Eye Trouble

Eye Trouble


My eye trouble started more than three decades ago, when I was
forty-one. I discovered that if I closed my left eye, straight vertical
lines curved extravagantly, and I could not read. I became sensitive to
bright lights. A retina specialist told me that I had a rare genetic
ailment, macular dystrophy: the disintegration of a tiny spot at the
center of the retina that is responsible for fine vision. I had the
disease in both eyes, and there was no treatment. Still, I found an
optometrist who prescribed tinted lenses and reading glasses with high
magnification, and with those I could continue to read, write, and
teach. For years, my good left eye kept me going, and nothing much
changed except that the blank my right eye saw grew bigger.

Eight years ago—twenty-five years after my disease started—I began to
have new trouble seeing. I made an appointment with another retina
specialist, who told me that I now had age-related macular degeneration
along with macular dystrophy: a drop of fluid and blood was on the
macula of my good left eye, and if nothing was done I’d quickly lose
central vision. But there was help. The doctor gave me three injections,
one a month, standing at my side, too far back to be seen, putting the
needle into the corner of the eye. The shots worked, and we agreed that
I was fortunate—though the requirement to rejoice irked me. I was
fortunate only compared with someone who was more unfortunate than I.

In the spring of 2016, picture frames in my house that should have been
uncomplicated black rectangles developed bulges along one edge,
whichever edge I looked at. This perception was new and troubling, but
it was also interesting. In living rooms, waiting rooms, offices, I
amused myself—it was dark amusement—making frames bulge. The picture
itself looked fine. Lying in the bathtub, I looked at the two Phillips
screws that secured the metal disk over the drain. If I looked at the
one on the right, I could see both. If I looked at the one on the left,
the right one disappeared. I was pleased with myself, as some people
take pride in the bad behavior of their children. “She did that? Well,
son of a gun.”

But then my mood changed. These new changes were not interesting. They
were annoying and upsetting. As I walked through the house, everything
straight—the recessed rectangles that modestly decorate our old wooden
doors, the edges of steps—was warped. Would I get used to this? Would I
remember the beauty of simple geometric shapes?

Discussing my eye trouble makes me uncomfortable. My problem isn’t dire.
I’ve noticed that friends with their own upsetting but not-life-threatening ailments also feel guilty talking about them. We fear
that we’re exaggerating or imagining a problem, and our doubts become
more painful than the problem itself. Worse, people whom we confide in
assure us that our problems are ordinary. When I complain about bright
lights, friends say that they too hate them, though nobody else at the
chamber-music concert is wearing a baseball cap and sunglasses. You’d
think I would know better, but when these same friends mention their
middle-sized troubles, I, too, change the subject or minimize the
problem. I am curious but feel I shouldn’t ask. I say something
foolishly optimistic. Or, instead, my friends and I will argue about who
suffers more—I say that they are in worse trouble with their
depression or bad digestion or wretched feet, and they claim that my eye
trouble is worse. Indeed, people often ask questions that suggest that
my condition is much more grave than it is—“Can you see me?” The times
someone has assumed that my eye trouble might prevent me from doing
something that I wanted to do, I’ve been furious. Yet what exactly do we
want, we who have something middle-sized wrong with us?

When I began seeing aberrations with both eyes open, in the spring of
2016, I thought I might need another shot. The doctor was sympathetic,
but he saw no fluid. He wasn’t as interested as I was in the slow
changes caused by my macular dystrophy. He was on the lookout for a
grizzly bear—macular degeneration—while I complained about a squirrel
that merely nibbled at my flesh. Late that summer, though, he saw
something new. He pointed it out in the photograph of the back of my
eye: a cyst. It was right of center, just like the blank space that I
described where the Phillips screw used to be. Excited, the doctor
prepared an injection, thinking it would make the cyst go away, and,
with it, the gap in my vision.

After each injection, I would feel as if there were something in my eye.
I swallowed ibuprofen, squirted artificial tears, and yelled at Edward,
my husband and scapegoat. Now the doctor had added an element of
suspense to the physical discomfort: Would the injection make the cyst
go away? If it did, would the blank area in my vision be restored? The
changes in my good eye had been my private drama, subtle but important.
Now the drama was also my doctor’s. True, the cyst might go away, and,
even if the blank area stayed, the injection might serve to prevent a
worse blank area. But how much rejoicing could I work up for the
prevention of an event that might not have happened?

