Trump Card

One of the odd things about parenthood, other than that it's the title of a Ron Howard film that was made into a TV series more than a decade later, is that it trumps nearly everything else in your life. This isn't a secret: if anything, movies underestimate how all-consuming the responsibility can be. But what the movies don't tell you is that, at a point, it just becomes a fact of your existence. I guess that's not quite dramatic enough for Hollywood, but it's humanity at work. You accept that your primary focus in life is no longer you, but your child, and you move on.

So, why the lack of posts in the last (gulp) three months? It's not really from a lack of material to write about: there have been several instances of my not-not-blindness colliding with the seeing world, and I'm hoping to catch up on some of those in the coming weeks. It's also not entirely because of the lack of time, although between taking care of my child and working mostly from home, I'm busier than I've ever been,

No, my silence here has much more to do with a sudden shift in self-identity. Namely, I think of myself as a dad before I think of myself as a blind guy now.

Part of this comes from people's reactions in stores: cashiers spend much more time trying to get my baby to smile than paying attention to the way I lean into the credit card machine, so I don't have to answer questions nearly as often. I certainly don't mind that.

But even without that, my focus has just changed from myself to someone else. It's a little like getting into a long-term relationship, but even then, you're sharing the spotlight with someone else. Having a child takes the spotlight off yourself almost completely. I can imagine some people being terrified of this, but I actually love it more than I can say.

Still, there's a lot to explore about navigating the world with my idiosyncratic eyes, baby-strapped-to-chest or not, and I plan to write about it. And thanks, everyone, for talking back to me!

(That's "talking back" in the good way, not the way my child will learn in a few years.)

The Height of Inaccessibility

Just to be clear: I have nothing against the wheelchair-bound. I admire anyone who can navigate the world on a set of wheels. That said, their needs and mine do sometimes get confused.

For instance, there was my freshman housing in college. Back then, you had to send in a questionnaire about your living habits and personality, which would supposedly help them choose the perfect roommate for you. I included a note on mine that mentioned that because of my vision, I had a reading device (my CCTV) that floods the room with light when you turn it on. Because of this, I asked that they make sure not to put me in a one-room double, since it would be unfair to my roommate. One-room doubles were rare, and I was perfectly happy to take the much more common two-room triple (as in, two rooms, three people). This seemed like a modest, reasonable request.

When I arrived at college, I found out that I had been assigned a single. Lots of people had requested singles, but I was not among them; I actually wanted a roommate, since I walked into college not knowing anyone. Why me? Why a single?

It took some digging, but eventually I found out that anyone who made a disability claim was automatically given a single in my dorm. Why? Because there was elevator access, and wheelchairs take up a lot of room. This meant that all of us who claimed to have disabilities, from paraplegia and MS to Stargardt's and, believe it or not, ADHD, got singles. This, despite that your average mildly-disabled college freshman would rather have people around, since social situations are among the greater challenges we tend to have. Oops.

I was reminded of this mix-up recently, when for the billionth time I had to duck down to get cash at an ATM. In a growing number of instances, when an ATM stands alone, it is at wheelchair-accessible height. I grant that this is a wonderful thing that allows the wheelchair-bound to gain access to cash on the road, but it also presents an issue for people like me: namely, the tall and partly blind. If the constant bending of my back lands me in a wheelchair, I will not be amused.

OK, maybe a little.

Congratulations?

So a few weeks ago, a found out that a couple of friends of mine are getting married. I knew this was in the cards, but with the whole new fatherhood thing, I had been out of the loop for a while, and it turned out the proposal had happened back in the early spring. Oops.

My response: write them a hasty email, as soon as possible, to simultaneously congratulate them and apologize for not having done so earlier, particularly those two or three instances that I had actually seen them since.

Well, I got the hasty part right: the email went out the next day. For some reason, though, I didn't get a response that day... or the day after... or a week after.

Had I offended them so much that they couldn't bear to respond? Were they both so busy with their professional and vocational lives that they had no time to check their email, let alone write back? Were they really getting married, or was I that victim of a subtly devious prank that had inadvertently pushed the marriage issue on this unsuspecting couple, leading them to break up, move out, and mutually end all communication?

