My brother Abram Ball died in 1998. He was twenty-four years old and had Down syndrome. At the time of his death he had been on a ventilator for years, been quadriplegic for years, had had dozens of operations. His misfortune was complicated, yet his magnificent and beautiful nature never flagged. He was older than me, though smaller, and I spent many years at his bedside in the hospital.
But before that time, when we were both children together, when he could still walk and play, although I was young, I knew that I would one day have to take care of him, that one day I would be his caretaker, and that we would live together, could live together happily. As a child I assumed that duty in my mind and it became a part of me. I forecast the ways in which it might happen. I even worried (as a boy) about finding a partner willing to live with my brother and me.
It occurred to me last month that I would like to write a book about my brother. I felt, and feel, that people with Down syndrome are not really understood. What is in my heart when I consider him and his life is something so tremendous, so full of light, that I thought I must write a book that helps people to see what it is like to know and love a Down syndrome boy or girl. It is not like what you would expect, and it is not like it is ordinarily portrayed and explained. It is something else, different than that.
But it is not so easy to write a book about someone you know, much less someone long dead, when the memories you have of him are like some often trampled garden. I didn’t see exactly how it could be done, until I realized I would make a book that was hollow. I would place him in the middle of it, and write around him for the most part. He would be there in his effect.
The relationship that I imagined as a child, that which I would have with my brother when he was grown, was very similar to that of a father and son, so I decided I would write a book about a father, on the point of death, who travels somewhere with his adult son, and that somehow, in the administration of those details, in and between the words, I could effect a portrait of Abram, as the son, and in doing so, would allow others to see what such a boy is like, or can be like.
In doing so, I was able, in some sense, to reenter the thoughts and ideas I had as a child—those I mentioned a moment ago, about how I would end up his caretaker, and what that would be like. A life is long, and we are many people, variously, in our guises, in our situations, but some part of us is the same, and what I felt as a boy I find myself able to feel now—a sad and powerful longing for a future that did not ever come, with all its attendant worries and fears.
I imagine some of you will recognize your own experience in these pages. I hope that others will find it a spur to new experience.
As I turned to lean my shovel against the rusted gray of the car, I looked in passing down into the grave I had dug, and saw there, along the face or wall, in trembling roots, the path I had traveled these several months taking the census in the farthest districts. As if by chance, my eye followed the slender red roots down and down into the grave, first left then left, then left then left, then right, then left then left, then right, then left then left, and always down. It was as if I could feel my hand upon the wheel, driving those field-wrapping roads and felt almost removed into the person I had been—someone like to myself, someone I myself might have known, someone bound in fact, as an arrow towards me, towards my heart and the place in which I now stand. Had I known him? Who is it that can claim at any time to know his own appearance, his own ideas? And yet we come back into ourselves again and again—there must be some recognition, something, even so slight. Must there be?
For me, I return to myself, I return and what I find is—that which surrounds me. The march of the hills that meets my eyes—it continues on within, uninterrupted. There is so little in me now to raise a cry.
I am waiting, and as I wait images circle—of my life, of my son, of these most recent days. Everything further is dim, and becomes dimmer still, though now and then something vivid arrives, something vivid breaks the frame and then, perhaps then most of all, I forget who I am or when.
Who can comprehend blankness? We as humans are so full of longing; what is blank eludes us. To be blank, to contain at your core, a blankness, it must be a talent—a person must have it, and must have it, possibly, from the very first. I have always had it.
In my time, I had read things, things like,
A census taker must above all attempt, even long for, blankness.
The fact that we mar our impressions, mar the scenes we enter by even our presence alone—it is something census takers carefully, gently even, pretend not to know. If we knew it, we could not even begin our basic enterprise. For us, the census is a sort of crusade into the unknown. Someone once said about it, into a tempest with a lantern. Into a tempest with a lantern—these are words I have said under my breath many times, though for me the feeling is not heroic but comedic. There is a helplessness to the census taker. The limits of what can be done are very clear. Perhaps it is this very element that draws those who do it to this terrible and completely thankless work. For it is clear that whatever good it might appear to do, there can really be no meaning in such a thing, much less in some infinitely small part of such an impossibly large endeavor. My wife, now dead, would laugh to see me in an old coat approaching houses. But, I feel it still, the warmth of the little lantern, the storm of the tempest.
