe the current count is five: that's the number of Paterson staffers who have already resigned. They include two top state police officials and his press secretary. The governor apparently has as much trouble keeping his administration intact as he does keeping friends in Albany... which is to say, he doesn't really seem capable of either.

Again, it's too bad. The fact remains that Governor Paterson is one of the only people in state government who's taking a realistic look at our budget woes. On policy, he's still very sharp. On everything else, he's a lousy executive. Either that, or the entire state apparatus has decided to frame him that way in order to distract us from the gigantic deficit that will probably lead us to the same fate as California by the end of 2012. But that just seems unlikely.

Here's the bottom line: while he stays in office, Paterson is a big shiny object that keeps the tabloids mesmerized but doesn't actually accomplish anything. If he resigns, we may finally be able to get back to the budget, for real. With the current state legislature, that seems like a bit of a pipe dream, but we're allowed to dream. This is New York, where the lights will inspire ya.

Anyway, what was I saying? Oh, right: resign. Please. Maybe the next partly blind politician will be better at the politics.

Complications (and, no, not that kind... hopefully)

Ah, the perils of not being able to drive.

I've always touted the best advantage of living in New York City: not needing a car. At all. Even if you live in the outer boroughs, there's a good chance you can get by without ever having to step for into a personal automobile. Subways and buses take care of your every travel need.

In fact, it's often better not to have one. For example, say you happen to live through one of the snowiest winters in New York history, and your partner's car is conveniently parked on the street during each snowstorm. Well, hey: she doesn't have to get up to move the car for alternate-side-of-the-street parking, not the day after the blizzard: and that's great. (She's used to moving the car at least twice a week. Like most car-owning New Yorkers.)

No, but when you do want to get that car out of its parking spot, there's all this ice and snow that's blocking it in. The city plows have kindly offered to protect your car from... you. And being partially blind is not a good excuse for not digging out the car, especially when your partner happens to be "with child."

Still, if you do live in the boroughs, it's great to be able to jump in the car now and then and head to Ikea or, say, the independent pet shop on the other side of the park. Walking and subways won't quite take you everywhere, once you leave the island of Manhattan.

So, naturally, since we have a car, we should use it to get to the hospital's delivery room, when the big day comes. Right? Except, I can't do the driving. That's one problem. The other problem is that no one else around here -- none of our friends -- can drive. It's New York. Many have licenses, but few actually take them out, except to prove that they're old enough to drink. And you really shouldn't drink when you drive. Seriously. Don't.

So, we'll be calling a car service. We'll also be looking for a spot in a parking lot, where we can keep the car. 'Cause, after all, what if she goes into labor on a Monday night, and she's parked in a move-it-on-Tuesday-and-Friday-spot? I certainly can't move it. Family will want to be at the waiting room. Friends would drive the car into fire hydrants. The tetras are far too small, and fish are rarely granted licenses.

Very, very complicated. I don't know how drivers deal with all this. We should all be transported around by giant, floating jellyfish. And if you don't know what I'm talking about there, it's probably not worth explaining.

The Seven-Year Itch to Destroy

It turns out that if you don't visit a doctor for seven years, that doctor is well within his rights to destroy all evidence of your existence... at least, when it comes to his own files. For those of you with long-term, slowly-progressing diseases, this is a handy thing for you to keep in mind. I kinda wish I had known it.

When I was first diagnosed, I went to visit some researchers doing state-of-the-art stuff in Boston. It was an international crew of rogue retina enthusiasts. They were entertaining and only made me want to puke a couple of times. They played with lasers and radioactive dye.

Within five years, that practice had dissolved. I still went for follow-up visits, heading up to Boston every four or five years to see the guy who had been in charge. This, quirky, larger-than-life gentleman tried to speak as quickly as he thought, but it was usually a losing battle. He spoke many words to me but rarely, if ever, told me anything super-useful.

At the end of each visit, he would casually suggest that I come back in four or five years. If I felt like it. He didn't imply that it was all that important. From the usefulness o each visit, and the travel costs of getting to and from Boston, I didn't really disagree.

My last visit there was in the summer of 2002. And then, in February, I got the news about my change in prognosis. I asked the current experts if the old tests results might be helpful to them, and they were interested in seeing them.

Now, we get back to that seven-year issue. I tracked down that retina doctor, the one who had been so casual about my ever coming back. His office, it seems, has dutifully destroyed everything that had my name on it. They must have done so promptly at the seven-year mark. I called twice, and even brought up the fact that I had sent him a letter, at his office, in mid-2003. Nothing.

I called my current, regular ophthalmologist, hoping they had sent him my records back in the day. They sent him a letter. No hard data, no images: just a letter.

