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Don't Talk To Us Of Living Death!
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1 | WE HAVE a happy home life -- my wife and I. A simple statement, that, but we never make it to our friends. They can't believe it. | |
2 | The uselessness of trying to convince them became clear just before our third child, Jeff, was born. Joyce and I had stopped at the Burnses' for an evening visit. The practical nurse who lives with us was at home with Eddie and Nancy. | |
3 | Across the room I heard Mrs. Burns adopt the maternal tone which meant she was thinking of our boy Eddie. | |
4 | "Oh, I know you're happy, my dear," she said to Joyce. "You and your husband are so brave, having another one. With living death right in your home that way. . . ." | |
5 | Joyce merely looked at Mrs. Burns, smiled and said: "Living death? What is that?" | |
6 | Mrs. Burns flushed and looked away. Joyce and I left as soon as we could. "Let's quit trying to make people understand," I said as we drove home. | |
7 | We have never explained our home life since. Instead, we've made our home a mysterious island, immune to the probing pity and curiosity of friends and relatives. We inhabitants of that island are happy with it. We think that also holds true for Eddie, our first child, now nine years old, the real object of this misplaced sympathy. | |
8 | Eddie is one of those children born in every generation whose brain never develops. In short, our oldest boy is an idiot. We accept that fact. But until that day four years ago when both of us faced it, we had no family life, were near divorce, and Joyce teetered on the terrifying edge of insanity. | |
9 | Born a beautifully formed baby, weighing an adequate seven pounds, today Eddie looks like any normal nine-year-old, though his arm and leg muscles are slightly flabby from disuse. Brown curls twist over his head. His sole outward sign of feeble-mindedness is the vague shadow of a smile that flickers continually across his face. | |
10 | We always speak of what happened to Eddie as "The Accident." Dr. Green, who delivered him, introduced us to the word. On Joyce's last evening in the hospital, I sat beside her bed, warmed by the sight of her fingers lightly playing across the baby's face. | |
11 | The door opened softly and Dr. Green entered. His face was tight. "Don't take my word as final," he said, "yet I would be less than honest if I didn't give you my frank opinion. Eddie is the victim of one of nature's accidents. I'm afraid his brain will never develop. He has all the signs of feeble-mindedness." | |
12 | "How can you tell?" said Joyce fearfully. She drew the baby closer in a protective gesture. "He's only five days old. How can you tell?" | |
13 | Dr. Green's words came haltingly. "There are thousands of exceptional children born every year. You must not let it frighten you or affect your normal life." | |
14 | As he talked, I reached for Joyce's hand. Then Dr. Green turned and, without looking back, left the room. | |
15 | "Don't worry," I was saying to Joyce. "We'll see other doctors. Even Green admits he may be wrong. . . ." | |
16 | On that note we set sail on a five-year voyage. Our ultimate goal: peace of mind. We could not know, we could not be told, that our route had been previously charted for us. When we finally could face facts, we learned that we had followed a pattern so commonplace as to be tragic. Parents, when they learn a child is so afflicted, pass through three well-defined stages. We went through them all. | |
17 | Stage I began for us the day Joyce left the hospital and we resolved never to call Dr. Green again. A month later, I set out with Joyce and Eddie to see a Baltimore specialist. He gave his verdict quickly. For some reason, Eddie's brain was not growing. He told us that all babies are born idiots, because the cortex is the last portion of the brain to develop. Normally, after birth, the cortex cells mature faster than any other part of the body. | |
18 | Sometimes, however, the stimulus required to start growth of the cortical cells is lacking. When this happens, the child will never possess any more intelligence than he was born with. | |
19 | It seemed useless to question the diagnosis. Where Dr. Green had left a suggestion of doubt, this specialist did not. | |
20 | "What can we do?" Joyce said. | |
21 | "Get rid of the idea you're responsible," he said. "I find no clue in your medical history that explains why this happened. Nature just made a mistake." | |
