Persecution (9781609458744) (41 page)

“What does ‘protocol' mean?”

“The treatments. The type of treatment that the patient will have to undergo. Then we tell the parents the probabilities of success of that type of therapy for that type of pathology. At the end of the talk with the parents we let them know that we are also going to communicate the diagnosis to their child. And this, I assure you, is one of the most difficult moments. It's almost worse than when you tell the parents that their child is sick. It's as if all the rage and despair that up to that point they have managed to control exploded at once. Sometimes with a terrible ferocity. Every so often it even happens that someone will tell you that you mustn't dare, you don't have the right, they call you a torturer, a Mengele.”

“Who is Mengele?”

“Mengele was a Nazi.”

“What's a Nazi?”

On the Nazi question, too, the Pontecorvo spouses had entered into a conspiracy of silence. After all, there was plenty of time to teach their children the risks run on this strange planet just owing to the fact of their being Jews.

“Too many irons in the fire. Who the Nazis are I'll tell you another time. I was talking about the reaction of some parents.”

“Oh yes, the reaction of the parents.”

“It can be truly violent. And that's where the psychologists come in. They get the job of making the parents understand why it's right, both on the ethical and on the therapeutic level, that their children be informed about what they have and what the risks are.”

“And do they always manage to convince them?”

“I would say yes. They have great persuasive abilities. And at this point the third phase begins. When the small delegation—made up of me, the staff of psychologists, and the parents—goes to the child. And I can tell you that paradoxically that is the simplest phase, because the child is usually receptive. Because, unlike the parents, he wants to know. Because, in spite of the parents, he is still habituated to accepting the misfortunes that befall him. When the children are very small they don't understand precisely what you're saying, and after a while they're distracted and they stop listening. Adolescents on the other hand cry. For the most part they cry.”

“And what do you tell them to make them cry?”

“I tell them that we've found some sick cells, let's say, in the abdomen. That there's the danger that these bad cells will persuade other cells to mutiny against the body. And that to ward off that possiblity it's necessary to do this, that, and the other. Of course, we don't do it so brutally, the way I'm telling you. We say it as we go along. The first time we tell them one thing. The second another. And so on. We tell them that we are available, that they can ask us whatever they want, and we will answer all their questions.”

“And then what happens?”

“It happens that the patient starts to trust you. He knows that you won't deceive him. Basically he expects that he has something serious. With all the tests we've done, all the worry that his parents, willy-nilly, have lavished on him in recent weeks . . . well, now they demand some sincerity. They have the right to sincerity.”

“But why tell them no matter what?”

“Partly the fact that statistics show us that the treatment is much more effective in a patient who is aware than in a patient who isn't aware. And then, besides, there's a question of principles. Each of us has the right to know what might happen to us. Just to use a stupid example: if, after all you've just eaten, you had spinach in your teeth, would you want Papa to tell you or would you want everyone to see it and laugh at you without your knowing why they're laughing?”

“I'd want you to tell me.”

“There, it's the same thing. Once you've told someone it sends the message that you don't talk a lot of rubbish. That he can trust you. That between you exists a relationship of collaboration. Even when we administer a certain drug we say what the effects are. We say, ‘This might give you a stomach ache . . . this might give you some annoying blisters in your mouth . . . ' and so on.”

 

With what eloquence Leo told these things to his son. And with what intensity. The eloquence and intensity of a man who put work above every other thing, even above a family so loved and so lovable. Maybe because the contentment Leo felt when he was working wasn't threatened by the unpleasant uncertainties that sometimes gripped him at home.

In his pediatric-oncology unit Professor Pontecorvo never hesitated, never missed the target, managed to be concise and effective. In any case, the expression “his department” should be taken literally. Not only because Leo, with the authoritative support of his teacher, Professor Meyer, had helped to found that department but because at only thirty-nine he had become its head. He had been a very young head doctor. An enterprising and strong-willed head doctor. A doctor who never delegated but preferred to get his hands dirty. Who didn't spare himself, didn't put up insuperable barriers: available to patients twenty-four hours out of twenty-four.

