In November 2010, I posted an account of my first treatment for macular degeneration and the events which had led up to it. (Link)
The macula is a small spot at the center of the retina, the back of the eye. It is made up of millions of light-sensing cells, enabling people to have clear central vision. With macular degeneration, a fluid seeps through the layers of the macula, causing blurring in the central area. By the time mine was discovered during an examination for new glasses, the center of my right eye had turned into brown scar tissue. When I closed my left eye, the center of my vision appeared sloppily erased, while around the center my vision was distorted, then almost sharp at the edges. It was enough to walk around and do many household tasks, but not enough to read. When I started to focus on something it would immediately slide into the central, blurred area.
I had the wet type of age-related macular degeneration in my left eye, while the AMD in my right I was drying up and going into remission. In hope of stopping the degeneration, maybe even reversing it, my retinal surgeon had me come to the American Eye Center in the Shangri-la Plaza for regularly scheduled exams. They were three months apart when things were going well, closer together when they weren’t.
Over time a routine developed. At the beginning of my checkup, a machine would test the pressure on my eyeball. Then my eyes would be dilated so the retina at the back of the eye was visible, and another machine would scan it and take pictures. These would be printed out, Dr. Arroyo would peer into my eyeball with her headlamp and magnifying glass while telling me to look to the left, look to the right, look down, look up. We’d look at the retinal scan printouts and talk about whatever dark slits had increased or decreased in the macula. At that point we’d agree on a date for either an appointment or a “procedure,” to use that ubiquitous and suspiciously vague, all-encompassing term.
Over the next two or three years I developed a routine for dealing with the emotional fallout of what was happening. I had—have—no doubt whatsoever in Dr. Arroyo’s skill, good judgment, honesty and compassion. If I’d trusted her less, everything would have been much more complicated. On those occasions where she’d point out the gaps between retinal layers and recommend a procedure, I’d agree to whatever arrangement was available, put on my sunglasses to protect my dilated eyes from the mall’s harsh florescent lights and head for the taxi line downstairs. In the taxi, I’d allow myself to descend into the well of self-pity which was usually closed off and to stay there for the rest of the day. The next day I’d resume normal activities while worrying about the up-coming surgery.
On the day of the surgery, I’d arrive with my housekeeper, whose job it would be to see me home and administer eye drops over a period of many hours. She’d wait while I’d be shown into the rooms attached to the operating room. I’d put on a gown, and one shower cap would be taped over my head and two others put over my shoes. For half an hour I’d wait in near darkness as eye drops were administered at regular intervals. I’d be led into the operating room, seated on a reclining chair and hooked up to a blood pressure machine. One eye and most of my face would be wrapped up. A topical anesthetic would be dropped into the other eye. I’d grab the armrests of the chair and hold on tight as I focused on the surgical lamp above me and the space between the two kidney-shaped bulbs. As the procedure began, Dr. Arroyo would explain what was happening next in a calm, reassuring voice. I’d feel a slight prick in my eyeball as the needle entered and then see the medication rippling in like the circles formed when a rock is thrown into a pond. I’d myself not to move. Once the ripple effect caused my view of the lamp to veer off to the right, and I did move, but thankfully only my feet. A jerk of my head could have caused disaster. Finally, Dr. Arroyo would inform me that it was over, and I’d melt into a puddle of gratitude. I’d be unhooked from the machinery, released from the chair and led into the darkroom for another series of eye drops and the combination of relief, self-examination, meditation and calm which always seems to follow panic. This happened a total of sixteen times.
The fifteen Lucentis and one Avastin injections halted the degeneration. At that point, my vision affected only my reading, but that was a major part of my life. When I wanted to read in a restaurant or coffee shop I’d pull out a flashlight and ignore the strange looks or comments from servers or other customers.
But then things got a bit more complicated. Since I had the good fortune of regular eye exams, we caught the change in eyeball pressure before if affected the optical nerve and caused glaucoma. I’m taking nightly eye drops for that. But then I began to have blanks in my vision, so that type on a page looked like it was behind white, partially transparent polka dots which obscured part or all of most words. I had to move my eyes or move my head or use a much larger print to see or guess at one word at a time.
This is my experience of cataracts, which reportedly can take all sorts of forms as the lens of the eye oxidizes and becomes cloudy or even opaque. It can cut off vision entirely. In my case it simply made vision more difficult. My hand-eye coordination was also affected with things like being unable to write on the line when writing checks or fumbling around as I tried putting a plug into an electric outlet.
These days I do most of my reading on a computer, so my first impulse was to turn to technology. I can read more easily with a larger font. Windows 10 has some “ease of access” features which I found useful and some I found idiotic. There is a selection of narrator voices, adjustable for gender and speed, which will read the text of a document or web page and all the writing at the edges of the screen. I found it hard to navigate and soon discovered a much better alternative. There is a color and contrast control, but also with problems. If the colors were only black and white or black and yellow, I’d have no problem with it. But the high contrast screen uses medium or darker blue and red for headings, which for me blend into the black background. Turning the high contrast off also means catching the icon on the fight of the screen during the nanosecond it appears. This can be very frustrating.
