We Are Not Ourselves (43 page)

44

T
hey went to several more appointments. Dr. Khalifa repeated some tests and added new ones. Six weeks after the first appointment—it happened to be St. Patrick’s Day—they went in for the results.

She was more nervous than she’d been since her wedding day. Ed seemed past nerves. He radiated an odd calm, like a man about to receive a lethal injection.

They waited in the room for the doctor to come in. She held Ed’s hand, but he patted hers as if she were the one getting the news.

Dr. Khalifa entered with a folder, giving off a vaguely metallic smell, and Ed bristled. The doctor walked quickly, without sufficient gravity. She thought,
A turnip conveys more emotion than this guy
.

“Well, I have good news and bad news,” Dr. Khalifa said. “The good news is, physically you’re healthy as a horse. A great specimen.”

She felt a jolt of excitement, then one of fear. “What about the bad news?”

He turned to her. “The bad news is your husband likely has Alzheimer’s.”

She gasped; Ed’s hand in hers seized into a fist.

“I take no pleasure in saying this, but from now on, it might be best to think of every day as the best day of the rest of your life. If I were you, I’d try to make the most of every day while you can.”

Ed squeezed her hand so hard she winced.

“I don’t understand,” she said.

“If he didn’t have Alzheimer’s, he’d probably live to ninety-five. Heart, lungs, kidneys, circulation—all tip-top. But he’s got it.”

“Are you sure?” she asked.

“There’s little doubt,” the doctor said, with all the detached finality of one of those enormous computers in old movies that spat out answers on punch cards.

“I knew it,” Ed said grimly. She realized in an instant that he probably had known it, that he might have known it for years.

“How can this be? He’s barely fifty-one.”

“It’s early, but it happens,” Dr. Khalifa said. “I’m sorry.” He did look sorry, but not for her particularly, rather for himself for having to be the bearer of bad news. “I wish there were something more I could say.” She looked to Ed to explain it to her better than the doctor had. “I’ll leave you two alone.” The doctor slapped Ed’s folder on his thigh as he rose. “I’m sure you have a lot to talk about. I’ll come back in ten minutes to answer any questions and talk about our game plan.”

When he was gone, they sat mulling over the news. It was a paradox of sorts: nothing made sense unless it were true, and yet it made no sense whatever for it to be true. It was so obvious now that he had Alzheimer’s. The news felt old already, somehow.

“What are we going to do?”

“We are going to get a second opinion,” she said.

“We don’t need a second opinion. He’s the second opinion.”

“He could be wrong,” she said.

“He’s not,” Ed said, with an authority that made her heart pound in her chest. She felt such love for him that she had to look away.

They sat in silence. Ed’s grip on her hand hadn’t loosened since they’d heard the news, but now she could feel his fingers beginning to uncurl.

“What the hell,” he said. “What the hell.” It struck her that it sounded like both a lament and a promise—a promise to make the best of things. “What are we going to do?” he asked again.

“We are going to carry this with dignity and grace,” she said. “That’s what.” One point of his collar was upturned, and she flipped it down and pushed the button through the buttonhole for him.

•  •  •

They drove to Nathan’s on Central Avenue. Ed had grown up taking the train out to Coney Island, and she wanted to give him a little comfort. This
landlocked outpost on an undistinguished stretch of local road was a pale copy of the faded original on Surf Avenue, but its young patrons seemed to project an aura of possibility onto it. A troupe of heavily cologned, spiky-haired Albanians in collared shirts and high-top sneakers preceded her in line, flirting with the counter girls. They hooted and clapped and spoke with great anticipation of the big night ahead. Through the window she saw a tricked-out Camaro dart into a spot in the lot, tailed by a Trans-Am.

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.

Her heart ached when she signed the “Assessment of Capacity to Choose a Surrogate Decision Maker” form, because during the evaluation, the doctor had asked Ed who she was. “My wife,” Ed had said, as if there were nothing plainer.

“Do you want your wife to have the power to make decisions on your behalf?” the doctor asked with exaggerated deliberateness, as if to convey the gravity of what Ed was signing over.

Ed laughed and asked the doctor if he was married. The doctor nodded.

“Then it won’t surprise you to hear that my wife has been calling the shots as long as we’ve been married,” Ed said, and the doctor chuckled in husbandly sympathy before checking the box beside “This patient has the capacity at this time.” It amazed her how winning Ed had been able to be even at a moment like this.

She signed with a certain stoicism a form consenting to participate on his behalf, but it was the “Record of Choice of a Surrogate Decision Maker” form that nearly made her lose her composure, because it was the only one Ed had to sign himself, and he started his signature an inch above where he should have and angled it down and through the line in a way that made it look as if he was falling down as he did it.

45

E
ileen keenly missed Curt, her hairstylist, and not just because he knew how to handle her cowlicks. She missed Curt’s entertaining conversation, the way he indulged her interest in politics and made her keep a toe dipped in the ocean of popular culture, the tide of which receded from her as soon as she stopped seeing him. Every time she checked out at the Food Emporium, it seemed, she recognized fewer of the faces on the covers of celebrity magazines.

She wasn’t about to go back to Jackson Heights for Curt, though, so she couldn’t avoid the hairstylist in Bronxville, even though it intimidated her to go in there. The salon was fancier than Curt’s place, with a miniature Japanese pond and leather seats in the waiting area. She was afraid to get into political conversations there, as she never knew who felt what, or who was listening, and she wouldn’t read any of the offerings on the coffee table—
People, Us, Premiere, Entertainment Weekly
—because she didn’t want to give anyone a reason to look down their noses at her, even though everyone else flipped through them with guilt-free relish. She couldn’t escape the feeling that there was a different set of rules for her that she’d never had properly explained.

The Bronxville salon was practically a full spa, offering nail care, massages, facial treatments. As stylists, they were skilled technicians, giving her what she asked for and leaving her a little cold. Her hair would look great for a couple of days, with a chilly perfection to it, the cut preserved so unchangingly that it looked as if she’d been fitted for a wig. Then, one morning a few days in, it would refuse to fall in line with the brush, and she would have to wait long enough until she could justify going in.

Curt gave her what she didn’t know she wanted. His cuts were understated; sometimes she wondered whether he cut much at all or just stood there talking and making snipping motions with the scissors. He always swept the shorn locks away before he took the smock off her, so she never got to examine the evidence. Weeks after an appointment, though, people were still asking her if she’d just had her hair done.

•  •  •

One day in the last week of March, when she was waiting to have her hair cut, she heard the woman before her—who despite being a little older than her was wearing stiletto heels and had alternating streaks of chocolate, caramel, and butterscotch dye in her hair—tell the hairstylist about the miracle they’d performed cleaning her mink at Bronxville Furrier after she’d leaned against some wet paint. Eileen saw the fur hanging on the hook. It looked shiny and full, as if it had just gotten a cut, shampoo, and blowout itself. The way the woman discussed her fur, it was as though she were actually discussing something else, speaking in a secret code that Eileen could decipher only if she had the corresponding key. She’d had the thought before that a fur might just be the thing to make her feel she belonged in this town.