Isabel da Costa cursed the many times she had almost taken driving lessons, but foolishly changed her mind, thinking them a waste of time away from her research. She phoned for a cab, and minutes later when it arrived, the driver buzzed so aggressively that the noise woke her father.
Ray shuffled, confused, into the living room just as she was heading for the door.
“Are you leaving?” he mumbled drowsily.
Flustered, Isabel tried to explain quickly so she could make her escape.
“I—I’m going to the airport—”
“Eloping with Jerry, are you?” he asked half seriously.
“No, Dad, don’t be silly. In fact, he’ll be here at eight. Tell him I’ll be back as soon as I can.”
She hurried out, leaving Ray standing lost in the midst of an invisible fog.
Muriel, exhausted from lack of sleep, was scarcely able to believe her eyes when she saw her daughter at the airline gate.
“How did you find out?” she asked, her worried tone in contrast to the strength of her embrace.
“Never mind that. Why didn’t you tell me you were coming?” Isabel countered. For a split second the little girl in her came close to blurting out her own good news. But she suppressed the selfish urge.
Muriel was caught off guard and struggled to fabricate a plausible excuse.
“Well, I know you’re in your office all day, so I was just going to shoot up there and surprise you right after my appointment.”
“What appointment? What the hell is going on?”
Muriel held her daughter’s hand in both of hers and, forcing back the tears, tried to find the words.
“Edmundo’s ill—very ill.” She paused, gathered the courage and then uttered the words, “Huntington’s disease.”
“Oh, Mom, I’m so sorry. But I still don’t understand why you didn’t call me.”
Muriel interrupted her daughter. “There’s a professor at Mass. General who’s developed a radical cure. But it’s still in the final stage of FDA trials—and I’ve come to see if there’s any way I can get him to try it on Edmundo anyway.”
“I’ll go with you,” Isabel insisted.
“No. Believe me, this is something you want no part of,” Muriel objected with startling severity.
“If you put it like that, Mom, there’s no way on earth I’m going to leave you alone for a minute.”
Muriel shook her head in defeat and then realized that, for form’s sake, she had at least to murmur, “Thank you, Isabel.”
With time to kill, mother and daughter had breakfast in a crowded coffee shop near the hospital. The bleary-eyed, white-clad customers were obviously going off duty. The livelier ones, about to enter into the fray, were exchanging the essential news that encompasses a Boston doctor’s life: red cells and Red Sox.
Despite her mother’s obvious reluctance, Isabel could not withhold a torrent of questions.
“Mom, I don’t know anything about this disease.”
“Let’s put it this way. It’s a kind of neurological time bomb. Ultimately everything falls apart.”
“Aren’t there any chances for recovery?”
“One hundred percent fatal,” Muriel stated emphatically. “There’s no cure.”
“But you say this guy at MGH has something?”
“A genetic link. They’ve got a drug that works on rats,” Muriel said bitterly, “and several other laboratory animals. The only thing they don’t have is approval to try it on people.”
“Is there any hope they might make an exception?”
“Well, the government sometimes allows things on ‘compassionate’ grounds. I’m just praying to God that this doctor is strong on compassion.”
He was tall and broad-shouldered, his black eyebrows flecked with gray.
“Good morning, Mrs. Zimmer,” he said in a heavy Russian accent, holding out his hand. “I am Professor Avilov. Would you come in please.”
Isabel rose at almost the same time. “I’m her daughter. May I come too?”
“Her daughter?” Avilov reacted with startled interest. “Well, I should think—”
“No,” Muriel said emphatically. “I don’t want her involved.”
“But, my dear Mrs. Zimmer,” he answered with exaggerated courtesy, “by the very nature of the disease, is she not very much involved?”
“No, Edmundo’s not, I mean … her father’s Raymond da Costa,” Muriel protested.
The Russian scrutinized Isabel’s features and a sudden glow of recognition crossed his face. “Ah, are you not the famous physicist?”
Isabel nodded wordlessly.
