The Secret of
The GodsThose dummies at PBS put together a program on my own disease, polio, in 1998. With characteristic insouciance, they titled it "A Paralyzing Fear." And with characteristic financial arrogance (it's the public trough again) they spent some $750,000 putting together what is rumored to be a rather hum-drum, dull-bulb documentary.
They called me as they were beginning the project. They wanted to come out and interview me since I was, after all these years, some kind of an expert. Me, with my PhD in Cripology.
The caller was a second-year graduate student in media studies at one of those dreadful shopping-center universities. Our conversation went something like this:
He: What was it like?
Me: What was what like?
He: What was it like when you got polio?
Me: What was it like?
Here I am on the telephone, with some geek from the University of Magoo Media Studies Department, and he wants me to talk about the fever and those weeks when they had to tie me to the bed and the nights they ran the fire hoses in me and the horse needle up my spine, and my brain crazy with the ache of it all.
Me: You want me to talk about that now?
He: So I can get some kind of an idea. Of what it was like, you know.
Me: I don't know. Look, couldn't we just wait until you're here. All that stuff runs pretty deep. I can't just crank it out at the drop of a hat. You understand, don't you?
No, he didn't understand. In fact, it was exactly the wrong thing to say. You know how those public-documentary people are. All that money (three-quarters of a million smackers!), the crew and director and sound man and production manager flying out here to interview some reticent nut-case who might not even say anything worth recording.
Despite my losing a chance for fame, I still have a tale to tell. What I need, I suppose, is someone on the order of Morley Safer to ask me the questions.
Morley: Do you have any advice for the newly disabled?
Me: Camus wrote that every day we choose to live, but we choose only once to die. When we do finally make the choice to keep on, he said, we should opt to live life to the hilt. Pull out all the stops.
That's more my style. The elegant interview. The dignity of two professionals, me and Morley.
Morley: What's it like, being disabled?
Me: When I was 19, it was like being in the body of a 65-year-old. Now that I am 65, it's like being 19 in a 95-year-old body.
Morley: What do you learn first when you are disabled?
Me: To be obsessive. Very, very obsessive.
Those of you who are like me (crutches, gurney, wheelchair, back brace, body on its last legs, various bottles and tubes sticking out here and there) will know exactly what I mean by obsessive. For instance, if we want something from across the room, we have to be very very specific. We don't say, "Get me that book." We say, "Could you reach that copy of Kierkegaard off the top shelf for me; it's the one with the black cover and a piece of paper stuck in the middle."
If I drop something on the floor - - - my pen, say - - - unless I have another in my shirt pocket, or unless there happens to be someone else in the house, my writing is done for the day. Ditto if I knock out the power cord to the computer with one of my foot-pedals.
Morley: They say that being disabled makes you more sensitive and caring, more appreciative of the problems of others.
Me: Right. And it makes us more insightful, or more bitter, or more open, or more tricky, and . . . and sometimes, for some of us, more wise. The loss of body is something that cannot be imagined. You can read all the books, see the movies, do disabled studies, think about what I and the others have said: and you can never ever imagine what it's like.
(Good question, excellent, intellectual response. Now this is an interview!)
Morley: Do you have final advice, Lorenzo?
Me: What happened to me and my friends is a bellwether. It's going to happen to everyone. All will age. Everybody's body will go to pot - - - guaranteed - - - and everything I am saying will come to be understood with absolute crystal clarity.
You and your friends? It will happen to them. Your family? They will someday be as disabled as we are. Your enemies? Forget hate; it'll come to them, too.
It will happen to your neighbors, to the politicians, the movie stars, the public figures. It will come to the despicable money-grubbers, the arrogant rich, the bureaucrats, the mercenaries and the terrorists. The sweethearts, the gentle folk, the angels? It will happen to them, too. They'll all learn what my disabled friends and I learned so long ago: that the healthy, functioning body is a wonderful gift, but it's also a time bomb. Some-day it will blow up. And, in the process, it will blow your minds.
And after I say all this, I'm thinking: Should I really be saying all this?
The secret that we have, about this car-bomb body - - - why should we be so eager (and so cruel) to want to tell the world? Why should we want to spit in the soup? Life is hard enough as it is, no? Why should we want anyone to know, ever, what it's going to be like when their bodies start going out on them?
All these things we know about the body gone nuts, the world of catheters and ventilators, wheelchairs and lifts, pressure sores and personal care attendants - - - why don't we just leave these as our secrets?
I'm remembering the lesson of Œdipus. He forced those around him to tell him the secret of the curse, the terrible curse that came, because of him and his mother. And look at how they stuck it to him once he learned the truth. Look at how he stuck it to him . . . once he got the picture. ¡Mama mia!
We shouldn't want anyone to have to know the truth. Leave it; just leave all the "temporarily abled" in the dark.
It's the least we can do for them.