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.)
Monday, October 11, 2010
Wednesday, July 21, 2010
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.
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.
Thursday, June 24, 2010
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.
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.
Sunday, June 20, 2010
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.
Thursday, June 17, 2010
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.
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.
Wednesday, June 16, 2010
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.
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.
Friday, May 28, 2010
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?
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?
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