by John Gunther
I left the hospital over a month ago, and have been trying to gain some understanding of some of the technical terms which I used so freely in my letter.
I shall continue to study, and one day I hope to have the great honor and privilege of meeting you and having the conversation which you so graciously suggested.
We did not know whether Johnny’s original letter made sense or not, and so I sent a copy to my friend Francis Bitter, Professor of Physics at the Massachusetts Institute of Technology. He answered:
As for Johnny’s letter, I am not certain that I quite understand what he has in mind—particularly as to the number of dimensions of space being variable. The fundamental problem which he proposes, however, namely the unification of equations governing electromagnetic and gravitational fields, is one of the standard headaches of physics, and goes by the name of the Unified Field Theory. Einstein, as well as many others, have worked at it without achieving completely satisfying results. I have never taken up this subject myself. It is amazing that Johnny should be aware even of the existence of this problem.
Johnny was shy; he didn’t dictate easily. It took a lot of hard coaxing by Frances to get out of him the letters he did write, some of which appear later in these pages.
Of course Johnny did not know the full seriousness of his illness. Above all we had to shield him from definite, explicit knowledge, since his greatest asset by far—his only asset aside from his youth—was his will to live. But there are layers in a sensitive mind; deep down, he had a pretty complete awareness of what was going on. Very seldom, however, would he allow that lower layer to express itself. Once (neither Frances nor I was in the room and the nurse told us later) a great spray of flowers arrived from Cass Canfield. Johnny said abruptly, “Why don’t they wait to send flowers till I’m dead?” But a few minutes later when I came into the room he brushed this mood off with, “Pop, when are you going to get that new advance out of Cass?”
Immediately Putnam broke to him what he had, Johnny did two things. First he called an adult friend, Lewis Gannett, and told him almost proudly, “They drilled three holes right through my head.” Second, he telephoned a schoolmate, Edgar Brenner, “Guess what! That pressure I had was a brain tumor!”
He announced one afternoon when I came in, croaking, “Wonderful news—I’ve had another spinal tap!” Almost always when I called him early in the morning to ask how he was feeling, he would answer, no matter how feeble his voice was, “Simply marvelous!” When he learned that what he had was more serious even than polio, he was impressed and pleased. He would laugh and say, “Nothing can hurt my old brains!” He was sickish one afternoon and I told him that the medicine he was taking always knocked hell out of people. “It won’t knock hell out of me!”
“That child,” one of his nurses told us, “is a picnic twenty-four hours a day.” When his eyes were still black, he asked for a couple of beefsteaks to put on them, and then suddenly reconsidered. “Oh, no, there’s a meat shortage still!” If no one answered his bell, he would alert the entire corridor by blasting away on his recorder. One nurse said something mildly anti-Semitic once and he turned to her gently, “ I think you ought to know that I’m half Jewish.” He wasn’t hungry for breakfast one morning, and the nurse, by some maneuver, got him to eat some bacon he didn’t want. He turned to her with the words, “You are truly Machiavellian, like the British in India.” He always wanted to know, with fierce insistence, the exact nature of his medicaments; he would worm the information out of the nurses, and then get more information by a simple process of blackmail—he would threaten to tell the doctors “on” the nurses. Once— supreme moment—he turned to Putnam himself and threatened, if Putnam didn’t agree to something he wanted, to go to an osteopath.
And his considerateness! Once he told Frances that he had been chilly during the night. She asked him why he hadn’t called the nurse. His reply was that he hated to disturb her because she must be tired out. One night he telephoned me very late, when I was asleep. He apologized, “Oh, I’m so sorry, Father!” and then talked a bit in what Frances once described as “his sweet, gay, buoyant, breaking voice.”
A child knows everything, and nothing. Johnny could tell me all about the Andromeda nebulae—but he didn’t know that the simple reason why his head had to be elevated was to relieve pressure. Some days after another spinal tap, Traeger explained the procedure and how the fluid had to be drawn out with extreme care and very slowly; otherwise the brain might, as it were, crash down through its own cushion of fluids. “Well,” Johnny said. “Now for the first time I’m glad a doctor didn’t tell me everything; I would have been somewhat alarmed if I had known that when the first tap was taken!”