I did get a reply, a little over a week later. To my relief, it was none of the above: instead, it was a good, old-fashioned eye goof. I had addressed the email to one member of the couple, but the other copy had gone to another friend with the same first name and first initial as the groom-to-be. When the bride-to-be suggested that she might run off with him instead, I informed her that he lived in Boston and was already married. My friend in Boston expressed surprise that he was getting married again. I told them both to call me blind.

Although it feels to me like a not-not-blind story, I have heard of this sort of thing happening to people with normal vision. People reveal trade secrets and private personal information when they type the wrong key and click "send" a little too quickly. This wasn't an issue with snail mail: it's a brand new, super-modern problem that we all seem to be prone to: just think of how often people get accidentally tagged in Facebook.

I guess it's something we all have to be wary of. You might end up marrying two of your friends, too. No good can come of that.

Happy Not-Not-Blind Father's Day

Since it seems that I'm not the only one out there, I just want to wish my fellow not-not-blind fathers a Happy Father's Day. I'm sure all three of you are having as much fun as I am.

At Least It Was Really Cheese... Right?

The eyes just love to see what they want to see.

The other day, while we were away, three o' clock rolled around before I realized that I hadn't had lunch yet. This is not something I like to have happen, and when it does, I usually go for the simplest, most easily attainable thing to eat. No exception here.

My thought process went something like this:
1. We had hot dogs and cheeseburgers last night.
2. There are hamburger buns left.
3. There is both American cheese and cheddar cheese as well.
4. There is Miracle Whip.
5. I will make a cheese sandwich.

Solid reasoning, of course. I mean, sure, the hamburger buns were made of highly processed, anything-but-nutritious white flour... and the same could be said about those "singles" (aka "cheese product," according to the label). Hey, the grated cheddar probably wasn't so hot, either. And then there's the Miracle Whip. But this is what happens when you're at someone else's place, and you don't have ready access to actual food.

Singles and cheese bag ready in hand, I opened up the bun bag to take one out. But to my surprise, the bun wasn't detaching the way it should. I could separate two of the buns from the others, but when it came to separating those two, it wasn't really happening. So I figured, "What the hey? I'll just rip them apart." And I did.

It was at this point that I looked down at my newly separated bun... or should I say, buns... and, more to the point, halves of buns. Instead of opening the hamburger bun bag, I had opened the hot dog buns. I had also ripped two perfectly good hot dog buns in half. I probably should have turned on a light in the first place.

For a moment, I contemplated putting the other halves of the buns back into the bag. After all, I wasn't going to eat them. I already had my equivalent of a hamburger bun. It then occurred to me that no one, not even I, could come up with a use for the remaining halves. So I made my awkward sandwich, put the other halves on my plate, and stared at them as I ate.

Did I learn a lesson from all this? I sure did. When preparing lunch, make sure that at least one thing you eat is neither white nor yellow. These colors do not occur in nature.

Blinded by the Night

I had a scare this weekend.

Back in high school, a friend of mine with RP (sort of the opposite of mine: tunnel vision instead of a blind spot) had to take special precautions at night. He had to stay in well-lit areas, for fear that darkness would blind him. His fears were well-founded: as a kid, he had gotten lost more than once in the dark. It's what we casually refer to as "night blindness," but it's anything but casual to those who have it.

On the flip side, I had always felt pretty confident about my night vision. True, I'm legally blind in both light and dark, but my vision at night had never been all that bad, relatively speaking. I could walk through a forested area with fully sighted friends, past sunset, and get around about as well as anyone else.

When asked how this was possible, doctors would give a pretty simple technical answer: my rods were affected by the Stargardt's, but not the cones. There's a lot of anatomy I'm skipping over here, but the bottom line is that rods pick up levels of light, and cones pick up color. At night, everyone's rods have to work harder to get by, so mine didn't handicap me as much as during the day.

Of course, I now have a slightly different diagnosis, a more severe form of Stargardt's. The new experts tell me that there is some damage to the cones, as well as o the rods. Now, not being a doctor myself, I can make all kinds of guesses about what this will mean, but even they don't have a great handle on it. So, as with other things, night blindness is now on the table. Hooray.