It's amazing to me that someone would engage in a field that involves long-term study, watching cases over years and decades, and still would have no clue about the importance o archives. Sure, the law allows you to get rid of your files after a while... but the law also allows banks to foreclose on people who have filed for medical bankruptcy. It allows men to walk out on their families and do nothing but pay child support. It doesn't make either one the right thing to do.

So much for my latest contribution to science. On the bright side, I now have a reason to hold on to all my bank statements from 1998. Someone might need them for science.

A New View of My Future Vision

Back when I saw the experts in September, they wanted to do just one more thing: take my picture. Really, they wanted a picture of my eyes, but same difference. It shouldn't have taken very long, but since I had been there for more than seven hours ,they really didn't want to keep me, and suggested that I just come back another time.

Well, I never really got around to calling them. With my condition not being very severe, I couldn't really tell if I was any use to them, and it's a decent commute. More to the point, they were so disorganized and inefficient about everything that I wasn't eager to go back.

So, needless to say, I was a little surprised to get a call from one of the research doctors. He asked if I could come back and go through a few more tests. And, yes, they would also take my picture.

The day I went back happened to be one of the big snow days, and they were a little surprised to see me.

"I don't live that far from the subway," I explained.

They looked at me blankly. I think they had forgotten that, while most of their patients come from all over the world, I come from Brooklyn.

The doctor assured me that they would be much more efficient this time. Apparently, I had been one of the first patients to visit this particular group, and they were still figuring out their process. That's what they told me, anyway. My impression was that the doctor himself had taken over a lot of the testing, just because he didn't really trust other people to do it.

True to the doctor's word, things went very smoothly, and after a lot of sitting in dim rooms, followed by trying not to blink with bright lights being shone in my face, I sat back and blinked. A lot.

The doctor looked at his screen and said, "Yes, this looks like classic Stargardt's."

I nodded. I've heard that before; no one has ever questioned my diagnosis, not since it came twenty years ago.

"Just out of curiosity," I said, "on the range of mild to severe among Stargardt's people, where do you think I fall?"

I had asked this question the last time, but he hadn't had a chance to answer it. This time, he did.

"Actually," he started, "I think you fall into the more severe category."

I'm not sure how I reacted in the moment. Experts in facial expressions and lying say that you give tiny little twitches to indicate how you feel about something, most of the time that you don't even realize yourself. I don't recall being shocked. I really should have been. But, then again, that's what "being in shock" means:: not really feeling anything at first.

The doctor explained that there are three general categories of my disease:
1. (mild) Only the very center of the vision is ever affected.
2. (moderate) The center and the rods (little bits that deal with light and darkness) are affected.
3. (severe) The center is affected, and much of the surrounding rods and cones eventually go as well.

I had always gotten the impression that I was in category 1, or possibly category 2. He felt that I was "somewhere between 2 and 3." Since Stargardt's patients generally don't change from one group to the other, this meant that I was in group 3. A few days later, he checked with the resident super-expert, who confirmed that I was indeed in that most severe category.

Group 3 is a pretty bad prognosis. The ultimate result, over time, is that I would no longer be independent: I'd need a guide dog. Now, I've always wanted a dog, but there's a difference between wanting one and needing one, and I'd rather not need one. I'd also rather be able to, um, see stuff.

After about half an hour of sitting in the dark (necessary for one of the tests), I ate the lunch I had brought (seemed like a good idea, after last time) and ate what felt a bit like comfort food. The doctor came in and let me know that we would have to wait a little while longer for the test, since there was a line.

"While you're here," I started, "what kind of progress should I expect? I mean, if I'm supposed to go functionally blind in forty years, what about the next ten or twenty?"

First, he assured me that I would not go completely blind, that I would still be able to perceive light and dark and some color. This was not all that reassuring; I'd like to have better vision than my future guide dog, if possible. But he also said that while he couldn't say what would happen in ten or twenty years, he could say that the disease tends to move slowly, and that my vision probably would not seem too different twenty years from now.

Now, in research terms, twenty years really is a long time. Unlike the empty assurances twenty years ago, when I was first diagnosed, there are some real possibilities for cures now. Actual studies are underway in gene therapy (which would halt the progress of the disease) and stem cell treatment (which might even reverse it). At the point that I'm at now, no one would want to experiment on my eyes because of the risk of actual blindness, but I would probably be a candidate down the road.

So, really, this hasn't changed my life too much. I had always expected the vision to get worse in old age, but I understood that to mean that I'd need magnification glasses. This will definitely be a bigger deal than that. But, hey, I've never been one to take the easy path.