Open my eyes, that I might see

Two weeks ago I went to my eye doctor for that irritating annual appointment that they require if you want to wear contact lenses. They asked if I wanted to pay $40 for the picture of my retina. I don’t do that every year, but every so often it seems fine to check. The optometrist took a look at it, and showed me some pictures. She handed me a pamphlet for foods with lot of lutein and a preliminary diagnosis of macular degeneration and something else I didn’t even hear after I heard the words “macular degeneration” – which I knew to lead to incurable blindness. I managed to significantly fail an exam I’d never taken before. Good news though – my prescription hadn’t changed! I had no symptoms anything was wrong.

One of the advantages of middle age is you’ve learned not to panic. I remember at 22 I found a lump in my breast and spent the time between diagnosis and follow up convinced that my life was too beautiful to be allowed to continue. I would leave my beloved groom a heartbroken widow at 25! I would never have children! I hadn’t been to all that many funerals, but the “Sleepless in Seattle” veiled funeral in a hilltop with a beautiful view and distraught mourners seemed about right. It was, my friends, happily just a weird lump.

Since then I’ve had a number of life-changing initial diagnosis that didn’t happen. I mean, just 18 months ago I wasn’t going to be able to hike again with degraded cartilage and too young for a knee replacement. That was actually an infestation of knee mice, easily solved with a scoping and I was back on the mountain not two weeks later.

Still, it’s an arresting thought that you might be going blind. I’ve always been imaginative and somewhat romantic, or dramatic. I’d look out the window while I worked and look at the blush of sunset over the trees where the hawk reposes and wonder how many more sunsets I would have. I looked at my paints and my papers and the unfinished paintings strewn across my desk. You’d think I’d be most grief stricken at giving up art, but instead I was DEEPLY grateful that I’d spent the last five years practicing LOOKING at things – really seeing the color of the snow, or the way light played through leaves, or the blueing of hills as they fade into the background. If I were going blind, that rich set of memories would be a consolation – to have known something better before you lose it forever is better than having taken it for granted.

And going blind sure sounded like it was an option.

I was not consoled when the ophthalmologist would see me in the next week. It’s not a great sign when the specialists are suddenly available. I went to see the owner of the practice, who had many decades of experience under his belt. He got still and sober when he saw my images. (Of course, we can never trust anyone else’s tests. For the second time in a week I got my eyes checked for glaucoma and dilated etc. etc.) He asked where I had grown up – which in my case is tropical Africa, home of mysterious diseases. No really, my birth country is where most of the really bizarre ones lately have come from. This was not a reassuring set of questions. He said he had no idea what it was (and he spent like 5 minutes trying to figure out the closest ICD10 code) but it seemed like an emergency and I needed to go see a retinal specialist ASAP. It was after 4, so they said they’d let me know the next day when the appointment would be. He affirmed that blindness was a real possible outcome here.

In good news, I didn’t have to wait long. In bad news, when a top specialist will see you tomorrow you don’t have what you might call warm fuzzy feelings.

I sat in the waiting room, the youngest person there by 20 years, not excluding the caretakers bringing tottering nonagenarians with rhuemy eyes, as my pupils grew larger and larger and my phone grew less and less visible. I couldn’t help but wonder if this was some preview of the gradual indistinction ahead of me. How do blind people distract themselves in waiting rooms? Audio books?

The retinal specialist had clearly once read a book on bedside manners, which he executed by rote. (The consensus in the waiting room was “he is fast” which is a lovely way to describe brusque.) But you don’t go to an expert because they make you feel good, you go because no one can figure out what’s happening to you, and they’ve seen hundreds of thousands of sick eyes and may know what they see.

Not to keep you in suspense, but the news is as good as it could be. He said, with brisk certainty, it’s Pattern Dystrophy. A genetic (not bizarre tropical) condition where the garbage removal system of the eyes doesn’t do all it’s supposed to and leaves mounds and caverns in the macula. The prognosis, he said, was good. Very very few people with this condition lose their sight and most are able to drive or read a newspaper their whole lives (or until they get something else). It definitely isn’t macular degeneration. He was, he said, comfortable leaving it there and just monitoring it. We could also do a formal diagnosis, and it turns out that The Dude Who Studies Genetic Retinal Diseases works at Mass Eye and Ear. So I’ll go do the formal thing and maybe enroll in a study. This is different than not having ANYTHING wrong with my eyes. I am now able to identify some … wobbles in my vision. Some of what I was figuring was just being that age is actually these deposits.

The only thing I need to do is to look at the Amsler Chart regularly to make sure no enterprising blood vessel decides to make a break for it through the thinner covering of my eye. This is the test I unexpectedly failed in the first appointment. Look at the dot in the middle of the grid one eye at a time. Do all of the lines stay straight? They don’t for me. There are wiggles in it. I was charmed when I first saw it. How do they do that optical illusion? But the illusion was actually the distortions in my macula.

One of these days, I won’t be able to dodge the diagnosis. The lump will be cancer. The knee will be shot. The spots will be blindness. We all die of something, and we’re lucky in a world with good medical care (at least for now) which means many of us end up surviving things like cancer to go on and die of something else. But yesterday I watched the sun blush the snow-covered top of Nobility Hill and smiled to know I’d get to keep on watching that scene for years yet to come.