And that leads us to this weekend. We were staying with my partner's parents, in a small town where there isn't a lot of light at night. Once the outside porch light went out, our bedroom went completely dark: I couldn't even see my daughter's crib across the room. Of course, that always happens when the light first goes out, so no big deal.

Come the middle of the night, I tried to get up to get a glass of water. But as I looked around the room, I realized that I still couldn't really see anything. I got out of the bed: still nothing. I started taking slow, careful steps across the room, feeling for walls and the door, and hoping that I wouldn't crash into the crib. Luckily, my blind-man skills are pretty decent, and I made it to the partialy lit hallway without stepping on clothing or a baby.

When we woke up in the morning, I mentioned it to my partner, starting to explain that it might mean a new and fun problem with my vision. But before I got to that part, she responded that when she got up to feed the baby, she couldn't see the crib or anything else: she just guessed. Her vision, aside from a strong prescription, is fine. She has no night blindness, and neither do I; it was just freaking dark.

So... just a scary moment. No need to panic just yet. Funny how a change in prognosis can make you see things that aren't there... or not see things that are there... or see what you can't see... Whatever.

St. Louis Braille

Forgive me for a little misplaced nostalgia, but I miss the days of Braille. I have never been able to read it - I have no exceptional sense of touch, and I've always been able to see well enough to read at some level - but I love the idea of it.

One of my favorite podcasts, NPR's On the Media, did a great segment on the history, effects, and current state of Braille:



There's only one issue I have with the story, which is that it uses a misleading statistic. When they say that 10% of legally blind people today can read Braille, they're probably right: I'm an example of a typical case. But there are plenty of people like me who should never have learned it in the first place. Being legally blind does NOT mean, with today's technology, that you can't read text. There are plenty of options other than audiobooks. Just wanted to put that out there. That said, when Braille first got started, it was the only option.

Bottom line: before Braille, the blind were employable as panhandlers and oracles, and that was about it. Today people forget to make accommodations for us because they figure we can read with our hands. That's progress, right?

Stumbling Blindly in a New Desert

A little over a week ago, my daughter was born. Again, just to stay on topic, I won't go into the details of the birth here, but the short version is as follows:

1. Mama had no drugs, nerve blocks, or anything else.
2. Labor lasted a while.
3. The baby came out.
4. Everybody's happy and healthy.

I was able to see her head come out, even recognize a face - the midwife pointed me to the right place, and I was able to get in close enough to see it. Amazing, of course. Cutting the cord was pretty easy -- they practically put the scissors there for me -- but since they had already clamped the cord at either end, it was a little like being the mayor at a ribbon-cutting ceremony for a new shopping mall. (OK, maybe a bit more significance than that.)

There are a bunch of routines that parents go through several times a day: dressing, changing clothes, changing diapers, burping, and feeding, to name a few. Right now, the mom is in charge of feeding, and we take turns for the rest. Some tasks are easier than others for me: I always have a little doubt that I'm getting the diaper exactly right or cleaning every little nook and cranny that I should be, but I ask the fully-sighted people to check my work, and so far I'm doing all right and slowly improving.

As with anything, repetition helps. Just like learning an instrument or a part in a play, practice turns the difficult into the possible into the run-of-the-mill. At the moment, parenting feels possible, and I doubt that it will ever feel run-of-the-mill... but a few small aspects might.

It certainly helps to know that the blood-curdling screams that we're evolved to interpret as the sound of an abused child are, in fact, perfectly normal expressions of momentary dissatisfaction. Few of us start out this life wanting to be change, bathed, or momentarily denied our nourishment, and we are willing to cry bloody murder to express our rage. For that kind of scream, having limited vision doesn't really hurt: it's my average hearing that suffers.

Luckily, she's adorable.

Text Me Not

When text messaging first burst onto the scene, I thought, "Well, I'll never do that." I did briefly picture a strange parallel universe where mobile phone users, sick of tapping tiny keys, spoke into their phones that converted their voices into text messages, and then would send the text message to another phone which would, in turn, read the message aloud in a Robby-the-Robot voice. Luckily for society at large, we have not yet reached that level of laziness.

