Picture this. It’s five in the morning. Your attendant hasn’t shown up. You call your backup, and then another, and somebody very grumpy finally arrives. With help, you get out of bed, get fed, get dressed for work. Then the lift on your van breaks down. You arrange alternative transport and get to work only two hours late.

Then your damn legbag explodes.

Let’s talk about this terrible thing that has happened to us; this affliction, this unmitigated tragedy.

How could life be so fickle that just when it shows us its glory, it’s plucked from us? Just when you’re going to grab the brass ring, you fall off the merry-go-round. The status quo is gone. Paradise is lost. Help me out here, I’m trying to milk this. I tell you, it’s a tearjerker.

Maybe the status quo is overrated. And maybe paradise isn’t something you lose, but something you learn how to recognize in ordinary life. And certainly paradise isn’t something permanent. If it doesn’t change, it isn’t life and it isn’t paradise. Why is a sunset so incredible? It’s because it’s so ephemeral. You know it’s already a goner.

Phil Simmons talks a lot about paradise. Phil has ALS, and you’re all aware of the prognosis. He knows his life is uncertain. But he says having his mortality and vulnerability — what he calls his imperfection — having that held up to him day after day isn’t all bad. He says it gives him a different perspective on paradise.

“The imperfect,” he says, “IS our paradise.” Not the perfect; the imperfect.

I like this idea. Don’t we get tired of cold perfection? It’s boring. How long can we listen to our favorite music or eat our favorite food without jonesing for something else?

Phil describes the beauty of a New Hampshire spring after a long New England winter — and how just as spring spreads its warmth, just as perfection is around the next bend, the bugs arrive. In biting swarms, in swarming misery.

“Only during bug season,” he says, “does your skin feel fully alive.”

“Would we recognize the embrace of soft spring without the hard bite of winter?” he asks. “Would spring be so sweet without knowing the bugs are on the way?”

The imperfect is our paradise. No freezing winter, no paradise. No bugs, no paradise. No hell, no paradise. No imperfection, no paradise. No exploding legbag, no paradise.

As one of my family’s elders used to say, “Don’t rehearse the future.” We can’t know what’s ultimately good or bad, or what leads to hell and what leads to paradise. Life is fundamentally unpredictable. Everything that happens is interconnected in ways we can’t possibly know, can’t possibly forecast, leading to events we can’t possibly imagine. Life is absolutely and forever … unimaginable.

Phil wants us to see that everything — both the sublime and the sordid — it’s all divine. Your most improbable victories and that mortifying involuntary you had at your sister’s wedding, all the unimaginable events in our lives — they’re all sacred. They’re all life.

I don’t mean to trivialize disability. It’s hard. It’s like a bomb going off in your life.

I don’t mean to trivialize disability. It’s hard. It’s like a bomb going off in your life.

But we need to find a space in ourselves where none of that matters. Not denial, not a place where we’re hiding from the world and ourselves and our pain, but a place that grows and heals and projects to others.

I don’t call it a place of acceptance. Phil does, but I don’t feel I can say that yet. I’m still not sure I’ve accepted my disability. Paralysis is still an ultimate bummer. I wrote in Options in 1980 that I’d rather kick my wheelchair than look at it, and I still feel that way. Acceptance is easier to talk about than it is to practice.

What works better for me is the idea of detachment. To have a really bad time, and do it consistently, we have to give our own pain something to hang onto. By “pain,” I mean our emotional pain.

Have you ever tried to lift a person who’s gone completely limp? There’s nothing to grab, no place to get a purchase. I think it’s possible to be like that with the pain of having a disability. We don’t have to be attached to it.

We have to acknowledge it. But if we don’t cooperate with it, it doesn’t stick to us as much. Our pain becomes like the weather. It can be filthy rotten and undeniably out there, but it doesn’t have to govern our lives.

And here’s the very simple point, as I think both Phil Simmons and I see it: When we surrender our beliefs about how life ought to be, we can learn to love it as it is.

Or as Edith Wharton so elegantly put it, “If we weren’t trying so hard to be happy, we could all have a pretty good time.”

The imperfect is our paradise. Hold that thought.

Lessons Learned

After 33 years of SCI, sometimes fighting and sometimes dancing with the grandmother of invention, it seems I should have learned something. But when I ask myself what that is, what come to mind are all the blunders I’ve made. As Oscar Wilde said, “Experience is simply the name we give our mistakes.”

You already know about some of mine.

I crashed in a Wilderness Area.

I didn’t get my rehab at Craig.

I was slow, terribly slow, to embrace my disabled peers. Too much like looking in the mirror.

That’s such a mistake. We don’t all have to reinvent the wheel, even if we do have to reinvent ourselves. …

Another mistake was this dumb division of my life into two separate lives. To a large degree, I rejected what I was calling my first life. I didn’t maintain a lot of my best friendships. I dropped my old interests. I didn’t exactly withdraw from life, but I did start over. I’ll always be poorer for that.

With the benefit of hindsight, it’s easy to see that there is no first life, no second life. There’s this life, and it’s everything we ever hoped for. It’s the brass ring we thought we had missed, the imperfect paradise we thought we’d lost.

I just can’t tell you how very imperfect it is, or how very tired I get of being disabled. Of all the crap that comes with it, of the constant financial drain. I can’t tell you how much I wish I could take a vacation from all of that.

But none of that matters. In spite of all the change and difficulty, life doesn’t change. Life is still complete and terrifying and drop-dead gorgeous, and I have just as big a piece of it as anyone else.

Excerpted from a speech, the 25th annual John Young Lecture — The Conquest of the Ordinary: Sermonettes from a Second Life — given by Barry Corbet at Craig Hospital on June 1, 2001. For the full text, click here.

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