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.
Showing posts with label Stargardt's Disease. Show all posts
Showing posts with label Stargardt's Disease. Show all posts
Wednesday, June 16, 2010
Monday, March 1, 2010
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.
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.
Wednesday, October 21, 2009
The Search for Spot, Part 2
First of all, sorry to have been gone these long three weeks. I have been moving and settling into a new apartment and, in some ways, a new (awesome) life. More on that soon.
Also, welcome to my fellow Stargardt's victim, who commented on the last entry - and thanks for the referral to my fellow blind-ish blogger, Rich, at The Perfect Focus.
OK... on to the next part of my visit to the experts.
Part 2: Bright Lights
When I first started working on theater projects, I probably had the idea at some point that I would be in the spotlight... that everyone's eyes would be on me. Is it so far off to have a whole bunch of bright lights flashing on my eyes?
Yes, as anyone with a vision impairment knows, ophthalmologists love to do things that make you want to blink, but they require that you don't blink. And I fully expected that to be the case at the experts.
The first thing they asked me to do, they explained, was not required for the study but would be helpful to them. It would take about two hours.
"Sure," I said, "why not?" I mean, I was hoping to catch a train to Philadelphia at some point that night, but ti didn't really matter when.
This was the point at which they started to put wires around my face.
First, they wiped my ears with an alcoholic solution, then attached clips. Then, they wiped my forehead with a solution and tried several times to stick something to it. When it didn't hold, they used tape. (I had a zit for about a week after that, and I'm pretty sure it was from a researcher's thumb.) The wires came next.
With a wire running straight across my bottom eyelids, I asked them if it was all right that I was very uncomfortable.
"Well, we could have used an anesthetic, but that would only last a few minutes, and then you'd blink more."
Fine. The discomfort was fading anyway.
"OK," the researcher said," now I have to leave you in the dark for 45 minutes." This was so that my eyes could acclimate. "Do you have a favorite radio station?"
"No iPod?" I begged.
"No, they give off too much light."
Reasonable enough. "OK, put on 93.9 FM."
That's WNYC, the local NPR station. As she flipped through the dial, I recognized it immediately.. It was my least favorite show - the special guest was a "cactus cabaret" singer from France - but it was mostly music that didn't offend me. All good.
So, for the next fifteen minutes or so, I sat still listening to French cactus cabaret in the dark. At one point, the researcher came back in with a red-light flashlight.
"I forgot to dilate your eyes," she unapologetically stated. "It's harder int eh dark." And, sure enough, she missed the second eye-drop and had to try again.
I still had another twenty-five minutes in the dark, during which the radio program ended.
The new one was RadioLab, one of my favorites. Hooray!
This episode was about parasites. Boo.
Worse yet, it started with a blow-by-blow description of Ridley Scott's Alien, one of the scariest films of all time. And I got to hear it recounted to me in the dark, complete with audio of the creepiest scenes. Lucky me.
By the time the researchers came back, I was basically numb to humanity. Which was a good thing, because that's when they turned on the machine and started flashing thousands of blinking bright lights at me, all the while instructing me to try not to blink.
The blinking bright lights went on for a while. I don't know how long. I had lost all sense of time.
"OK," said the researcher," good job."
Whew. It was over.
"Now I need you to just sit with your eyes facing this light for the next half-hour. To acclimate."
Right... well, in this case, at least I didn't have to sit all that still to keep my chin on a chin-rest.
"Ready?"
I faced the light.
"See you in half-an-hour."
"Um..." I started. But it was too late. She had turned off the radio, and I was left to face a bright light, in silence, for the next thirty minutes. That's when I started singing to myself.
And that's where we'll leave it until next time.
Also, welcome to my fellow Stargardt's victim, who commented on the last entry - and thanks for the referral to my fellow blind-ish blogger, Rich, at The Perfect Focus.
OK... on to the next part of my visit to the experts.
Part 2: Bright Lights
When I first started working on theater projects, I probably had the idea at some point that I would be in the spotlight... that everyone's eyes would be on me. Is it so far off to have a whole bunch of bright lights flashing on my eyes?
Yes, as anyone with a vision impairment knows, ophthalmologists love to do things that make you want to blink, but they require that you don't blink. And I fully expected that to be the case at the experts.
The first thing they asked me to do, they explained, was not required for the study but would be helpful to them. It would take about two hours.
"Sure," I said, "why not?" I mean, I was hoping to catch a train to Philadelphia at some point that night, but ti didn't really matter when.