Slowly, very slowly, Putnam took us into his confidence. We were crazily optimistic for ä week or two; we even made plans for Johnny to recuperate down at Virginia Hot Springs. The preliminary diagnosis was of astrocytoma. This is a type of tumor comparatively benign, and even if Putnam didn’t get it all, there was a fair chance that X-ray therapy might knock out the rest. It takes some weeks to prepare the slides of tissue that confirm the type of tumor; the procedure is extraordinarily involved. Not only do tumors grow; they may change from one type to another. A doctor told me in the corridor one day that the slides were ready; I saw something in his eyes and could not bear to ask what they indicated. I walked right by him refusing to talk and he must have thought I was crazy. Then the next day Putnam called me into his office, with Lester Mount, his youthful associate who carried on to the end, standing by. What Johnny had was much worse than they had feared; it was not an astrocytoma but something called an astroblastoma undergoing transformation. Now Putnam explained why he had not closed the skull but had left open, covered only by a flap of scalp, an area in the head about as big as my hand. This was to provide “decompression,” i.e., to allow the tumor, if it continued to grow, to bulge outward, instead of inward which would destroy the brain. If Putnam had sealed up the skull with bone or a plate, Johnny would have been dead in a month. The scalp is quite a tough piece of leather but, obviously, it provides less resistance to a growing tumor than would bone. The flap—what agonies Johnny had over that flap for fifteen months!—was a kind of escape valve. Also to have the skull open (except for this flap of scalp) allowed easier access to X-ray. But the open skull produced disadvantages too, in that Johnny had to be very careful not to fall or otherwise injure the soft spot. The soft spot was shockingly large; when the bandages were removed and we saw for the first time the extent of Putnam’s incision, we were stupefied.
I went to the library to do some more reading. There I discovered that any type of tumor bearing the prefix “glio” (=glue) is invariably fatal. I rushed to several doctors, appealing to them to say that surely, surely, Johnny’s tumor could not be of this deadly type. “Of course it isn’t,” they replied.
Johnny continued to recover nicely. His eye didn’t droop any more and, except for a slight weakness in his left leg, he seemed to be quite well. The weakness bothered and worried him, of course, but Traeger explained it as purely the result of shock—surgical “insult” and consequent edema. Over and over we told Johnny, lying, that the tumor was dead, that Putnam had got it all. What was affecting him, we said, was simply the after-effect of a terrific operation. Once he seemed sad. He muttered bleakly, “Everything is frustration!” Then he snapped out with the remark, “I’ve done nothing for six-teen years except think about myself, so naturally I sometimes get depressed!” Always he tried to save us from worry
What really interested him was getting back to school. He was terrified to think of what class work he had missed, and how he was going to manage to catch up. School!—we did not dare tell him that it would be a miracle if he ever saw a school again. How he fooled us on this!—as these pages will soon tell. Hoping with such vehemence to recover, yearning with such desperation to be all right again, refusing stalwartly to admit that his left hand, too, was showing a little weakness now, he became
heartbreakingly dutiful about everything the doctors asked. He was still limited as to fluids; drop by drop, he would measure the exact amount of water he was permitted. All he wanted was to obey, to obey, and so get back to school.
Once, however, he had an outburst. In a frightening and intense moment, with his blue eyes glowing and burning under the white turban of bandage like Savonarola’s, he protested with the utmost violence against his regime at Deerfield. He said that his schoolwork “went against the grain,” that he couldn’t stand being held back by his class any more, that he must get on to Harvard right away because he was being “held back,” that he was perfectly competent to do college physics now but that he had to waste all his time and energy on “stultifying” texts and experiments that he had long since passed by. “ I feel a moral conviction about this,” he exclaimed to Frances, “a religious conviction Ã
He began to show great curiosity now about what caused the tumor, and he even suggested that the strain of “holding himself back” at Deerfield could have caused it. What did cause it? Patiently Dr. Mount and the others traced back through Johnny’s whole history for any evidence of a shock, blow, or other clue. Once Johnny said triumphantly, “ I know what caused it!” “I f you do, you’ll have revolutionized medicine,” Mount replied with his grave, friendly voice. Johnny’s theory was that he had been sitting far back in a chair playing chess and then slipped and banged his head on the iron radiator. But this blow had not even left a bump or bruise, and nothing so slight could possibly have put into motion any growth so deadly. The plain fact is, of course, that nobody knows what causes a malignant tumor. The origin of life itself is not more mysterious. The causation of cancer is the greatest and most formidable of all the unknowns of modern science.
