Persecution (9781609458744) (40 page)

Too bad Semi would not sit still for an instant. He had gone to the bathroom at least three times. He noisily unwrapped the earphones given to him by the same hostess. And he took on the job of unwrapping his father's as well. He had played with the buttons and controls. His excitement had reached a peak when the lunch tray arrived. Leo never ate on an airplane. But it was clear that his second-born would not imitate that paternal habit. On the contrary! Semi buttered the two rolls he had taken from the basket offered by the hostess and also the one on Leo's tray. He inhaled the lasagna, and then cut the roast beef into tiny pieces but didn't touch it. He had devoured the plum cake and demanded a double scoop of vanilla ice cream. Finally, the hostess, with a pewter coffeepot in her hand, had winked at Leo: “Coffee for everyone, sir?”

And Leo, “Yes, but if you could do me a favor, and dilute his with a little hot water.”

Just when, more or less around the Riviera, Semi seemed to have calmed down and Leo had reached the right degree of concentration, again the little pest returned to the charge.

“What are you doing?”

“Going over my lecture. Tomorrow I have a test in class,” Leo said, trying to be funny. “You know, papa will have to speak off the top of his head, and in English, and, well . . . it's always better to speak in your own language.”

Leo had got in the habit of speaking about himself to his children in the third person, like his own father. It was the late Dr. Pontecorvo senior who had taught him that that is how one speaks to one's son. Papa does this, Papa does that . . . It was an expressive mode that in its impersonality and its pedagogic effect stopped just short of pomposity.

“But the notes are written in Italian,” his son observed pedantically.

“The notes, yes. For Papa it's easier that way. But then I'll have to speak in English.”

Samuel was always asking why. He hadn't stopped since he began to speak. “Why do birds fly?” “Why do cars move?” “Why are the ants eating that butterfly?” “Why does the television work?” “Why do we eat?” “Why does Mamma have blond hair and why is Papa's black . . . ?” These were the questions with which Semi bothered any adult within range. Huge, not to say useless, questions, which should have deserved tautological answers—“Because,” “Because that's how the universe works”—but which instead obliged Leo and Rachel to invent detailed and instructive answers. “Cars move because man invented something that's called the internal-combustion engine,” “We eat and sleep because if we didn't we wouldn't survive,” “Ants, just like us, need nourishment. For them, as for us, food is assured by the functioning of the food chain. Probably the butterfly crashed and happened to fall near the anthill: the accident made it the ideal meal for the ants . . . ”

The fact is that Semi couldn't be satisfied. There was no answer that did not lead to another question, more metaphysical than the preceding, if possible. And although this was exasperating, still it gave evidence of a certain argumentative liveliness.

If for his older brother language had been a difficult and dramatic conquest, Semi had forged ahead: his precocity in appropriating expressions had appeared almost miraculous to his parents. From the first years of his life Semi had tormented them with two great passions: the desire to create a relationship between things and the taste for asking questions. Those two vocations combined made him a tireless interviewer and a frantic comparison maker. “Between me and Filippo who's a better swimmer?” “Between Mamma and Papa, who's been in an airplane more times?” “Who's stronger, me or my friend Giacomo?”

A kind of comparative delirium that also indicated a passion—very Pontecorvo—for competition. A passion that Filippo seemed totally immune to. A passion that, for different reasons, neither Leo nor Rachel minded.

“What's this?” Semi asked, pointing to a place on the page that his father was holding.

“The title of my paper.”

And then Semi, with his nose stuck in his father's notes and uttering the words clearly, had read: “The Three Phases of Communicating the Diagnosis to Pediatric-Age Oncology Patients: Progress and Development.”

After a moment's hesitation he asked, “What does it mean?”

“I told you. It's the title of my paper.”

“Yes, but what does it mean?”

“Is there a particular word you don't understand? Or is it the entire formulation you don't get?”

“Both.”

“For example, what word do you not understand?”