Most of all it was my son who prepared me for this work, my son who showed me, not in speech, but in his daily way, that we are by our nature a kind of measure, that we are measuring each other at every moment. This was the census he began at birth, that he continues even now. It was his census that led into ours, into our taking of the census, our travel north.
“For us, the census is a sort of crusade into the unknown.”
It was his life, his way of thinking that made the work of the census seem possible, even inevitable.
But before that, before I went to the office to become a census taker, it happened that there was a notice given to me, not about the census, not about anything, but the opposite: about everything, a notice about everything. In some sense, a messenger arrived with an envelope and put it into my hand and at that moment I knew I was soon to die. In another sense, the way it would look from the outside, I was simply going about my business, I was speaking to a nurse in my practice, standing, gesturing in the hall. Next I knew, I was lying on my back in an examination room, and concerned faces hovered above, seeing me as if for the first time.
From there I went to see a physician, a friend of mine, who had a look at me. He poked around, prodded, stood scowling. I could do tests, he said, but I think we both know what the tests would show.
He laughed. That was his way.
We sat there for a while, and finally, he patted me on the shoulder.
But your son, what will he do? Would anyone want to take him? Who would that be? Would he go to a group home?
The way he said the word group home was awful. I shook my head.
I said there was a woman I knew who’d made an agreement with my wife and I. Her promise was, she’d watch my grown son, take care of him if anything happened to myself, my wife. She lived down the road a short ways, was undistinguished, unimpressive, gentle, wonderful.
I was leaving the room, he was showing me out, and he stopped. He adjusted my collar with his hand and nodded to himself.
I think you should stop working. I think you should go somewhere dry, somewhere to the north, near Z.
The trip would do you good. Think about it. There’s no need to die where you lived. It’s not nobler.
I got my son from the house he was at, the people he was with. They knew nothing of what had happened. I told them we were going on a trip, that my son would not be back for a while. They made a show over him about the trip, how nice it was to go on a trip. He was glad of it, and pleased. He had been building something with sticks, and he showed it to me. I told him I liked it, what was it. He didn’t like that I didn’t know what it was. Our house, he told me. Of course, I said, of course it is, I was looking at it wrong.
Back at our house, I walked around the rooms, from room to room. I thought, now I won’t live here. Not even my son will live here. Somehow no one can live here now.
I left my son by himself for an hour and went down the road.
You do look like you’ll die, she said. I never thought you would outlive your wife. I’ve done it, I said. But only just.
I’m going to take a trip, I told her. I’m going to go north doing the census. It will give us something to do, a last season together, a purpose that has essentially as much purpose as a thing can have, yet keep no purpose at all. My son and I can be together. We can see the same things and look at them. I’ll keep close to the train line, and then, if things get bad, my son will travel back. I’ll send word so you know to get him at the train.
She said it wasn’t the plan she would have made, but she could see it, why I wanted it that way.
One last trip together, my son and I. And maybe I’ll get better.
You might, she said.
I started to say some things about taking care of my son, about certain facts, or certain needs he had. I know all this. Just let me say it.
You can say it if you want, but I know it already. I’ll take care of him, don’t worry. It will be the same as it has been, whatever that was.
I know you didn’t like my wife, I started to say.
It’s your son who’ll live with me, not your wife, thank god. Don’t worry.
The next morning I went to the census office. I was there for a long time, and I left confirmed in a new appointment, a new profession.
My wife and I had always wanted to take to the road. Why don’t we take to the road she would say. But somehow it did not happen. Although in a sense my son was the best possible reason to take to the road, he also prevented this taking to the road. At any rate, while my wife lived we did not and could not take to the road. Yet immediately upon her death I felt that there was nothing for it but to take to the road. It seemed I should find some way to do that, and the census was one way, a clear path leading nowhere and then nowhere and then nowhere and then nowhere. It seemed obvious suddenly: I could become a census taker, and my son and I could take to the road and there were no obstacles.
I got my son, and we went to the house, we left the house, we set out on the road.
I felt weak. I have felt this way for years, though. I have kept on, have worked when perhaps I no longer should have practiced, because I wanted to keep my son in a good house, with good things. Ever since he was born, our lives, my wife’s, mine, bent around him like a shield.
For his part, he simply lived without regret. It is hard to feel someone owes you anything when they live without regret. What you do for them you do for yourself, isn’t it so?
From Census. Used with permission of Ecco. Copyright © 2018 by Jesse Ball.