This was the point at which they started to put wires around my face.
First, they wiped my ears with an alcoholic solution, then attached clips. Then, they wiped my forehead with a solution and tried several times to stick something to it. When it didn't hold, they used tape. (I had a zit for about a week after that, and I'm pretty sure it was from a researcher's thumb.) The wires came next.
With a wire running straight across my bottom eyelids, I asked them if it was all right that I was very uncomfortable.
"Well, we could have used an anesthetic, but that would only last a few minutes, and then you'd blink more."
Fine. The discomfort was fading anyway.
"OK," the researcher said," now I have to leave you in the dark for 45 minutes." This was so that my eyes could acclimate. "Do you have a favorite radio station?"
"No iPod?" I begged.
"No, they give off too much light."
Reasonable enough. "OK, put on 93.9 FM."
That's WNYC, the local NPR station. As she flipped through the dial, I recognized it immediately.. It was my least favorite show - the special guest was a "cactus cabaret" singer from France - but it was mostly music that didn't offend me. All good.
So, for the next fifteen minutes or so, I sat still listening to French cactus cabaret in the dark. At one point, the researcher came back in with a red-light flashlight.
"I forgot to dilate your eyes," she unapologetically stated. "It's harder int eh dark." And, sure enough, she missed the second eye-drop and had to try again.
I still had another twenty-five minutes in the dark, during which the radio program ended.
The new one was RadioLab, one of my favorites. Hooray!
This episode was about parasites. Boo.
Worse yet, it started with a blow-by-blow description of Ridley Scott's Alien, one of the scariest films of all time. And I got to hear it recounted to me in the dark, complete with audio of the creepiest scenes. Lucky me.
By the time the researchers came back, I was basically numb to humanity. Which was a good thing, because that's when they turned on the machine and started flashing thousands of blinking bright lights at me, all the while instructing me to try not to blink.
The blinking bright lights went on for a while. I don't know how long. I had lost all sense of time.
"OK," said the researcher," good job."
Whew. It was over.
"Now I need you to just sit with your eyes facing this light for the next half-hour. To acclimate."
Right... well, in this case, at least I didn't have to sit all that still to keep my chin on a chin-rest.
"Ready?"
I faced the light.
"See you in half-an-hour."
"Um..." I started. But it was too late. She had turned off the radio, and I was left to face a bright light, in silence, for the next thirty minutes. That's when I started singing to myself.
And that's where we'll leave it until next time.
Tuesday, September 29, 2009
The Search for Spot, Part 1
Thanks to a few lucky coincidences, I have stumbled upon a team of Stargardt's Disease experts. What's more, they're looking for research study participants. As long as they don't further blind me, I'm happy to oblige.
It took a little while to set up an appointment, but we made one for last Friday. I would try to describe the entire visit on one post, but you probably have better things to do with your life, like taking out the garbage or learning to tap-dance. So, I'm splitting this up hour by hour.
Part 1: Paperwork
On Thursday night, I had been having dinner with a friend when I mused, "Gee, wouldn't it be funny if they gave me a clipboard and asked me to fill out a form with tiny print?"
"Oh, that's ridiculous," she said. "At an eye doctor? If they knew you were sort of blind?"
"It happens everywhere I go," I replied, "but there's always a receptionist who, when I tell her I'm legally blind, helps me to fill it out. I dictate, and they write. But I'll bet you somebody does hand me a clipboard."
So, naturally, that's what I expected at the experts.
The next day, I arrived at the doctor's office exactly on time, at 12:30, gave my name and sat down. Not long after I arrived, one of the researchers came in, and the receptionists pointed to me and said, "he's here." It turns out, "he" wasn't me; they had been expecting a patient since 10 in the morning. But we quickly established who I was.
After several questions, four annoying eye drops, and a few simple eye tests, the researcher had every reason to think that (1) I have Stargardt's, (2) I can barely see the "E" on an eye chart, and (3) my prescription sunglasses don't make that much of a difference. It was at this point that someone informed her that the 10:00 patient had finally arrived, only three hours late, and we went back into the waiting room.
"OK, let's get you registered," she said in passing as she went to the desk.
"Ah," I thought, as I saw her grab a clipboard. "Brilliant. She's going to sit with me and let me dictate as she fills out whatever paperwork there is. Thank goodness, I'm in a place where people know exactly what my problem is."
She handed me the clipboard.
"So, can you fill this out?"
