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.

20 Channels and Nothing On

My mom was wondering why we had bought a big, flat-panel TV if we were only going to get basic broadcast channels.

"We don't watch that much TV," I automatically responded.

"Then why the huge TV? Why spend all that money for something you don't watch?"

Well, for one thing, it wasn't that much money. It was the store generic brand, which lacks a lot of the bells and whistles -- OK, all of them -- but it does work.

The larger point, of course, is the larger screen. I'd rather not spend every TV-watching second with my nose twelve inches from a display. I do like watching movies, and the TV I do watch, I'd like to be able to actually see. From a couch. A second-hand futon, in fact. I don't think that's ridiculous, absurd, or extravagant, even if we only have about fifteen legitimate, English-speaking channels.

That said, broadcast channels have a lot of dead time. And by dead time, I mean they fill a lot of their programming with stuff that will melt your brain. If I have to watch one more celebrity gossip show, I will have to serve up my noggin as a chopped liver substitute. Not the best of situations.

So, I made a deal with the cable company to get a few months of cheap "family" service, which includes Comedy Central and the Food Network. That's all we really need. I would pay for just those two channels if I could.

I still can't catch every visual gag on the Daily Show. No matter: I get to see most of it and hear it loud and clear until March, and that should keep me warm through a long, cold winter.

Can I Save the Life of a Child?

Yesterday, I set out to prove that even the visually impaired can learn CPR.

OK, really, I just thought I should do it for myself... no big points to make. But I was curious how it would go.

In preparation for becoming a dad, I decided to sign up for an infant/child CPR class. I had a couple of phone conversations with Red Cross people to let them know that they were getting a partly blind student, and unlike the folks at the tutoring agency, they did not act as though I was from another planet. One of them even told me that had had legally blind students before. Score.

Sure enough, when we went around and introduced ourselves (all five of us), no one blinked when I said I was partially blind. They did applaud when I said I would be a father in April. Oddly enough, the same people got into a discussion later where they (rightly) said that you need to take a test for everything in life, except becoming a parent. I don't know what accomplishment they were applauding... fertility? But it was nice to get some smiles.

The training itself was easy and surprisingly fun. As promised, the instructor read every relevant part of the booklet aloud -- that just seemed standard -- and trusted me to ask questions when I needed to. As it turns out, there's no aspect of CPR that I can't see: as long as you can tell if a chest is rising with breath, everything else involves the other senses. The whole process is pretty tactile, which is great for me. Plus, with such a small class, she was able to come over and correct me when I had something completely wrong... which she did just as much for the other students. It's good to feel normal now and then.

At the end, she was about to leave us to take our written, multiple-choice tests when I asked if I could take mine orally. I think she had just forgotten, and after a little jockeying around outside, someone arrived to very clearly and patiently read each question and the possible answers, and he even filled out the answer sheet for me.

It took the instructor about ten seconds to grade the exam. Now, I was always a straight-A student, so this was a matter of pride for me. She handed me my card, which mean I had gotten at least 80%... but that's a B-. I had to know.

"So how did I do?" I implored.

"You got one hundred percent."

Wow. I mean, sure, the answers were pretty obvious, and most of the time the answer was D (all/none of the above), but still... a 100% score is a rare thing.

I proudly signed and took my American Red Cross card, stating that I was certified to perform infant and child CPR and to use an AED machine. It was 2:43, and I hadn't eaten a thing since 9:00 in the morning... so I took my card to the closest place where I could both eat AND possibly put my life-saving training to the test:

McDonald's.

Remember Tests?

I went in for a tutoring job today. If you've ever randomly looked through job listings in New York, you've heard of this company: they're constantly hiring. They interview in groups, eight at a time, and they seem to run through candidates the way Homer Simpson downs donuts.

When I signed up for my group interview slot online, they sent me an email with the invitation to ask questions. This, I now realize, would have been an ideal time to forewarn them about my vision. I didn't.