It should be said that this dedication to work had been fostered by Rachel's acquiescent attitude. She certainly wasn't the type of wife who sits around complaining about her absent husband, her husband who works too much and thinks only of his career. And not so much because she nourished specific ambitions regarding Leo's profession but because she was a disciple of the religion of work inculcated by her father: a man's work is sacred. The duty of a woman, a good wife, is to relieve her husband, as far as possible, from every responsibility not strictly tied to work. A husband is not supposed to change diapers, take the children to school, help them with their math homework. A husband shouldn't think of anything but work. And his family should behave in a way that guarantees him the right to that virtuous selfishness.

Rachel knew this very well, having learned it in the field, for, when her mother and sister died, she had become, so to speak, a kind of putative wife for her father. Then what she had been imbued with became law: her job as a daughter (made unexpectedly an “only daughter” by tragedy) was to relieve her father of any extra burden. There were days when, because of a pressing order for an important client, Signor Spizzichino remained in the factory until late. Well, in such circumstances he didn't even worry about telephoning his daughter. She, on the other hand, found nothing better than to sit in the kitchen and wait for him: the pasta water boiling, the sauce ready, the plates face down, and in the air an odor of loving fatalism.

The same that was breathed in the Pontecorvos' beautiful villa some years later, on the evenings when Rachel waited for Leo to come home from the hospital. She had fed the boys and put them to bed. Then, at a certain point, she sent the maid to bed, too. Refraining, in the meantime, from putting in her mouth even a single piece of bread (a matter of principle). So it happened, at least five or six times a month, that the Pontecorvos found themselves eating alone in the kitchen at one in the morning. Leo was silent, Rachel buzzed around, no less silent, fiddling with ladles and steaming soup bowls.

But not only: in the early years of marriage, Rachel had struggled to reform her husband's habit of waking up late in the morning. The rules of the perfect worker, in fact, obliged a man with Leo's responsibilities to arrive first in the hospital and leave last. That's how a boss behaves. That's how a chief exercises control over his underlings and, at the same time, serves as an example.

It was this attitude of Rachel's, in short, that had allowed Leo to devote maniacal attention to his unit, ever since its founding. And keep in mind the fact that for Leo the treatment of the sick person began the moment he crossed the threshold of the hospital: there was no decision, even the most apparently marginal, about which he did not feel authorized to have his say. Beginning with the furnishing of the interiors. The colors of the walls and the floor. No clowns. No bright colors. No parodically infantile wallpaper. We're not exactly in Disneyland.

What he wanted was a luminous, sober atmosphere. Orderly and hospitable. Where parents and children would feel calm. And which, besides, wouldn't encourage the deviant illusion that a pleasant trip to the country awaited them there. Leo had fought to have the three big communicating rooms intended for chemotherapy face the hospital's only available bit of garden. Olives, weeping willows, magnolias: this was what the children had the right to contemplate while you were poisoning them.

Another of Leo's fixations was odors.

“Hospital smells are strictly forbidden here,” he repeated endlessly to nurses, orderlies, cleaners. The stink of disinfectant, boiled chicken, cooked apple: that was what Leo meant by “hospital smells.” There was trouble if, entering the unit in the morning, he caught in the air that depressing, deathly odor. The quietest man in the world flew off the handle. Losing his temper in a way that might seem incredible to those who were used to seeing him in another context. In his unit Leo was a despot. A Swiss. He gave in to the vice of nitpicking and made no allowances for anyone. He didn't tolerate meddling, imprecision, or any form of negligence. He had fought with the administration, with the union, with the entropy of the Roman hospital system in order to have control over the hiring of the paramedical staff, and to regulate the turnover (Leo knew that it's difficult to tolerate a job like this for long without going mad or growing cynical). The proverbial gentleness with which he habitually treated his underlings was redressed by the ferocity with which he addressed them when they got up to “one of their tricks.” Leo would have liked to oblige the whole staff to have a military haircut, a crew cut. Not being able to impose that, he had managed to introduce coifs. And not for hygienic reasons but in a spirit of human solidarity. It was already a gigantic trauma, above all for girls, to lose their hair: all they needed was to be mocked by the pyrotechnic hairstyle of some inexperienced nurse.

