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.
Showing posts with label opthalmologists. Show all posts
Showing posts with label opthalmologists. Show all posts
Wednesday, October 21, 2009
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.
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.
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