Matthew Thomas - We Are Not Ourselves

She hadn’t spent an entire career in health care not to pick up any allies along the way. Her friend Emily, whom she’d hired at St. John’s Episcopal, had an in with the state attorney general’s office. Emily had a representative from the office call Maple Grove and get them to drop the demand for up-front payment. Eileen would pay the fee for the first month, $5,800, while the Medicare paperwork got sorted out. Medicare would cover the first twenty days at 100 percent and the next eighty days at 80 percent after a copay. Then she was on her own.

She called Lawrence Hospital and had them fax in the application for her.

• • •

“They’re going to transport him tomorrow,” she told Sergei. “Maybe you can stay awhile in case I need help with anything. He may be coming back, for all I know.”

Sergei nodded as if to say he hadn’t imagined it going any other way.

“I’ll pay you, of course,” she said, but she had no idea where she was going to get the money. She would have to figure out these details later. Right now what was important was getting through a difficult time.

In silence they ate the dinner he had prepared. Something in his face, maybe the roundness of it, took the edge off her anxiety. He seemed to prefer mute expressions to speech, two in particular: a half glower that reminded her of her father’s, and a wide-eyed, almost innocent smile.

After they finished eating she dismissed him as he started to clean the dishes. He protested and would only leave the room when she insisted that she needed to use the kitchen phone to spread the news about Ed. She called as many people as she could, until it got to be too late, even accounting for time zones. She left the bunker of the kitchen to face the rest of the first floor, turned off all the lights, and walked up the stairs to the lonely bedroom to pack a bag for Ed.

It was a preposterous exercise. She couldn’t reduce his wardrobe to a few essentials at a moment when everything seemed essential. There was also the problem that what was essential to Ed wasn’t always essential to her. Some of his favorite shirts should have become cleaning rags long ago. She took out the bag they used for short trips and started filling it with three or four of everything; then she brought down a bigger bag from the attic. She would have time later to figure out exactly what he needed, but she wanted him to have enough in case of mishaps the first few days. Then she saw his peacoat. It was missing buttons and threadbare at the elbows, wrists, and collar. He looked like a homeless man in it, but he’d insisted, perversely, on holding on to it, as if he’d never left the cold-water flat he’d grown up in. His stubbornness drove her crazy. And yet his lack of interest in material things had allowed them to save a good deal of money relative to their incomes. She held the peacoat in her hands until she almost broke down, then put it back on a hanger and took a newer coat from the closet.

• • •

She walked through the day in the haze of her lack of sleep, feeling her boss’s eyes on her, as if Adelaide could sense her mind was somewhere else. They moved Ed at noon, but she couldn’t call. She wanted to pull Adelaide aside and assure her that she had no aims on her job, but how could she do so without seeming insubordinate? She felt lucky to have a job, but she saw no way to communicate that without smelling of desperation. Once Adelaide sensed weakness, she would surely seize on it. Eileen didn’t blame her entirely. Mayor Giuliani’s office, in its push for health care efficiency, had HHC working middle management to the bone. Ruthlessness was more or less demanded of Adelaide if she wanted to keep her job. Eileen had been on the other side of these managerial squeezes, at St. John’s Episcopal. It had bothered her at first to think that her days of carrying the heavy burdens of upper management were behind her, but now she didn’t care at all.

It was time now to be smart — smart and strong. She wondered whether she’d ever have a chance to be foolish and weak. She feared it would be when everyone else was foolish and weak again too, only this time around there wouldn’t be anything romantic about their foolishness; they’d be old and doddering and needy. At least she wouldn’t be alone in it, the way Ed was. Ed was surrounded by people, but there was no one in that building like him at all. He was younger; he’d given up more of life. But there had rarely been anyone anywhere like Ed, even when all had been well. He was smarter than most, more sensitive. In that regard he was more prepared for the loneliness of senescence than she was. He’d been a stranger in the world for most of his life.

After work she drove up to the home. She made her way to the circular reception desk from which the hallways radiated. Below the counter ran a ring of binders with red labels on their spines bearing the letters DNR, for Do Not Resuscitate. She had indicated in her application that she wanted this designation for Ed, but still that stark, resigned lineup took her by surprise. An odd few didn’t say DNR, and it filled her with shame to see them, because it meant those families hadn’t given up hope, or they were willing to stick it out until the end, the very end, the end of science and technology.

She was directed to a television room. Wheelchairs were arranged around the perimeter. The room was full of women older than her husband, some by decades, whose gazes seemed directed less at the program than at the light the set cast. There were a few men, frail and reduced; she didn’t spot Ed at first, but then there he was, hidden behind a man who distended and released his cheeks as though blowing on a tuba. Ed looked as if he’d been caught in a traffic jam. He was moaning quietly. When she stood before him, his moan turned into a wail, and he pumped his arms up and down. She wheeled aside the tuba player, who looked at her skeptically as he puffed out, with an audible pop, the air he’d been holding in. She asked at the desk to be directed to a common room, thinking not to disturb Ed’s roommate.

Ed wailed and thrashed, trying to twist in his seat to get a look at her. When he made to rise, the seat belt stopped him, and if he tried to rise farther, the barest push on his shoulder made him fall back in the chair. After making a couple of turns at the end of corridors, she arrived at the common room, which was blessedly empty. She closed the door behind her and wheeled him to a wicker chair, where she sat facing him. He continued to wail. She tried to soothe him with a hand on his shoulder and he slapped it away. She tried to touch his face and he motioned to bite her. He was seething through his teeth. She insisted on smoothing his hair. He looked wild, unkempt. Already they had dressed him in an outfit that looked shabby and unmatched. She would have to speak to them about that. The easiest way to get them to give him good care was to let them know that she would be around, that they couldn’t slip. It was the same with the nurses she supervised.

For a few moments he suffered her attempts to pat his hair down, but then he put his hand to his scalp as though deliberately to mess up the work she had done.

“I know you don’t want to be here,” she said.

“No.” He shook his head. “No, no, no, no. No.”

“I’m here. I’m going to be here. I’m going to be here every day.”

There was a confused sadness in his expression, a struggle to convey what he was feeling.

“I couldn’t take good enough care of you at home,” she said, swallowing hard. “I couldn’t keep you safe.”

He fell quiet. She was finding it hard to keep herself together. She was determined to get through this without breaking down.

“No,” he said.