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Date: Tue, 11 Dec 2001 07:16:19 -0500
Subject: Michael Kinsley article
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From: Linda J Herman <[log in to unmask]>

Mary,
Here it is - found on Lexis/Nexis this morning. Super article - Pleas
post to list if you'd like.
L

 Time
December 17, 2001

SECTION: First Person; Pg. 72
HEADLINE: In Defense Of Denial;
A noted journalist, given a diagnosis of Parkinson's, makes the case for
kidding
yourself about bad news

BYLINE: Michael Kinsley

"   If you're going to get a serious disease--and, unless you'd prefer to
die
violently and young, you're probably going to--Parkinson's is not your
worst
choice. It is progressive and, at the moment, incurable. But, like its
victims,
it tends to move slowly. It is not generally fatal--meaning that there's
enough
time for something else to get you first. There is also enough time for a
cure
to come along, which might well happen if politics don't get in the way.
And
Parkinson's is fashionable these days. It's a hot disease, thanks to
celebrity
sufferers like the Pope, Billy Graham, Janet Reno, Muhammad Ali and
Michael J.
Fox. Even, they say, Yasser Arafat.

   I might not have chosen to contract this old people's malady at age
42,
although you must admit it's a pretty good joke on someone who used to
like
being precocious. If life is a race to the finish line, I'm years ahead
now.

   There are three ways to deal with news like this: acceptance,
confrontation
or denial. Acceptance is an aspiration, not a strategy. Confrontation
means
putting the disease at the center of your life: learning as much as you
can
about it, vigorously exploring alternative therapies, campaigning for
more
research funding and so on. Denial means letting the disease affect your
life as
little as possible. In fact, it means pretending as best you can that you
don't
even have it.

   To me, confrontation and denial seem like equally valid strategies,
and the
choice between them is one of personal taste. Most people mix 'n' match.
But
there is no question as to which approach has society's approval. Our
culture
celebrates aggressive victimhood. The victim--victim of almost
anything--who
fights back is one of the master narratives of our time, in plays and
movies, on
TV talk shows, in books, in politics, in lawsuits. Meanwhile, few things
are
more socially disapproved than inauthenticity or a refusal to face
reality. In
choosing confrontation, you embrace the "community" of your fellow
victims--another socially approved value. In choosing denial, you are
guilty of
"self-hatred," like a Jew or an African American putting on Wasp airs
or--worse--trying to "pass" as a white Christian.

   I don't mean to ridicule these notions. Even eight years along, I can
still
pass as healthy most of the time, or could until this week; but there has
been a
slight pang of disloyalty to the cause in doing so. A woman with multiple
sclerosis once said to me, unknowingly, about disease activists in
general: "We
all pray for someone famous to get our disease." Although I am a very
minor
public figure compared with the Pope--let alone Michael J. Fox!--I
haven't been
doing my bit.

   Nevertheless, when I got the diagnosis eight years ago, I chose
denial. If
ever you're entitled to be selfish, I thought (and still think), this is
it. So
I see a good doctor, take my pills most of the time and go about my
business. I
couldn't tell you some of the most basic things about Parkinson's and how
it
works. Modern culture may favor confrontation, but we are genetically
hard-wired, or at least I am, with a remarkable capacity for denial. It
helps,
of course, that the symptoms have been mild. Most days for the past eight
years
I've hardly given a thought to Parkinson's disease.

   In the early stages, Parkinson's is mainly a matter of foreboding,
which
makes denial an especially effective therapy. If you fool yourself
skillfully
enough, you can banish thoughts of the disease but retain a liberating
sense of
urgency. It's like having a Get Out of Jail Free card from the prison of
delayed
gratification. Skip the Democratic Convention to go kayaking in Alaska?
Absolutely. Do it now, in case you can't do it later. So what if you had
zero
desire to kayak in Alaska until faced with the prospect that someday you
couldn't? You want to now. And that's good. Although I wouldn't actually
recommend Parkinson's for this reason, the diagnosis is a pretty valuable
warning shot from the Grim Reaper. The victims of Sept. 11 had minutes to
list
their regrets. I've got decades to scratch items off the list.

