Last Song from the Big Chair

“There is no doubt I loved the guy and his strength of heart,” Geno says. “What a character he was. But he was not a saint. None of us are.” Larry Kegan was not a saint, but he was truly loved. That doesn’t mean he was easy. He’d look at me seeking conciliation. He’d say, “We know, we’re both difficult.”

I met him while I was researching When Billy Broke His Head…., my documentary film. I started going over to Kegan’s to see what the disability territory looked like when you’d been here a while. He must have been in his early 40s back then, had the diving accident when he was 16. Life in a chair had lost its dewy newness for Larry.

There’s a scene near the beginning of my film that starts with Kegan in bed, and Alfonso, his attendant-caretaker-pal, dressing him for the day. Alfonso lifts him out of bed and throws him—ka-bam!—into his chair. Kegan was a big boy, remember. The startlingly loud sound of Kegan hitting that chair is a slap to the audience, reminding them that this isn’t the cute-cute, special-special, safe TV image of disability you’re always shown. That sequence where he gave us access to unpretty Larry was the beginning of a beautiful friendship.

A lot of people have chosen not to see me as disabled, including family members. The National Brain Injury Foundation calls brain damage “the hidden disability” because it’s difficult to see and so few people recognize it. One boyhood chum who doesn’t acknowledge my disability said, “I don’t think Larry Kegan would think you’re disabled.” S
o I asked Larry if he agreed. Kegan laughed and said, “No, you’re in the club.”

Larry and I had learned to trust each other in the 16 or 17 years since we met—both of us fighting it all the way. In the decades that I’ve been disabled there are only a couple people I’ve been able to be so direct and non-rhetorical with. We talked about sex and relationships—plenty raw and private stuff; about art, music, and movies. We both got our master’s degrees from the same Speech Communication Department at the University. He embraced Orthodox Judaism and became a Lubavitcher toward the end of his life and tried to pull me in. (I couldn’t make that scene. Larry was a praying Jew; I’m a lox-and-brisket Jew.)

For the last few years we’d talk on the phone almost every day, sometimes a couple times a day. The phone would ring and I’d hear his hello and say, “Who is this?” faking naivete.

“Your brother! This is your BROTHER!” he’d answer forcefully.

“How ya doin’?” I’d ask.

Often as not he’d come back, “Not as good as you.”

After When Billy Broke His Head… was released, I must have passed Larry’s test and he gave me solid emotional support and shared himself. He’d have himself driven over to my house and we’d sit in his van drinking Arabic coffee and listening to rock or blues on the cassette player because I’d never been able to afford a ramp into the house. During the summer sometimes we’d sit in my backyard. We were brother gimps. Larry and I both knew what it feels like to be treated as The Other—and less than. He’d talk about how somebody would speak to his attendant, or the person who was with him, over the top of his head and never look at him. So he’d say to them, “I can’t walk, but I CAN TALK.”

At Larry’s funeral Dick Cohn remembered being in Mexico, when they were going to some Mayan ruins where no whites beside archaeologists had ever been. The locals stared at this big guy being carried off the boat in a wheelchair; couldn’t believe it. But that was Larry. One time in Mexico, Dick Cohn and Geno stood Kegan up, threw his arms over their shoulders, and just stood there. Kegan’s legs shook as three buddies stood around that jungle campfire. Larry said, “Man. I can’t tell you how good this feels.” His friends held him up for as long as they could, the ache in their muscles reminding them that he couldn’t stand, couldn’t walk, and any moment it’s back in the chair forever. Still, the three of them stood—stood!—near the fire shaking their fists at that bully disability.

On the beach in Belize, Dick and Geno got an old inner tube from a truck tire, blew it up, and dragged him through the sand to the warm water of the Caribbean. They yanked his arms through the inner tube, put a snorkel and mask over his face, and floated him out into the clear blue and then just tipped him up like a duck and let him breathe under water as they floated around the bay. He’d grunt when he wanted to surface, the three friends laughing about what a wonderful thing life is.

Billy Golfus is a Minneapolis writer and filmmaker.


Posted

in

by

Tags:

Comments

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.