Death Be Not Proud (5 page)

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Johnny was discharged from Neurological on June 1, and he
moved to our apartment. But he had to return to the hospital every morning for X-rays until June 20 when he was cleared to go to the house in Connecticut, a hundred miles away, for what we hoped, even then, would be an uninterrupted quiet summer. The X-rays took a frightful lot out of him. Several times it seemed that he simply could not manage, physically, the brief walk down the corridor to the elevator and the few steps into my car. The radiologist would not allow more X-rays after June 20, though it was too early to tell whether the tumor was diminishing or not. Too much X-ray will kill any tissue, as surely as will a tumor. Also it can have a vicious deteriorative effect on the white blood cells, the bone marrow, and, as everybody knows, the skin. The radiologists had to estimate almost as carefully as Putnam in his operation exactly how far they could go before the beneficial effects of X-ray might be outmatched by their destructive force, both on Johnny’s scalp and on the brain itself.

Those were difficult and unhappy mornings—the traffic-choked drive across the city and then up the West Side Highway; slow, careful guiding of Johnny into the building, and the long waits for the slow, inefficient elevator; the technicians helping him up on the table, and then exposing his head to the machine as the switches clicked and that tremendous instantaneous power leapt out invisibly into the skull; then putting the bandage back, which I had learned to do; then talks with the doctor for a while and then the ride home again. “Papa, I feel so
sick!
Johnny said on one of the rare occasions when he would even admit that he was ill. He had now built up a secret defense within himself about the X-rays. It was that they had nothing whatever to do with that little “wart” (he had decided now that of the original tumor a small “wart” remained) but were merely to ameliorate the general post-operative swelling. His good humor was equaled only by his courage. Almost six months later, he confided to me, “You know, Father, I was so worried during those X-rays that I couldn’t sleep at night. I almost gave myself ulcers.” He did sleep, though.

The first minute he was home after the operation he did what we had anticipated—dived for the Britannica to look up brain tumors. We had taken the precaution to hide this particular volume because, among much else, the article said that almost all brain tumors end with blindness. I cannot recall now how we explained its absence. Johnny fumed for a while and then resigned himself to the mysterious ways of parents. That evening we discussed plans for the country calmly. Indeed, he had talked them out with Putnam himself. Swimming, diving, boating were forbidden—this last a cruel blow—because of the flap, the soft spot, in the skull. Johnny could still have had no real perception of the intense seriousness of his illness, because he had asked Putnam, “But can I go rock climbing?” We were told that he must rest above all, take short walks, read in moderation, and exercise the left fingers and left toes. The weakness here was gradually becoming more pronounced, but we did not know, nor did the doctors, whether the tumor was responsible, or, as may have been the case, whether it was a temporary setback caused by the massive shock of the X-rays. Probably it was at this juncture that we first became seriously impressed with what little doctors do know. T o question after question— what about the eyes? what about special therapy for the fingers? what should we particularly watch for or guard against? what if there is sudden increase of pressure? how long will it take for glioblastomatous changes to develop? when will it be safe to give more X-rays? what shall we do next?—the answers, despite the utmost good will, were confused and contradictory, simply because the course of any brain tumor in a child is unpredictable. of course we expected too much. But it was our worst burden that we were never sure about anything, not merely from one day to another, but from one moment to the next.

That whole summer, the summer of 1946, is a spotty haze in my memory. Mostly we were moving Johnny in and out, because he had to return to New York every ten days or so for checkups and to meet successive crises. But as to our own emotions I am trying not to write about them. What terrors and horrors of anguish it meant to Frances, I leave to the imagination.