I also failed to mention the blind thing when we went around the room, introducing ourselves and explaining why we were there. I have to interject, on this moment, that everyone (including myself) lied a little. This always happens in interviews, but rarely do you get a chance to hear eight people do it in a row. Everyone claimed an altruistic motive for wanting to work there, and while the job doesn't pay well, it does pay -- and in this economy, that's the main reason for anyone wanting to apply. OK, done; moving on.

After everyone told their tales, the staff member asked us to fill out a short survey. Oe page, pretty simple. Small type. She left the room just as I was taking out my monocular to try and fill it out quickly, but when she came back, I was the only one who wasn't done. I'm used to that from college and such, but it's been a while.

Next, she informed us that we could now turn over the stapled packet in front of us... which was a test. Reading. Math. Science. Tiny, tiny print.

"Start with the section you feel strongest at, so that you don't waste time needlessly," she instructed us. "You have until the clock reaches the three."

As I briefly contemplated the fact that I haven't taken a strictly-timed test since I was... well, really, I can't remember when that was, since my teachers gave me extra time since the fifth grade. So as I realized that, the staffer asked for my survey.

"Sure," I responded as I passed my quarter-finished survey, "but I think we're going to have a problem." I explained that I was partially blind, and I asked if I could possibly have some extra time.

She reacted as though I had just asked for the answers on the test -- not as though I was being malicious, but rather, that I had just asked her something completely unorthodox and unheard of. After a little stumbling and stuttering, she said that she would be outside if I needed her.

I spent about three minutes trying to read a single math problem before I picked up the test and walked outside. I spoke with the staffer for a little while, and then she turned to her boss, sitting right nearby, who offered to have a large-print version printed up the next time I came in. They were nice about it, and I apologized for not giving them the heads-up... because, hey, I didn't.

All told, they handled it pretty well, considering they clearly had never run into this issue before. That, in and of itself, does surprise me. Are there really no other partially blind people in New York who want to tutor? Have these folks never, over the course of college or high school or other jobs, encountered someone who couldn't read small print? Are there really that few of us? Or, do we (as a group) willfully avoid situations where someone might have to accomodate us? In retrospect, I've done that last one a lot.

I'll probably go back in for a more prepared interview (in that they'd be prepared for me), and we'll see whether they and I like each other enough to keep going with the process. In the meantime, I'm going to continue to recover from wisdom tooth surgery, which doesn't really care how blind I am. Ah, pain.

Why I've Been Slacking Off

If you're reading this, you either already know me or like to check up on painfully dormant blogs. In the first case, you probably know this; if not, um... surprise!

This April, I will find out, firsthand, what it's like to be a not-not-blind father.

In keeping with my tradition of not talking about my romantic life on the blog, I'll just take a moment to say that my partner in crime is going to be, to use a technical term, an awesome mom. No one worries about her ability to raise a kid. Frankly, no one worries about my abilities in that department, either. No one has even brought up the idea that being sort-of-blind might make it harder to be a parent.

There are plenty of challenges, of course. Maybe people don't mention them out of politeness, or out of fear that they might offend me. Well, I'm not afraid, and it seems well worth it to list a few potential problems I may run into:

-reading to the child at night
-teaching good eye contact without actually being able to do it myself
-communicating with a pre-verbal baby
-keeping my child safe
-and many others...

On the safety front, I'm doing what I can. I just booked an infant/child CPR class at the Red Cross, in the hopes that I'll never need to use the training. There was one line about disability on the website, basically saying that you need to contact them ahead of time, so I did. The person I spoke to told me that she would give my information to the instructors, and they would call me if they had any questions.

"Ask them to call me no matter what," I said. "There are all different kinds of blind, and there are some things I can do, and some things I'll need help with."

She was fine with that. We'll see if they actually call.

Anyway, that's the big news... As blind-related events come up, I'll actually make an effort to post them.

Oh, and about that visit to the experts: sorry. Really, Part 3 wasn't that interesting. The upshot is that, after spending six hours there, I still have to go back at some point. They need to take photos of my eyes. They say it won't take long. I haven't scheduled the appointment yet. I feel like I have better things to do.