Sunday, May 01, 2005

A beloved friend, vividly remembered

He was my friend, and he was unique.

I have to maintain confidentiality, so I won't use his real name. Let's call him Bruce.

Bruce was developmentally challenged from birth. He spent most of his life in an institution; everything was provided on site. There was a swimming pool and a bowling alley, for example. Medical and dental care were also provided within the institution.

It was rarely necessary for Bruce and his peers to leave the grounds. That's why, when I was growing up, I never met anyone like him. They were cloistered in a kind of parallel universe that did not intersect with mine.

Bruce was toilet trained and he learned to walk, but he never learned to speak. Not a single word. When people can't make themselves understood, they are bound to experience frustration, and they may become aggressive. When Bruce's caregivers couldn't train him to stop biting people, they had all his teeth extracted.

In the 1980s, when Bruce was in his 40s, he was moved to a group home in a residential community. That's where I met him: I became one of his caregivers.

New staff made Bruce nervous, and he had ways of testing whether they were up to the job. The first time I was left alone with him, he wet his pants. He was very distressed about it: the whole time I was changing him into dry clothes, he was wailing and slapping himself in the head.

Minutes later, Bruce wet himself again. I had begun to lead him down the hall to his bedroom when I had a sudden flash of intuition. I took him to the bathroom instead, where he sat on the toilet and urinated. If I had gone directly to the bedroom and dressed him in dry clothes, he would have wet himself for the third time. I suppose I had passed the test.

New staff found Bruce intimidating. He wasn't very big; it was the growling that scared them. I don't know how many decibels Bruce could emit, but it was most impressive. It was hard to talk over the noise once he got the engine going.

The thing is, Bruce growled when he was happy. The happier he was, the louder the growl. But new staff didn't know that. It was an aggressive sound to uninitiated ears.

Bruce would also slap himself in the head for joy. Sometimes the slapping was a sign of distress, but often he wore a great, sloppy grin on his face as he did it. And the slaps were not gentle — he really blasted himself.

Bruce had another habit that put people off: he constantly stuck his fingers in his mouth, which caused him to drool. Sometimes he would flick his hand and fling spittle across the room. People didn't like to touch him because it was a slobbery experience.

Before my time, someone came up with the bright idea of giving Bruce a briefcase to carry when he was out in public. They would hook arms with him on the other side to support him, since he was always unsteady on his feet. So both hands were occupied, and he couldn't stick his fingers in his mouth.

They'd abandoned that idea before I was hired, so I never saw him carry the briefcase. Just the thought of it makes me laugh, though — Bruce in the guise of a yuppie MBA.

I refused to be put off by Bruce's drooling, and we became great friends. When I came through the door at the beginning of a shift, he would hasten over to greet me, growling at 60 decibels or so. He would throw his arms out as if to hug me, an ear-to-ear grin, unimpeded by teeth, stretched across his face. I would grab his upper arms, and he would grab mine, and we would begin to sway back and forth, lurching from one foot to the other, in big exaggerated steps.

We would dance around in a circle, as if Bruce were singing instead of growling, our faces almost touching. I wish I had it on videotape. It is one of the happiest memories of my life.

There was a convenience store about three blocks from the house. That was a long walk for Bruce, but I insisted on getting him out for some exercise. In the beginning, he would walk a few steps and try to turn me back. But it became part of the routine, once I began to reward him with Cheezies and root beer.

We purchased a wheelchair for Bruce for longer outings. On gorgeous summer days, when I just had to get outside, I would take him for a long walk through the neighborhood. Sometimes he would object by pulling off his shoe and wailing, but usually he quite enjoyed it. He would rest his head in one hand and growl contentedly, watching people wash their cars, or children playing.

Sometimes I would walk beside the wheelchair, pulling it along from the side to make eye contact with him. I would talk to him as we walked. He would grin with delight, maybe slap himself, and reach out one hand toward me in a gesture of affection.

Bruce couldn't talk, but he could communicate very effectively with those who took the time to understand.