The house at Madison was, from almost every point of view, perfect for a convalescence. It immediately faces the Sound, with a broad scallop of private beach. Johnny’s room was upstairs and, until the end of the summer anyway, he did not have too much difficulty getting up and down. Here were his most precious books, his specimens, his gramophone records, all the paraphernalia for his studies. Downstairs he could loaf on the long balcony, putter about in the sand, lie with Frances in the sun, make barbecues, wade, and even play a little with his boat. His workshop and laboratory were in the garage a hundred yards away. Here were chemicals, mechanical apparatus, rocks, laboratory equipment, and the vast heterogeneous assortment of things a boy collects and works with. Johnny was not bedridden. He never was that summer. There was not a single day in which he did not spend an hour or so in his workshop. He demanded that he be allowed to do his work in his own special way. Thank goodness he was well enough for that. He loved every minute of that summer. Frances was with him all the time and I came out weekends. Our friends dropped in and Frances’s brother and my sister were steady visitors. We had a Japanese cook who enchanted Johnny not only by the splendid things he made to eat but by his skill arranging flowers from the garden. “Tom,” Johnny announced to him one evening, “you are an artist.” But I do not know whether it was a lamb chop or a spray of roses that he was referring to.

Particularly I remember Johnny’s considerateness, even when he got sicker. of course he wanted his classmates and other friends of his own age to come for weekends, and several did. But he would hesitate to ask them, for fear they might be bored—inasmuch as he himself could not join them in sports or outdoor games. He was vehemently worried that his illness might upset our future plans and about how much it was costing and about Frances’s work and my book. I was less than halfway through
Inside U.S.A.
and hopelessly behind. Johnny knew that the deadline for delivering the MS was October 1, and he knew perfectly well that I could never make it. His first question when I came out, expressed with lively irony and disbelief in the veracity of what I would tell him, was, usually, “Well, how many whole chapters did you write yesterday?” Then: “You’d better hurry!” As to the work Frances was doing he would remonstrate with her gently and then encourage her, “Remember your destiny, Mother!”

This is from the diary Frances was keeping:

Yesterday, wet, cold. Bought peaches and strawberries. Johnny dressed and cheerful when I arrived. Read
Henry V
—Johnny read aloud the great speech. We recalled English chronology. Nap before dinner. . . . John came at eight. We played “Twenty Questions.” John’s thought:
Henry V
film; Johnny guessed it. Mine: top button on John’s pajama jacket. Johnny’s: Prof. Einstein’s signature; we didn’t guess it.

These were some items from his conversation at about this time, as taken down by Frances:

I don’t know what I’d do without you, Mother.

I think I’d like a bottle of champagne at school for my birthday.

My thinking is independent of my temperature—it just depends on my stimulants.

I’m going to write a theme “On Being a Guinea Pig,” with
teleological aspects.

I handed in my theme on theories of hom work just two days late—as proof of my argument and justification for not having done it on time.

In my Fourth Year, I’d like to take just Math, with a tutor, and Relativity with Professor Einstein.

A major problem continued to be what to tell him. If the tumor was indeed mostly gone, how then explain the continued bulging? But beyond this there were larger questions.
Why
was Johnny being subjected to this merciless experience? I tried to explain that suffering is an inevitable part of most lives, that none of this ordeal was without some purpose, that pain is a constituent of all the processes of growth, that perhaps the entire harrowing episode would make his brain even finer, subtler, and more sensitive than it was. He did not appear to be convinced. Then there was a question I asked myself incessantly. Why—of all things—should Johnny be afflicted in that part of him which was his best, the brain? What philosophical explanation could one find for that? Was all this a dismal accident, purely barren and fortuitous? Beethoven was struck deaf and Milton blind and I met a singer once who got cancer of the vocal cords. But if the connection of circumstances was not fortuitous, not accidental, where was justice?

Johnny said to me once, “The worst thing is to worry too little, not too much. Let’s keep up a tension.” It was as if he were girding himself for the struggle only too obviously under way, between life and Death.

