More on disability

When I was ten years old, or maybe eleven, I felt like winter, like Christmas, was a dark and crystalline thing: all deep, enveloping night, all metallic press of cold wind on my skin. In church, seated beside my mother, I sang the fusty hymns we always sang every Sunday, the abbreviated doxologies, and recited with the larger body of the congregation, which was old and infirm, the various creeds that had come down through the millenia to us, to me. Which seemed a great mystery. At the advent of the holiday season, the choir director mixed in to our worship services a few of the old holiday chestnuts: "Silent Night" and "Little Town of Bethlehem" and "O Holy Night," which retains, for me, even now, a ravishing beauty at the moment of the lyric, "Fall on your knees, O! hear the angels' voices!"

It's that moment of being called to submit coupled with rapturous exclamation (O!) that made me feel like I was, in fact, falling, plunging. That it moved me so was, I think now, an early indication of a future love of poetry.

My church owned an old blue school bus, and inside it everything was hard and cold: the cushions of the bench seats had rotted some, thinned, stiffened, and the barks were gilded with decades of rust. Each holiday season the pastor would gather the children of the church and bundle us up in to the bus and at night we all would lurch in to the darkness.

We sang carols while bouncing about like elements of a pinball machine and when the bus stopped, when he parked it along the curb of a residential street, we would spill out in to the yard. We were there to sing carols to the oldest or sickest members of our church, the ones who no longer left their homes.

They were called the shut-ins. In our prayers, we were instructed to remember them. In our daily lives, we were urged not to forget them. To call, to come by, to bring gifts of food. These exhortations meant nothing to a boy, to me, until the first time I rode on that bus, packed tight with chattering, antic children, all of us cold and wary of that first home, its dry, medicinal interior air.

Old, their bodies were alien: threaded with blue veins beneath skin so thin it looked ready to tear and already had in many places, their clawed-up hands marked with wounds that were there to stay. Even while we sang in the cold, their incremental deaths were plain.

***

That term, "the shut-ins," felt final, fatal, in a way that was new to me when I first heard it. It sounded like verbal bric-a-brac from another era, too: falling into disuse, acquainted with the dust. Just as these people were. Who knew me by name, who had witnessed the youth of my mother, who had been young with my grandparents long, long ago. The term signaled their state but it also identified the responsibility we owed one another. Years later, my great grandmother would be shut in by blindness, by macular degeneration, stumbling the worn paths of her little house until, at age 100, she could no longer live alone, no longer safely cook or clean for herself, and went to live her last year with my parents.

After I broke my neck, when my arms failed to respond to therapy, she worried over them and devised her remedy: a gold nugget ring, cheap, as much as she could afford, on my finger would motivate me to show it off to people and by that movement I'd rehabilitate the daily fading strength of my arms.

I didn't have the heart to say no. I wore the ring for a few years, until it had to be cut away.

***

Many people have commented on the blurb John Ashbery wrote for my most recent collection of poems, My Index of Slightly Horrifying Knowledge. He writes, in part, "The invalid's rage ... and the ridiculousness of it all" inform the collection. As an aside, I can't recall what the ellipses elide, but I think it was a bit of padding which Ecco trimmed away. What's missing from his blurb, however, isn't so noteworthy as one thing which is present: invalid.

How could I allow myself to be called that? To some, even many, the word is inflammatory, hurtful, demeaning, discriminatory -- to add more adjectives to the catalog accomplishes little. The point is well made. I understand it.

Even though I considered asking for a change, I decided against it. The whole book had begun as a reaction to a previous publisher's insistence on selling the collection as a form of autobiography: every word, every line was a form of gospel, was true, had happened, was me. And that just wasn't true. Every writer understands how much of a fiction we make of our life. Every literature student is taught not to conflate the speaker of the poem with the person who had written it.

And, yet, we can't quite stop ourselves. We want to believe there is no separation. Maybe we need to believe it.

But it isn't true.

That minor irritation began to fuel the poems which would eventually become My Index of Slightly Horrifying Knowledge. I began to write poems which were patently false but appeared to be nakedly true. To investigate what post-confessional poems could be. I felt a puckish satisfaction in the sleight of hand. Soon, I realized I could write poems which, conversely, were more truthful than any I ever had and which might appear to be obvious fictions. The two could hide in each other's shadows, I've said.

This was liberating and energizing and I wrote more about my disability but perhaps not when a reader might think. One might never know.

To that end, in a collection filled with masks and unmaskings, mirror images, distortions, sketches, fabrications, confessions, loves, regrets, fears, frustrations, Ashbery's usage of invalid didn't bother me, in fact felt attuned to the book's project of shifting, uncertain identity.

I am not an invalid. I do not believe John Ashbery believes me to be one. I do not believe anyone who knows me, has met me, or has read my work will think that I am one.

Of this, I have no fear.