Sometimes I Feel Like
Stephen Hawking Must Feel
After A Bad Night

Those dummies at PBS have recently put together a documentary on my own disease --- polio --- which will be released this summer.

With characteristic insouciance, they have titled it "A Paralyzing Fear." And with characteristic financial arrogance (it's the public trough again) they've spent some $750,000 putting together what is rumored to be a rather hum-drum, dull-bulb documentary.

As they were beginning the project, I got a call from them. They were thinking about coming out and interviewing me since I was --- after all these years --- some kind of an expert. Me, with my PhD in Cripology.

The caller, a second-year graduate student in Media Studies at one of those shopping-center universities said, part-way into our conversation:

    HE: What was it like?
    ME: What was what like?
    HE: What was it like when you got polio?
    [Long pause.]
    ME: What was it like?

Here I am on the telephone, with some geek from the University of Nowheresville 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 garden hose up my cock 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 ancy those public-documentary people are. All those cameras, 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 half-assed nut case who might not even say anything worth recording. I mean, if he won't talk on the telephone, what can we expect when we're there in his living-room with all that expensive equipment?

          

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, the caring interview. The dignity of the professionals (me and Morley).

    MORLEY: What's it like, being disabled?

    ME: When I was nineteen, it was like being in the body of a sixty-five-year-old. Now that I am sixty-five, it's like being nineteen in a ninety-five-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 Kirkegaard 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 --- and 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 powercord to the computer with one of the foot-pedals of my wheelchair.

    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 bitter, and sometimes, for many of us, more neurotic. 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 imagine what it's like.

    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, every 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, some day, be as disabled as we are. Your enemies? Forget hate: it'll come to them too. It will happen to your neighbors, the politicians, the movie-stars, the public figures. It will come to the despicable money-grubbers, the arrogant rich, the impossible bureaucrats, the cruel mercenaries and 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 is --- the healthy, functioning body is a stupendous gift --- but it's also a time-bomb. Some day it will blow up. And, in the process, it will blow your minds.

          

All while I am writing this I am thinking: should I really be saying all this?

The secret that we have, about this car-bomb body ... why should I be so eager (and so cruel) to want to tell the world? Why should I want to spit in the soup? We should just let people discover their own on their own, right? Life is enough of a royal pain-in-the-ass as it is. Why should we want anyone to know what it's going to be like when their bodies start going blooeyon them? All these things me and my crip friends know about the body gone screwy: the world of catheters and ventilators, wheelchairs and lifts, pressure-sores and personal care attendants. Why don't we just leave these secrets in the dark, where they belong?

Remember the lesson of Oedipus. He forced ... forced ...those around him to reveal the secret of the curse, the terrible curse that came about because of him and his hanky-panky with his mother. Look what happened to him (and the world) once he discovered the truth.

Leave it. Just leave the "temporarily-abled" innocent, naïve, down-home, blind ignorant.

It's the least we can do for them.

--- Lorenzo W. Milam

[This article appeared in slightly different form
on the OpEd page of the
Los Angeles Times]


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