Two Legs to Stand On

by JOHN D. McKEE

1

THE weather was near blizzard proportions that day in December. Early in the evening there was a knock on the door of a small cottage in Emporia, Kansas. A young housewife, heavy with child, answered the knock. A little boy stood on the porch with homemade pine wreaths clutched in blue, gloveless hands.

His face was pinched with cold, and the wind whipped through his worn, thin coat. Would the lady buy a wreath? She would, and she would invite the little waif to warm himself before the fire. This is a sad way, she thought, for a little boy to be spending his time, and so near to Christmas, too.

The little boy did not tarry long, but his face remained in her memory for many years. Especially would she remember his blue-cold hands, and the clumsily contrived wreaths they held.

My mother always associated the little boy and the Christmas wreaths with my birth, for at 8.30 that evening I made an all too sudden appearance into the world. I arrived about two months ahead of schedule, much to the consternation of my mother and of my father, who at the time was on the other end of his run as a Middle Division brakeman on the Santa Fe Railroad.

I weighed at birth a scant two and a quarter pounds. I was christened John DeWitt — John for my mother’s older brother, and DeWitt for my father—but anyone could see that all that name was too much of a load for such a tiny mite, and almost immediately the name was shortened to Jack.

I was born at home and there was no incubator available, so I was bundled into a clot hesbasket and surrounded by hot-water bottles and hot bricks wrapped in flannel. Apparently I thrived on this hothouse treatment. When I was only a few days old my father’s hand served as a cradle. A short time later, the man who delivered the groceries, on seeing my dangling arms and legs, said, “My, ain’t, he growed! Why, put him on a piller and you couldn’t of found him!”

There didn’t seem to be anything the matter with me at this time. At the age of four months I weighed fourteen pounds. When I was fourteen months old I was putting words together into sentences.

But, as the months went on, it became apparent that something was terribly amiss. It was not only that I made no attempt to crawl. I was a year old before I could even sit up by myself.

It was about this time that Mother took me to a clinic. The doctor gave me a thorough examination and checked each item on the examination card “O.K.” until he came to feet and legs. There he put a big X, and under “Remarks” he wrote “Spastic. Suggest stretching exercises.”

“All I learned from that examination,” Mother says, “was that there was something wrong. I had no idea what spastic meant, and the doctor didn’t explain.”

Long afterwards, Mother told me that while she was carrying me she had slipped and fallen on an icy sidewalk. Such a fall may have caused my premature birth or injured the motor nerve centers of my brain and sent, me into the world with cerebral palsy. The injury which causes cerebral palsy may occur before, during, or following birth. It may be that the birth process having begun early, I suffered cerebral anoxia, a lack of oxygen which is caused by premature cessation of the oxygen supply from the mother to the fetus, and which results in damaged brain tissue.

Whatever the cause, the results are somewhat similar to crossed wires in a telephone exchange. Like ringing Smith’s number and getting Jones, if a cerebral-palsied person sends a mental signal to his foot for action, his arm may tighten in sympathetic, or even independent, action. The wires are crossed somewhere.

There must have been some dark days indeed between the time Mother took me to the clinic and the time I was two.years old. Most of the progress which has been made in the treatment of cerebral palsy has taken place in my own lifetime, and in those early years, at least among the doctors who saw me, diagnosis of the condition was the only advance made. Treatment was by trial and error if there was any treatment at all. The long struggle to get me on my feet was begun almost entirely by my father and mother.

With a pillow behind me and a pillow propping me up on either side, I could sit up by the time I was a year old. Sometime between my first and second birthdays, I began to sit up alone, and by the time I was two — way behind schedule — I had finally begun to crawl. Although it was a redletter day when I began to get over the floor under my own power, part of the difficulty I was to have later became apparent then. When I crawled, I thrust my arms ahead of me. Then I drew up my legs, both at the same time, with the action originating from the hip. There was no reciprocal action between arms and legs, or between the legs themselves. It was to be years before any sort of reciprocation, necessary above all else for walking, was obtained.

But I was craw ling, regardless of how aw kwardly. Now, at last, there must be some hope for my walking.

The day I first, hunched myself across the floor marked a beginning and an end. Such progress symbolized for my parents the end of a period of black bewilderment and despair when, but for hope and faith, there was no evidence at all that I would ever move from my bed. But the act also marked the beginning of an almost equally frustrating period because for years I did not progress beyond the crawling.

The doctors said I would probably never walk. They considered it something of a miracle that I learned to crawl. Shortly before the age of six, after many false starts and an operation, I learned to walk. After four operations and a great deal of physical therapy I have walked my way through grade school and high school, and am now walking through college; and I have held jobs which required the walking of several miles daily.

I went to Boy Scout, camp two summers. One of my favorite ceremonies at the camp was the ritual of the Yellow Ribbon. When a Scout learned to swim, the yellow ribbon which had marked him as a novice was ceremoniously cut from around the initiate’s neck with a large butcher knife from the camp kitchen. I was never the star of the Yellow Ribbon ceremony. I wore my badge of aquatic ineptitude throughout my two terms at camp. But at the age of twenty-eight I learned to swum.

Because I fell often and unexpectedly in my early years, I did not so much as walk the downtown streets alone until I was a senior in high school. Yet some of my college years have been spent away from home. 1 gained confidence as my independence increased, and I roamed the streets of a city much larger than my own with complete unconcern.