I sat there for what felt like an eternity but probably lasted a mere three seconds of shocked silence. I started: "Um..."
"It's three pages," she explained. "You only need to fill out the top part of the first page. For the next two pages, you have to circle yes or no for each of the [single-spaced, more than fifty] questions. Don't leave anything blank; you have to circle no if the answer is no."
My reply: "Um..."
"So, can you do it?"
"I..."
This is normally where I would explain that I'm legally blind. She had just conducted a test that told her that. She had just asked fifteen questions that made it abundantly clear how poor my vision was. Now, I do have my little monocular, which allows me to do some spot-reading of small text -- I've used it to fill out forms before -- but it had literally been years. Maybe she forgot? Maybe she has really, really bad short-term memory?
"Um," I tried again, "I could, maybe... Are you going to be doing anything for the next forty-five minutes? Because it would take about that long."
"Yes," she replied. Which was true. There was that patient who had arrived three hours late. Unlike me, who had arrived exactly on time.
"OK, I guess I can try it," I sheepishly sulked.
"Great, I'll check back in with you later." And off she went.
I think it may have only taken me 35 minutes to complete the 2.5 pages. Filling out a form with a monocular is a lot like riding a bike: you never forget how to do it, and it involves incredible frustration, bad posture, and eye strain. (It's been a while since I rode a bike, so I'm not sure that last part applies.)
She came back over just as I had finished, and she asked how I was doing.
"Actually, I'm done," I proudly reported.
"Good," she approved. "Here's more."
I filled out the second set of questions and signed one of the forms, but decided to leave the second one blank. I didn't feel like spot-reading five single-spaced pages about a research study, and I really didn't feel like signing my consent to something I hadn't read. I let her read it to me later.
That was the first 90 minutes or so. The guinea pig part came next.
It took a little while to set up an appointment, but we made one for last Friday. I would try to describe the entire visit on one post, but you probably have better things to do with your life, like taking out the garbage or learning to tap-dance. So, I'm splitting this up hour by hour.
Part 1: Paperwork
On Thursday night, I had been having dinner with a friend when I mused, "Gee, wouldn't it be funny if they gave me a clipboard and asked me to fill out a form with tiny print?"
"Oh, that's ridiculous," she said. "At an eye doctor? If they knew you were sort of blind?"
"It happens everywhere I go," I replied, "but there's always a receptionist who, when I tell her I'm legally blind, helps me to fill it out. I dictate, and they write. But I'll bet you somebody does hand me a clipboard."
So, naturally, that's what I expected at the experts.
The next day, I arrived at the doctor's office exactly on time, at 12:30, gave my name and sat down. Not long after I arrived, one of the researchers came in, and the receptionists pointed to me and said, "he's here." It turns out, "he" wasn't me; they had been expecting a patient since 10 in the morning. But we quickly established who I was.
After several questions, four annoying eye drops, and a few simple eye tests, the researcher had every reason to think that (1) I have Stargardt's, (2) I can barely see the "E" on an eye chart, and (3) my prescription sunglasses don't make that much of a difference. It was at this point that someone informed her that the 10:00 patient had finally arrived, only three hours late, and we went back into the waiting room.
"OK, let's get you registered," she said in passing as she went to the desk.
"Ah," I thought, as I saw her grab a clipboard. "Brilliant. She's going to sit with me and let me dictate as she fills out whatever paperwork there is. Thank goodness, I'm in a place where people know exactly what my problem is."
She handed me the clipboard.
"So, can you fill this out?"
I sat there for what felt like an eternity but probably lasted a mere three seconds of shocked silence. I started: "Um..."
"It's three pages," she explained. "You only need to fill out the top part of the first page. For the next two pages, you have to circle yes or no for each of the [single-spaced, more than fifty] questions. Don't leave anything blank; you have to circle no if the answer is no."
My reply: "Um..."
"So, can you do it?"
"I..."
This is normally where I would explain that I'm legally blind. She had just conducted a test that told her that. She had just asked fifteen questions that made it abundantly clear how poor my vision was. Now, I do have my little monocular, which allows me to do some spot-reading of small text -- I've used it to fill out forms before -- but it had literally been years. Maybe she forgot? Maybe she has really, really bad short-term memory?
"Um," I tried again, "I could, maybe... Are you going to be doing anything for the next forty-five minutes? Because it would take about that long."
"Yes," she replied. Which was true. There was that patient who had arrived three hours late. Unlike me, who had arrived exactly on time.
