ANONYMOUS
I CAME down with polio two years ago, and the time intervening between then and now has opened up a new world to me. After my initial isolation period, I went to the orthopedic ward of a large general hospital. It was here that I first came to know other long-term patients well. Before my children begin to drive, I am going to take them to visit a ward like that one. The consequences of too much speed or a drink too many couldn’t be more terribly illustrated. Death on the highway may be frightening, but the life of a severe traumatic spinal injury case is a worse hell than anybody has ever imagined.
You can enter this inferno by getting an injury to your spinal cord. From roughly the point of injury on down, the paraplegic loses all muscle control and all sensation, except for certain wandering pains. The first consequence of this, as in the case of severe paralytic polio, is the inability to walk without leg braces and crutches. But there are differences — differences that make most polio cases insignificant by comparison.
The polio victim knows when his foot is next to an overheated radiator. One of the paraplegics at the hospital got badly burned because he didn’t. A polio’s sensory awareness makes it possible for him to have sexual intercourse. Traumatic paraplegia usually rules this out. No sensation is left, though desire remains unabated. The loss of muscle control means loss of bladder and bowel control as well. A lifetime of enemas is no joke. And bladder infections and seizures constantly plague the paraplegic. Then there are violent spasms in the affected muscles to complicate what is left of life. Quadraplegia is the same as paraplegia, except that the arms are involved too, and the area of anesthesia is greater. One quadraplegic I knew had lost the capacity to sweat.
The hospital I was in had a few quadraplegics and several paras. They constituted the aristocracy of the orthopedic ward. Their rights and privileges were carefully observed. The rest of us were ranked below them, according to severity of affliction and length of hospitalization.
My first visitor among the patients was a fellow polio. Like me, he had both legs impaired. Neither of us had lost much in our arms. A little later on, some of the paraplegics dropped by, but except for one who seemed to yearn for company they held a bit aloof. The quadraplegics never came, though in time I became a good and properly deferential friend of two of them. We met mostly in the physical therapy clinic, the library, or the corridors.
Status among the patients is not governed by the same tokens of respect and prowess as those the outside world knows. The first and most clearly defined right of the aristocracy is the right to be left alone; to be able to make or break social contact at will; to retreat into the lonely haunts of a mind bereft of body and not to come forth again save at one’s own volition; to enjoy the torments of hell in peace.
On the awful eminence of a Strykker frame (a rubber-cushioned substitute for a bed that makes tending and turning much easier) to which he was permanently wedded, the worst off of the quadraplegics maintained an almost total silence. It was broken only when he asked for a cigarette, which had to be tended at his mouth by another person, or when he invited a brief conversation. The only regular contact he maintained with the world was what he heard one afternoon a week when a Red Cross Gray Lady read extracts from magazines to him. He had long since declined any further offers of communication.
The other quadraplegics were able to sit up in wheel chairs and had enough muscle control left in their shoulders to move about a little on their own. They were, consequently, more approachable, but deferred in the right to begin conversations only to the man on the frame. They could be wheeled into the physical therapy clinic and maintain an absolute silence if they cared to. On the other hand, they could be lively and communicative, but the tone was always one they set, and no one else would have thought to try to change it. Close to their status was that of the paraplegics. I, whose problems superficially resembled theirs, could approach them and receive easy recognition. But when my first overtures were refused, I understood that no further effort should be attempted at that time.
Beneath the paraplegics there was a more loosely defined third estate composed of permanently crippled polios, less serious spinal injuries, badly shattered pelves and hips that required months in enormous casts, and other long-term cases. There was an intra-class deference paid here by those who would someday return to reasonably full body function to those who wouldn’t. Below that came those with no status at all — the simple fractures and sore joints, who came and went, it seemed, as easily as the night nurses relieved the day nurses.
As in all enduring hierarchal societies, rights were not accorded in the hospital without involving duties. The duty of the aristocracy was to provide the horrible example of greater suffering to its subordinates.
The house painter with his arm in a cast for a month could ease his regret at the loss of salary and the expense of medical bills by looking at the shattered hip next to him with two months in plaster and three more to go. The hip could lighten his troubles by imagining what it would be like to have polio and never walk again without braces and crutches. The polio saw his problems fade to insignificance beside those of the paraplegic. The paraplegic could comfort himself with the thought that, however limited, life outside the hospital might someday be possible for him in contrast to the future ahead for the quadras. The wheel chair quadras could see in the man on the Strykker frame a prospect beyond even their own melancholy eminence. He alone, like the solitary Inca, could look only downward, compensating as he could for his loneliness with the deference paid him by the rest of us.
