“One moment Gus would be working in his wheelchair, the next moment his arms would become rigid, his legs would kick out, his eyes would roll up into his head, and his body would be seized with rhythmic convulsions.”
Gus’s limbs extended and retracted with stiff, staccato movements. There was nothing fluid about him: whether he was lifting his feet, inch by inch, from the floor to the footrests of his wheelchair, or was generating a smile, a smile that broadened in stages, he moved by degrees, like a series of freeze-frames.
Gus was slender and of average height. He had cerebral palsy and epilepsy. Because of his severe epileptic seizures, we had to watch him at all times, even in the bathroom. Usually he wore sunglasses to the Center, plus jeans and a T-shirt—often one emblazoned with a Ford or Dairy Queen logo. He had lived with his parents and sisters all of his twenty-four years, and had attended Special Education. His father had been in the military, which perhaps explains why Gus’s blond hair was sometimes clipped in basic-training style. He did have short sideburns, though, and often a day-old beard.
Gus had more grand mal seizures than any other client. One moment he’d be working in his wheelchair, the next moment his arms would become rigid, his legs would kick out, his eyes would roll up into his head, and his body would be seized with rhythmic convulsions. These might last thirty seconds, and only his seat belt would keep him from sliding off the wheelchair. On especially bad seizures, blood sometimes dribbled from the corners of his mouth because he had bitten his tongue. Afterwards he’d be in a daze. “You okay, Gus?” Smiling weakly, he’d nod his head. We’d take him to the nurse’s office, where he’d sleep for an hour or so.
Gus had to be wheeled throughout the Center, but in order to give him some exercise we did let him walk to the bathroom and back. He would totter like a newborn foal, so a supervisor had to hold on to a canvas strap that was tied around Gus’s waist. Gus would lean so far forward that he seemed about to topple over with each step, when suddenly he’d sling his back leg ahead and slam that foot on the ground, restoring a temporary equilibrium. The supervisor, supposedly in control, actually felt as though he were being yanked along by a kid in a halter—a grinning, lurching, 140-pound kid.
Taking Gus to the bathroom consumed much of the break period, so it was assigned to a different supervisor each week. When it was my turn, Gus would usually flip the light switch on as we entered the bathroom; then I’d shut the door behind us. Because of his seizures, Gus’s capabilities varied a lot: some days he was alert; other days he was in a fog. Most of the time, though, he could undo his belt buckle by himself. Then, after getting a tight grip on the waistband of his jeans, he’d give it a sharp jerk, unsnapping the button. Next he’d carefully arrange his hands—one to hold the top of his jeans steady while the other pulled the zipper. He’d get the zipper down after a couple of tries; then he’d slide the jeans down to his ankles. Positioning himself over the toilet, he’d simultaneously pull his underpants down and sit on the seat—a quick, practiced motion aimed at protecting what little privacy his life afforded.
Afterwards, with the aid of a support bar screwed into the wall, he’d stand, then draw his underpants up. After tucking his shirt into his underpants in a lumpy, uneven way, he’d pull his jeans up. He needed me for the next step: tugging and swearing at and eventually snapping his too-tight jeans at the waist. Gus drooled a lot, and whenever I worked with him I expected to get a little wet. The only time it made me cringe was when I didn’t see it coming: I might be focusing completely on his uncooperative snap, when all of a sudden I’d get zapped on the hand by a cool, dangling stream.
Next he’d try to pull his zipper up, but after a few unsuccessful attempts I’d remind him to use both hands. By holding the crotch of his jeans with his other hand, he’d finally subdue the zipper. After I buckled his belt, he’d stand over the toilet for a moment, swaying slightly, then stomp on the low-set handle, as triumphant as a wide receiver spiking the ball in the end zone.
Gus loved to speak, and sometimes on our way out he’d mold his mouth carefully, point to his shirt, and broadcast the words in stages: “Fo-ord!” or “Dai-ree Quee’!” He’d grin, then lurch over to turn off the light.
On the workfloor, Gus juxtaposed steady efforts with unsteady motions. On days when his drooling was under control, he could fill envelopes for mailing contracts. He also did some steelwooling: his large hand would rub the steel wool across the glass in a broad motion, but he could not make the tiny back-and-forth movements needed to clean individual mosaic pieces. He spent most of his time on training tasks, aimed at preserving what dexterity he had—tasks like hammering nails, tightening nuts, or sorting screws of different sizes. He always smiled when complimented on his work.
For lunch, Gus usually brought two bologna sandwiches with ketchup, a thermos of spaghetti or soup, an apple, and a quarter for a Coke. If he had something special, like a large chocolate chip cookie, he’d hold it up and call out, “Coo-kie!” At the end of the lunch period, his lunch pail, table, lap, and face had to be wiped off. His chin would be smeared with dried ketchup and soup and drool and crumbs—a residue that his rough stubble made especially difficult to remove. Throughout the day, Gus’s lap was a reliable indicator of his latest activity, depending on whether it was covered with noodles or bologna, sawdust or steel wool.
We often allowed Gus to stay in the lunchroom a few minutes late, but even so, he never finished his meal. Having to leave the lunchroom before he wanted to sometimes brought out the fighter in him. While a supervisor was getting him cleaned up, Gus might become sullen and unresponsive; then he’d clench his fist, flex his biceps, and swing at the supervisor with slow-motion ferocity.
Gus liked being one of the guys, so he usually ate with Chuck, Jerry, and Herbert. We’d put his wheelchair at the head of the table. Gus couldn’t converse much, but his sociable nature found other outlets. Laughing, he’d call out, “Her-bert!” or “Chuck-ie!” Or he and Jerry would take turns shouting “Boom-boom!” which was their nickname for Gus. He was liked and assisted by the other clients, who accorded him a certain status.
Gus’s spirit was great but his way was hard. About once a month he became a lunchtime lover. Unwinding his long arm, he’d reach across the table and latch on to the hand of Margo or Holly—two women who would offer no resistance. Gazing with longing into the eyes of his beloved, he’d keep her hand enveloped in his throughout the lunch period. Yet his aspirations outweighed his abilities, as his ardor could kindle no like flame in her. When Margo was the chosen one, she’d laugh at the ridiculousness of it all, while Holly, when chosen, would stare languidly in another direction, bored beyond belief.