A View Into
Twilight
By
Henry Grunwald
The Washington Post, July 18,
2000
In 1992, Henry Grunwald, the legendary former editor of Time Magazine,
realized he was having trouble with his eyesight. Later his doctors
diagnosed macular degeneration.
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
think of their fragility but also of their power.
For ages, the eye 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 eye plays a dominant role.
Living with macular degeneration means living in a half-veiled world. I
can still see a sunrise, mountains, buildings, can, in fact, see almost
everything -- but as if through a scrim.
I often have difficulty identifying people. Arriving one evening at a
Chinese restaurant in New York with family and friends, I walked up to
what I took to be the maitre d' and tried to shake hands. My son, Peter,
tapped me on the shoulder and said, "Who's your friend, Dad?"
The large statue of a monkey did not return my greeting.
Once in Paris, accompanying my wife Louise to a couture house, I
strayed into the fitting room by mistake. Before I beat a hasty retreat, I
noticed a half-dressed woman trying on a gown. A few minutes later, Louise
emerged from the fitting room and said excitedly, "Did you realize
that was Catherine Deneuve?" I had not. I have adored the actress for
years at a distance, and here I missed the chance to see her close-up --
very close-up.
Reading faces and the signals of mood and temper, which I had taken for
granted as part of the art of seeing, has become extremely difficult
except when I'm inches away. Eye contact is nearly impossible, which
eliminates a vital form of communication. "As a mother," my
daughter Lisa told me, "I am less upset that you can no longer scan
the damn newspaper -- I know you can get the news in other ways -- than
that you have a hard time seeing my children's faces." I have learned
to compensate by listening more attentively than ever (I have always been
a good listener) and I can quickly make out fatigue, sadness, or anger
from someone's voice.
When I drop a coin or anything very small, I usually have a hard time
retrieving it. But occasionally -- and I consider this downright perverse
-- I can spot a tiny object on the floor. A doctor explained to me that I
was probably looking slightly sideways on those occasions, moving the
blind spot in my macula out of the way.
Once when my son, Peter, came to see me, he was surprised that I did
not notice that he had started to grow a beard. On the other hand, I was
able to spot that one of his shoelaces had come undone.
"I'm never sure what you can and cannot see," he complained.
"That makes two of us," I replied.
The eye enables us to reach out into life. It means freedom,
independence. The lack of that independence is disheartening. Many
people's reaction to macular degeneration is denial. They continue to
handle money without being able to see it clearly, stab at the wrong
elevator buttons, and even drive cars far beyond the point of safety. I
also went through such a period. I would wake up in the morning, turn off
the alarm clock, and open my eyes. Everything would be in place: the
windows and doors, mirrors, desk, dressing table. It all looked a little
hazy, but that seemed natural in the subdued morning light. I would get
out of bed, put on my glasses, and pick up the day's paper, looking at it,
hard. The words were a blur.
For moments, I simply refused to believe that I could not read.
Nor would I believe that I could no longer easily find the tip of my
cigar with a match or readily locate ashtrays, paper clips, or scissors on
my desk, which became more chaotic than ever. Eating became a particular
problem. In the illumination found in most dining rooms or restaurants,
food in front of me was nearly indistinguishable. I have been known to
bite into a lemon assuming it a shrimp, or to try to slice a bone as if it
were meat.
The need to ask for help was at first excruciating. I might stand for
five minutes in front of an airport monitor, trying to decipher the gate
number of my plane before finally asking someone. Eventually, I had to
change my attitude, however reluctantly. At a street corner, I would no
longer hesitate to ask a passerby whether this was Sixty-eighth Street,
and on a plane if the seat numbers were too small, I would no longer
shrink from asking another passenger whether this was 16B. Of course it
was humiliating, but I came to terms with the fact that in some situations
it is foolish not to ask for help. At the same time, I recognize the
temptation to take the easy or lazy way and let somebody else do things
for me that with some effort I can do for myself.
I move around New York as much as ever, but with a healthy caution
crossing streets. I slavishly wait for the light to change (I can usually
see that) even if there is no traffic, and I have taken to crossing
alongside other pedestrians--especially women with baby carriages, next to
whom I feel very safe.
My greatest frustrations involve reading and writing. After a lifetime
during which these activities were as natural and necessary as breathing,
I now feel the visual equivalent of struggling for breath. Not until my
vision problems developed did I realize just how dependent I was on
reading in various forms, not only for work and pleasure but in countless
other ways: scanning magazine cover lines as I pass a newsstand, trying to
find a name and floor on a building directory, deciphering labels in the
medicine cabinet, glancing quickly through correspondence. Such fast sight
bites are now usually beyond me.
At first, I had the weird sense that this was somehow slowing down my
mind. I don't think it did, but the mental effort needed to absorb
anything like the same amount of information I did when my eyes were
intact is considerable--more so than I realized at first. I read labels,
addresses, menus, with handheld magnifiers, which takes time. I bought a
magnifying machine, which is essentially a closed-circuit TV set. A camera
focuses on the text and blows it up on a screen. Thus I can read as I move
the text back and forth under the camera, but this is laborious and slow.
