I forget sometimes how much thought and industry are wasted. The time spent practicing piano, learning Granados’ Goyescas (as I’ve been doing lately), is time spent burning through thoughts and ideas, random memories and meaningless self-analysis. Other endeavors generate oceans of thought and ideas, virtually all of it wasted or forgotten. It mystifies me how anyone remembers what to remember, or how memory is even formed. The way things get documented and filtered, the way these things take time, I sometimes don’t understand how anyone can comprehend what is actually happening as it happens. It takes me months sometimes, even years for me to understand where I am, where I was, why some things happened and others did not.
The holiday season almost completely eluded me. A ham sandwich and some grapefruit juice comprised my Christmas feast. My annual period of wallowing in seasonally-adjusted, holiday-induced self-pity and misery never happened. Maybe it’s just general happiness, and contentedness with my life. Maybe it’s other distractions minnowing about this shallow little mind.
Today I had round 4 of my eyes getting poked, prodded, dilated, and the way things are going it would suit me fine if we just gouged them out completely. Six months ago an opthalmologist in Manhattan said I might be showing early signs of age related macular degeneration. I am 38 years old, and this is a pretty unusual diagnosis for my age, but it can happen. She said it was not certain, though, and to check back in 5 or 6 months. She kind of offended me with the way she delivered the news. She seemed to relish the drama a little too much. The drama of telling me this. I believed her, as she impressed me as a completely capable eye doctor, but she seemed to be living a Perry Mason type moment. I think she interpreted my muted response as disbelief.
On her advice I started gorging on Lutein supplements, fish, and Omega 3 supplements. The latter seems to have produced a wide range of allergic reactions, mostly as skin rashes of varying ranges of disgustingness which have made for fabulous conversation pieces.
For instance, at a pub in Queens, I was talking with a woman who I’d just met, and the conversation traveled from the subject of my sexy skin rashes to that of bedbugs, which are an epidemic in some parts of New York. Almost everyone I know has either had them or knows someone who has had them. This woman, who I had known for all of 3 minutes, said that she had bedbugs and to “look at these damn bedbug bites on me!” With that she opened her pants for several seconds, allowing me a most stark look at something more than just bug bites. It was not even sexual, just strange and even vulgar to where I almost blurted out “nice twat.” Instead I thanked her for the intimate survey of her bedbug situation. “That looks really uncomfortable,” I believe is what I said, electing not to ask if she shaved before or after the bites.
Five or six months later I discovered the Amsler Grid, which is used to detect symptoms of macular degeneration and other eye problems. I answered yes to everything you do not want to answer yes to in that test. Blotches here, wavy lines there, invisible stuff over there.
I soon saw another eye doctor, and his verdict was considerably more certain. The first doctor clearly said it *might* be macular degeneration. This doctor, while not able to officially diagnose it, was far more certain that something in my retina is not as it should be. These symptoms, which are textbook macular degeneration symptoms, could be caused by other things: myopia, the fact that I have a very strong prescription, and possibly the fact that I’ve never worn sunglasses. I’ve spent much of the last few years wandering about in direct sunlight, and my prescription is stage 6. This plus the myopia (I honestly don’t understand how the myopia fits in to this but I am assured that it does) could lead to symptoms that resemble macular degeneration but would not necessarily develop in a degenerative way. (Seems strange to use the word “develop” in this context but hey why not).
But age related macular degeneration in somebody my age still makes no sense, and though it goes against my nature I am staying optimistic. As much as it walks like it, talks like it, and looks like it, it may be something more controllable. In the meantime I’ve gone through several rounds of tests ranging from uncomfortable to painful. Last week found me literally writhing in pain in one doctor’s office, today brought some more of the same as the technician botched the injection of dye into my vein.
I am avoiding the temptation to try and learn all there is to learn about this. There is an ocean of crap on the Internet that has often sent me down the stupidest rat holes of misinformation. I know that Lucentis is described as the new miracle cure for macular degeneration, and in fact the eyeball technician I saw today described it as the most important breakthrough in eye care since laser surgery was introduced 30 years ago. Lucentis is $2,000 per dose, requiring several applications. I have no idea if my insurance would cover much of that, but I shan’t worry now.
Lucentis does not sound like a lot of fun. I think the initial press release indicates that commitment and long-term cooperation from the patient are critical to success, which sounds like code for a painful or at least very uncomfortable procedure. At first I thought it was just some pill you took, or a syringe in the ass, but in fact it involves needles injected into the eyeball and several days of potentially unpleasant side effects. This is, however, said to be a tremendous improvement over previous treatments, and today I was told that the needles don’t really even hurt. It’s more of a feeling of pressure, not pain.
But there is no point in dreading that issue yet, as it is possibly irrelevant. I’ll find out next week what today’s photographs of my eyes show. I keep expecting that some doctor will reassure me somehow, and even if he has to lie I imagine they’re supposed to say that I have nothing to worry about. But every doctor I’ve seen has indicated that the situation is serious.
After today’s tests I walked roughly 7 or 8 miles through Queens, nearly blinded because my pupils were dilated. I am trying to remember the many things I thought about during that walk but nothing is coming back to me. I stopped at a gas station and paid $2.50 for a Red Bull. I left the empty Red Bull can in a payphone enclosure somewhere around 55th Street on Queens Boulevard. I had so many thoughts, but they vanish as quickly as they appear.
