In a way, Alzheimer’s disease is like going through the torture of drowning—again and again. Just when the victim has lapsed into unconsciousness, he suddenly succeeds in finding his way above water to snatch a breath of reality. This is simply another reminder that he is not dying … yet.
Paradoxically for the sufferer, it is more painful at the beginning when his periods of lucidity are longer. In the end those around him become the victims. For they know that though he is not lost to the world, he is lost to them.
But even before the light completely fades, there is an unending series of humiliations.
Adam fought like a demon when they tried to take away his driver’s license. He was determined to preserve this tenuous symbol of independence.
Since she had so much to do to protect him, Anya enlisted the help of Terry Walters, a beefy black male nurse with considerable experience in dealing with this ruthless disease.
He was so skillful and good-natured that it was not clear whether Adam knew precisely why he had been hired.
As the disease advanced, the patient became more depressed and lethargic, but Terry convinced him to jog, matching him stride for stride, alert and ready to catch him if he stumbled.
The addition of a nurse also enabled Anya to go about the difficult business of living two lives: hers and Adam’s. She visited the lab daily, collecting the data gathered from various experiments and bringing it home, explaining to the staff that the prof had picked up a nasty virus on the journey that he simply could not shake.
In lucid moments he wrote comments in the margins of the reports, and Anya made sure his modifications were adopted. If his mind was blurred—as was the case with growing frequency—she would pretend to talk to him. And when he stared glassy-eyed, unable to understand the problem, she tried to imagine what the old Adam would have done and conveyed the response to the staff.
In the brief time they had spent together, they had learned to think as one—which gave Anya the courage to enter areas where she would never have trespassed.
She had no alternative but to tell Prescott Mason. He was genuinely shaken. Perhaps behind that PR man’s facade there was a human being after all.
Moreover, he added, for what it was worth on the scale of things, he would continue to work on their behalf because he believed in what they had done.
Ever the pragmatist, Mason chose to regard his client’s tragic circumstances as just another kind of deadline. Up till now, he had been subtle and low-key, operating on the assumption that he would make his big move in three or four years. But after what he had just learned, he had to go into high gear.
In some areas Anya proved to be an undreamed-of asset. As MR-Alpha became more and more widely used and its effectiveness recognized, there were increasing requests to interview Adam. But it was clearly too dangerous to allow him to talk to the press.
Mason easily convinced the papers that mattered to interview this wife of the nineties, not walking a humble ten paces behind, but standing together with her husband in the vanguard as they charted new territory and made medical history.
In private, Anya longed for those fleeting—ever rarer—moments when Adam would be himself. It was like a reunion with someone resurrected for a quarter of an hour. But the price was going through the agony of watching him “die” again.
Prescott Mason labored tirelessly. On more than a dozen occasions in the most important research centers in the country, Mason took previous Nobel laureates and respected nominators into his confidence and explained that Adam Coopersmith was dying.
Naturally, he argued, Adam would have been chosen in due time. But perhaps the cruelest and most arbitrary Nobel rule was that the award could only be given to a man alive at the time of the voting—though ironically, if the recipient died of joy one second after receiving the official news, his widow could collect the prize.
By the spring, Mason had made considerable headway. He had obtained almost forty “congressional suggestions” that he knew of, and nearly twenty recommendations, sent by letter and fax to Stockholm.
Except when she had to be at work, Anya never left Adam’s side. Sometimes she would drive him to the lab, and, though he was occasionally confused and disoriented, she would walk him swiftly down the corridor, encouraging him to respond to the friendly waves and greetings, “Hi, Prof.”
Previously an annoyance, the glass wall in Adam’s office now served a useful purpose. It proved to the staff that, in some sense at least, he was still there, “on the job.” Anya seated him behind his huge desk, always made sure he had a book in his hand.
But members of the staff, accustomed to bringing their problems directly to Adam, began to resent what they thought was Anya’s usurpation of his role. She would take their reports, assure them that the prof would look them over that evening and return them with comments in the morning.
Why, they wondered, was he letting her take over?