One grayish afternoon Johnny showed this prayer to Frances:
Almighty God
forgive me for my agnosticism;
For I shall try to keep it gentle, not cynical,
nor a bad influence.
And O!
if thou art truly in the heavens,
accept my gratitude
for all Thy gifts
and I shall try
to fight the good fight. Amen.
The story behind the prayer is this. He called it an “Unbeliever’s Prayer.” Johnny had never prayed; perhaps this was a reaction from his dislike of chapel at Riverdale and his resentment at having been obliged to spend a good deal of time listening to organized religious exhortation. To counteract this tendency, Frances began to read him prayers of various kinds—Hindu, Chinese, and so on, as well as Jewish and Christian. He was interested in all this, but it did not mean very much to him at first. Then she started him on Aldous Huxley’s anthology of prayer, The Perennial Philosophy, and told him how intimate and very personal prayer could be. Once she suggested that if it should ever occur to him to think of a prayer himself, of his own special kind, he should tell her. So, very casually, with an “Oh, by the way . . .” expression, he said, “Speaking of prayers, I did think one up.” He recited it and only disclosed later that he had previously written it down and memorized it.
At about this time he became fascinated by the Book of Job. He asked Frances to read it to him several times—which she did while barely able to face doing so. “It will teach me patience,” Johnny said.
He was cheerful again that evening. “Pop,” he said, “you should be working on Inside U.S.A. and writing speeches, not spending fifty thousand dollars a month to keep me here!”
Frances always told him that when I arrived he should cheer me up. By this time, very sensitive to us both, he had developed the habit of presenting us with different sides of his character. Often Frances and Johnny, talking about philosophical abstractions or merely discussing hospital routine, would hear me come along the corridor; Johnny would instantly change his attitude and demeanor, even his physical posture. Similarly, when I was alone with him, he would make an about-face when Frances came. 3he helped him immeasurably by trying to make theater of the recurrent daily medical crises, and he played up to this wonderfully. He dramatized his relations to the doctors and the nurses. For instance if they seemed tired and overworked, he took pains to be particularly cheerful with them; if not, he would assault them with amiable complaints.
On May 28 we had more bad news; Johnny fainted going to the bathroom, and the pathologist’s report was worse. We tried to face asking the questions we could not bear to ask, since little by little new horriblenesses, new dreadfulnesses, were being hinted to us—about blindness, about paralysis. Several doctors seemed to be avoiding us, and Putnam himself said little, glossing it all over, and telling us to put our trust in the X-ray therapy now beginning. One afternoon we walked briefly in the garden, and a hundred yards away in a doorway leading to the lawn, I saw a young man, apparently a spastic case, writhing, twisting, grimacing, being held tight by a male nurse. I turned Johnny around sharply. I do not know whether he saw or not.
Later I peeped at the sheet on the technician’s desk in the X-ray room. There it was as clear as daylight—Johnny’s tumor was “undergoing glioblastomatous transformation.” That prefix “glio”! No doctor had quite dared to tell us.
The first time I saw Johnny really frightened came at about this time, when he got ready for the first X-ray. He kept saying that “surely” this must be “just for taking pictures.” He said to me again and again, anxiously, “It’s just for pictures, isn’t it?” Then he knew from the time he spent under the machine that something much more serious than taking pictures was going on, and that this must be a form of treatment. He turned to me firmly and asked, “Does this mean that I have cancer?” Then he murmured to Frances later, “ I have so much to do! And there’s so little time!”
2
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 els
e, 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.