That fall, Edward and I faced a new trouble: the dog had a torn ligament
in a back leg. He is a vigorous shelter mutt, a black pit-bull mix,
hysterically friendly. Now he lay in a corner. He cried when he climbed
the stairs. On walks, he lay down, so we shortened his walks. At home,
we now kept him on the first floor. He couldn’t snore at my feet when I
worked at my desk upstairs, or sleep next to our bed, or in it. The
veterinarian said that he didn’t need surgery but that he might never
get better.

As for my vision, I found that I didn’t believe the cyst had caused the
gap and didn’t want the shot to fix it. Robinson Crusoe, in Elizabeth
Bishop’s poem “Crusoe in England,” asks, “Was there / a moment when I
actually chose this?”—being stuck on the island. Then he admits, “I
don’t remember, but there could have been.” Was I more interested in the
accuracy of my ideas about my vision than in actually seeing? Or was I
avoiding hope so as not to be disappointed? That would be an emotion I
could feel without shame, but it didn’t seem familiar.

Cyst or no cyst, when I read, the last word in the line was now gone
until I looked straight at it. If I looked at Edward’s nose, his left
ear went cloudy. I still had to play games—deliberately look to the left
of something—to observe the blank, but the games were getting easier.
Coming home one night from dinner out, I glanced at our red front door,
to which we’d attached a small knocker shaped like a lion’s head. I
didn’t see it; it was the first time I failed to see something when I
wasn’t testing myself. I began to cry, and pressed myself into Edward’s
chest. Now and then, I seemed to glimpse, around an imaginary corner,
not quite the enemy but the misshapen bulk of the enemy. Of the sadness
that would come, if this got worse.

At each visit to the doctor, an assistant would have me read an eye
chart and ask how my vision was. I’d blurt out a long explanation, and
she’d write. From what the doctor said later, I’d realize that she had
written down just one detail. The doctor knew about the gap to the right
of center, but I couldn’t seem to get across the idea that the gap was
not the only anomaly. After seeing him, I doubted myself, afraid that I
was imagining the new losses, though he loyally said I wasn’t. When I
saw him at the end of October, the cyst was gone, but the blank area was
still there. He was quick to say that sometimes the brain took time to
respond to a physiological change. I didn’t protest.

In the midst of these doubts came Election Day, when I would finally
have the chance to vote for a woman President. In the voting booth, I
didn’t see where to mark my paper ballot. Finally, I turned the ballot
over and read the directions: you were to fill in an oval next to the
candidate’s name. Knowing where to look, I found it.

One effect of the election’s outcome was to put language itself at risk.
Being misunderstood has been part of my eye trouble from the beginning.
(Maybe that’s true for anyone with a rare disease.) Now the public use
of words as if meaning shifted at the speaker’s will added to my
anxiety. All of my problems—national, personal, dog-related—became one
large problem, which seemed related to whether the doctor and I
understood each other and whether I could blot out the Phillips screw in
the bathtub. (Yes, I still could, and now I could also blot out the lever
between the two screws.)

As winter began, I brought my computer and a spare desk chair down to
the kitchen, so that I could hear the dog snore. I thought about telling
the doctor what my vision was like by altering what I said to the
assistant. After trying out sentences on walks with Edward and the dog
(who still couldn’t climb steps but had resumed his full-length
walk), I decided on, “More and more, what I see is interrupted by small
bulges, gaps, and spots.” Then I devised a second sentence: if I got
through to the kind doctor, he’d be sad, and I’d say, “You have to ask
me about my vision, and I have to tell you, but that doesn’t mean you
have to fix it.” At my December appointment, I recited my first
sentence, and the assistant pivoted on her chair and typed fast. Reading
what she had written, the doctor looked sober and described a Web site
that made books available in large print. I was in a new category. I
spoke my second sentence, and he said, “Yes, but it’s frustrating.”

In January of 2017, I spent ten days in Vermont, as part of my job
teaching fiction in a low-residency M.F.A. program at Bennington
College. All year, students send teachers their work and receive letters
in return; in January and June, everyone convenes for ten-day periods on
campus. In the dim lecture hall, I couldn’t see my friends in their
accustomed places. I teased myself by blotting things out with both eyes
open—a light bulb on the ceiling, most of an exit sign. One day, a
student I’d just finished teaching (an able writer but prone to
calamity) stood in the lecture hall, a few rows in front of me. I didn’t
have time to see how much of him I could blot out by looking at a spot
to his left, so I closed my left eye and blanked him out entirely. Then
I felt horrified.

