We Are Not Ourselves(111)

She led Ed to the open expanse of the seating area. With a steady hand, he brought the hot dog up to his mouth and bit into the tower of sauerkraut, onions, relish, mustard, and ketchup that sat atop it. A squirt shot out and landed on his shirt. He wiped it off without a word. It used to kill him when even a fleck of ketchup fell onto one of his dress shirts, but it was as if he now saw through the ordinary frustrations of living.

They pulled into the garage. In the basement, she had him take off his shirt, then his undershirt. She sent him upstairs and went in to the laundry room. Passing the shelves along the stairway wall, she realized that someone had stolen his power tools.

Whenever the workers had been there and he’d been home, Ed had stayed in the study—working or sulking, she’d stopped caring which. They must have seen him as an easy target. In Jackson Heights, whenever they’d had workmen in the house, he’d watched over his tools with a diligence she’d always considered paranoid.

There had been two different crews in her house, the floor and kitchen guys and the painting crew, and it was impossible to ascertain exactly who had done it. It was the lowest form of knavery to steal a man’s tools, especially—the thought ruined her—when he couldn’t use them anymore.

She didn’t tell him they were missing. Instead, she left work early the next day and bought all new ones. She threw away the packaging and nestled them into place on the utility shelves. With their unscuffed surfaces and sharp corners, they possessed a newness that seemed unlikely to escape his notice, and yet his noticing now seemed equally unlikely. For the first time in their marriage, she found herself longing to be caught in one of her gentle schemes.

? ? ?

Ed was adamant about not telling the boy. They weren’t going to tell anyone at Ed’s work either. They wanted to stretch it out to the thirty-year pension. Including the job he’d held at the Parks Department while in college, Ed had been working for the City of New York in one form or another for twenty-eight and a half years. If they could get him to thirty, they’d have twelve hundred more dollars coming in every month than if he retired now. She was going to have to squeeze as much out of the system as she could, because someday the cost of caring for Ed was going to rise dramatically.

In the days after the diagnosis, Ed grew quiet and still. Overnight, the black-Irish touch of olive coloring in his face retreated, replaced by a gaunt, dusty pallor. His odor changed; she could almost smell the fear coming out of his pores. He had already been showering less frequently; now he stopped showering entirely, and he only brushed his teeth when she forced him to stand there next to her doing it. They both went to work as if nothing had changed. She wondered if the funereal air had settled in for good.

One night, in bed, he asked her if he was dying.

“Not yet, you’re not,” she said. “You still have plenty of life left in you.”

“I’m scared,” he said. “I am dying.”

“We all are, in a sense.”

“I have a clock on me.”

“We all have a clock on us.”

“Not Connell,” he said. “Not yet.”

She wanted to say, Connell too, because it was the truth, but she saw how upset Ed looked.

“No,” she said. “Not yet.”

“I don’t want him to get this,” he said. “I want him to live in peace.”

She couldn’t help herself. “He may not get this and still not live in peace. There are no guarantees.”

“He’s not going to get it. Tell me that.”

“He’s not going to get it.”

Her answer reassured him enough to allow him to fall asleep. She lay awake for a long time thinking of the clock ticking toward its terminal moment.

Maybe Connell would get it. Maybe she would.

One never knew.

Now that was the truth.



Even the hospital wasn’t safe enough for some of the Alzheimer’s patients she’d seen over the years. Getting lost in the hallways or wandering naked out of their rooms was just the beginning. One man fell down the stairs and broke his back. Intake could be tragic. They came in with gashes, burns; once, a severed finger. She wanted to delay the onset of real symptoms as long as she could. The answer for that was drugs. There weren’t any approved drugs on the market, but there were drugs in clinical trial that might be helpful. She needed to get him into a research study. He would be helping the industry he had balked at working for, and he wouldn’t get a dime for it. She had once imagined getting a luxury car, foreign trips, and antique furniture out of the pharmaceutical industry; now all she wanted was a less-rapid diminishment of Ed’s besieged brainpower. She had to hope some clear-eyed pragmatist not immune to earthly rewards had expertly carried out the investigations Ed had refused to take up himself.

She called around to people she knew. She found an open study at the Nathan Kline Institute for Psychiatric Research, in Orangeburg, forty minutes away across the Tappan Zee Bridge. The study was to evaluate the long-term safety, tolerability, and efficacy of SDZ ENA 713 in treating outpatients with probable Alzheimer’s disease, and it guaranteed Ed a supply of the drug as long as he wanted it, until it was either commercially viable or abandoned in the United States.

After the initial evaluation she was given a stack of official forms, one of which was a “Capacity Assessment for Participation in a Research Study.” It indicated that the examining doctor had determined that Ed lacked the capacity to understand the purpose, risks, and benefits of the research and make an independent decision about participation. She knew it was a pro forma thing, that they needed her to sign with his power of attorney, which she had secured, but it rankled her, because Ed so clearly understood what they were telling him, probably understood it better than they did themselves.