Two boys came over to meet him on one memorable occasion. They asked me a few questions and looked at him with unabashed curiosity. Suddenly their eyes lit up and their jaws dropped open. "How does he do that?", one of them asked.

"Do what?", I said. They were plainly amazed, but I had no idea why.

"How does he turn his tongue completely upside down?!" These boys weren't put off by Bruce at all; on the contrary, they were deeply impressed by his novel talent.

On another memorable occasion, I took Bruce to worship at a Salvation Army church. This sort of adventure was always risky. Bruce didn't like to deviate from his routines, and he could be quite unpredictable in public.

While we were sitting in church, Bruce was thinking to himself: "I don't know these people. That prayer was too long. I prefer stringed instruments to brass." Or something like that.

One could only infer Bruce's thoughts from what he did. On this occasion, he suddenly stood up and whipped his pants down — including the underwear — mooning everyone who was seated behind us. I thought we might be asked to leave but, to their credit, those Salvation Army folks didn't even blink. They came to greet us after the service, and treated Bruce with such respect, I looked to see if he was carrying his briefcase.

Sometimes Bruce became aggressive. Presumably he was in pain. His health was pretty good, but he suffered from chronic constipation. We gave him prune juice, mineral oil, fibre supplements, and a medication that was supposed to help. Despite all the attention we paid to the problem, it continued to trouble him.

One day Bruce looked at me and his eyes narrowed. He walked over and suddenly — whack! — he smacked me in the head. I had no idea he could move so quickly. It was another unsuspected talent. He had gangly arms, and he could swing them incredibly fast. I never saw it coming until I was struck by the bony hand at the end of the whip.

For the next hour, I had to avoid him. He didn't trouble the other staff, just me. I have no idea why I was the target of his aggression. Perhaps I had a little karma to work off, from the misdeeds of a past life.

Bruce died a couple months ago. He was nearly 60. Considering the extent of his disabilities, he lived a reasonably long life. I haven't worked at the group home for years, and I didn't hear about his death until the funeral was past. The world is a less colorful place without him.

Theologians never discuss this idea, but I think God loves variety. Human beings reward conformity, and we like people to stay within a narrow range of "normal" behaviors. Religious people can be the worst offenders, expecting everybody to believe the same things and behave the same way. But I am convinced that God loves variety.

Going into the group home was like entering a foreign country: a different set of rules applied to all the commonplaces of social intercourse. New staff were always off balance for a while, until they learned the little social graces.

That's the way it was with Bruce. I like to think I enriched his life; I know he enriched mine. No one welcomes me with a growl when I arrive at my current job.

He was my friend, and I loved him. I wish you could have met him. We'll not see his likes again.


For a social comment drawn from my group home experience, see Quality of life.


At 5:45 PM, May 02, 2005, Blogger Jack's Shack said...

That is a nice story. The world always needs more people who are willing to go beyond the superficial and look deeper.

At 3:45 PM, May 04, 2005, Blogger Stephen (aka Q) said...

My partner also knew "Bruce". She says she liked him because his emotions were completely unfiltered, like a child's. When he was happy, he was ecstatic. When he was unhappy, he was the very picture of existential despair. But even that was rather endearing, since we knew not to take it so seriously.

Her comment brings me closer to my own reason for loving Bruce as much as I did. At least some of the time, Bruce loved me. And when he loved me, there was no holding back: no uncertainty, no self-protection, no fear of embarrassment or rejection.

I made a very brief reference to Bruce reaching out one hand toward me in a gesture of affection. The memory of that gesture means a lot to me, but there are not words to capture the significance of it. It was a lover's gesture, but innocent of any sexual connotations. (As far as any of us knew, Bruce was at a pre-sexual stage of development.) What a wonderful experience, to be loved with utter abandon and purity! Again, the only apt comparison is to the love of a child.

And the freedom his disability afforded him! Just once, I'd like to express my disgruntlement at church as vividly as Bruce did when he whipped down his pants! Or on some other social occasion when people are taking themselves far too seriously.

I used to joke that I'd like to get inside Bruce's mind temporarily, to see what the world looked like from his perspective. But I admit, I wouldn't want to be trapped in there forever!


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