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A Cup of Breath
I usually hate cliches, but there is one I like: Forget what you did yesterday. Instead, think of what you can do tomorrow. That's what you have to do with an illness like mine -- put yesterday behind you and think about what you can do tomorrow to make yourself or someone else happy.
My disease, which is partially a medical mystery, began when I was thirty-nine years old and my children were six and eleven. The doctors decided I have a type of collagen disease. It isn't lupus and isn't quite scleroderma, although I do have some symptoms of scleroderma. Whatever my disease is, it has caused many medical problems over the years, from fluid retention to calcium deposits in my arms and legs.
With some diseases, such as arthritis, people feel better physically when they get up and do things. I feel worse physically but better mentally when I get up, so I decided years ago that I would rather have a happy head than a happy body.
I've found that you can learn to live with not feeling good, once you get over the impatience involved in learning to deal with a disease or a handicap. It isn't something that comes overnight or even in a week or a month. You just have to keep at it all the time. And, once you've conquered it, it's simply a matter of constantly reminding yourself that you can do it.
In spite of being bedridden, I knew I wanted to raise my own children. Someone else could have done it, but I really wanted to, and I pushed myself because it was important to me. Even so, many times I'd do things not knowing if I was going to make it.
I still push myself to do things even when the doctors tell me to take it easy. Although I may just have been lucky, I think my stubbornness is one of the reasons I've survived.
Another reason is my attitude. Attitude can make a physical illness easier or harder to live with.
It's a terrible thing if the first thought that occurs to you when something threatening happens is, "I'm going to die." I have news for you: it isn't that easy to die. Most people who get sick, get well. Most people who go to hospitals leave again and are perfectly all right. The chance of something fatal happening in surgery is less than your chances of dying when you walk out of the house to the bus stop and go downtown.
One of the most important things we all can do is to decide what dying means to us. All it means to me is that I would have to leave the things and people I love. I've always known that the quality of the years you live is far more important than the quantity.
My attitude comes from my mother, a marvelous woman. She was orphaned at the age of five, and by the age of eleven she was cooking for ranch hands and fighting them off. She never had a single luxury until her later years but, in her view, she had everything. Other people mattered more to her than she did to herself. She loved doing things for her husband, children, and friends. She was a woman who could have been as bitter about life as anyone, but she wasn't -- she loved life, every bit of it. And you can't live with a woman like that and not get an awful lot out of it.
There were three of us, and we were never allowed to feel sorry for ourselves, Our mother told us, "If you lose an arm, a leg, or both legs -- if you can still hear or you can still see or you can still walk -- be grateful and make the best of it. You make your own happiness. Don't sit around waiting for everybody else to make you happy."
Another person I take strength from is a young woman named Barbara who was in nurses' training with me. She married, had two children, and, at the age of twenty-six, became paralyzed from polio. When she asked her doctor how long she would live, he said, "Five years."
She lasted seven years and ran her house from her iron lung. She oversaw the cooking, the dressing of her children, everything. So if I indulge in self-pity, it doesn't last long. I just think of Barbara and the way she handled herself. I can still put my arms around my husband and children. Can you imagine never being able to hug anyone? I may not be able to walk well, but at least I can walk straight. I can drive a car, and I can laugh.
I have a friend whose daughter was blinded by someone putting lye in her eye drops. Thirty-two years old. Blind. Yet she has not let it change her life. She goes rowing twice a week with a companion and has a full-time job with Guide Dogs for the Blind. The only thing she hasn't been able to do is fly an airplane.
In the summertime, I often invite children from the Center for Attitudinal Healing (The Center for Attitudinal Healing in Tiburon, California, is an organization for psychological help and healing.) to swim at my house. The first time they came, I didn't think I could bear to look at ten or fifteen children who had life-threatening diseases. But as I sat in the house, I heard them laughing and splashing in the pool and just having a wonderful time. I went out to watch them play. You would have thought there wasn't a thing in the world wrong with them.
I remember one boy, only nine years old, who had lost both legs and both arms yet always had a playful attitude and always talked about how much he wanted a bicycle. Some students at a college in Florida heard about him and designed a bike with a little seat and a strap that went around his torso so all he had to do to make the bike move was lean forward. The first time he got on and made it go, he was so happy. He just laughed and laughed and had a great time. When I saw him -- with no arms and legs -- having so much fun and enjoying himself so much, it made me wonder again what on earth I've got to complain about.
If somebody said to me, "Tomorrow we are going to cure you, but the price will be that your husband and children will have great unhappiness for the rest of their lives," I'd tell them to go to hell. When my husband and children are happy, I am happy. If I had to stay in bed for the rest of my life to ensure that they would never have an unhappy or unhealthy moment, I'd do it. I'm sorry for people who don't have that kind of love to share with a partner and children. It is mainly because of my husband, Rene, that I have managed to cope with my difficulties and stay happy.