"OK, I guess I can try it," I sheepishly sulked.
"Great, I'll check back in with you later." And off she went.
I think it may have only taken me 35 minutes to complete the 2.5 pages. Filling out a form with a monocular is a lot like riding a bike: you never forget how to do it, and it involves incredible frustration, bad posture, and eye strain. (It's been a while since I rode a bike, so I'm not sure that last part applies.)
She came back over just as I had finished, and she asked how I was doing.
"Actually, I'm done," I proudly reported.
"Good," she approved. "Here's more."
I filled out the second set of questions and signed one of the forms, but decided to leave the second one blank. I didn't feel like spot-reading five single-spaced pages about a research study, and I really didn't feel like signing my consent to something I hadn't read. I let her read it to me later.
That was the first 90 minutes or so. The guinea pig part came next.
Sunday, April 5, 2009
A Creative Solution
The FDA has approved a treatment for what I have. It's not something I'd want to pursue at this point, but that's the first time I can say anything remotely close to the previous sentence, which is pretty damn cool.
My friend Andrew, who has the same condition, pointed me to the article (short and easy to read):
Implantable Telescope for the Eye
There are several reasons this isn't something I'd jump to get. First off, after about 19 years of having the exact same quirk in my vision (namely, a blind spot), I've gotten used to it. I can't really imagine what it would be like to see big things in one eye and the whole picture in the other. I already have spotty depth perception, and this probably would exacerbate the issue. I also can't imagine having to constantly switch from one eye to the other. Plus, there are the usual risks associated with any invasive surgery, especially one that involves as sensitive an organ as the eye.
I have the luxury of what is generally functional vision, so I have the choice. There are others with much worse cases of macular degeneration who could really benefit from this. And, hey, maybe I'll opt for it at some point. It's nice to know that it's out there at all, and that people are actually working on fixing this.
My friend Andrew, who has the same condition, pointed me to the article (short and easy to read):
Implantable Telescope for the Eye
There are several reasons this isn't something I'd jump to get. First off, after about 19 years of having the exact same quirk in my vision (namely, a blind spot), I've gotten used to it. I can't really imagine what it would be like to see big things in one eye and the whole picture in the other. I already have spotty depth perception, and this probably would exacerbate the issue. I also can't imagine having to constantly switch from one eye to the other. Plus, there are the usual risks associated with any invasive surgery, especially one that involves as sensitive an organ as the eye.
I have the luxury of what is generally functional vision, so I have the choice. There are others with much worse cases of macular degeneration who could really benefit from this. And, hey, maybe I'll opt for it at some point. It's nice to know that it's out there at all, and that people are actually working on fixing this.
Tuesday, January 13, 2009
Ah, Memories
Today, I went to meet up with an old friend who is starting to have similar eye issues to mine. Luckily, it's happening much later in life for him, and his sight is A-OK in one eye, so he can still drive.
The odd part was walking into the doctor's office. It was a big retinal specialist's place; I had heard of it, but I hadn't ever gone there, even when I was making the rounds as an undiagnosed kid. My friend was still being treated, so I took a seat in the waiting room.
Ophthalmologist's offices are strange places. The patients all speak a little more loudly than you would expect, and no one asks them to fill out forms with tiny print. No one expects them to be able to read them; if they could, they wouldn't be there in the first place.
This was one case where I didn't need to identify myself as not-not-blind. I told them what I was there for, and they casually mentioned a second waiting room where I could look. I looked around for a moment, flipped on my iPod, and tuned out.
When I was ten years old, I spent a lot of time in places like this. I remember the lights being brighter. Other than that, I have no recollection of lots of patients walking around, not sure exactly where they're going, and lots of doctors who know exactly where they're going. I don't know what my state of mind was, but I don't think I was aware of anyone else have vision problems.
I do remember long office visits, hours at a time, going from specialist to specialist and machine to machine. At first, when they said, "Open wide," I opened my mouth. After a while, I got used to it, but my dentist was confused when I opened my eyes at his command. Once you've been to enough people in lab coats with bright lights, the habit does set in.
I had the half-thought of stopping one of the doctors on his way out and asking if they've come up with a cure for me yet. But I think I'll save that for the guy who predicted a cure "in five years." If my math is correct, that would have made it 1996. Yup.
The odd part was walking into the doctor's office. It was a big retinal specialist's place; I had heard of it, but I hadn't ever gone there, even when I was making the rounds as an undiagnosed kid. My friend was still being treated, so I took a seat in the waiting room.
