I’m writing this while receiving a whole bunch of information on the first half of the 79th General Convention of the Episcopal Church, held last week and this week in Austin, TX. Perhaps there will be more on that later. Right now, I’m mildly incensed at how inaccessible much of the itinerary is; I’ve received more than a dozen reports of people in wheelchairs or walkers unable to get to locations of witness, into restaurants, to external events, and more. Visibility of disabled persons seems to be at a marked low; there are marginalized communities in our church that are raised up for witness and homilies thus far, on hotbed issues of gender, sexuality, race, immigration, sexual abuse, and more. But we’re largely invisible. And so I watch from a distance and lament our absence, in image if not in actuality.
It’s about being seen. about navigating the world before us, about independence and control of our place in all this, as real or illusory as that may be.
And so, here’s my place in that story.
Two weeks ago, I received my second generation prosthetic; much more flexible, quieter, lighter, and higher-tech. I wanted it to be beautiful. My first left leg had been named Daniel Day Lewis, as it was My Left Foot. This one was an art project; it’s a bright lacquered blue, and looks beautiful. It will eventually let me move like I used to, down to the patented Elliott Dance of Caucasia (it’s a thing). It’ll bring goofiness back to my physicality. And with that, I named the new leg Agadore Spartacus, after Hank Azaria’s faithful house-man in The Birdcage.
I thought a lot about my new leg, and intention, and how this was a full-bodied attempt to reclaim agency over myself. I wanted more expression with it to reclaim yet more of that agency. And so I hand-drew a tattoo for it: a bird leaving a cage, with MORE LIFE inscribed beneath.
And so it was fabricated with that tampographed on it, permanently. It wasn’t enough for me.
Five years ago, my friend Jamie passed away after his third go-round with cancer. We weren’t always friends; in college, we wanted to strangle one another on the regular. But sometime around 2009 we buried the hatchet and started swapping ideas. We became weird internet friends. And we got seriously sick at around the same time.
Being a writer and an information hoarder is useful and dangerous in moments like this, as I spelunk back to our last written conversations, before a brain tumor took his life.
He asked how I was doing. I said I was heavily in denial. And then:
I think a certain amount of denial is healthy. Obviously not total denial, but I can say from experience that the worst thing you can do is let it consume you. And, then the next day I’d be mad that the stuff from the day before passed by me, but it was my own fault because I couldn’t get my head right in the first place. I’m not implying that’s what you’re doing. I’m just saying that’s totally what I did wrong.
That, and pushing people away, especially romantic relationships. I don’t know what your situation is with that, but I know a lot of the time because I saw myself as “scarred” or something I pushed girls away because I thought they would see me as some sick person if they really got to know me, even after I was completely better. Everyone gets sick. Some people just not to the extent of others, and most people are far more understanding then we give them credit for.
It’s hard for parents to watch their children get sick, to almost die. And, my father, like when I’m well he doesn’t let me get away with anything, I mean a real hardass. But, when I was sick, the sky was the limit.
I’m beginning to think growing up is just realizing how little you knew the last time you checked. And, in another year you’ll probably realize that right now when you think you sort of have a handle on it all, in fact, you don’t. But, that’s okay. I think that’s the process for everyone, everyone who takes the time to think about it at all that is. Anyway, I’m glad that you’re doing well. It’s not an easy struggle. And, ultimately, there really aren’t any words of wisdom that can ease the experience. Though, don’t blame people when they try. That’s just human nature. But, I do genuinely believe now they every day above ground is a good day…just try missing one.
He had the word ENDURE tattooed over his heart. And now, after last week, I do, too.
More life. More art. More art used to connect ourselves to life, to express and exert influence over these beautifully built, traumatically altered bodies we are given.