Barry and I shared a pretty good laugh a few months back, right around the occasion of the 15th anniversary issue of New Mobility. I didn’t know it at the time, but he had already been given his final diagnosis. Could have fooled me–Barry was upbeat and chronically unsentimental as ever. He indulged me with a moment of reminiscence as we mused that this thing we had kluged together at his kitchen table over tea and gin had the energy and audacity, and luck, to have reached adolescence. We were tickled to revisit the formative days–back when I was labeled a hyena for making paralysis look like fun, and when Barry was compared to Larry Flynt for publishing photos of women of libido–and to realize that we have now become the caretakers of our own myth. We decided to leave things be. I’ll remain the hopelessly laid-back artiste d’opportunite’and Barry will forever be the fearless heart and soul of graceful survival.
The story is basically true: I set out to build an information network around spinal cord injury, heard about a guy who lived 35 minutes away who not only had written a nifty little book about 50-some-odd people describing the richness of life after paralysis (Options: Spinal Cord Injury and the Future) but who also had done a pair of groundbreaking films about what he would call the gimp experience (Changes, from 1973, and Outside, from 1980). He might be a good guy to run some ideas by.
Just one hilltop before you get to Barry’s, just west of Denver, is the Cabrini Shrine, a site named for Mother Cabrini, a missionary beatified by the Pope for tapping her cane on a rock in 1912 to create a fresh water spring; it flows there to this day. You can also get to Barry’s pad the long way, out of Golden on the Lariat Trail to Lookout Mountain; this takes you by Buffalo Bill’s grave, and sure enough, the western showman’s neverending last act continues one hilltop the other side of Barry’s. The Corbet house offers a magnificent view of the Colorado Front Range to the west. Even with the encroachment of cowboy pilgrim tourists and numerous foothill fortresses built along the I-70 corridor, Barry’s house feels remote and isolated and very peaceful.
I remember well the first time I met Barry, in his basic uniform of denim and a vest, wearing hiking shoes. He was instantly likeable. This is true: if Barry had told me to scram, this thing’s not worth doing, for sure not by an itinerant AB, I would definitely have scrammed. He invited me to come back, though. I greatly enjoyed his focus, his nonjudgmental wit, his lack of drama. We always started out with jasmine tea, somewhat contemplatively, then as the sun set, switched to Tanqueray, sometimes unrestrictedly. Eventually, I offered him a gig to write something in what was shaping up to be Spinal Network. He thought it over and came up with a terrific approach, one that dovetailed with his own needs, and those of his cast of characters from Options.
He never asked about getting paid–a good thing because he didn’t get anything for quite a while later–but elegantly updated his original profiles from the perspective of getting older with a disability. As he was coming to know, paralysis seems to grease the skids of the grim slide. To have known Barry over the past 25 years or so was to witness the decline and fall of the human machine–the man was the poster boy for premature aging, starting with the shoulders. There was also chronic pain, pressure sores, unstable gut, and the long-term effects of incontinence. You can’t say for certain that his final secondary condition–bladder cancer–was disability related, but the odds lean toward it.
I was fortunate to have a chance to say goodbye to Barry. Can anyone really know how to prepare for this sort of thing? A friend loaned me a copy of Tuesdays with Morrie, the bestseller about Morrie Schwartz’s last days and his lessons for us all that death is not the point, life is. Barry, in the unforced manner he did most things, made the visit comfortable and, well, normal. He was funny and light, and conversational about things that, to be sure, were inconsequential. Barry was so gracious and calm you would have thought, as he did, that there were no regrets for a life well-lived and no reason to fear what was coming. The only reminder that this was indeed a farewell visit was a hand-written DNR over his bed.
I had the brilliant idea that it might be good to “bottle up” some of what made Barry Barry–in the interest of legacy, for those people who would never get to come to his mountain. I suggested that we might meet regularly in the coming weeks to make a sort of final record. A “Wednesdays with Barry” sort of thing: I bring the food, he becomes the bridge to help us better understand the passage from life to death.
But I knew as soon as I’d said it that the idea was going nowhere. Here was a man lucid and at peace with his own mortality, and my inner hyena is looking for an interesting angle. He said no thanks, there wasn’t any more he really needed to say. “Whatever I have had to say, I have already said it–it’s in the ‘Bully Pulpits’ and the pieces in the magazine.”
I thought about it for a minute. I realized that my little project would really have amounted to a way to prolong my own letting go. But the time had come. This was it. I would be leaving in the morning before he’d be awake. It was time to say it, to tell him how much he meant to me, to tell him I loved him and how much he would be missed.
“It’s just fine,” he said. “There’s a lot of love here.”
I will miss the man who once wrote, “there’s no escaping the greatest adventure of them all–being part and parcel of the solar wind and the play of starlight, of the pull of tides and the convergence of hearts–this luminous life that is denied to no one.”
I will miss his luminous spirit and the clear aperture of his mind.