Twilight: Losing Sight, Gaining Insight

Book by Grunwald Henry

In the primordial ocean, a tiny organism stirs. It is covered with a light-sensitive pigment, an eyespot, that seeks the sun and turns the organism toward it. The act is not seeing, but the precursor of seeing. It is part of the fundamental impulse in all living things to reach for light, part of the indomitable will to see.

I stand at the edge of the ocean and I think of those eyespots and of the single-cell creatures that, eons ago, began the miraculous process of sight. I, too, strain to see -- to see the waves, the sand, the shells and seaweed and debris that wash ashore. My eyes are animated by the same impulse, the same will to see. But my eyes don't work, at least not fully, because they are blocked by disease. The scene around me appears through a kind of curtain, a haze. If I bend down, I will have a hard time telling a stone apart from a shell, a coin from a piece of sea glass. If I were to pick up a discarded newspaper, I would not be able to read it. During a lifetime as a writer and editor, reading newspapers -- or news in any form -- had been a natural and indispensable part of myself. My existence seemed to be wrapped in the printed word. No longer.

Until the onset of my disease, I was literally unaware of my eyes, with the occasional trivial exception of needing new glasses or having somebody extricate a speck of dust. Now I am aware of my eyes almost constantly. I imagine them as distinct globes inside my head. I try to visualize the intricate vessels and veins and conduits in these globes. I think of their fragility but also of their power. In medicine as well as in romantic poetry, it is the heart that is the center and controlling mechanics of life. If the heart stops, life stops. The loss of sight doesn't not mean death. Yet for ages, the eyes was believed to contain a human being's vital essence -- a not wholly irrational belief. For those of us who are born with the ability to see, sight determines most of what we know about the world, what we enjoy, and what and whom we love. That is surely one reason why in the mythology of almost every culture the eve plays a dominant part.

My years with failing vision have prompted me to learn about the nature of the eye and the incredible gift of sight, which I had always taken for granted until it began to slip away. But I also leaned about living within limits and overcoming disability. This, then, is not merely a story about seeing but also about living. It is a story not merely about losing sight but about gaining insight as well.

In 1992, my wife, Louise, and I rented a villa outside Florence. The light in the house was inadequate, especially in the gloomy, rainy weather of that October; the twenty-five-watt bulbs in the pseudoelegant scones reminded me of those notoriously underlit Russian hotel rooms. One afternoon, I picked up a carafe from a side table in a particularly dark corner to pour water into a glass. I missed the glass. I inveighed against the landlord, who, I thought, was trying to save electricity with those weak lightbulbs, but I suspected that I might need new glasses. Back in New York , quite unconcerned, I dropped in on the nearest optician. In a darkened cubicle, he took me through the usual eye test. I have worn glasses ever since I was a teenager. Using both eyes, I read the chart without difficulty, but when my right eye was covered and I looked only through my left, I saw virtually nothing. My right eye, on the other hand, was close to normal and, as I realized later, saw for both. The optician seemed embarrassed, and he took me through the test again. The result was the same. "I think you had better see an eye doctor," he said.

Still not too alarmed, I did just that and was told that I was suffering from something called macular degeneration. I did not know what macular meant, but I soon learned that the word derives from macula (Latin for "spot") and refers to a tiny area in the retina. As for degeneration the term was extremely depressing, with its overtones of moral decay. I had never heard of the disease.

It is formally known as age-related macular degeneration, or AMD, because most sufferers are over fifty. It is one of the least understood eye problems, not having been reliably identified until the 1970s. To one degree or another, it afflicts an estimated 15 million Americans and will beset millions more in the future. It is the most common cause of irreversible vision loss in the world, yet its origins are unknown. . . .

We have become accustomed to medical marvels: organ transplants, heart bypass operations, hip replacement. Concerning the eye, I knew about cornea transplants, cataract removals, treatments for glaucoma and other disorders that in the past had often led to blindness. I did not yet know how serious the effect of this disease could be, and I naturally assumed that it was treatable. But I was shocked to learn that it really wasn't -- at least not with lasting effect. No comparable marvels had been devised for macular degeneration. I was outraged. Now I really started to worry.