2

PARENTS have hidden cerebral-palsied children away in their homes because they were bewildered and shamed by what they brought into the world. Cerebral-palsied persons have been committed to homes for the feeble-minded simply because they have been unable to express themselves and demonstrate their intelligence.

Circumstantial evidence is against us in many cases. The average victim of cerebral palsy is often not attractive to look at. His facial muscles may contract uncontrollably, so that he grimaces and grins for no apparent reason. Unable to swallow correctly, he may drool continually. He spills his food and struggles painfully with each word he utters.

I have been spared the facial contortions and the drooling, the garbled speech and the inverted breathing, but I still have to watch myself carefully when I eat in company. Eating out could have been one of the hardest problems for me to face. But in this, as in all things, my parents refused to let me think of myself as any different from my brothers, or from other normal people.

At home with my family, I was perfectly relaxed. If I spilled something at the table, such an act was regarded as an ordinary occurrence, merely as if one of my brothers had spilled his milk or dropped his bread butter-side-down on the floor. Once in a while, if I was having a particularly tough time, and was spreading my food around the dining room with a lavish hand, Mother would say, “Why don’t you sit on the floor, Jack? Anything that falls up, we’ll hand down to you.”The tension was broken by the laugh that always followed, and I could usually finish my meal with a minimum of spilling.

From my own experience, I am convinced that my parents’ attitude is the only one to adopt in regard to the problem of a cerebral-palsied child. My cerebral-palsied friends who have solved their problem indicate a remarkably similar psychological influence.

I met Hubert Shelley when I was going to Kansas Wesleyan University and he was attending McPherson College. Hubert’s walking problem was as difficult as mine. His speech was so troublesome as to make recitation a chore. Penmanship, in Ins athetoid hands, was a scrawl. Yet. he was in his junior year in college, and when I met him he was returning from Iowa, where he had hitchhiked to attend a national students’ meeting.

We met in the college dining hall, and since our conversation was not nearly finished by the end of the meal, I invited him to my room. Hubert had had trouble getting his food from the plate to Ins mouth, and the area around the plate showed the effort, but the only reference he made to it came when we were ready to leave. “I’ll be ready to go,” he said, grinning and reaching for a drink with both shaking hands, “as soon as I spill some more water.”

When you have been mentally and chronologically an adolescent but in physical abilities yet a child, and one day for the first time you tie an acceptable bow in your shoelace and, for the first time, the knot stays firm throughout the day, then you may realize something of the magnitude of walking for a period of three weeks without falling. When, after years of having someone tie your necktie for you, you spend an afternoon before a mirror and tie and retie a four-in-hand knot until you finally learn how to do it, you have cut another strand of the web of dependence. When you have done that, then you may realize what a gigantic advance you’ve made when you can go through the intricate ritual of shifting gears and getting a car under way.

Because of the hypertension of my muscles, and because of the rigid reaction of my muscles to any startling situation — a reaction which continued into adolescence — my parents said it was obvious I would never drive a car. In October of 1949 I passed my tests and got a license to drive.

Suppose for years it has taken you at least an hour to bathe, and you cut the time to half an hour. Suppose only the index finger has escaped the paralytic stiffness of your right hand, and suppose you teach that finger to take its part in typewriting. You would join me then, I think, in agreement with Walt Whitman: “The narrowest hinge in my hand puts to scorn all machinery.”

Even if I had not made the physical progress I have, I still would have the compensation of development in other directions. If I had been an active child, I might not have gained my early and still sustained love of reading. If I had been able to participate in organized sports, I might never have learned the intricacies of more than one or two athletic events. I might never have acquired the ability and inclination to write about them.

All of which is at least part, of the reason why I do not consider myself handicapped. Handicapped is an unfortunate word. A person is handicapped only when he fails to look on his particular problem as a challenge to be met. Once he accepts the challenge, what could have been a handicap becomes but one more obstacle (of which there certainly are many besides physical ill-being) to the achievement of one’s dreams.

If I am handicapped, then everyone is handicapped. Everyone has problems of personality, of capabilities or the lack of them, of desires just, out of reach, of visions tantalizingly obscured by clouds of his own making. This individual lacks education, that one in it iat ive. This one is burdened with a crutch, that one with his fears. Indeed, I strongly suspect that the only true handicap travels under the soft and pious name of resignation.

I insist, therefore, that I am not handicapped. I am merely different. And my difference is of no more real importance than the individual differences in temperament, capabilities, and personality which give to each person his own shape and color in the human crazy-quilt.

By no means is that to say that I do not have my doubts and fears. I learned, long before I read the statement, that a cerebral-palsied person is a creature of alternating high-flying elation and profound depression. I have tried to avoid such an emotional seesaw, but I have not always succeeded.

Mine is not, however, a blindman’s-buff approach to my physical deficiencies. At times it seems that I have come to the end of my progress. I was in such a mood while I was deciding to write this essay and I discussed the problem with my mother.

“After all,” I said, “maybe there are some things I can’t do.” Mother has seen me defeat all the difficulties I have surmounted so far. She and Dad have driven and goaded and cajoled me into doing things I would not have attempted otherwise.

She looked me in the eye and said, “Name one thing you can’t do.”

“Well,” I said, thinking of certain times of loneliness in my high school and college days, “I can’t dance.”

“You’ve never tried,” she said, and she left it at that.