Progeria: An Exercise.
I had thought I had written about a singular experience. It certainly was for me.
I sent this essay to a friend, Craig Smith, to look at. A fan (I am delighted to say) and a trusted editor and critic, I wanted him to take a look. I expected advice, suggestions, some way to fix a grammatic gaff. I must have expected, or suspected, something or I would not have sent it.
It’s good. I think the revelation of the progeria was a little overdramatic; so many people have seen kids with progeria on talk shows (Maury Povich had one on nearly every week, it seemed) that your shock–or your character’s?–while
understandable, doesn’t need quite the big build-up.
What? On TV? So popular culture and the media has desensitized America to what, in my life, was an experience that sat upon my memory in a way unlike nearly any other.
What did I reply?
Hmm… Interesting as I have never seen a child such as this since. This is the only one. So it feels real to me but will not translate into the culture because of talk shows have widened the exposure of most people to things that I have little exposure to.
In other words, what I find a novel and shocking, many people have become inured to. So what seems overdramatic, to me, is actually my process of realization. But it is not reading that way to those who have more experience than I.
What else has pop culture ruined? Now wonder we no longer shudder at gross injustices and horrific torture. No wonder we have so few heartstrings left to pull.
But, still, I felt I could pull the essay off. I’d like for you to be the judge.
Please read. There’s a quiz at the end.
I don’t remember what year it was. The mid nineties, perhaps. I was working as a skip tracer, finding people who had run out on sizable debts, dropped financial responsibilities, were hiding mobile homes, trailers, boats and whatnot-of-size from repossession. I found them, someone else hauled ‘em, arrested ‘em, collected ‘em.
It was a great job. Lots of day trips, I nearly never got a Doberman set on me or a shotgun pointed at me. Rarely was I shot at.
I was chasing a trailer. I think it was in Florahome, or nearby, where we would go to pick blueberries and scuppernogs. Where the sandpears grew. East-central north Florida. I was on the hunt. I scammed the records, recorded the address, and found the narrow washboard road in a short space between the live oaks.
It was a long slow drive. I stopped from time to time to let the newly-hatched wild turkeys follow their mothers across the road. Slowed to watch the dear in the thick. At length, in the distance, I saw the trailer. Continuing slowly, I pulled into the small space in front and checked the description. It fit. I got out, went to the door and knocked.
It was a singlewide and shorter than the norm so, after the initial knock, it took no more than a few moments for me to notice the creak of approaching footsteps. The door opened and I was greeted by the smallest old lady I had ever met, saying hello, puffing though stringy white hair and wrinkled mouth, in the voice of a young girl. Resting on the knob, an ancient hand.
I asked to whom the home belonged and she answered in words a child would use. From behind her, a young woman approached and, as she neared, spoke to the elder as though she were not aged, not senior, but barely of experience. As though she were her child.
And the old lady answered as if she were, indeed, a child. Her child. Then, I knew, this was not right. So far from what I could have possible expected, I did not grasp the facts through the seemingly paradoxic cues. Something was wrong in an order of magnitude I could not comprehend in the scant time I had. But my body reacted even as my mind slowed and halted. Perhaps I could not keep my face. I remember my stomach tightening, my diaphragm rising toward my chest. My body knew.
The taller woman was her mother. The first person to the door was her child. This was an old child. She looked ninety. She sounded ninety. Her words and behaviour were nine.
Her mother asked her to go back inside while she remained to talk with me. I could require no explanation but needed one. What I had just seen did not fit. It was something I could have thought would come from a horror movie, from a science fiction film. Here it was. I could not ask but needed to know. She could see that.
She was nine. She told me this. She started aging at two. She would die of old age by eleven. It was called progeria. They moved out of town because they could not stand the idea she would spend her short life growing old to the cruelty of children, the whispers of adults and the stares of all eyes.
And so here they were – out in the country, one fewer job, a family, a ninety year old child.
I could not say don’t worry. I could not say everything would be ok. There was little I could say but good bye.
I know she expected, in the next day or so, to lose her home in the forest and the anonymity of the woods. But, that I know of, that never happened. The records were lost. Markers disappeared. Officially, I never found the house.
I was reminded of this today. I cannot say quite what the connection was but it came to me of a rush, strong and vibrant. I, of limited visual memory, have the meeting of that child as one of the few clear visions I retain. I feel it as though it were fresh, new, shocking. It remains one of the staggering moments of my life. It was important in a way I cannot still fully appreciate. It lasts.
It came to me last week. When my mother was telling me she might have herself trepanned and electrified to fight her Parkinsons. That she might have breast cancer.
And it came to me again today. I held a rabbit in my hands. In the overbearing heat, in my yard, a rabbit, running, running, then not, small tongue, darting in and out and then still. Then stiff. In my arms, how much it seemed sleeping.
Good night little girl.
So here are the questions:
Do you think pop culture has experiential essays, such as this, less effective?
Does your knowledge of the disease lessen the impact?
What worked and what did not?
Is there anything you would change?