Crisis followed crisis now in a series of savage ups and downs. The flap, which we called the Bulge or the Bump, got slowly, mercilessly bigger, until it was almost the size of a tennis ball sticking out of his head. “Oh—it’s the way those things go after X-ray,” we tried to explain it away. He accepted this—perhaps—and was cheerful and determined. Meantime we came to learn a new medical word that pursued and haunted us for almost a year—papilledema. This means, to put it roughly, a forward protrusion of the optic nerve, which is an extension of the brain itself. When pressure exists inside the skull, causing damage to the optic nerve, the amount of injury may be calculated with an ophthalmoscope. When the eyes are normal, the papilledema is zero. Then degrees of injury are measured in an ascending scale to 10 diopters. The higher the papilledema, the worse the situation. Before the operation Johnny’s papilledema was a full 10; when we left the hospital, it had dropped to 2. Now it hovered between 4,
3½,
and 4 again. Always the first thing a doctor did was to measure this wretched papilledema. Another frightening factor was that though most of the cranial nerves were still normal, there had come a slight lag on the left side of the mouth. Also Johnny had lost a shocking amount of vision. His eyes were more or less all right when he looked straight ahead, but what are known as the visual fields had become sharply restricted, and he could not see well to the side. The doctors called it “a left homonymous hemianopsia.” It was as if he had an invisible blinker on the side of each eye.

Nobody should get sick in or near New York in July or August. Putnam and Mount were both on holiday. On July 12 I brought Johnny in to Traeger for a check. Traeger did not like the look of the bump and sent us to Masson, who had taken Putnam’s place at Neurological. Masson would not see Johnny that day, which meant that he had to undergo the exhausting business of a hundred-mile drive back to the country, then into town again, and then back once more. Then Masson took one look and said flatly that Johnny could not live more than a couple of months. That ugly analogy came up again—his brain was like an apple with a spot in it.

On Wednesday, July 17, 1 was back in town. At about mid-night Frances called from Madison. The bump had opened and was leaking pus.

From that day until a month before he died, there was never a single day in which Johnny—patient, brave, humorous—did not have to go through the laborious nuisance and ordeal of having his head dressed and bandaged.

This leak in the bump was not in itself serious; it was a “stitch abscess” caused by a couple of tiny stitches left in the original incision. But it worried our local doctor in Madison, and Johnny began to take penicillin to avert infection in case the wound should widen where the bulging scalp was stretched thin and taut, or in case there should be another ulceration. We prayed that this would not happen. It happened, though. The bump burst open in another place. I got another hurry call from Madison at noon on the twenty-fourth, drove out at once, and Johnny was back in Neurological that evening. He was not worried much; only annoyed that his work was being interrupted. But he was skeptical when we said that he would be hospitalized only for a day or two. “Once they get me here,” he declared, “they keep me.”

We had heard, meantime, about a magician named Wilder Penfield in Montreal. Half a dozen folk had suggested that we get in touch with this renowned surgeon who, like Putnam, has international rank and who, like most great brain surgeons, is a poet. Traeger tracked him down, and he agreed to come to New York to have a look at Johnny. It was interesting to notice how impressed Neurological was with Penfield. The manner of the whole sixth floor abruptly changed. Previously Johnny had been a hopeless case; now he was a phenomenon of considerable interest. Putnam interrupted his holiday, and he, Penfield, Traeger, and another doctor spent the morning in consultation. We had told Johnny casually how eminent Penfield was, and his greeting to him was quite characteristic. He measured Putnam and Penfield together, and then asked, “Where’s Cushing?”

Frances often helped Johnny to time or rehearse his little jokes, but this one caught us unawares. He knew perfectly well where Cushing was. He was meeting two of the three greatest brain surgeons, and would probably be meeting the third quite soon.

Penfield said something about the fine recovery he was making, in order to reassure him.

Johnny replied, “I’m not so much interested in the spectacular nature of my recovery as in the exact seriousness of my complaint.” That held everybody for a while.

Penfield spent an hour on the slides; always, in a thing of this hideous kind, the possibility exists of mistaken diagnosis, and the tumor might have changed for the better or worse. We waited, and then with everybody listening Penfield cut through all the euphemisms and said directly, “Your child has a malignant glioma, and it will kill him.”