“ ‘Diagnosis.' ”

And so our failed Hellenist began to pontificate: “It's a word of Greek origin. Like, in fact, almost all the words doctors use. It comes from
dia
, which means ‘through,' and
gnosis
, a wonderful word that means ‘knowledge.' It's the way doctors determine and classify the pathology the patient is suffering from after they've subjected him to a series of tests.”

Seeing that Semi still looked perplexed Leo went on: “You know when you have a fever, when your bones ache and your mouth is hot and Mamma keeps you home from school?”

“Yes.”

“Well, if you come to me and say, ‘Papa, I have a fever, achy bones, a hot mouth,' first of all Papa will ask you for a lot of money. And then probably, given those symptoms, he'll tell you that you have the flu. That is a diagnosis, which you arrive at
through
the symptoms that the patient states. Flu is the diagnosis. The only difference is that the diagnoses that Papa has to make are more complicated and more, how can I put it . . . dramatic.”

“Why dramatic?”

“Because they are more difficult and because they concern illnesses that are more serious and more insidious than the flu. And because for the patient and the relatives of the patient they lead to some very unpleasant thoughts.”

“What does ‘oncology patients' mean?”

“Those are the patients afflicted by the diseases that Papa deals with.”

“And ‘pediatric age'?”

“That means it has to do with children.”

The reason that Leo got lost in all that chat and took refuge in all those flowery euphemisms was the result of a peculiar and deep-rooted difficulty in speaking to his sons about his work. Not that he wanted to protect them from a profession that, to all intents and purposes, could be considered extreme. It would be more exact to say that he was superstitiously afraid that, if he talked to them about it, he might in some way infect them. Make them more vulnerable. Make them like all the other children on the planet, or all fragile creatures exposed to the caprices of chance, liable to get sick and die at any moment.

Leo—the son of hypochondriac parents—had chosen not to be, in turn, a hypochondriac father. Mindful of how unbearable it had been to carry that burden of shadowy parental fears, he had decided to relieve his sons and himself of it. But in order to stick fully to that decision he had had to convince himself that, unlike others, Filippo and Semi were not part of the cycle of life: invulnerable to any illness, they would remain that way as long as he lived. This was above all the reason that he had always been hesitant to talk about his work in their presence. The same reluctance that he had in speaking about them to anyone in the hospital. He didn't want to create any connection. He preferred to manage his life like that: in watertight compartments. His sons were not “pediatric age.” His sons were his sons and that was all.

“So what are you going to say at the conference?” Samuel asked him, opening yet another can of Fanta. “I'm presenting the results that have been obtained in the past two years, thanks to innovations that, with the help of some enlightened colleagues, Papa has managed to introduce in his units. Results that have been really encouraging.”

“Like?”

This time Leo hesitated a little more before answering. Not so much because he lacked the euphemisms but because with that question his son had forced him to think about all the battles he had had to fight in recent years, against a rigid system, in order, finally, to be able to work in what seemed to him the fairest and most decent way.

Innovation. There is a word hated by the bureaucrats of Santa Cristina. Innovation. There is the cause for which he had worn himself out, for which he had fought, argued, for which he had almost risked self-destructing, and ruining his career. There is the persistence that they might one day find a way to make him pay for, but that for now had produced extraordinary results, which Leo was eager to discuss with his colleagues in other nations.

The principal therapeutic innovation that, about five years earlier, Leo had introduced into his treatment protocol (with some years' delay with respect to other, more advanced European and American practices) was the central venous catheter: an instrument thanks to which he could easily inject his patients' bodies not only with the poison of the chemo but also with the so-called “comfort therapies,” necessary to keep them alive and make them feel better. All this without having to torture the small, young veins, at risk of being damaged for good.

