How Did You Respond to Having Parkinson’s Disease?

Michael Kinsley’s hot new book about Parkinson’s disease and old age in general (Old Age:  A Beginner’s Guide) is witty, informative, provocative and a lot of fun.  Many of the chapters appeared elsewhere as magazine articles, including my all-time favorite read, “Have You Lost Your Mind?”

Here’s a passage I’d like to share with you.  I hope you will respond to it in the comments section.  You can react to Kinsley’s statement (see except below) and/or you can relate your own narrative about your diagnosis and how you dealt with it.

Let’s begin.  On page 20 of his book, Kinsley says that when you learn you have a disease like Parkinson’s, you can respond in one (or more) of three ways.  Here’s his exact text:

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 funds, perhaps organizing a fun run in your community.  Denial, on the other hand, means letting the disease affect your day-to-day 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 of than inauthenticity or refusal to face reality.  In choosing confrontation, you embrace the community (key word) of your fellow victims – another socially approved value.  In choosing denial, you are guilty of self-hatred, like a gay person who’s still in the closet, or a Jew or an African American putting on WASP airs or – worse – trying to pass as a white Episcopalian. 

…

Nevertheless, when I got the diagnosis in 1993, I chose denial….I defend denial as a legitimate option.

What do you think?  Do you recall how you responded (and are still responding) to your diagnosis?  Did/does your response fit in one of these three categories?  Do you think there’s a fourth or fifth way to react to the news?

Obviously, I chose “confrontation”:  I’m a public face with the disease.  I keep reading as much as I can about it.  I’m tied in with the online PD world.  I’m out at work.  I raise money for Parkinson’s research.  But I feel weird when Kinsley contends that I’m a victim.  I’m not a victim.  Or, if I am, so is everyone who comes down with a cold, loses their hair, gets arthritis, develops a pot belly, has an earache.  To my mind, being a victim implies (1) you’re weaker than the force that’s victimizing you, (2) you deserve sympathy from society because of your status, (3) you’re hurt or damaged.

If someone shot me with a gun and I died, I’d accept the designation of “victim.”  But in fact, I feel mostly fine about having Parkinson’s, even though it’s a hassle.  By the way, the original meaning of the word “victim” was “A living creature which is slain and offered as human or animal sacrifice, usually in a religious rite” (thanks, Wiktionary!).  Thus I say, “I am not a victim.”

I recognize that other Parkies may not think this way, and that many Parkies are suffering with stressful and debilitating PD-related maladies.  I may be in that position in the future, but so far it hasn’t happened.

Now it’s your turn!  How did/do you respond to having Parkinson’s?  Write your thoughts below.  And if you want to lambaste me for being callous about living with PD, go right ahead!