Anya was aware that she was unpopular. But she counted it as a small price to pay. Because on the larger scale of things, they seemed to be getting away with it.
Whenever possible, she would go to her own work station in the lab while simultaneously keeping an eye on Adam through the glass, should someone try to reach him directly.
Yet with each passing week, they had to deprive Adam of more and more of the trappings and privileges of adulthood. In moments of distraction—for Terry, though dedicated, did not work around the clock—Adam had occasionally wandered to the garage and tried to drive off.
It was not enough that they had appropriated his license, they had no choice but to confiscate his keys. At first he was angry and resentful. Then, as his perception continued to blur, he barely noticed the infringements on his autonomy.
Finally, Anya had to resort to the ultimate pacifier. She now came into the lab at midnight and tried to do some serious work for three or four hours, while Adam sat in his office in front of an electronic baby-sitter, staring at the screen of a portable television that he had long ago bought her.
At that hour the place was all but deserted. At an appropriate moment, when the two or three remaining workers popped out for a late snack, Anya would help put on his coat and walk him quickly to the car. But she knew this charade would not last for long.
His condition worsened. In fact, one night Adam was so agitated that Anya begged Terry to work overtime and stay with him while she went to check on their various projects.
Just as she was waiting for the down elevator, she was accosted by Carlo Pisani, Venice’s gift to the women of Boston.
“Hello,” she answered his greeting. “How’s your work coming?”
“You should know,” he said pointedly. “You’ve already critiqued it.”
“Well,” she reacted, flustered, “it sounds very exciting. I mean, naturally, Adam’s told me something about it.”
“Please, Anya,” he protested, “don’t treat me like a fool. It’s you who told him.” He paused for a moment and then asserted, “I think the two of us should talk.” His tone was knowing, but she was unable to tell how much he had discovered.
“Why, of course, Carlo,” she said uneasily. “Any time it’s convenient.”
“Now,” the Italian said insistently.
“At this hour?”
“What we have to say is long overdue. I want to know why you have kept me in the dark.”
“I don’t understand,” she responded with growing panic.
“You could have trusted me,” he persevered. “In fact, if you had, it would never have come to this. I respect you as a scientist. We could have worked together.”
She shrugged, at a loss for words.
“Anyway,” he said, “since you locked the front gate, I had to resort to the only approach that would be off limits to you.”
He then continued, with a trace of satisfaction, “Last night I waited nearly two hours in the men’s room hoping he’d come in to use it before going home. And, of course, he did.”
Still trying to maintain an outward calm, Anya casually asked, “And what did he say to you?”
“He didn’t have to talk, his actions said everything.” Pisani spoke with something approximating compassion. “I almost cried when I saw it. This brilliant, splendid man, was so pathetically disoriented … that he pissed in the middle of the floor.”
“Oh Jesus,” Anya said, letting down her guard and covering her face with her hands.
“He’s a very sick man,” Carlo murmured in a tone that sounded strangely conspiratorial. “We have to talk now.”
Anya could merely nod. She was crying. Not for herself, but for Adam’s degradation. “Why the sudden urgency?”
He hesitated and then said softly, “Because there are other people waiting.”
“I don’t know what you mean.”
Carlo could not suppress a touch of pride as he pronounced a single word, “Stockholm.”
A million volts of electricity struck her dumb. She was terrified that all was lost. Finally, she managed to say, “You—you’re their spy.”
“I could think of nicer ways of putting it, Anya.” He then added mildly, “Now, don’t you think we should continue this in Professor Coopersmith’s office?”
She nodded in defeat.
As they entered Adam’s sanctum, even Pisani was impressed by the number of citations lining the walls. On previous visits he had been too focused on seeking his mentor’s opinion to notice the decor.
She placed herself behind the ramparts of Adam’s desk and asked, “What are you going to do?”
“That depends on what you tell me.”
Anya was torn. It would be difficult, if not impossible, to lie to him, for he had medical as well as research credentials. She had to take the risk of appealing to his sympathy—if he had any.
“You’re correct,” she whispered. “My husband is ill.”
“We already know that,” Pisani replied quietly.