   So I recommend denial--and defend it as a legitimate option. To work
effectively, though, denial requires secrecy, and secrecy pretty much
requires
deception. It's simply easier to go through the day not thinking about
Parkinson's disease if the people you interact with don't know you have
it. This
complicates the case for denial. Deceiving yourself may offend the
cultural
prejudice in favor of relentless self-knowledge, but it does not offend
me. What
you do with yourself in the privacy of your head is nobody else's
business. On
the other hand, deceiving those around you is more troublesome.
Especially if
you're a journalist, whose whole professional value system is wrapped up
in the
idea of the truth: demanding it of others, telling it yourself.

   For eight years I have tried not to tell outright lies, but there have
been
some Clintonian evasions and prissy parsing. (Q: "You look tired. Are you
O.K.?"
A: "I feel fine.") And my basic intention has been to deceive. So I'm
sorry
about that. Some topics--Is it decaf?--require absolute honesty. With
others--military secrets, noncontagious diseases--there may be legitimate
exceptions.

   The least a misfortune can do to make up for itself is to be
interesting.
Parkinson's disease has fulfilled that obligation, among other ways, by
plunging
me into a maze of deception and self-deception. I have no idea how well
my
deception efforts have worked, and I don't intend to believe everyone who
claims
to have known all along. But in the past couple of years, it seems to me,
the
symptoms have become more evident. There have been rumors. And the short,
somewhat random, list of people who know my secret because I told them
has got
longer--probably too long for all the pledges of secrecy to hold.

   I've come to assume that many or even most of the people I interact
with
every day actually do know my secret and are pretending not to. It's been
like
living in that classic childhood fantasy (which was the basis for the Jim
Carrey
movie The Truman Show) that what seems like reality is actually a giant
play
that everyone else is performing for your benefit. Only this play has a
Pirandellian twist: while people are putting on a performance for you,
you are
putting on a performance for them. Or are they? (And are you?) Even this
orgy of
mutual pretense was better than facing the truth in every dealing with
other
people, I thought, and still think.

   But eventually, plugging holes in the dike comes to seem more trouble
than
it's worth. So now I'm out. The next phase will be interesting as well.
Call it
part two in a controlled experiment testing those fancy French theories
about
disease as a social construct. I was officially, publicly healthy. Now,
with
almost no objective medical change, I am officially, publicly sick. How
will
that change the actual effect of the disease? Without, I hope, distorting
the
experiment, I predict that this notion of disease as a function of
attitudes
about disease will turn out to be more valid than I would have suspected
eight
years ago.

   Those around me who knew will be able to stop acting, but my acting
burden
will probably increase. Everyone I deal with will be scrutinizing me for
symptoms--loving friends and relatives most of all--just as I scrutinize
friends
and relatives who are chronically ill. Up to now my audience has been
either
nonsuspecting or constrained to pretend it didn't suspect. In the future
everyone will all know the script I'm trying not to follow. My
performance, to
be convincing, will have to be better than normal. If you're normal, or
people
think you are, you can clear your throat or trip on a rug or complain of
a
headache without raising alarms or eyebrows. When people know it is
partly
performance, you can't.

   Anyone who develops a chronic disease in mid-career dreads being
written
off--being thought of prematurely in the past tense. Three years ago, I
was
offered the editorship of the New Yorker. I told the owner I had
Parkinson's and
invited him to change his mind, but he generously said it didn't matter.
A few
hours later, though, he withdrew the offer with no explanation. I chose
to
believe him that the Parkinson's didn't matter. To withdraw the offer for
that
reason would be, among other things, probably illegal. But I also doubt
that he
would have made the offer in the first place had he known all along.

   Parkinson's is the disease most likely to be cured by stem-cell
research,
which is enmeshed in controversy. As I wrote in TIME a few months ago,
you can't
really criticize people whose reason for opposing research that uses
embryos is
that they truly believe embryos are fully human beings. But you can
criticize
politicians who try to escape this yes-or-no dilemma with calls for
compromise
or delay or prestigious panels to study the situation and report back in
a few
months. Can't they hear that sound of clocks ticking? Tempus fugit,
assholes.

   As we've all discovered since Sept. 11, the news is a lot more
interesting
when your life may depend on it. So that's another little plus of having
Parkinson's disease. I don't delude myself that the pluses add up to
equal the
minuses. Though I may give that a try.

   Michael Kinsley is the editor of Slate.com

Time, December 17, 2001



GRAPHIC: COLOR PHOTO: REX RYSTEDT FOR TIME, EVASIONS Kinsley, at home on
Seattle's Lake Washington, is tired of deception