IN MY last months at the hospital I had become thoroughly rank-conscious and knew exactly where I fitted in. All the other long-term patients knew their places too. Life went smoothly for me until they moved a broken thigh, a gentle middleaged man, into my room. He had never been in a hospital before and found the environment disturbing. In addition, his hip hurt him and he complained about it. His conduct had nothing in it that wouldn’t have aroused compassion in the normal breast. He tried to strike up a conversation with me because he wanted — and deserved — sympathy and assurance. All he got from me were curt responses to his inquiries and comments such as “everybody has his troubles” when he mentioned his pain. I realized at the time that he needed help over the initial period of adjustment to hospital life, but I couldn’t help him. He didn’t know his place and until he learned it there was nothing I could do. Fortunately for both of us, I left the hospital soon after his arrival.
I had a roommate, a broken pelvis, for a couple of months, who was a good friend of the hospital barber. The barber dropped by almost every day to gossip, and I soon discovered him to be the best source of local news. He was not only aware of all the happenings in the social world of the staff, but was well informed on the condition of the seriously ill, whom he shaved at their bedsides.
The hospital proclaimed each death with solemn ceremony. The bed on which the deceased breathed his last was stripped for airing and wheeled out onto the open sun roof. Through the barber, I not only knew on these occasions whose bed it was, but often could predict with accuracy whose would be next.
I followed one case from beginning to end via the barber. A fellow with pains in his head and some trouble in his coördination got a haircut. Gossip with the doctors indicated that he had some sort of growth in the brain cavity. The patient weakened and began to need shaving in bed. (From this point on we got much more detailed reports.) His legs gave out; then he went blind; he developed respiratory difficulties and had to go into an oxygen tent. This made the barber’s work very exciting because the patient had to be taken out for shaving. The barber was notably depressed one day when he admitted that he’d only been able to get halfway through his task before the man had to be put back into the tent. Not long after that a new bed appeared on the sun deck.
ONE of the deep undercurrents in hospital society is the secret envy and competition for recovery among patients. The new patient is usually subject to detailed inquiry about his condition by those on approximately the same level in the social hierarchy. The interrogators then individually rate the newcomer relative to themselves, considering severity of affliction, length of service, and prospects for recovery. The most common tendency for the new man is to emphasize his difficulties and to strike for as high a rating as he can get. This has two major advantages; more deference will be accorded him and, if he has prospects for improvement, his progress will appear to be more rapid than it actually is. Perhaps the greatest satisfaction in a patient’s life is to overtake a person who initially had a lesser affliction. Though high status in the hierarchy has its merits, descending therefrom has incomparably greater charms. One of the heaviest burdens the austere nobility must bear is to remain fixed, like milestones by which those on the mend can measure their progress.
When I first arrived in the orthopedic ward, my arms were quite weak, and this — combined with the flaccid condition of my legs — gave me a certain status even with the junior quadraplegic. He was a handsome young man with a pleasant smile and a tender heart. I remember his saying once, “This has made me much nicer than I used to be.” I imagine that he was a very nice guy when it all began, too.
His life had been cut short three years before, but he hadn’t adjusted to not living. He kept on hoping and working toward emergence into the outside world. He had developed tremendous power in his shoulder muscles, which were all he had left to work with. Somehow, with leg braces and his shoulders, he managed to drag himself along vertically between the parallel bars where patients first learn to walk.
He had just learned to do this when I arrived and, since it was his first real accomplishment in two and a half years, he was vastly encouraged. But while I was there he never went beyond this feat. He did manage to increase the number of trips through the bars he could make without resting, but he was never able to graduate to crutches.
During all this time, as he pulled himself through the bars, he could watch the strength come back into my arms and trunk and the glimmerings of power even in my legs. He saw the hospital measure me for braces and, when they were delivered, how easily I could put them on. He saw me lifted up to the bars and noted how I could stand without holding on to them. He saw that my first attempt to move between them was better than what he could do after years of effort. And I shall never forget the look on his face, as he sat there in his wheel chair, tears in his eyes, his lips pressed together, and his chin trembling. After a while he got control of himself sufficiently to murmur, “Pretty good, there.” I tried to thank him for his acknowledgment, hoping that my feeling of triumph was somewhat dampened in my expression by my shame in feeling that way.
When you have become an established part of hospital society, the competition in recovery with those cases most similar to yours becomes very keen. Another polio and I almost immediately selected each other. This competition, so far as I can see, doesn’t hamper real and deep friendship.
I was my competitor’s senior in disability by two months, so that our comparative progress had always to be converted by a time factor.
Each time he was able to do something new — sit up longer, lift himself up in his chair with his arms, get on and off the toilet — we carefully compared notes. I usually exaggerated my abilities at the equivalent point in my career, and he indicated how easily he had done whatever it was.