There had been an equally decisive revolution in, precisely, communication of the diagnosis to the patient. To introduce this Leo had had to challenge a more insidious enemy: the parents and their desperate wish. It was they, the parents, who couldn't accept the idea that the doctors should communicate the diagnosis to their children. What need was there to do so? Wasn't it already shocking enough that they were sick? Wasn't it enough to subject them to those frighteningly destructive treatments? Now they also had to be informed of the illness that was trying to kill them, the risks they ran, the extreme therapies to which they would be subjected?

Well, yes, Leo believed. And with him an entire school of thought. Helped and supported in turn by a substantial and combative group of child psychologists.

If Leo merely thought back to all the nonsense he had told his patients in the early years; if he thought back to how difficult it was to keep all that nonsense in mind and exercise control over it; if he thought back to the distrust with which his patients, especially the adolescents, looked at him while he served up all that rubbish . . . If Leo merely thought back to it he felt sick to his stomach.

Leo still remembered the boy in whom he had diagnosed (or rather had pretended to diagnose) an abdominal infection that would be cleared up as quickly as possible with some medicine that was a
tiny bit
painful, administered intravenously. He was the same age as Semi today. Well, once during a visit, that child, seeing his parents a proper distance away, had whispered in Leo's ear, “Doctor, please, don't tell my mother I have cancer. She thinks I have an infection.”

There: how long would such perverse hypocrisies still have been tolerated? The diagnosis was revealed to the patients. Although small, they had the right. Of course, along with the psychologists the doctor would learn how to treat each person as a separate case: between a child of six and an adolescent the differences are profound. The social background of the patients is a factor, as is the degree of culture. One can't treat them all the same way, it would be stupid even to presume it. Each patient is an individual. And each individual is a unique and inimitable treasure.

Leo had adhered to those principles, very Jewish, in truth, when he declared war on the old directives and the old establishment. All in order to introduce this new practice into his department. And that was why, after doing so, he had made use of a team of psychologists, who guided him along that path designated “phases of communication of the diagnosis to pediatric-age oncology patients.”

And, however ridiculous it might seem, perhaps because he had been caught unprepared or perhaps because he was flying ten kilometers above the cold and stormy sea of the Channel, Leo now found himself explaining the reasons for that battle, and the positive results of having won that battle, to his younger son. And that is, to one of the only two boys in the world to whom Leo had chosen not to tell things as they were. One of the only two boys whom Professor Pontecorvo had wanted to spare the weight of truth, taking refuge in the comfortable shell of a code of silence:

“Remember that the illness that Papa deals with is, thank goodness, very rare among children. There's no comparison with the number of adults who get sick. In my center there must be around sixty patients in all. In the center where Riccardo, Papa's friend, works, there must be at least a thousand patients. This gives me the opportunity, closed off to many of my colleagues, closed off to Riccardo, to deal with almost all my hospitalized patients personally and daily. I consider the opportunity to take care of them
personally and daily
an important fact. The secret of many remissions of the illness. This is what Papa is going to talk to his colleagues about tomor­row.”

“Why?”

“To compare my results with results obtained by doctors all over the world is necessary for my work and for theirs. We call it ‘cooperative study.' ”

“What does ‘cooperative' mean?”

“Well, ‘cooperative' is the key word. It means that we are bound to cooperate, or rather, that it's right for us to do so.”

“Yes, but what does it mean?”

“It means work together. I and my colleagues—Alfred, for example, and I—collaborate. It's impossible to do this work successfully without collaboration.”

“And do your patients always want to know what they have?”

“That's a good question, Semi. Really a good question. Here, too, things are very complicated. Some patients want to know, some don't even understand what ‘know' or ‘not know' means. It depends on many things. But all in all that isn't so important.”

“Then what is important?”

“It's important to set up a system—we call it a protocol—that helps us put ourselves, the parents of our patients, and, naturally, our patients in a situation to treat and be treated in the best possible way. And so we decided to separate the protocol into three phases. First of all we write down the diagnosis. We don't communicate it without first writing it down. Then we communicate it to the parents, and tell them what is the protocol that seems to us most appropriate in order to intervene in the most timely and effective manner.”