Falling Apart

All of this began to wear on Ed, who acquired a haggard, dispirited look. If I asked him how things were going, he’d shake his head, then laugh without humor and say, “Oh, don’t even ask, Gren.”
Author

In the late 1970s I was a construction superintendent for a homebuilding company in Houston. Occasionally guys like Ed would stop by the job site. They always had strong hands and thick fingers, so you knew they had done plenty of work, but you weren’t sure how good it was. Ed had the same hands—not small and soft, like many of our clients; no, Ed had the hands of a day laborer and the skills of a day laborer, and maybe the life of a day laborer as well.

The peripatetic laborers who happened onto our job site usually looked rough and weathered, and so did Ed. He was missing a few teeth, and the ones that remained were yellow and crooked; his clothes were often dirty and always rumpled; and his glasses were held together with white bandage tape. He was usually unshaven, which was probably just as well. When he did shave, and slicked back his thinning hair, his scrubbed head and face seemed strangely unnatural, like a mechanic whose hands don’t look right unless the pores and fingernails show traces of grease.

These itinerant construction workers would drift from job to job, sometimes living in a garage apartment until they got behind in the rent, then moving on. Ed himself lived in a ramshackle trailer on the edge of town. Even at age fifty-one, he got into occasional late-night fistfights with Bill, a client who lived next door. Ed had once been a heavy drinker, and still had the look of an ex-wino who was just barely holding it together.

Invariably these nomadic job seekers bragged about their versatility—“Done concrete, done sheetrock, done carpenter’s work, done it all”—but their work was often ragged, the bare rudiments. Likewise with Ed: the glasses he grouted were never wiped clean, and the ones he antiqued were riddled with globs of paint. Yet Ed would hold his glass up and look at it admiringly, then ask with assurance, “How do ya like the looks a’ this one, Gren?” Before coming to the Glass Department, he had worked upstairs in the shop, though there were other clients—clients whose intellectual disabilities were more readily apparent—who ran the saws with much greater precision.

He was ideally suited to one job, however. When the glass contract was just beginning, Ed spent weeks covered with bits of grout and mosaic glass and dried glue as he used a knife and steel wool to tear down (strip to the bare glass) a number of supposedly finished glasses that had failed our inspection—a harsh, dirty job he took to immediately.

Ed was the only client who drove a car, and his intellectual disability was classified as borderline. He talked mostly with staff, seldom with other clients; in fact, I think he saw himself not so much as a client but as an indispensable old hand. Sometimes when I passed by his grouting table, he’d say to me, “I’ll betcha you’d miss me if I went back up to the shop, huh Gren? [Laughs knowingly.] If I was absent a few days, I bet you’d just wanna pack up and go home! [Laughs again.]”

I liked Ed, but he was never one of my top workers. He overestimated his abilities, and couldn’t handle as much as he thought he could.

Ed had been at the Center for several years when Sharon started there in 1980. One day at the campground, as an experiment, I had the clients work in pairs. I matched Sharon with Roland, then watched the division of labor that evolved. As they walked along, their trash bag swinging between them, Sharon’s high, excited voice frequently carried across the field we were cleaning. “There’s one, Roland—look! A cigarette butt! Look! Down there. Right next to my foot. Don’t you see it, Roland? Right there,” she’d say, tapping her foot. Sharon would giggle with delight as Roland bent over to fetch it. Then she’d call out, “Glenn, Glenn, we got one, we found a cigarette butt! I think Roland and I make a good team, huh Glenn? Don’t you think we make a good team?”

In the Glass Department, Sharon worked in Ellen’s assembly area, where her production was erratic. One day she’d complete nine perfect glasses, but the next day just two, and even those only after much prodding. A lot depended on her moods: some mornings she wanted to pick a fight with the first person who got near her; other mornings she overflowed with affection, hugging everyone in sight, talking about how incredibly nice people are.

Sharon was diabetic and had Prader-Willi syndrome, a complex neurobehavioral disorder. Genetic in origin, its most distinctive feature is an insatiable appetite: a person with Prader-Willi syndrome never feels full and thus has a constant craving for food. If her food intake is not carefully managed by others, she is likely to gorge herself, resulting in life-threatening obesity. The obesity, in turn, may lead to Type 2 diabetes, heart disease, or respiratory difficulties. In addition, people with Prader-Willi syndrome usually have intellectual disabilities, ranging from mild to moderate. The syndrome also affects social behaviors; common manifestations include temper outbursts, aggressive displays of stubbornness, and attempts to control or manipulate others.

