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Live Life to the Fullest
In the middle of the night of March 2, 1968, a friend of our nineteen-year-old son Sam phoned to say that Sam had been injured in a skiing accident. He told us Sam's back was broken and that the doctors did not yet know how extensive the damage would be.
A few hours later my husband and I arrived at the medical center and found Sam in traction. The doctors told us that he would be paralyzed -- a quadriplegic -- for the rest of his life. I was absolutely crushed. The last time I had seen Sam he had been vibrant, active, and full of life.
My husband told me, "Don't fall apart. Sam has enough pain of his own without seeing more on your face."
All kinds of questions went through my mind. How could this happen to a boy who loves life so much? Why did it happen? What can we do for him? Will he regain the use of any of his limbs? Will he be able to sit in a wheelchair? Will he be functional? Can he be a total human being even though he won't be able to walk? The answers would only come slowly, with time, and with hard work on Sam's part.
Sam told us that he wanted to go back to school and be able to drive a car again. He didn't want his hand braces to cause his fingers to be permanently limp. He wanted to be able to eat by himself and didn't want us to have to dress and bathe him. He basically wanted to be independent.
He spent a year in the hospital. His room was always full of his friends, and he also made friends with the orderlies, nurses, and physical therapists. He read and listened to music. He even set up a photography unit in his bathroom where his friends would develop the photographs that he took of them. Centerfolds from Playboy were plastered on the ceiling, and posters adorned every wall. A marijuana plant grew in the window. His stereo could be heard at the elevator. Everyone who came to see Sam had a positive attitude.
During his year in the hospital, Sam learned how to use a motorized wheelchair and how to dress himself. It took him quite a few minutes to put on his pants, but he could do it. He could also put on his shirt and button it, comb his hair, and feed himself. His attitude was that there was no hurdle that he couldn't overcome. Following his stay in the hospital, Sam spent six months in a special training center in Southern California. He was exposed to others with similar problems and was taught to drive again -- in a van with a ramp in the back, for his wheelchair. Once he was inside the van, he could transfer from his wheelchair to a swivel bucket seat at the wheel where he could operate all the driving controls.
Sam's Occupational Therapist
I worked with Sam very closely. After he realized that he would never walk again and never again have the full use of his hands, he talked with me about death and about living. I could never be anything but honest with him.
I'll never forget the day he showed me some photographs of himself that were taken before his accident. In the photographs he was gorgeous, full of life and fun, standing beside the sports car that he used to race. An overwhelming feeling of sadness came over me. I was overwhelmed by the fact that he was never going to be the way he was in those pictures ever again; he was going to be paralyzed for the rest of his life. I had to make an excuse and leave the room.
When I returned about fifteen minutes later, I told him I had gone to see another patient.
"No, you didn't," he said. "You were crying. I can tell. I can look at myself in the photographs and it's okay. Now you're the one who is realizing that I'm crippled." He could look at himself as he had been and it was all right. It was a pivotal point in his life.
Another turning point occurred at the theater during Sam's first outing from the hospital. He wanted to see the play Hair so badly he decided that if the doctor would give him a pass, he would go, and it wouldn't matter in his motorized wheelchair in an aisle seat next to his friends.
It just so happened that in the opening of Hair, all the actors and actresses would move from the back of the theater toward the stage, holding each other's hands and stepping on the arms of the theater seats, right over the audience. Sam looked up to see an actor coming toward him in slow motion. As he got closer, he shouted at Sam, "Get your arm off the chair!"
Sam shouted back, "I'm paralyzed! " The actor said again, "You bastard! Get your arm out of the way!"
Sam shouted once more, "But I'm paralyzed! " Yet somehow he managed to move his arm -- just enough -- a moment before the actor's foot hit the chair's arm with a thud.
After each performance of Hair, the audience would join the actors and actresses on stage. Sam was picked up by some of the actors and carried to the stage to join the others. They gave him drinks, girls sat on his lap, and he got drunk.
The next day he told us that evening was the first time since his accident that he had been looked at as a person and not just as part of a wheelchair. He said the actor who was stepping on the chair arm hadn't cared about him -- what had been important to the actor was the show. At the hospital we were all very protective of Sam, but the actor treated him like a normal person, speaking to Sam the way you'd speak to a normal person. That was the first time someone had treated Sam like that since his accident.
A similar incident occurred when the hospital staff taunted Sam into participating in the annual Wheelchair Olympics that were being held in Palo Alto, California, that year. He was afraid that he couldn't do it and hadn't planned to attend until the staff challenged him.