At a celebratory dinner, a friend asked what those marbles were in the
center of the table. What marbles? I reached for one. Yes, a marble. She
said that maybe it was a belated Christmas decoration—that plant with
red berries looked like holly. What red berries? I saw something dark,
leaned forward, and brought it to me: a plant with red berries. As she
and I walked to the next event, I said, “We need less vision than we
think. Mostly, I can manage life.”

“Yes,” she said. “Like when I drive in the dark wearing sunglasses.”

Later, I asked myself what I had wanted her to say. “But there is nobody
like you—you, with your terrible woe.” I’d hate it if she said that.

Trump was inaugurated a few days after I came home from Vermont. Edward
couldn’t stop reading the newspaper, emitting grunts and moans. I spent
my days at the kitchen table, revising a novel that I’d revised many
times already. The dog snored behind me. He still cried if he climbed
the stairs. My students e-mailed their work, and I printed it in
fourteen-point type.

Late in March, it was time to see the doctor again, but his practice had
moved to a nearby suburb. I had always walked to his office, but now I
took the bus, which left me at a snowy corner. The new office was down a
busy thoroughfare without sidewalks. I walked along the side of the road
as cars sped by, imagining my grandchildren’s grief at finding out that
I was run over on my way to the eye doctor. I survived the trip, and
didn’t need an injection, but the next day I made an appointment with a
different retina specialist, one within walking distance of my house.

As spring turned into summer, the edges of doorways, staircases, or
bookcases became soft, like shadows that might change as a curtain
moved. With my right eye alone, they were ugly, but with both eyes open
they were like a scene reflected in a still body of water. Reading, I
was surprised when I looked at the page number. Expecting page 80,
I’d be on page 64. I didn’t bother with some books, but others
felt worth the trouble.

When my students’ work wasn’t as good as I now needed it to be, I’d
become impatient. Because reading was harder, I needed better writing to
stay happy, and what I said to them may have reflected this new urgency.
But I knew enough to tone down my letters before sending them, and they
seemed to forgive my intemperate marginal notes. They responded to my
suggestions; their writing improved. By the end of the term, four of
five wrote fiction that I read eagerly. The fifth, however, dropped out
of the program. Distressed, I feared that my new impatience had made me
too harsh for this student. I’ve never been cool and judicious. Maybe I
would have scared this particular person out of the program at any time,
or maybe not. Maybe I had no right to impose my intensity on others, or
maybe it made me a keener teacher for the students who could stand me.

In June, I saw the new retina specialist, in a large practice associated
with a hospital. A resident, accompanied by a medical student, examined
me first: a small crowd considered my retinas. It was a little
embarrassing, a little like a party. These doctors first talked about
the grizzly bear, age-related macular degeneration. But when I said that
I’d been diagnosed many years earlier with macular dystrophy, they
became more curious, not less. My squirrel was suddenly an exotic
creature. The resident showed me photographs of the backs of both my
eyes, pictures of what I had been living with: a round white crater
against a gray background in the right eye; a smaller, similar crater in
the left.

The doctor also talked about my macular dystrophy, and he looked a bit
grim about a cataract in my good eye, which was already changing my
vision. Surgery isn’t advised for someone with only one good eye unless
there is no choice. It was sobering. But for the first time I stopped
doubting myself, which was so huge that, for the moment, it was

Back in Vermont, a week later, listening to a lecture on poetry, I
couldn’t recognize the speaker at the podium, though I knew him well. I
could now blot out all of the exit sign in the lecture hall by looking
to its left. At home, when I looked at our front door from the sidewalk,
I didn’t see the knocker. Looking at Edward’s nose, I no longer saw his
right eye. Walking the dog—who now climbed the stairs without crying,
and slept near my desk again as I wrote—I’d miss seeing something off to
the right, something I could see easily if I looked straight at it: a
man in dark clothes, say, standing near a tree.

Now and then I am lonely for someone who sees what I see. Look at the
knobs on the front of the cherrywood dresser. If you’d rather see
smooth, reddish-brown wood, look to the left of a knob, and it will
vanish. The detail goes away but the background color stays. That’s
with both eyes open, or with the good eye. With the bad eye, two knobs,
one above the other, disappear, and leave a dark gray blur. Nothing
beautiful about that. Maybe, if I live long enough, that’s what I’ll see
with both eyes. A reason to live in the present.


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March 13, 2018 at 04:39PM

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