“Let me tell you what an honor it is to meet you,” Avilov pronounced with deference. “I greatly admire your achievements.”
Then turning again to her mother, he said, “I had no idea, Mrs. Zimmer. But the fact that you have such a world-respected person in your corner, so to say, might help with the wretched bureaucrats in Washington.”
He stared at Muriel, waiting for a reply.
“Will you not reconsider allowing Dr. da Costa to accompany us?”
Though emotionally battered and physically exhausted, Muriel could still sense that this pompous professor, whose assistance she so desperately needed, would not be satisfied unless Isabel joined them.
“Very well,” she sighed in capitulation.
They followed him into his large office, which was decorated with diplomas in many languages. He seemed to be a member of every academy of science in the universe.
“Please, ladies, sit down.” He gestured gallantly as he positioned himself behind his massive wooden desk. Occupying center stage was a large color photograph of his blond wife and three children, all smiling like a toothpaste ad.
Avilov eyed his visitors and then pronounced, “Well …”
Neither woman could fathom the significance of this portentous monosyllable.
The great man then launched into a kind of lecture, punctuated with patronizing repetitions of, “as I am sure you already know.”
“Huntington’s is, as I am sure you already know, one of the real ‘nasties.’ No cure. No remission. No hope. Nothing. Up till a few years ago they did not even know where in the human genome it was to be found.”
He addressed Muriel with groveling condescension.
“All of this must be very familiar to your daughter. But if there is anything you wish me to explain, do not hesitate to ask.”
“No, no,” she replied softly. “Please go ahead.”
“Work done in this very lab by my distinguished colleague Professor Gusella determined that the Huntington’s disease gene resides on a strip of Chromosome Four. It was the first time in history anyone had used DNA markers to figure out roughly where a gene was located when they had no other clue.
“From this auspicious beginning, a cooperative effort was organized, including some participants from Dr. da Costa’s own MIT. Our strategy hinged on a new type of DNA marker called Restriction Fragment Length Polymorphisms—or RFLPs, as we refer to them in the lab.
“After our painstaking explorations, we now had the Huntington’s gene, so to say, in our clutches.
“It was here that I myself, a minor player in this great drama, stepped briefly into the limelight. I was fortunate enough to clone the offending gene, and by using recombinant DNA, produce a protein which seems—at least in the laboratory—to restore the structure of Chromosome Four to its normal healthy state.”
He ceased emoting to the world and once again addressed Muriel. “This, I take it, dear lady, is the reason for your visit.”
“Yes, Professor,” she answered as deferentially as she could, aware that the way to this man’s heart was through his ego.
Avilov propped his chin up on his right hand. He emitted one of his random “Well’s” and began to ponder. A moment later he became voluble again.
“As you must realize, Mrs. Zimmer, you are not the first … petitioner I have received. Huntington’s is a dreadful malady, and my heart goes out to the many sufferers whom I hope someday to help. Yet imagine the irony when I, as a former Soviet citizen, say I am strangled by what is here called ‘red tape.’ Unfortunately it is true.
“I am certain my restructured gene would work as well with humans as it has with mice. But in the past, our appeals have fallen on deaf ears.”
“And yet,” Avilov boomed suddenly, “I see here a potential advantage.”
“What, Professor?” Isabel asked, breaking her long silence.
The Russian suddenly pointed his finger at her and uttered yet another single syllable: “You.”
“I don’t understand,” she responded.
“Perhaps, Dr. da Costa, you are not aware of your own eminence. But the outside world regards you as a scientific giant and—speaking proudly as a newly naturalized American—a national hero. If the authorities in Washington were led to believe that you were in fact Edmundo Zimmer’s child, they would surely consider this appeal with new—and dare I say—favorable eyes.”
Muriel dissolved into tears. Isabel embraced her mother while continuing to address the eminent scientist.
“But that’s absurd, Professor Avilov. Anyway, how could they see his life or death as being relevant to me?”
Muriel’s sobs now became more audible.