Much of the time, I lack the patience to read that way.
I turned increasingly from the written to the spoken word. Having long
used recorded books during trips or stretches on the treadmill, I now
gradually came to do all my book reading that way.
I keep up with newspapers and magazines in various ways. Some services
offer readings from newspapers and books through special radio receivers,
but one cannot select the subject or the timing. The Internet carries the
texts of many newspapers and other reading matter which can be listened to
with audio software, but this requires help with using a computer.
Therefore, I have hired readers to record newspaper and magazine articles
on tape. (I am fortunate to be able to afford this.) Where I would once
open the paper in the morning to scan the headlines, a reader now does
this for me and I choose the stories I want to hear. I listen to the tapes
on a Walkman whenever and wherever I can--walking, riding in a taxi,
before going to sleep. This works well enough, but it is almost impossible
to skim on a Walkman as one does with print, and this is extremely
frustrating and inefficient.
Macular degeneration did not condemn me to the equivalent of polar
night, but it did make me restless and moody.
These emotional effects often seem more troublesome than the physical
ones. I think I have mostly overcome denial and faced up to my condition,
but there are relapses. Besides, the line between denial and heroic effort
is hard to draw. I continue to write, but I would not try to play tennis
and I would not want to be near a duck hunter with macular degeneration.
Anger? Depression? Yes. Unable to make out a film on television or to
pick out a CD I wanted to play, I have sometimes stomped out of the room
in fury. I have been known to hurl a magazine to the floor when, for the
thousandth time, I realized that I could not read print without
magnification, and I have cursed my various magnifiers as clumsy and
inadequate.
As my outward view dimmed, I was inclined to look inward. What I found
there often were mental pictures--pictures, for instance, of myself as a
child picking wild strawberries on a hot summer day, as a young man
flirting with a girl over a dry martini in an exotic bar, as an editor
going without sleep for 20 hours to put a magazine to bed. All this gave
me a sharp sense of loss. For some, nostalgia provides comfort, but I
think of it as a menace. Few things are harder to accept than one's lost
youth--except the loss of those one loves.
Inevitably, I thought about my own death. Macular degeneration is
labeled "age-related" for good reason--it is a constant reminder
of advancing years. As a journalist and watcher of the American scene, I
had always been struck by the extraordinary and paradoxical American
attitude toward the old. On the one hand, we try to be cheerful about them
and dote on stories about elderly people dancing and falling in love and
having sex and enjoying life like everyone else. On the other hand, we
assemble them in retirement communities, those voluntary and often quite
luxurious enclaves, like orphanages at the other end of life. I knew that
to many they are a welcome godsend, but in my imagination they were always
surmounted by clouds of forced jollity mixed with emanations of death.
At the same time, the old have acquired huge political power. We seek
to ban ageism and institute laws preventing it. But no legal rules can
replace the spirit still found in many other societies. There, the
experience and even wisdom of the old are prized, without anyone
pretending that age does not matter.
I was often less angry about my poor vision than about my aging; there
were things I could do to circumvent my visual loss, but there was nothing
to be done about the passage of time. I saw no redeeming feature in
growing old, and I hated the shrinkage of the future. I kept these
feelings mostly to myself, but, with her keen antennae, Louise sensed
them. "It seems to me that you are depressed and I understand
why," she said. "If I was losing my eyesight I would be moaning
and bitching and banging my head against the wall."
I finally recognized she was right. People who are depressed often
don't recognize it. I knew enough about the subject to understand I was
not suffering from clinical depression, the kind of paralyzing despair
that makes life unbearable. But I did realize that the mixture of fretting
about age and the frustration about my loss of vision was changing my
personality and my behavior. I lapsed into stretches of gloom and long
silences.
Louise urged me to take antidepressants. I resisted because I have
always had an aversion to drugs, including sleeping pills, and believed
firmly that one must cope with one's own emotions. But I finally gave in
and my doctor did suggest a mild dose of medication.
My depression gradually lifted, not only thanks to pharmacology. I was
cheered by the good reception of my autobiography and an article I wrote
in 1996 about my struggle with macular degeneration for The New Yorker.
Hundreds of people wrote that they had relatives or friends with macular
degeneration or suffered from the disease themselves. In letter after
letter, they confided that they felt less isolated, less lonely, less
confused because I had precisely reflected their own experience.
Not that my depression was lifted once and for all; it comes rushing
back treacherously at certain moments. I find that I must be permanently
ready to fight back against depression.
My small triumphs in difficult situations have come to symbolize a
larger truth: that I can still lead an independent life--and that
knowledge is a tonic.
Reprinted with permission from "Twilight: Losing Sight, Gaining
Insight," published by Alfred A. Knopf, a division of Random House,
Inc. 1999.
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