Chapter 42

If nothing’s wrong with him,” Eileen told her own doctor, when she went in about a shortness of breath she’d been experiencing, “I’m going to divorce him. I can’t take it anymore.”

Dr. Aitken told her to bring her husband in. She sold it to Ed as his annual checkup, that she’d like him to try her doctor, and when he didn’t object in spite of having gone in for a checkup less than six months before, she knew she was doing the right thing. They sat in the discordant placidity of the waiting area before she led him into the examining room and went back out. She’d blustered about divorce, but now she saw that she would put up with anything in exchange for hearing that her husband had simply become an asshole.

After spending half an hour with Ed, Dr. Aitken came out to meet her.

“Don’t divorce him yet,” he said, handing her a referral to a neurology team he trusted.

She braced for the fit she expected Ed to throw once they got to Montefiore, but he sat docilely again on the papered, padded table, waiting for the doctor to arrive. His big, fleshy back looked like raw dough.

First came blood tests and a physical exam. Dr. Khalifa, the lead doctor, wanted to eliminate anything that might cause memory loss, so he checked Ed’s thyroid levels, as thyroid problems had run in his family. They gave him a CT scan.

His thyroid was fine. The CT scan showed no sign of a tumor.

She took him back for diagnostic exams. Dr. Khalifa sat Ed at a table and took a seat opposite him. She sat in the extra chair and felt nervous for Ed, as though she were about to watch his debut in a theatrical production that had limped toward opening night.

Dr. Khalifa told Ed to count backwards from one hundred. Ed got to ninety-seven before pausing. “Eighty-six,” he said, then ran off a few other numbers in accurate succession, until he jumped another decile, at which point Dr. Khalifa stopped him.

The obstreperousness she’d anticipated was starting to seem like a fantasy. Ed looked vulnerable and small. He was smiling, trying to ingratiate himself with his examiner, perhaps in unconscious pursuit of mercy in the diagnosis.

Dr. Khalifa told him to draw three concentric circles, and Ed put a good one down on the page, then drew another that was ovoid and attached to the first like a chain link. The third, a shaky line meeting finally in something more like a quadrangle than a circle, sat apart from the first two.

“Great, that’s great,” Dr. Khalifa said dully when Ed was done. The doctor was a picture of imperviousness. She watched his eyes: he betrayed no sign of surprise, gave away no clues as to whether this was a normal result or not, the product of mere aging or something more sinister. She didn’t know whether she herself would have been able to draw the concentric circles. Certainly it would be difficult under this kind of scrutiny. She had a sensation that she was watching a child take a test, and she felt a sympathy with Ed that made her question her decision to expose him to this. What right did she have to subject him in the quiddities of his middle age to a man who would be looking for any sign of deviation from a norm that was probably arbitrary in the first place? She wanted to whisk him back home and let him go at things in his own way. A category existed to describe men like him, a time-tested, venerated one at that: absentminded professor.

“I’m not an artist,” Ed said, laughing. “You should see my drawings of the digestive system.”

The doctor chuckled.

“This could be something abstract,” Ed said.

Dr. Khalifa looked at it and shook his head. She didn’t like his attitude. He was too glib, too detached. His hair was too perfect, his teeth gleamed too white. She had long wished Ed had pursued medical school, but now she felt she’d been too hard on him in her mind. She knew doctors like this at work; they thought they walked on water. The work Ed did might not have been as lucrative or flashy, but it laid the groundwork for guys like this to come to their conclusions. If Ed said nothing was wrong, then most likely nothing was wrong. She had insulted him by bringing him before this cipher who didn’t deserve to carry his briefcase, let alone pass judgment on him.

“We’re almost done with this part,” Dr. Khalifa said. “One more question and then I’m going to have you do some physical things.”

“Okay.”

“Tell me something. Do you know who the current president is?”

If he wanted to insult him, this was a perfect way to do it. She almost wanted Ed to answer sarcastically or deliberately incorrectly, but she didn’t want the doctor to have the satisfaction of writing it down on that little pad of his.

Ed sat with it; maybe he was coming up with a witty riposte.

“I know it’s a Republican,” he said. “I know that.”

“Can you tell me his name?”

Ed pulled on his chin. “Reagan?” he asked. “Is it Reagan? I can see his face. It’s not Reagan, is it? This is embarrassing.”

“You know this, Ed,” she said. The doctor gave her a look; she wanted to smack his face.

“I can see him,” Ed said. “I just can’t recall the name.”

Dr. Khalifa wrote something down. She wanted to call the answer out. The whole thing was so stupid. She couldn’t believe he was letting him dangle there like this. Ed looked ruined, as if he had failed a test not merely of memory but of character.

“Give it a second,” Dr. Khalifa said. “Sometimes it’s hard to think of a given thing when you have to. Think of something else. It might come to you.”