When our children were young, they not only had to cope with my inability to go places with them, but Rene, as a doctor, was often called out on emergencies and was therefore unable to be with them. On several wedding anniversaries and birthdays for myself or the children, Rene ended up at the hospital or visiting a patient at home. The children and I learned early that every day had to be an important day. Every day had to be the equivalent of a birthday or an anniversary. Every day was Mothers' Day, Fathers' Day, and Childrens' Day, even if it was only a part of the day.
We all need to feel useful. How sad that some people feel that to be useful they have to do something spectacular or nearly spectacular. A smile to a tired husband, a reassuring squeeze to an unhappy child, these are little things but so very important.
Since I also need to feel useful, I acted as the message center and key keeper for our neighborhood or as an emergency service for mothers with problems. I couldn't always go to the scene of the problem, but, if I couldn't, I would find someone who could.
I am almost always at home, and, although I enjoy having a beautiful house, what I can see out of my bedroom window is more important to me: the trees. For years people told me to have them pruned, but I wanted them to grow tall so I could see them waving in the wind and hear them batting against the house. mow the branches wander back and forth, flocks of birds come to eat the berries, and the foghorns blow.
Aside from my bedroom, I spend most of my time in the kitchen. I like to cook for people, and the way I handle guests is simply to cook ahead of time and freeze the dishes. For years I had a stool I rolled around on so I could cook sitting down. When it wasn't that bad, I stood up until I couldn't stand anymore. If the stool wasn't nearby, I sat or lay on the floor until I felt better.
I also love going to restaurants, although I am on an extremely low-sodium diet. I've gone into the most elegant restaurants with some salt-free margarine and my own little frying pan in a fancy bag. A doctor's wife once asked me if I wasn't embarrassed to do that, and I said, "No way. I like to eat and I enjoy food. If this is the only way I can do it, why should I be embarrassed?"
A lot of people think that because they're sick, they are different or oddballs. I never felt that way.
I have worried about how Rene felt because I know his concern is very deep, and he doesn't always tell me what he is thinking. One day when I was feeling lousy and couldn't stand up, he phoned and said, "I wish there was something I could do for you." The rest of the afternoon was shot for me. All I could think of was that he was hurt because of me, and that upset me.
It's good when other people care about you, but there's such a thing as caring too much. For me, it has been very necessary to be treated like a normal person.
Of course, the other side of that is that I have had to let people know how I want to be treated. People react to you according to how you conduct yourself. I remember once climbing a flight of stairs at a friend's house and having difficulty breathing. My friend said, "Is there anything I can do for you?"
I replied, "No!"
And then, in a very light-hearted tone, she asked, "How about a cup of breath."
People have been exceptionally good to me in my life, yet they haven't smothered me. If they try to, it's good-bye. I need others to accept the fact that I am what I am and am going to do things my way. I've been very selective about my friends because I can't be bothered thinking about what I'm going to say or how I'm going to say it.
I've always been outspoken with my children as well. They don't have to guess what I'm thinking, although I don't tell them every time I'm not feeling well. That's something I need to cope with, not them.
I feel very strongly that people should rely on other people. Support from an empathetic doctor is invaluable, But that alone isn't enough. If the doctor spent twenty-four hours a day with his patients, there is no way he could keep them going. Nor could a husband or a wife. For an ill person, it is dreadfully important to have someone to help you, someone to lean on, just as healthy people do. It's like swimming: sometimes you need to hang on to somebody to get your head above the water and occasionally stretch out your arm and take a rest. But then you have to start swimming by yourself again.
I've been thinking about what motivates people to go on and continue to struggle when they are on dialysis or in a position such as mine. There are lots of tangible reasons -- family, the beauty of nature, a nice meal -- but there is an intangible one that's hard to define.
It's an intensity that has sustained me and still sustains me even after more than thirty years. I'm in my seventies now. I've lost a finger and a leg and now they tell me I've got lung cancer. But that intensity is still there. I don't know where it came from. You can't tell somebody how to have it any more than you can tell somebody how to love.
Of course, people also need a tangible reason to continue to struggle. And if they don't have one, they had better find one, even if it's the refusal to be victimized by their misfortune. My main motivation was my husband and children, But I probably would have coped anyway because I don't like being unhappy, and I'm basically strong. I like a challenge. I think anyone who sets their mind to it can do anything if they try hard enough.
I have no fear of dying. There isn't anybody who can tell you what comes after death. But it doesn't really make much of a difference. We live our lives every day not knowing what tomorrow holds. I take what comes as it comes. I tell people, "If it would help to worry and worry and worry, then stay awake twenty-four hours a day and worry. But it doesn't help." It must be a terrible thing to be afraid all the time. My philosophy is to quit worrying about things you can't change.
One time I woke up in the middle of the night and said to my husband, "Have you ever thought about dying?"
He said, "Yeah."
"What did you decide?" I asked.
' "I decided there was nothing to decide, so I didn't bother thinking about it anymore."
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