Eminent American writer Michael Kinsley explains why he has spent the past eight years pretending not to have Parkinson's
http://www.guardian.co.uk/Archive/Article/0,4273,4318783,00.html
Thursday December 13, 2001
If you are going to get a serious
disease - and, unless you would prefer to die violently and young, you
are 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 is 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 doesn't get in the way.
And Parkinson's is fashionable these days. It's a hot disease, thanks to
celebrity sufferers such as the Pope, Billy Graham, Janet Reno, Mohammed
Ali and Michael J Fox. Even, they say, Yasser Arafat.
I might not have chosen to be diagnosed
with this old people's malady at the age of 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 am 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 centre 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 and 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 television talk
shows, in books, in politics, in lawsuits. Meanwhile, few things are more
socially disapproved of 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 Jewish or 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 are 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 favour 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 have 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 skilfully 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 September 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 is 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 favour
of relentless self-knowledge, but it does not offend me. What you do with
yourself in the privacy of your own head is nobody else's business. On
the other hand, deceiving those around you is more troublesome. Especially
if you are 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 OK? 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,
non-contagious 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
efforts at deception have worked, and I don't intend to believe everyone
who claims now 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
rumours. And the short, somewhat random, list of people who know my secret
because I told them has grown longer - probably too long for all the pledges
of secrecy to hold.
I have 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 has been like living in that classic childhood
fantasy (which was the basis of the Jim Carrey movie, the Truman Show)
that what seems like reality is actually a giant play everyone else is
performing for your benefit. Only this play has a Pirandellian twist: while
they 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 pretence
was better than facing the truth in every dealing with other people, I
thought and still think.
But, eventually, plugging holes in
the dyke comes to seem more trouble than it is worth. So now I am 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 now
be able to stop acting, but my own acting burden will probably increase.
Everyone I deal with will be scrutinising me for symptoms - loving friends
and relatives most of all - just as I myself scrutinise friends and relatives
who are chronically ill. Up to now my audience has been either non-suspecting
or constrained to pretend that it didn't suspect.
From now on they will all know the
script I am trying not to follow. My performance, to be convincing, will
have to be better than normal. If you are normal, or people think you are,
you can clear your throat or trip on a rug or complain of a headache without
raising 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 magazine a few months ago, you can't really criticise people
whose reason for opposing research that uses embryos is that they truly
believe embryos are fully human beings. But you can criticise 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 have all discovered since September
11, the news is a lot more interesting when your life may depend on it.
So that is 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.
This article first appeared in Time
Magazine. Michael Kinsley is the editor of http://www.slate.com/
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Michael Kinsley
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