“White elephants,” Ed said.

“Something like that.”

Ed rubbed the top of his head, as if to massage the answer from his scalp. He let out a deep sigh. “I can’t remember,” he said. “Who is it?”

“Bush,” the doctor said. “George Bush.”

“Yes! That’s it! I knew it. God, I knew it! I could see his face. Of course! His running mate. It’s easy to confuse them.”

The doctor said nothing, just continued to write on his pad.

She thought of the time she’d had to memorize the presidents and their dates of service. She remembered Sister Alberta calling them up one by one to the front of the room to answer one question each, Sister asking her which president followed Teddy Roosevelt. So many W names surrounded Roosevelt — to this day she could remember them: William McKinley, William Howard Taft, Woodrow Wilson, Warren G. Harding. Though she had memorized them conscientiously, at that moment they ran together in her mind. She was terrified of being called stupid in front of the class. Her heart began to race; then her mind went blank, so she could picture only the hazy outlines of names. “Now, Miss Tumulty,” Sister said, and when Eileen said, “William Wilson,” laughter exploded in the room.

“You’re right,” she said. “It is easy to confuse them.”

Ed looked guiltily at her, as if she were on Dr. Khalifa’s side and not his. She shifted her chair closer to him. The doctor seemed to write endlessly.

“Just one more thing I have to get down here,” he said, holding up a finger as he wrote. “Perfect. Now I’d like you to change into shorts. I’m going to have you do some exercises for me.”

They went into the next room and she helped him change. It felt like she was getting him ready for gym class. She wondered what humiliations awaited him. Dr. Khalifa came in and had him touch his toes from a standing position and rise from a seated one. He had him jog in place. He took notes throughout. Ed looked to her between exercises. She tried to give encouragement. When Dr. Khalifa told him to touch his finger to the tip of his nose, Ed had a hard time doing it.

“I’m not drunk,” he said. “I promise. Although I might get drunk after this.”

Chapter 43

They were waiting for his father to pull the car up after Mass. It had snowed, and his mother didn’t want to walk in it. Another light dusting was coming down, and his mother held an umbrella over both their heads while they waited.

“You’re going nowhere with baseball. You know that.”

The comment might have stung more if Connell hadn’t known it was more about debate than baseball. His mother had been on him lately to join the debate team.

“I like baseball,” he said.

“Liking it is one thing. Spending your time doing it is another. You don’t have to like everything you do. Besides, you’d like debate. You’re naturally competitive. You get that from my side.”

“Why do you want me to do debate so badly?”

“I want you to make the most of your advantages. I want to see you use your talents wisely.”

“You want me to be a senator,” he said.

“I want you to be happy.”

“President of the United States.”

“Don’t try to make me out to be some fire-breathing dragon. So I want to push you a little. So what?”

He stood in silence, thinking about it. So what, indeed? The shoveled driveway across the street was getting recoated in a sheen of snow. It might be nice to own a house like that someday, to be able to hire someone to shovel. But he had no interest in joining the debate team. Those guys were always on the verge of cutting your throat.

“What does Dad say?”

“Your father and I both want what’s best for you.”

“What does he say?”

“What does your father say?” She laughed. “‘Leave the kid be,’ he says.

‘Let the kid do what he wants. Let him have some happiness. Let him have some innocence while he still has time.’ ” She was getting worked up. Some people walking past on the way to their car jerked up their heads. “‘All that matters is that the kid experience joy.’ If you must know, that’s what he says. And you know what I say?” There was a fierce expression on his mother’s face. “I say give the kid a chance to make a real mark. Those debate kids are the ones who get the best grades in the school. Get him among them, is what I say. Those are the kids who go to Ivy League colleges. Let him get into a topflight school with them, become a lawyer, a politician. Those are the kids who take home awards and scholarships. What’s wrong with his being one of them? What’s wrong with his making a nice living? Being comfortable?”

“It’s just debate, Mom.”

“They’re the best. You should be the best with them. Otherwise you’re wasting your time.”

“I like baseball,” he said.

“You’re not going to be a professional player.”

“Probably not.”

“Definitely not.”

“Fine. Definitely not.”

“Look,” she said, “there’s your father. Don’t tell him we talked about this. He just wants you to play baseball and not think about anything complicated right now. Or maybe not ever. He wants you to be like a horse in the fields or something. Unfettered.” She said it with a sharp little laugh. “I don’t think that’s real life, though. Maybe I want to tame you. Make you useful. I guess that’s just who I am. But I know one thing. You listen to me, you’re never going to want for anything in this life — not with your ability. I could guide you to the good life. If I’d been born a man, I’d be there myself.”

Chapter 44

They 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.

An excerpt from We Are Not Ourselves: A Novel by Matthew Thomas; published on August 19, 2014, reprinted with permission of Simon & Schuster. All rights reserved.