“Well,” she asked anxiously, “what does ‘Stockholm’ think it is?”
“I’m not sure. But I do know they’ve heard he’s … degenerating.”
For a moment Anya’s fear gave way to anger. “Why is the committee so worried? Even if he were short-listed and died before the voting, their stupid rules would make him ineligible. As if death could diminish a man’s achievements.”
“True. But in this case it might depend on the cause of death. If, for example, he were suffering from something like AIDS, that might pose problems.”
“I don’t believe it,” she protested. “How could that possibly affect his suitability for the Nobel Prize?”
“Let me put it this way,” he explained. “If Adam had cured the disease, they would give him the prize and a twenty-one gun salute. On the other hand, if he died of it, in some quarters that might reflect on his moral suitability.”
“You mean, even if he were a hemophiliac and caught the virus from a blood transfusion?”
“That might still be a negative image. The cynics would always say the transfusion was a cover-up for something worse.”
Rather than engage in protracted debate, Anya concentrated on helping her husband. “Well, Carlo, I can assure you that Adam’s illness has absolutely nothing to do with the HIV virus.”
“Of course not,” Carlo pronounced. “In fact, all the external signs and symptoms seem to point to a brain tumor. I assume he’s been scanned.”
Anya nodded. Let him draw his own conclusions, she thought.
“Is it operable?”
She shook her head.
“Oh Dio,” the Italian moaned. “He’s so young. He had so many years of achievement in front of him.”
“Forget the eulogies,” Anya retorted. “He’s done more than enough to qualify for the prize.”
“I agree. I quite agree.”
“Then what will you say in your report—or however you communicate?”
“I will tell them … it is now or never.”
“How did you get here, sweetie?”
Adam was propped up in bed, freshly shaven by Terry and dressed in elegant pajamas.
“Lisl picked me up,” his daughter replied. “Say, Dad, you look terrific.”
“I feel terrific,” Adam replied. “I mean, I hope you don’t believe those rumors about my being sick. I’m just taking a long time to get over the jet lag from Australia. By the way, did you get our postcards?”
“Yeah. The best photos were from Fiji. Did you guys have a good time?”
“So-so,” Adam answered, and then whispered emotionally, “I missed you like hell, honey. I wish you could have come along. How’s school?”
A look of fear crossed Heather’s face and she was barely able to speak loud enough for him to hear.
“Hey, Dad, stop trying to make it easy on me. I realize I’m not supposed to know what’s going on, but I’m getting the distinct impression that you might not be around for my college graduation.”
Adam lowered his gaze. “I’m sorry, Heather,” he said with anguish. “I really am. I can’t bear the idea of … not being there for you.”
His daughter covered her face. “Oh, shit. That’s such a brutal way of putting it.”
He shrugged helplessly. “I don’t know what else to say.”
She looked at him and was engulfed by a tidal wave of love. “Oh, Daddy,” she cried, “please don’t die. Please don’t …”
She moved closer to the bed, putting her head next to his on the pillow, and sobbed uncontrollably.
After a moment she felt that something had changed. She looked at her father and realized his face had suddenly frozen.
“Dad—are you okay?”
Adam stared at her for a moment longer and then burst out irascibly, “Who let you in here? This isn’t Harvard Square, you know. What do you want?”
In an instant Anya was there and put her arm around Heather’s shoulder. The young girl did not refuse the gesture of comfort.
“What’s wrong with him?” Heather gasped, terrified.
“It’s part of his condition. Try not to be upset,” Anya said as reassuringly as she could, inwardly castigating herself for not cutting off the conversation just a few moments earlier.
“Does this mean he won’t know me anymore?”
“No,” she replied, trying as hard as possible to sound convincing. “In fact, if you come to the kitchen for a cup of tea, he might … calm down again in a little while.”
Heather and Anya sat at the table as the last rays of the sun retreated from the garden. Heather looked at Anya’s soft, sad face and murmured, “You live with this all the time. How the hell can you bear it?”
The older woman let her glance drop and confessed in a whisper, “Sometimes I don’t know.”