“But surely, Dr. da Costa,” Avilov replied with raised finger, “you are aware of the genetic dimension?”
“Frankly, no.”
“Well, let me put it to you in the proverbial nutshell. Huntington’s is one of the primary autosomal dominant disorders. Affected individuals have a one in two chance of passing it on to their offspring. Were it known that a scientist of your magnitude were in such jeopardy, I am sure we would get, so to say, the green flag to treat the patient.”
“My God,” Isabel whispered, and then asked Muriel, “Do Francisco and Dorotea know about this?”
Muriel nodded. “They both insisted on being tested. I tried to persuade them not to. Francisco was lucky, but now Dorotea knows she’s living out an inescapable death sentence.”
“Oh, that’s horrible,” Isabel gasped.
Avilov could not keep from smiling inwardly at what fortune had so unexpectedly brought to his office—not only a surefire method of accelerating government approval, but a world-famous patient to publicize its success.
“Dr. da Costa, if this therapy were sanctioned, you would be helping not only your stepfather and stepsister, but countless others who could be saved if it proved efficacious.”
Isabel clutched Muriel by the shoulders and said passionately, “Mom, I’ll go along with it. It’s our one chance to save them.”
At this moment Muriel, overcome with emotion, grasped Isabel’s hands. “There’s something you have to know,” she said. “This affects you in a way you never realized.”
“I don’t understand.”
“You’re in danger, darling. I mean, it’s my fault.” She began to weep. “I don’t know how to say this.”
Isabel grew alarmed. “Mom, for God’s sake, what are you trying to tell me?”
“It’s actually the truth, Isabel. Edmundo is your natural father.”
At first, praying she had misunderstood, she gaped at her mother.
“Darling, try to understand. My marriage was falling apart and Edmundo was so warm and caring. He genuinely loved me.…” She hesitated. “We had an affair and”—her voice lowered to a barely audible whisper—“you were conceived. After Ray became so obsessed with you, there was no way I could ever tell him.”
“Stop it! I don’t want to hear any more of this.”
She had let go of her mother who, by now, was weeping uncontrollably.
“In fact, if you must know, one of the reasons I let him manipulate you was because I felt so guilty.”
“I can’t believe this, I simply can’t believe this,” she repeated in a paroxysm of denial.
She was staggered, stricken with self-doubt, racked with a terrible uncertainty as to who she really was. For emotionally, she had always defined herself as Raymond da Costa’s daughter. She had lived with him. And for him.
At this point she again grew aware of the Russian doctor’s presence.
“My dear Dr. da Costa, I am a physician. I will hold all of this in confidence.”
“Professor Avilov,” Isabel declared. “I’ve changed my mind. I won’t be a party to this unethical travesty.”
He straightened himself, manifestly taking offense. “But it is now urgent that you yourself be tested.”
“I don’t give a damn,” she snapped.
“But Isabel,” her mother pleaded, “don’t you realize you’re in danger?”
Abruptly, Isabel buried her head in her hands.
“You owe it to the world,” the Russian argued unctuously. “You are perhaps the greatest scientific mind in modern physics, and have a fifty-fifty chance of carrying the gene for Huntington’s disease.”
“Thank you,” Isabel retaliated furiously. “You’ve just cast a giant shadow over my entire life.”
“Not necessarily,” Avilov remarked with an incongruous grin. “I can draw your blood and within a week you will know your fate. After all, it could be good news.”
Though Isabel stood motionless and silent, he could sense that his words had struck home.
She still did not reply.
“Perhaps I should leave you two alone to talk about this,” he suggested, feeling a sudden urge to retire.
She glared at her mother, who was living in her own private hell.
“You expect me to talk to the woman who screwed up my life—and my father’s? What she did was unforgivable.”
“But if there hadn’t been Edmundo,” Muriel said pleadingly, “you wouldn’t be you!”
Isabel seared her mother with eyes of fire. “Do you expect me to thank you for that?”
She stormed out of the doctor’s office.