Still, texting has become one of the most common forms of communication, and those of us who live between the world of the visually perfect and the completely blind (who have Braille devices for texts) face a dilemma. On the one hand, we want to participate in the world as somewhat normal people, and normal people send out the occasional text. On the other hand, if we send out a text message (which is relatively easy), people might get the wrong idea and text us back. We're left with a tiny message on an electronic screen, and if we don't happen to have a CCTV or a friend who can read it, we're momentarily illiterate. Plus, these things are supposed to be private, right? What to do?

Well, for starters, there's technology. The problem is that technology for people like us moves very slowly. Many of my friends have made the perfectly logical assumption that my phone can read texts aloud, just like my PC at home reads documents and web pages. It does not. I'm not entirely sure such a product exists. If it does, please post something about it - I'd be suriosu to look into it. All I could fins on the web were people asking of such a product exists... a lot of them... which seems to indicate that there's a market.

The biggest surprise to me is that, of all companies, Apple seems to be ahead on this one. They've added their VoiceOver program to the iPhone, an they have a pretty good zoom too. I don't happen to own one, and it's hard to test it out in stores, but at least they're trying.

iPhone Vision Accessibility

For the moment, though, I am mostly texting-incapable. It's not high on my priority list, but it does seem like a pretty easy gap to fill. So what's the deal, phone makers? Low vision product manufacturers? Get on the ball. When you figure things out, send me a text.

Or not.

Waiting

Waiting is hard.

Waiting tables, for someone like me, is nearly impossible. I've done at in the friendly confines of a summer camp, as a counselor, for our biannual "fancy" dinner where we wait tables in character. Loads of fun. Definitely not the same as being an actual waiter.

Waiting for acceptances or, more often, rejections, is the toughest part of being a writer. You sit there, at the mercy of theater companies and fellowship committees, having put your heart and soul on paper and having no other power to convince them that you're worthy. The only part that makes the wait for college acceptances worse is that, in that case, you actually expect someone to say yes. Woe to he who expects.

And then, there's expecting... waiting for the expected. There are all kinds of divinations that go on on the birthing industry, all kinds of special warning signs that tell you when the baby is nine months, eight weeks, two days, or six hours away. They are all, to put it politely, bull-crap. No one knows. Two days could mean three weeks; six hours could mean twenty minutes. And when predictions are off by that kind of scale, they aren't predictions at all, but wild guesses.

We're left with the pure experience of waiting. Sitting, standing, doing dishes... taking walks for the sake of walks... looking for any and all events within shirt walking distance. Watching lots of TV. It's not at all easy. There's a part of me that would love to get work done, but the mind won't consent to that. It wants to wait, too. So that's what we'll do.

Waiting is hard. Luckily, eventually, it ends. What lies beyond waiting can be truly transformative, joyous, life-changing... and, sure, sometimes it's disappointing too. But at the very least, the end of waiting produces one wonderful feeling: relief.

How Far We've Come

I suspect I'm among the only people who has seen See No Evil, Hear No Evil. A shame.

Back in the glorious 1980's, Gene Wilder and Richard Pryor teamed up to make one buddy comedy after another. Most of them, including this one, were terribly written. The studios saw no need to put a lot of resources into writing and direction: they knew from Silver Streak that they had a winning combination of chemistry, timing, and racial harmony between the two comic geniuses. So, it seems as though they threw them into any wacky situation they could find, and slapped a title on it.

In this case, Wilder and Pryor took the emphasis off race and put it on disability: namely, deafness and blindness. You can imagine all the wacky antics that go with this. The plot of the movie fails to pull the antics together, nor to fill a single gaping hole in the story (of which there are many). But it does give us a young Kevin Spacey with a bad British accent, and the required beautiful female villain.