However, Windows does offer an alternative I use daily. A document or website article can be copied, saved as a PDF file and opened in Edge. Then you can adjust it to fit the screen and click on “read aloud.” Again, there’s a selection of voices and reading speeds. It takes a bit of getting used to, like with contractions. “Don’t” is read aloud as “Don T.” Plurals are strange in the same way. There is one pronunciation per spelling with no adjustments for the function a word plays in a sentence. However, I find it very useful for quickly consuming a document and for proofreading.
Shortly after cataracts appeared, I’d get anxious when reading at the computer, wondering what I would do when my eyesight deteriorated even further. I mentioned computer programs to Dr. Arroyo, who recommended the software expert at American Eye.
Early in my appointment with Dr. Ongsiako, she suggested purchasing an Eschenbach digital magnifier. She ordered them in bulk, she said, saving her patients money. I bought the one she handed me, which I use many, many times during a typical day to read anything which is fairly short, such as headers, sidebars, footers and other parts of a website which aren’t magnified when I adjust the font size of the text. I’ve also used it for reading books, but I find it awkward to hold or push the thing over a line of text, then take it back to the next line and move on. When reading from something flat, like a newspaper, it works better than it does on a paperback book, where it bumps over the fold in the middle or the edges of a page. Later I got a second, somewhat larger magnifier through the doctor’s secretary, but it still didn’t show me a whole page. If I still read a lot of printed books I’d have shelled out three or four thousand dollars for a magnifier which would show me an entire printed page at once. As it is, I think it takes about ten times as long to read with the magnifier than it did when my vision was better. Slogging through a text I don’t enjoy is very tedious.
But by this time I’d gotten into the habit of ordering electronic books from Amazon and reading them on the free Cloud Reader. Since they’re all immediately downloadable, there are no shipping or delivery problems getting here in the Philippines. The font size is adjustable, and the Cloud Reader gives you either black text on white or white on black. A friend in California wrote that when he came to the Philippines he’d bring me a Kindle reader, which I needed whether I knew it or not. He was right. With the adjustable font size it’s perfect for reading in restaurants and coffee shops even now that I have cataracts.
I had a lot less luck ordering magnifying lenses online. Amazon had some lenses that clip on to regular reading glasses. I think I ordered three with different magnifications. All turned out to be cheap bits of plastic I couldn’t see through.
I sent them back and ordered a pair of Schweizer lenses. These I never received. Since the company didn’t ship to the Philippines, I had them sent to Shipping Cart in California, which would ship them here. I’d ordered other stuff sent through that company with no problems. This time there was a mix-up. Over maybe a month I’d send the company emails regarding my package and get a reply which did not respond to my questions. Either they said I had no orders with them, or they said my order had been sitting with them so long they were going to discard it. I went through their entire search process several times. Together we sent a total of 56 messages, half of which were mine. I had no luck in contacting them on Facebook. Finally, I let my $56 purchase go. I will never use them again.
I did go back to Amazon for a pair of clip-on lenses made by Eschenbach, which were expensive enough I figured they should work. What the ad did not tell me, but the accompanying explanation did, was that they should be clipped on to a pair of distance glasses. I had only one fairly weak pair of those. The lenses were divided into four sections. I could only see out of a very small bit at the bottom, while the rest was as opaque as the cheap plastic ones were. I sent them back and gave up.
In going to see Dr. Ongsiako, I’d intended to check out computer software. This was before I’d gotten into the habit of having Edge magnify and read a text for me. Every time I sat down to my desktop computer I’d ask myself what I was going to do when my vision got worse. I’d also bought a laptop with a maddeningly small gray font on a light gray background. I figured the software would be very useful there.
Through Dr. Ongsiako and her Pacific Vision company, I bought ZoomText Magnifier/Reader software with a ZoomText keyboard, which is easy to use and makes getting around the computer screen somewhat easier. I don’t use it as much as I’d anticipated, but it’s brought me peace of mind. It’s designed to make it possible for the visually impaired, even the legally blind, to make a living using the computer, and I think it does. (Link to video)
The first time I used it I was amazed that the window opened on double magnification, so that only a fourth of the screen was visible. As it followed the cursor down a sentence it careened around madly. I was not pleased. I turned the magnification off and just used one of the two readers. The contrast colors are much better than the access feature on Windows 10, and the text is sharp regardless of the magnification level.. Really using it would mean learning how to navigate with assorted key combinations—a bit complicated but doable—or using the feature keys on the keyboard. I’ll get around to exploring all the features eventually. Sometimes computers are just fun to play around with.
A couple of months ago I talked with Dr. Arroyo about the possibility of cataract surgery. She said, “Well, that would be an option. It would sharpen your vision.”
“What about the AMD? Would removing my natural lenses make it come back?”
“That happens sometimes, but not often. And if it did, we could just give you another injection.”
“Oh, okay. ‘But I just spent almost two thousand dollars on technology for the visually impaired.”
“Don’t worry. You’ll still need it. Your retinal wall is very thin.”
“Well, okay then.”
So that’s where things stand now. If the lockdown ever ends, we’ll talk about the possibility of cataract surgery. But now, as with almost everything—no, everything—in my life, I’m discovering again that I’ll get what I need
UPDATE: In the latest version of Microsoft Edge, Chromium Edge, the “read aloud” feature is not available. There is some nonsense about being able to draw. There may be some versions where it is available already. This is very annoying. I think I’ll just use ZoomText for now and play around with Edge later. That’s why you have backups.