22 | At the end of five weeks, we had been to hospitals in Baltimore, New York, Chicago and Philadelphia. The result was always the same: no hope. The expensive tests and fees, plus travel expenses, had exhausted our savings. I was convinced the doctors were right. But I couldn't say that to Joyce. Then one night I awoke to hear her sobbing. | |
23 | With her head on my shoulder, her sobs gradually died away. "I can't bear to hear another doctor say it's hopeless," she said. "We've nothing to be ashamed of. Our family and friends will understand." | |
24 | THAT ENDED Stage I. Before we started on the round of hospitals, we had treated furtively all inquiries about Eddie. Now we welcomed questions and paraded our newly-acquired medical knowledge before all comers. But when I said such accidents might happen to anybody, a silence always fell on the room. The hostess usually changed the subject. | |
25 | "I'll be darned if I go back to Grace's house ever again," Joyce said one evening as we drove home from a bridge party. And so, not knowing we were victims of a familiar behavior pattern, we launched ourselves into Stage II. | |
26 | We dropped all social contacts. Whenever we received an invitation, it seemed easier to beg off -- we had to take care of Eddie. | |
27 | Taking care of him was a major job. From birth, he lacked the instinct to take nourishment. We frantically forced milk and baby food down his throat to keep him from starving. But after two years, we were proud of our accomplishments. He still could not walk or talk. But he was eating. | |
28 | When his fourth birthday came around, Eddie had learned to walk. The three of us had a birthday party for him. The highlight came when Joyce placed a cake with four lighted candles before him. We waited, hardly daring to breathe, until he leaned forward and solemnly blew out the candles. | |
29 | "Darling, he did it!" Joyce fairly screamed. "He blew them out!" | |
30 | Tears rolled down her cheeks. I could only guess at the hours she had spent with him, practicing this simple act. I smiled to show my pleasure, and Eddie watched with his vacant, other-world expression. | |
31 | But even patience and courage must be limited by human endurance. Joyce was fast approaching the breaking point. She was 20 pounds underweight, and actually looked older than her mother. | |
32 | I made my first visit to Dr. Green since the night he had told us of Eddie's condition. When I told him about Joyce, he shared my alarm. He advised placing Eddie in a special school. He named several and I filed the idea for future use. | |
33 | A few days later, Eddie slipped out of the house while Joyce napped. It took her an hour to find him sitting on a curb three blocks away. "He might have been killed," she told me over and over. "He might have been run over by a truck and killed!" | |
34 | I stroked her tangled hair, its shine lost long ago in her preoccupation with Eddie, and Joyce gradually relaxed. | |
35 | "Darling, you must get some rest," I said. "It won't be for long, but let's place Eddie in a special school where they build an environment designed to . . ." | |
36 | Joyce sprang from my arms. "No," she cried. "You'll never take Eddie from me!" Then she ran to his room and locked the door from the inside. For hours, only the singsong of a lullaby reached me. I knew she was holding Eddie on her lap, rocking him. | |
37 | Two days later, Joyce contracted pneumonia and Dr. Green rushed her to the hospital. "I'm going to keep her there for a two months' convalescence," he said to me. "You get Eddie in one of those schools I told you about." | |
38 | That was how Eddie was placed in the school of exceptional children. Like Eddie, each lived in a special world of his own. But instead of attempting to train them for the world we know and adapt to, the teachers had created an environment in which the exceptional child was the norm. | |
39 | Meantime, rest and care worked their curative powers with Joyce. After two months, we brought her home. During her absence, I had engaged Mrs. Jordan, a practical nurse, to relieve Joyce of housework and keep her company during the readjustment period. And those first weeks after my wife came home were in many ways like the first months of our marriage. | |
40 | We went to church, to the theater, to parties. Once a week we visited Eddie at the school. I believed Joyce had now accepted Eddie's idiocy. Only one worry remained for me. | |