Ophthalmologist's offices are strange places. The patients all speak a little more loudly than you would expect, and no one asks them to fill out forms with tiny print. No one expects them to be able to read them; if they could, they wouldn't be there in the first place.
This was one case where I didn't need to identify myself as not-not-blind. I told them what I was there for, and they casually mentioned a second waiting room where I could look. I looked around for a moment, flipped on my iPod, and tuned out.
When I was ten years old, I spent a lot of time in places like this. I remember the lights being brighter. Other than that, I have no recollection of lots of patients walking around, not sure exactly where they're going, and lots of doctors who know exactly where they're going. I don't know what my state of mind was, but I don't think I was aware of anyone else have vision problems.
I do remember long office visits, hours at a time, going from specialist to specialist and machine to machine. At first, when they said, "Open wide," I opened my mouth. After a while, I got used to it, but my dentist was confused when I opened my eyes at his command. Once you've been to enough people in lab coats with bright lights, the habit does set in.
I had the half-thought of stopping one of the doctors on his way out and asking if they've come up with a cure for me yet. But I think I'll save that for the guy who predicted a cure "in five years." If my math is correct, that would have made it 1996. Yup.
Friday, November 28, 2008
Another Sappy Gratitude Post
I am thankful for my disease.
OK, there, I said it. I can claim membership in the club now.
True, I don't have a terminal illness. I can thank my lucky stars that I don't have the physical pain of cancer or chemo, nor the mental anguish of wondering when I'll die. I'm healthy (knock on wood), in good shape, and planning to live a long and fruitful life, god/fate/luck willing.
I also don't have a contagious disease. Thankfully, I don't have to worry about how people might react, or whether they're fully informed enough to be willing to shake my hand, hug, or kiss me. Even with all the education out there, people with HIV and AIDS are often treated as modern-day lepers. (From what I know of history, a leper used to be a lot like a Bush voter in Brooklyn. Everybody just keeps their distance, and so does the leper.) No question, my day doesn't require nearly as much bravery as anyone with a deadly communicable disease.
And then there's the fact that I'm not even completely blind. Much as I like to refer to myself as "the blind guy," it's only a small patch. Fully blind people put up with way more discrimination than I do and have barely any of the access to, well, anything. I'm thankful for the vision I have, and while I'd like to think I could still make a full life for myself without any vision,it's still pretty damn cool to have most of mine.
I am also thankful for the effect Stargardt's disease has had on me. It has forced me to be a more social person, to be kinder to people around me, and to forge a unique niche for myself everywhere I go. I like that I can't fit neatly into a pre-made box. I like that I get to constantly surprise people with what I can do. And I like that my disease is harder to spell than my last name.
I am not prone to making statements such as, "This disease has affected my life for the better." First off, it's probably not true -- 20/20 vision comes in handy once in a while -- and second, there's no way to know. I certainly would welcome a cure, if it arrived at my front door, pre-tested and ready to go. But, hey, I can't really complain. I have a job (several, in fact) and a decent life with great friends. Who wouldn't be thankful for that?
What's that you say? Your cousin Dan wouldn't be thankful for that? Well, he can go eat somebody else's turkey, because my leftovers are for ME, mister. Stupid Dan.
OK, there, I said it. I can claim membership in the club now.
True, I don't have a terminal illness. I can thank my lucky stars that I don't have the physical pain of cancer or chemo, nor the mental anguish of wondering when I'll die. I'm healthy (knock on wood), in good shape, and planning to live a long and fruitful life, god/fate/luck willing.
I also don't have a contagious disease. Thankfully, I don't have to worry about how people might react, or whether they're fully informed enough to be willing to shake my hand, hug, or kiss me. Even with all the education out there, people with HIV and AIDS are often treated as modern-day lepers. (From what I know of history, a leper used to be a lot like a Bush voter in Brooklyn. Everybody just keeps their distance, and so does the leper.) No question, my day doesn't require nearly as much bravery as anyone with a deadly communicable disease.
And then there's the fact that I'm not even completely blind. Much as I like to refer to myself as "the blind guy," it's only a small patch. Fully blind people put up with way more discrimination than I do and have barely any of the access to, well, anything. I'm thankful for the vision I have, and while I'd like to think I could still make a full life for myself without any vision,it's still pretty damn cool to have most of mine.