Sharon, twenty-two years old, was 5’1” and 190 pounds. Both the Center and her group home tried to monitor her food intake, but Sharon was bright enough that, when no staff were nearby, she could talk other clients out of their food or steal it from their lunch boxes.

Sharon read at a fifth-grade level. Some days at lunch she’d read a romance novel or a western; other days she’d labor over a crossword puzzle, asking staff one question after another about definitions, spelling, and pronunciation. One of the teachers at the Center taught her how to balance a checkbook, and Sharon was the only client I knew who queried us on our piece-rate system, wanting a detailed explanation of how her pay was calculated.

In terms of intellect and abilities, Sharon was nothing like Grant, yet she could be just as unstoppable when she was looking for a fight. A seemingly trivial problem was often her springboard to a confrontation with staff. Her emotional stake in the conflict would escalate the more she talked about it, as she whipped herself into a crying, protesting, screaming fit. Supervisors she hadn’t worked with very much were especially likely to be challenged.

One morning, instead of going straight to her seat, Sharon poked along beside the other work stations, eyeing them enviously. She was smoldering. At each work station there was a pair of clippers, used for cutting the mosaic pieces. Suddenly Sharon reached down and snatched Candy’s pair. Candy cried out, “She stole my clippers!”

Deborah, an experienced substitute, was taking Ellen’s place that day. She looked up and said, “Sharon, put those clippers back, please. Those are Candy’s.”

“What about me?” Sharon snapped. “I need clippers, too.”

“There’s a pair over there at your table.”

“Those clippers aren’t any good. That kind doesn’t work for me. I need this kind.”

“Sharon, I’m trying to get Mike started on his work. Please go over and sit down. I’ll help you with your clippers in a minute.”

Reluctantly Sharon returned Candy’s pair. She walked slowly toward her table, scrutinizing the other clients’ tools along the way. She stood by her chair for a minute, then exploded: “I just can’t use these clippers!”

“Sharon, what’s the problem?” Deborah asked. “Just try them.”

“I have tried them before. They don’t work. They break everything in little bits!” She said the last word with extraordinary fury, and she was close to tears.

“You have a whole tray of pieces already cut,” Deborah said. “That’ll keep you busy a long time.”

“No, it won’t. I want my clippers!”

“Sharon, I’m busy right now. I’ll help you as soon as I can. Now please get to work.” Deborah turned and went back to helping Mike.

But Sharon was going to be heard. “I won’t get to work! Not till I have some decent clippers. These clippers are no good. They ruin the pieces!” By now her voice filled the basement, and everyone stopped working.

“Sharon, knock it off.”

“I won’t knock it off! Give me my clippers! I won’t use these clippers. They aren’t worth shit!”

Deborah had done all she could, but clearly Sharon was not going to settle down. I walked over from the steelwooling area and said, “Come on, Sharon, you need to leave the workfloor.”

“She won’t give me my clippers.”

“Deborah tried talking to you about it, but once you start yelling like this, you can’t stay on the workfloor. Let’s go.”

She wasn’t moving, so I took her arm and we started toward the door. She was crying by then, but that didn’t lessen her anger. At one point she squirmed and turned back toward Deborah. “Everybody else gets good clippers. It’s not fair! I got my rights!” I led her out to the hall, where she grabbed some empty boxes and flung them against the wall, then pounded furiously on the door. After that she quieted down.

When everyone else went to break, Sharon crept back to the workfloor and stole Candy’s clippers. Roger, ever vigilant, somehow discovered this, and when I came downstairs after break, he told me in hushed tones. By this time Sharon had returned to the hall. I went over and asked her about the clippers, but she said she wouldn’t tell me where they were unless I promised to let her use them. I said no, I wouldn’t make that kind of a deal, and added that she couldn’t go to the lunchroom until the clippers turned up. A few minutes before lunch, she handed them over.

Ed and Sharon met at the Center, and in late summer 1981, Sharon began walking away from her group home and spending weekends at Ed’s trailer. In September they became engaged, and on October 24 Sharon moved out of her group home and into the trailer. Five days later they applied for a marriage license, only to find out that a recent injunction temporarily prohibited the issuance of a license to Sharon. They were told that on October 26 Sharon’s father had requested the injunction and had asked to be appointed her legal guardian based on her developmental disability.

