[Time Essay] Faces of Alzheimer's

By Patti Davis

The day after the first anniversary of my sister Maureen
Reagan's death, Charlton Heston announced that he
had been diagnosed with "symptoms consistent with
early stages of Alzheimer's." Sometimes in life, there
are odd juxtapositions of events-an interplay
of circumstances that makes one pause and wonder
what forces are at work. This was one of those times
for me. Maureen was so committed to defeating the
scourge of Alzheimer's, to getting more funding for
research and increasing understanding of the disease
that she sometimes delayed her own treatment for the
melanoma that eventually killed her.

Maureen would have tirelessly done interviews on Aug. 9;
instead, her husband Dennis Revell spoke to the media,
as did the actor David Hyde Pierce, who lost both his
grandfather and his father to Alzheimer's. My mother
released a statement. Maureen's voice had been silenced,
but her activism, her determination, were still present.

We learn about diseases through the faces of those
who are stricken. Famous faces garner the most attention,
obviously. When we think of Alzheimer's, my father's face
comes to mind. Or Iris Murdoch's. And now Heston's.

When Parkinson's is mentioned, we picture Michael J. Fox
or Muhammad Ali.

But there is another way that faces tell the story.

You have to lean closer, look carefully into the eyes,
study the set of the jaw and the tilt of the head.

I recognized more than the famous visage of Heston
when I saw his taped announcement. I saw the first shallow
waves of a cruel disease lapping at the edges of the person
he has always known himself to be. I recognized it because
I saw the same look in my father's eyes eight years ago.

In the early stages of Alzheimer's, the eyes have a wariness,
a veil of fear. It's as if the person is standing at the edge
of a fogbank, knowing that in time it will engulf him and
there is no chance of outrunning it. I used to see my father's
eyes simultaneously plead and hold firm. It would happen
when a sentence broke off because he couldn't remember
how to finish it. Or when he would say, "I have this condition-
I keep forgetting things." He was on a high wire, balancing
on courage, with the dark waters of fear below, and he was
using every bit of his strength to cling to that wire.

Slowly-sometimes over months, sometimes over years-
the eyes stop pleading. There is a resignation,
an acceptance of distance, strangeness, a life far from home.
You know the look when you see it, and the only mercy
is that fear seems to have subsided.

The eyes of family members change too. My brother Ron's
eyes show the sweet stoicism that men seem born
to possess. But looking more intently, I see the bubble
of pain beneath the surface. A father's helplessness has
to tear at the fibers of a son's heart like a dull blade.
My own eyes have too much history in them, I often think.
I was the little girl who worshipped her father, and the
young woman who hurt him the way daughters do when
their love is needy and true. Now I look at him in a soft,
maternal way, which still feels odd to me, even after all
these years. As if the laws of nature have been turned
upside down. My mother's eyes are frequently such deep
wells, I have to look away. A 50-year marriage is full
of intimate memories that live in the blood of lovers
and life partners-memories that are both benediction
and punishment. So much life has been shared, and so
much has been lost.

I could tell you that I don't fear getting the disease myself
because I know how toxic fear is, how paralyzing.
But in the next breath I would have to tell you that there
are late hours of the night when I lie awake and wonder
what fate has in store for me.

At other times, I study photographs of my father
from many years ago, or film clips. I don't want to forget
how his eyes used to look. Alzheimer's teaches
a harsh lesson- that the past is like the rudder of a ship.
It keeps you moving through the present, steers you into
the future. Without it, without memory, you are unmoored,
a wind- tossed boat with no anchor. You learn this
by watching someone you love drift away.

I woke last night and listened to the silence. It was a late,
deep hour, long after midnight, long before dawn. I thought
about how, for someone with Alzheimer's, silence must be
like a prison, another corner of the wasteland. There can be
nothing soothing or serene about it.

Perhaps the next time members of Congress assemble
to decide how much money to set aside for Alzheimer's
research, they should be asked to listen to silence
differently, as if it were a jail sentence. Maybe then they
would look into their hearts and know that if stopping
a disease that is stalking so many is not a top priority,
we have lost our collective heart as a nation.

(c) 2002, Time Magazine, Inc.

Distributed by Los Angeles Times Syndicate International,
a division of Tribune Media Services

SOURCE: Korea Times
http://www.korealink.co.kr/kt_op/200208/t2002081917100748110.htm

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