The two characters spend a lot of time shouting, "I'm deaf!" and "I'm blind!" Sometimes they interject a curse or two. And, while Pryor blind man is startlingly incompetent at mobility of any kind, Wilder's deaf man can read lips better than I can hear them. These are flaws, to be sure, but at the heart of each character there is... well, a heart. Each man has a passion, a sense of shame (or lack thereof), and a weakness. They are, in fact, fully developed characters, who happen to be missing one of the five senses.

In fact, while the story is about as thin as Kate Moss during Lent, the characters are three-dimensional. How nice. I'm not going to make one of those "better in the old days" arguments, mainly because there were plenty of one-dimensional characters in early film, but the 80's did present us with a lot of earnest, open characters. The current trend goes against that: irony does not lend itself to genuine feeling.

I still wouldn't give this movie more than a few stars, but it does hold a special place in my heart. It's one of those movies I saw over and over again when I was a kid, all within the first few years that my condition had popped up and was getting worse. I knew how unrealistic it was, even then, but it didn't matter. Watching it now -- I just saw it for the first time in more than ten years -- it still makes me laugh.

So I guess what I really need is a not-not-deaf buddy who can help me solve crimes.

Any Day Now

It could happen tomorrow, this weekend, or three weeks from now. We have a cradle, a changing table, and a glider chair (like a rocking chair, but awesomer) ready to go. So I'm sure that when the baby does come along, we'll be completely prepared and won't be surprised by anything.

It's standard practice to pack a bag ahead of time, with everything we'll need at the hospital. There's even a classic I Love Lucy episode about it. It's probably not so common to include several lists in big, huge print so that, when it comes time to call family, friends, and a car service, I'll actually be able to read the numbers.

It's also not so standard to warn your doula that she might have to read small print for us. A doula, for the uninitiaed, is a kind of birthing coach who gives you some useful tips, shows up at your house when labor is underway, and helps the pregnant woman (and her hapless partner) get through labor and delivery. Like midwives, they are a severely under-appreciated and valuable resource, especially if you're trying to get through this process without medication and intervention. We happened to find one we really like.

Doulas don't have any one set of responsibilities -- it depends on the woman, the couple, the hospital/birthing center/home, and the doula herself -- but it's rare that they have to do a lot of on-the-spot reading. However, in our case, one of us will be going through contractions every few minutes, and the other will be legally blind. So it seems fair to warn her that she'll have that added responsibility. I don't think she'll mind.

It's an exciting time, no question. I'm curious about how much of the actual birth I'll be able to see, and what the whole thing will look like. I promise not to put up any birth pictures -- believe me, unless you're someone who enjoys seeking them out, you don't want to see them -- but I'll try to keep a few mental images handy.

The Blind Succeeding the Blind

Our current, beleaguered governor is well known for being not-not-blind. But did you know that, were he to resign, his successor would also be one of us?

Richard Ravitch is best known for helping New York City out of its fiscal crisis in the 1970's and for cleaning up the state's transit system in the 80's. He also had a brief stint as the owner's rep during the scandalous Major League Baseball strike that canceled the 1994 World Series (which the Yankees surely would have won, by the way). Many also know him as a long-standing member of the state's business community, and he even ran for mayor back in 1988, when David Dinkins defeated him in the primary and went on to beat Rudy Giuliani, who later beat Dinkins... but let's stay on track, shall we?

Few New Yorkers are aware of the fact that Governor Paterson recently appointed Ravitch as the Lieutenant Governor of New York. (Paterson was himself the Lieutenant Governor; when he succeeded Spitzer, the position was left vacant.) This means that Ravitch would take over for Paterson. He wasn't elected, but then again, Paterson wasn't elected governor, and that's how the system works. Simple enough.

But even fewer New Yorkers are aware of the surprising link between Paterson and Ravitch: namely, their shared disability. Ravitch has suffered from adult-onset macular degeneration (the "old" version of my condition) since he turned 69, and his vision has been affected ever since. He was one of the lucky ones who got treated right away, but he no longer drives his own car, and he hires private aides to read the newspaper. Just like Paterson.

True, Ravitch spent most of his life as a fully sighted adult -- neither Paterson nor I can say that -- but it's still good to know that we'll still have representation in Albany. I was worried that there wouldn't be any blind people running things in the state government, and that the whole thing might become completely dysfunctional. Phew.