Sharon resolved to fight her father in court, and received a sympathetic write-up in the Great Falls Tribune. (Sharon’s situation prompted the Tribune to write the story about the marriage of Joyce and Gary Mundt the following week.) The article indicated that Sharon probably had the same legal right to marry as any adult, but it also pointed out that without supervision, she might begin overeating, putting her health at risk. In addition, the article noted that by moving out of her group home, Sharon had lost her slot there.

Several days after the article appeared, Sharon’s father withdrew his requests for the injunction and for guardianship. By the time Sharon and Ed were free to marry, however, they had already spent the forty-five dollars needed for the blood tests and marriage license on groceries. So they put their wedding plans on hold but continued to live together.

For a while they did all right. Ed seemed solicitous of Sharon, and she tried to plan balanced meals and learned to cook different dinners. Working at the Center one day, she sighed quietly and said, “God, it’s tough being a housewife.”

But as winter set in, things began falling apart. Ed’s water line froze and his sewer line burst. When his dog had puppies, Sharon insisted on keeping two of them, so they ended up caring for more dogs than they could afford.

Meanwhile, Sharon’s weight ballooned—to 200 pounds, then 220, 240. After passing 250, she refused to step on the scale at the Center any more. Her body seemed to have been inflated: her skin was stretched thin, and her hips became like great balls. She learned a new way of walking, her legs splayed, her arms swinging wide to the sides. Often she’d stop to lean against a wall and catch her breath. Her wardrobe diminished as her clothes began to tear, until finally she was left with only one pair of pants; and even on these, the seams started splitting along the insides of the thighs. Her shirts could no longer be pulled down over her stomach.

Sharon also contracted genital warts—a sexually transmitted disease caused by the human papillomavirus—and the resultant fluid discharge prompted the Center to set aside two chairs and one toilet exclusively for her. The disease produced an overpowering stench, and this was magnified by Ed’s water and sewer problems, which kept Sharon from washing either herself or her one pair of pants. I have a pretty dull nose, but just walking past her was about as much as I could take. One morning the assembly crew was hard at work when Ken said to no one in particular, “’Is room stinks.” So Ellen had to open the windows to the winter cold.

All of this began to wear on Ed, who acquired a haggard, dispirited look. If I asked him how things were going, he’d shake his head, then laugh without humor and say, “Oh, don’t even ask, Gren.” Increasingly, Sharon would have him call the Center to explain why they’d be absent that day—phone calls that sometimes left him in tears.

One evening a supervisor saw them at Pizza Hut. The place was crowded, and Sharon was going from table to table, asking people how soon they’d be done eating. Ed was following behind, mumbling, “Come on, S’aron, let’s go.”

Sharon’s diabetes, which previously had been under control, gradually became a problem, as did her high blood pressure. She was admitted to the hospital for a week in early 1982 and received laser treatments for her genital warts. The day after she returned home, Ed phoned the Center, crying because he couldn’t handle her.

A few weeks later they spent two nights at a Salvation Army shelter because Ed was afraid some exposed wires beneath his trailer might set it on fire.

In March Sharon returned to the hospital for more laser treatments. Talking to me one afternoon, Ed said, “Gren, I think I’m gonna have to find another place for S’aron to stay. S’e needs a place where s’e can bathe, but I’m gonna hate like hell to see her go.” He said she had done her share, buying the groceries and managing the money, while his income had gone for the trailer and utilities.

Ed was also worried because he was driving around with license plates that were a month overdue, and he didn’t know when he’d be able to afford new ones. In 1981 he had received a workers’ compensation settlement for an accident that happened years before, but he told me that money had already been spent.

By late March Sharon was back at work. She complained about being constantly stiff. In bed, she could now lie down only on her back, but from that position she could barely get up. Working in the glass assembly area one day, she began fuming: Ed had made her come to work that day, so the discomfort she was now feeling was his fault. Furious, she got up from her seat and was about to go into the grouting area and let him have it, when Ellen intercepted her.

That happened my last week at the Center. Several months later I learned that Sharon had been admitted to Boulder. The institution had its own hospital as well as intensive care wards for residents with behavioral problems. It was perhaps the only place that had the staff and facilities to deal with Sharon’s complicated mix of medical, emotional, and behavioral challenges.

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