In Defense Of Denial

(2 of 2)

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