At Warm Springs, I understand, the patients are separated into three categories, each of which lives apart from the others. The categories are divided according to degree of disability. There may be other reasons for this, but one happy result is that the severely afflicted aren’t taunted throughout each day by the sight of roommates much better off than they are.
I must add, on this general theme, that I have never met a severely paralyzed patient who wasn’t revolted by the “I triumphed over” literature of the popular magazines and a particular breed of religious pamphlet. The cases I have tracked down are all essentially, though perhaps unwittingly, fraudulent. The polio who, once having been severely paralyzed, makes a complete recovcry almost certainly never had polio in the first place. There are many conditions that initially look like the real thing but differ in important aspects; the first of these is that in non-polio, the anterior horn cells of the spinal cord aren’t eaten away by a virus.
Any polio — subject to the quality of the treatment he receives — will get back whatever muscle function he is going to get back by doing what the doctors tell him to do. The limit is strictly set by the amount of damage done by the virus to his nervous system. Neither nobility of spirit, strength of will, nor faith in God will make him any better. These things may help him make a better adjustment to his condition, but they can’t improve it.
It is, of course, much more ennobling to the person who thought he might emerge crippled, and didn’t, to believe that his recovery stemmed more from his courage and faith than from pure chance. And the general — and unafflicted — public eats this story up. “The tale of one man’s courageous struggle and victory,” and so forth. Thus one person’s self-delusion and the public’s vulnerability combine to produce such frightful travesties on reality as the televised version of “Rise Up and Walk” of New Year’s Day, 1956, or “She Rode to Victory over Polio” in a 1955 Reader’s Digest.
To recount an amazing recovery and attribute it to the steely determination of the recoverer is by implication to charge the permanently disabled with chickenheartedness. To imply that they were struck down by God for their sins is even worse.
I don’t mean to say that religious faith cannot be a great consolation to the afflicted and a very powerful force in sustaining morale and adjusting to changed circumstances. Obviously it is, to many of the disabled. But religious counseling sometimes leads the counselor to instill in the counseled something quite different from consolation or from the determination to go on, no matter how hard the road. The concept of trial through suffering, for instance, often plays a part in the quadraplegic’s continuing will to live. But even this, let alone the idea of being singled out for damnation, should be left, it seems to me, for the sufferer to seek in his misery and not suggested to him by others. I have seen many cripples too deeply disturbed by having read or heard some tract on punishment and redemption to remain silent on this subject.
EVERYBODY seems to react in a different way in adjusting to permanent disability. I try to pretend that nothing has changed and attempt to do everything for myself, no matter how much inconvenience or confusion it causes for those around me. Some people come to think that they are being tried like Job and find mystical happiness in their misery. I had one friend, a paraplegic, who had to assert his individuality by the most ostentatious drinking I’ve ever seen.
In the hospitals I’ve known there have been a good many hidden bottles for quiet nipping, which the management overlooked. But Johnson couldn’t drink that way. He wasn’t an alcoholic; I don’t think he really liked the stuff very much, but he had to show the world that, legs or no legs, he was still Johnson. He would hide a bottle under the sheet that covered his legs in the wheel chair and drive into the office of the resident neurologist or some other equally impressive authority. There, in front of the doctor, his secretary, and whoever else might be present, he would produce his whisky and gulp it down until the bottle was wrestled away from him. Sometimes he would slug off half a bottle and then roll roaring drunk into the hospital lobby. Some of us used to point out to him the advantages of discreet tippling, but we had missed the point of his drinking. It wasn’t tippling but indiscretion that he craved. If he didn’t act that way, people might have thought that he was just another faceless cripple.
Adjustment to physical disability is a problem for the patient’s family too. In fact, it is often harder for the family than for the disabled. If the patient still can lead a useful life outside hospitals, adjustment to his limitations usually comes fairly easily. It is harder, I think, for school-aged children, adolescents particularly, but it comes. But parents, even more than spouses, seem to find it very difficult to get used to. The parent looks at the child — in my case, even the child approaching middle age — from a particular historical perspective. He sees the child’s “world line” (to borrow a term from those who write about relativity) in its entirety, from birth to the present, and he charts, if only vaguely, the onward course he hopes it will follow. To have it altered by being capriciously intersected by somebody else’s automobile or by a polio virus comes as a greater shock to the parent than to the victim himself. We live, it seems, more in our hopes for our children than in our hopes for ourselves.
I was puzzled for a long time by the attitude of my parents. They seemed totally unable to accommodate themselves to a reality that my wife and I had long since accepted. Then one day in the hospital brace-repair shop I saw a little boy just the size of my son, and with about the same color of hair. He was wearing one long leg brace and walking on crutches. He walked nimbly and with assurance. He didn’t seem to mind the encumbrance of his supports. But I have never been so touched at the sight of a cripple as I was then.