I am also thankful for the effect Stargardt's disease has had on me. It has forced me to be a more social person, to be kinder to people around me, and to forge a unique niche for myself everywhere I go. I like that I can't fit neatly into a pre-made box. I like that I get to constantly surprise people with what I can do. And I like that my disease is harder to spell than my last name.
I am not prone to making statements such as, "This disease has affected my life for the better." First off, it's probably not true -- 20/20 vision comes in handy once in a while -- and second, there's no way to know. I certainly would welcome a cure, if it arrived at my front door, pre-tested and ready to go. But, hey, I can't really complain. I have a job (several, in fact) and a decent life with great friends. Who wouldn't be thankful for that?
What's that you say? Your cousin Dan wouldn't be thankful for that? Well, he can go eat somebody else's turkey, because my leftovers are for ME, mister. Stupid Dan.
Tuesday, September 30, 2008
Shining Stargardt's
Q: So, What exactly is wrong with your eyes?
A: First of all, I like to think of myself as "differently sighted." (JK, LOL.)
I have what's commonly known as Stargardt's Disease. Okay, maybe not "commonly known," since barely anyone has ever heard of it... but there are other names, and that one happens to be easy to say (if not spell).
I wanted to link to the Wikipedia page to explain it, but it's not very helpful. SO here's how it's been explained to me:
If the eye were a camera (a traditional camera, not one of those stupid digital things), the retina would be the film. Light bounces off an object and travels through the rest of the eye to hit the retina to make the image.
The macula is the center of the retina, and it deals with everything in your central vision, including the most accurate stuff that you use to identify words, faces, and random twisted metal on the side of the road. While you use your peripheral (outer) vision to perceive a moving object coming from the side, you use the central vision to identify things.
SOme of us are lucky enough to have "macular degeneration," where the macula -- clearing house for all that useful central vision -- gets eaten away. Most people with macular degeneration get it when they're older, and the onset is pretty fast. In my case, Stargardt's, it happens before the age of 20 -- or, in my case, before the age of 10 -- and sticks around for the rest of your life.
One advantage of STargardt's, as opposed to the older and more common kind, is that the damage is often pretty limited. In my case, I just have a small blind spot. I've met other people with the same condition, and it seems to affect everyone a little differently; mine stopped its progress when I was about 12, and some people get progressively worse. So, actually, I'm pretty lucky.
At the moment, there's no treatment, and I don't really expect one. Most of us Sytargardt's people do pretty well; we're reasonably successful, often a little bookish (ironic, because we can't really read much), and unusually friendly. There doesn't seem to be any great urgency to find a cure, and I'll probably be OK as is for the next several decades Still, the thought does cross my mind of what it would be like to have normal sight. Now, what exactly does that mean, again?
A: First of all, I like to think of myself as "differently sighted." (JK, LOL.)
I have what's commonly known as Stargardt's Disease. Okay, maybe not "commonly known," since barely anyone has ever heard of it... but there are other names, and that one happens to be easy to say (if not spell).
I wanted to link to the Wikipedia page to explain it, but it's not very helpful. SO here's how it's been explained to me:
If the eye were a camera (a traditional camera, not one of those stupid digital things), the retina would be the film. Light bounces off an object and travels through the rest of the eye to hit the retina to make the image.
The macula is the center of the retina, and it deals with everything in your central vision, including the most accurate stuff that you use to identify words, faces, and random twisted metal on the side of the road. While you use your peripheral (outer) vision to perceive a moving object coming from the side, you use the central vision to identify things.
SOme of us are lucky enough to have "macular degeneration," where the macula -- clearing house for all that useful central vision -- gets eaten away. Most people with macular degeneration get it when they're older, and the onset is pretty fast. In my case, Stargardt's, it happens before the age of 20 -- or, in my case, before the age of 10 -- and sticks around for the rest of your life.
One advantage of STargardt's, as opposed to the older and more common kind, is that the damage is often pretty limited. In my case, I just have a small blind spot. I've met other people with the same condition, and it seems to affect everyone a little differently; mine stopped its progress when I was about 12, and some people get progressively worse. So, actually, I'm pretty lucky.
At the moment, there's no treatment, and I don't really expect one. Most of us Sytargardt's people do pretty well; we're reasonably successful, often a little bookish (ironic, because we can't really read much), and unusually friendly. There doesn't seem to be any great urgency to find a cure, and I'll probably be OK as is for the next several decades Still, the thought does cross my mind of what it would be like to have normal sight. Now, what exactly does that mean, again?
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