41 | "I want you two to have more children," Dr. Green had said. "The only way Joyce can be happy is by lavishing her love on other children." | |
42 | When I considered my own desires for a large family, I knew nothing could please me more. Joyce once had shared these desires. But with Eddie's birth she changed. At first she argued she was too busy with Eddie to have more children. Later I sensed in her frigidity the determination never to have another child. | |
43 | In all outward respects, Joyce seemed fully recovered, although the fixation against more children remained. Then Eddie's fifth birthday came. Joyce asked me to bring him home for the week end. "I'll take him back Monday morning," she said. | |
44 | It seemed a harmless request, and I agreed. But when I came in from work Monday evening, I found the house dark. Mrs. Jordan was not there. I went upstairs. The door to Eddie's room was locked. | |
45 | "Joyce, are you in there?" I called. No answer. | |
46 | I heard footsteps, then the click of the lock. In the dim light I saw her standing in the doorway, holding him in her arms. | |
47 | "Eddie isn't going back," she said quietly. "He wants to stay with me. He's much happier here -- aren't you, Eddie?" | |
48 | "Where is Mrs. Jordan?" | |
49 | "We don't need her now. I told her she could go." | |
50 | When I phoned Dr. Green, he advised me to leave her alone. "Joyce's mind may be permanently injured if you take Eddie from her now," he said. | |
51 | For the next few weeks, Joyce acted as if the period of her illness and recovery were blanked from memory. Once again, I saw her fade. Her hair hung straight and unkempt. Sometimes I heard her coughing long after she went to bed in Eddie's nursery, where she had set up a cot beside his crib. | |
52 | I brooded over my frustrated ambitions for a family. I loved Joyce with all my heart, but Joyce was no longer the same woman I had married. In this state of mind I reached a conclusion. If there was no hope for Joyce, then I must attempt to build a new life for myself without her. I didn't know it then, but Stage II was drawing to a close. | |
53 | When I came home, Dr. Green and Joyce were sitting in the living room. "Eddie's been sick, darling," she said. "And the doctor and I have been having a long talk." | |
54 | A calmness had replaced the restive quality in her eyes. "Dr. Green says Eddie is sick because he misses his playmates at the school," she went on. "He says Eddie will be happier with us if we give him some brothers and sisters to play with." | |
55 | She was telling me we must have other children. Partly to make sure I wasn't dreaming and partly to hide the tears in my eyes, I pulled Joyce to me and kissed her. | |
56 | "Are you sure you want to keep Eddie?" Dr. Green asked Joyce. | |
57 | "Oh, yes," she said. "I know you're right. I've known all along there was no hope, but I love him." | |
58 | "Then you cannot smother him with affection. You must not permit his life to destroy your own." | |
59 | That night we set up a schedule. As far as I know, Joyce has never violated it. She sees Eddie twice a day: 30 minutes in the morning, an hour in the afternoon. One night a week we care for him while Mrs. Coates, our practical nurse, goes out. | |
60 | We have been in Stage III for four years. We have created a special environment in Eddie's room. We know, however, that it cannot last forever. Some day, we'll put him in an institution -- and Stage III will end. Joyce is willing. But for the time being, we think his presence in our home is healthy. | |
61 | Recently we celebrated his ninth birthday. Nancy, now three, invited half a dozen neighborhood playmates. While the other kids played on the nursery floor, Eddie sat in his chair by the window, the wind tousling his hair. | |
62 | We've told Nancy about Eddie. She loves him. He loves her. When the birthday cake was cut, she stood beside Eddie's chair and fed him the first piece. | |
63 | Our Nancy is learning a lesson that will be with her all her life. In a home that is sunny and happy, she comes in daily contact with the underprivileged -- her brother. She has developed a tenderness and sympathy toward him that must carry over to later life. | |
64 | Living death? Don't speak to us of living death. We have a happy home and children of whom we are proud. Eddie has his niche as much as any of us. Lacking in brains, doomed by an accident, his has perhaps been the greatest contribution of all: for every day he teaches us anew the wisdom of courage, patience and sympathy. |