He did well in the competition, but, more than that, he said it had been a thrill. All of a sudden Sam could swear, get mad, and want to win again. No longer was it, "I'm in a wheelchair." It was, "I'm Sam, and I'm competing against you."
Sam returned to college where he became a business major and took a special course to become a computer programmer. There were times when he could not take a class he wanted because it was on the second or third floor. He felt cheated, so he waged a campaign on behalf of himself and others in wheelchairs to have elevators installed in classroom buildings. Quite a few news stories about his efforts appeared in the campus paper. One of them was accompanied by a photograph of Sam in front of a flight of stairs, as though to say, My wheelchair doesn't have square wheels. Where do I go from here?
He also campaigned for covered parking areas so that quadriplegic and paraplegics could get out of their cars and into buildings without being drenched in the winter rains. He asked faculty members to give up their parking spaces close to the buildings and asked that space be left between cars so that people could transfer from their cars to their wheelchairs with some dignity. Dignity was important to Sam.
But Sam didn't limit his campaigning to paraplegics and quadriplegics. He went on television to emphasize the plight of all the disabled in San Francisco. He made a plea not only for things like ramps at curbstones but also for consideration on the part of bus drivers for the blind, disabled, and aged who can't move fast enough. Sam was instrumental in getting public drinking fountains and telephones lowered to accommodate people in wheelchairs.
When Sam was twenty-three years old, he married Connie, a girl who had been a friend of one of his sisters. Connie had known Sam before and after his accident, so she didn't fall in love with a pitiful young man in a wheelchair. To her, his physical disability didn't matter. She had already fallen in love with him as a person, and she wanted to share all the dreams and aspirations that Sam wanted for himself.
Sam kept his head and accomplished everything he set out to, do with the same zest and enthusiasm he had always had, until the second misfortune occurred. Five years after Sam's marriage, almost nine years after his skiing accident, he was diagnosed with a brain tumor.
The way I found out about my brain tumor is that I kept stuttering and losing my balance. Eventually I found it very difficult to express myself and began to feel like a mental vegetable. The dizzy spells persisted until one day I fell out of my wheelchair. I just didn't know what had come over me and had myself admitted to the hospital. After tests, they discovered I had cancer.
During surgery, the doctors discovered that my tumor was inoperable, but they were able to remove enough of it to relieve the pressure that was causing my speech problems. Over the next several months, however, I lost much of the remaining use of my hands. I could no longer write and had to postpone taking my job as a computer programmer. I underwent radiation therapy, followed by a regimen of chemotherapy.
I went through my greatest depression when I became a quad, but I also got depressed with the cancer. I didn't lose track of my goals, but the cancer really sabotaged my faith in myself. I didn't know if I was going to be able to drive again or use my right arm again. I didn't know what the cancer meant, and I feared the worst. I felt inadequate and was afraid I would never work again.
After just lying around feeling depressed for a while, I realized how lackadaisical and bored I had become. Boredom -- not being able to get out as much as I'd like -- was driving me crazy. But the boredom eventually had a reverse effect, making me want to do something constructive.
I began to practice my handwriting again, this time with both hands. I hope to start working part-time. There's a limit to what I can do physically, since I'm not as functional as I was before the brain tumor, but I recovered enough mobility to set my goals again. And I want a job I can do by myself, not one that my wife has to help me with. It's more rewarding to do something by yourself, and I want to feel like a full and useful person. It's also important to me to be the breadwinner in the family.
I've learned that there's always one more thing you can do, and you can always do it a little better. But, before you can set goals, you have to stop feeling sorry for yourself. Until you do that, you can't reevaluate your life and decide what to go after. Because of my physical disabilities, things are difficult, but I fight harder because I have someone I love, and I've always had this fighting spirit in me. I want to live life to the fullest.
Sam has lived these past ten years with such grace. He has never really become angry or blamed anything or anyone for his problems. He only loses his temper when he attempts to do things he knows he could do but doesn't do them as well as he wants to, because he is a perfectionist.
There is life and there is death. It's what is in between that is important, whether it's a short or long lifetime. If you come into this world and do nothing, you're going to be a nothing. You'll die and no one will know you existed. A lot of people live a long time and might as well not have lived at all. They survive life. Instead, as Sam has taught us, you have to live with great gusto, with everything you've got.
Sam has fully lived his life. He wants his life to be of some value. He knows that he has something to give, and he gives it in the best way that he can. That's why I don't pity him. I'm as grateful as he is that he has lived as long and as well as he has. He has given me more in his 29 years than I could ever give anyone, even if I live to be 150 years old.
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