News of Ravitch's condition hasn't spread yet. It was reported today in the New York Herald Tribune, if you want to read more. (Sorry, can't find the link.) There's also speculation that Spitzer, Pataki, and the late Al Smith may have also couldn't see straight, but no evidence... yet.

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.

How to Give Birth, for Women and Men

I have generally avoided, if not shunned, the following phrase:

"We are pregnant!"

Pregnancy, as far as I am concerned, is an anatomical fact. Although there is now one documented case of a man being pregnant (no joke), there are no instances, to my knowledge, of two people being pregnant with the same child. If I ever did hear of such a thing, I would say, "Mazel tov!" and then proceed to get my brain thoroughly rinsed in hot water. As far as I am concerned, my partner is pregnant, and we are expecting.

Nonetheless, I am fully committed to being fully involved in every step of the pregnancy, and that means -- yes, Bill Cosby fans -- taking classes in Natural Child Birth.

The process is not exactly what sitcoms would lead you to think. Wisdom has shifted since the Cosby days, and no one tells you to breathe super-fast anymore. Nowadays, we call that. "hyperventilating." There are breathing exercises, but those are mostly to help the woman relax during labor. One of the midwives who teaches the class (yes, they're called midwives - I have nothing but good things to say about midwives) has a lot of great practical suggestions of what to do before and during labor, not to mention helping out with the whoel pregnancy discomfort thing. There's also some handy anatomical lecturing. Good thing, too: I was only good enough at biology to cram for the tests.

These classes also include some fuzzier stuff. "Stress can be harmful to the baby, so make sure you're living as stress-free as possible." In New York City? Good luck. "Your mood makes a big difference. Make sure you're in a good mood." So if I'm in a bad mood, I'm harming my baby? Shame on me! "Fix whatever you need to fix in your life, before the baby comes." Right, we'll get right on that.

The fact is, my partner and I are generally happy, well-adjusted people, so none of this really affects us... but if we weren't, I wonder how much of this advice would actually help. Telling people to feel better tends to only make them feel worse. That's why I never send Get Well cards: I always send cards that say, "You're sick! Sucks to be you. I feel great!" I'm a nice guy.

On the way back from the last class, my partner expressed her annoyance at the teacher. Why, I asked? She wondered why, despite that I had said early on that I couldn't see well, the teacher continually wrote and drew on an easel all the way across the room, where I could see nothing. This was true. The odd part was that I hadn't really thought about it.

If there's one thing I've picked up about being a not-not-blind father-to-be, it's that the second part trumps the first. I've been spending a lot less time thinking about my vision and how others perceive it, over the last several months. I spend a lot more time thinking about how my baby girl is going to see the world. ((Genetically speaking, she should be seeing through normal eyes for her entire life... I hope that's so.) My own vision has become delightfully secondary, for the moment.

Still, the vision does come up once in a while. And, now that I've been back to the experts, I have a lot more to talk about. But that's a story for another day.

Oh, Well

Poor Governor Paterson. I say that, not because he seems to be the victim of anything (other than the obvious bad timing), but rather because this job clearly isn't agreeing with him.

Of course, the Governor isn't very good at convincing anyone to do anything, and he may well be as incompetent at governing as everyone seems to be implying. But still, with every single political figure in New York basically cutting bait on him, you have to feel a little bad for the guy. Even his political enemies, in moments of candor, have to admit that he wouldn't cut school funding out of glee. The whole state's in trouble, and the political machine has found a very convenient fall guy. I'll pity the next governor too.

In the meantime, I wonder if the governor's shaky reign has had any effect on life for us blindish folks at large. It might be my imagination, but I've noticed less ignorance about the visually impaired. Fewer store clerks give me funny looks. I also haven't gone on any job interviews lately, so it's probably just a coincidence... but, hey, wouldn't it be nice to think that we got something out of an otherwise weak governorship?

Call me a victim of identity politics, but I still feel the urge to defend the guy once in a while. And say what you will about him, but he still can rattle off policy better than any New York politician with 20/20.