In short, Leo's lack of interest in bureaucratic questions found no correspondence in the practical organization of his department, which was, to say the least, inflexible. As if there existed two Leo Pontecorvos in the world: one sloppy and indecisive, the other resolute and precise to the point of being pedantic.

And this was only one of the contradictions.

In spite of that organizational intransigence and administrative negligence, in fact, Leo, in the practice of the medical arts (as he loved to call them), gave evidence of an unprecedented flexibility and a wonderful eclecticism. Hostile to any therapeutic fundamentalism, he had no position to defend but adjusted to situations like a chameleon. He had assimilated well the lesson of his Parisian apprenticeship: cancer is a disease different from all others; it's not an external agent that attacks the body but a part of the body itself—a rebellious, self-destructive part, a family member who has decided to kill himself. Cancer is not a part of us. Cancer is us. And that's why every single cancer of every single individual deserves a specific treatment. Because there is one for every organism. For this reason it's up to the protocols of treatment to adapt to the patient and not vice versa.

When Leo saw that a boy could no longer tolerate a therapy, he did all he could to change it or to relieve it. When he saw a girl devastated by aplastic anemia, one of the most horrendous effects of the chemotherapy, he gave her a few weeks' respite. He waited for the bone marrow to start functioning normally, to produce the number of white cells that the immune system needed. Because Professor Pontecorvo never forgot even for a second that the most effective treatments devised by man against cancer—that is, chemotherapy and radiation—are, each in a different way, extremely harmful poisons. To be maneuvered with the mastery of an alchemist.

And it was precisely the form of humanism that Leo applied to the treatment of cancer that had made him so sensitive, before many of his colleagues, to the psychological aspects. His unit was the first in Italy to be provided with a staff of psychologists. Leo had formed a special alliance with the coordinator of the staff, Loredana Soffici: she had initiated him into the mysteries of child psychology.

Tell the patients the truth. Make them responsible. Don't feed illusions. Make them participate in the struggle. At the same time, however, urge them to go on in the most normal way possible. These were the watchwords of Dr. Soffici. Leo shared with that woman the wish for patients to have the best chance to continue to live, play, and study. Among the latest toys that Leo bought for Filippo and Semi when he went abroad, one of them always slipped into the playroom on the unit. Which, in fact, instead of seeming like a cemetery for discarded toys from an orphange had the luxurious aspect of the room of a spoiled child.

Leo had extraordinary faith in Loredana. He liked to participate in seminars she organized for teachers in the school that the unit housed. He liked to hear her speak. He observed how her concise explanations were corroborated by the many years of experience he had in the field. Loredana encouraged young, frightened teachers to pay attention to every behavioral detail and not to underestimate anything. And that encouragement, even in its generic nature, seemed to Leo very intelligent.

“You have to understand that if a child is essentially talkative, a child subjected to this stress twenty-four hours a day can show a devastating talkativeness. And don't underestimate bitterness. Resentment. Anger. Don't underestimate envy. Envy of the sick for the well. You are well, they are sick. You will agree with me that this is an almost unnatural thing. An imbalance that is utterly unjust. And don't think that they aren't aware of that injustice. They are absolutely aware. And for that reason they might hate you. There is nothing more terrible than the bitterness of a sick person toward a healthy one. And it's worse at an age when the emotional sphere has unchallenged dominion over the rational. And yet, in spite of this, in spite of the persistent risk that some statement or attitude of yours might offend them or make them suffer, they deserve the truth. If a classmate can't come to school anymore, because he's very ill or because he hasn't made it, well, it makes no sense for you to lie about his fate. Don't feed ambiguity, don't tell lies. Know that they are more prepared to die than you are.”