Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us will be obliged, at least for a spell, to identify ourselves as citizens of that other place. (Susan Sontag, 1977)
People sometimes behave as if they take their health for granted. However, most regard good health highly. Ralph Waldo Emerson said that, "Health is the first wealth." Good health provides us with a fundamental opportunity to live our life the way we choose. Impaired health may at times frustrate our ambitions, despite wealth and other personal resources.
Although most of us would agree that one's state of health is important, exactly what we mean by the word health is not always clear. Does it refer only to the absence of disease? Or does good health require a total sense of well-being? Is a chronically tired person who does not have a serious disease, healthy or unhealthy? What about a man, who feels well, but has high blood pressure? Is he healthy or unhealthy?
Consider the following story. You slip on some stairs and break your wrist. Over the next few days you find the cast uncomfortable. You become frustrated by the inconvenience, irritated by this impairment in your usual state of health. After a couple of weeks, you attend your doctor's office, hoping that she will say it is time to remove the cast. In the waiting room, you notice a young woman with hands that are deformed by arthritis. Her hands look as though they are painful. But she is chatting amicably with the receptionist. At the time of your appointment, the doctor tells you that the cast must stay on your arm for at least another two weeks. Rather than the increased irritation that you had expected to experience, you find that it doesn't seem like a big deal. You leave the office with the hope that the doctor can help this woman with her condition. Seeing her has helped you to view your own health from a different perspective. Nothing has changed with your wrist, but you feel lucky to be so healthy.
Clearly, the word health refers to a complicated idea that is difficult to pin down. In this book, we define health as having three aspects. These are physical, emotional and spiritual. These three aspects overlap and affect each other. For example, we all know that improvement or deterioration in physical health can alter our emotional well-being accordingly. But it is equally important to recognize that the physical, emotional, and spiritual do not overlap entirely. As in the example of the person with a broken wrist, one's state of mind may shift without any tangible change in physical health. Later in chapter nine, we discuss how physical health problems may result in either challenges to or enhancement of spiritual awareness.
The assumptions you hold about the meaning of health can exert huge impact on how you react to sickness. By viewing health too narrowly, you can easily convince yourself that you are much more helpless than is truly the case. Imagine a man who assumed that his well-being was dependent entirely upon his physical condition. For him, a sense of well-being could occur only when physical disease is absent. Should physical illness arise, only hope for a complete cure would restore his sense of well-being. A delay in treatment, or anything less than a cure would leave a residue of despair and helplessness. By ignoring other aspects of health and well-being, an uneasy sense of dependence upon doctors and fate is all that remains. Such a person would tend to fear sickness and try to pretend that it could never happen to him.
Another very different assumption about health can also lead to great distress. We encourage a broad rather than narrow understanding of health and well-being. But what if somebody takes this idea to its own extreme? What about the person who equates well-being only with an ideal state of total health? Only when the physical, emotional and spiritual aspects of health were all in perfect order would a sense of well-being occur. Unfortunately, real life has an irritating tendency to not cooperate with our wish for absolute tranquility. It always seems that something, somewhere, is not exactly as we might prefer. As a result, this ideal outlook on health and well-being is far too fragile. If anything were out of place, you would feel unwell.
Physical, emotional and spiritual aspects of life interact to decide your health. People can show remarkable resilience during times of serious illness. One reason for this is our ability to adjust our selves and our lives to work around physical limitations. The suggestion that uncontrollable physical changes need not dominate our lives is a message of hope and optimism. Other aspects of one's health and life are there to draw upon at times of physical challenge.
Serious illness will at least for a time, intrude upon and disrupt your life. Indeed, a most disturbing aspect of illness is its tendency to disrupt your preferred interests and lifestyle. In this section, we offer some basic ideas about how you structure your life. This will help you to see how illness can throw a lifestyle into disarray. Our hope is that this instruction will lay a foundation that will enhance your ability to respond confidently to the intrusion of illness into your life.
You divide your days between four types of activity. These are work, leisure, looking after yourself, and relations with others. Each of us strives for our preferred balance among these pursuits. Of course this is a dynamic balance, meaning that it constantly shifts according to one's needs, interests and resources. When you have control over the time and energy that you divide between these areas of life, you are likely to be more at ease with your lifestyle. To the extent that you are not in control of this balance, you risk frustration and resentment. To again find satisfaction, you must regain some control, adjust yourself to new circumstances, or both. Your interest in transplantation is an effort to regain some control over your health. Meanwhile, you may find yourself challenged to accept circum-stances that are not your preference. This is always difficult.
Illness confronts your ability to maintain a preferred balance between different life activities. It may force you to spend more time than previously in looking after your health. End-stage renal disease requires several hours of dialysis treatment each week. A doctor or nurse may recommend an exercise program to help with a heart, lung or other condition. Illness may also demand that you take some time off work or make it difficult to pursue certain leisure activities. People who have spent a great deal of their time engaged in sports and other physically demanding activities may have to curtail these interests for a time. During your involvement with a transplant program, there can be a great deal for you to do and learn. These demands may have to take priority over other interests or goals until after you recover from surgery.
When illness disrupts your preferred lifestyle, a difficult dilemma immediately arises. Stated simply, do you fight or do you adjust? Do you stand firm and refuse to change? Or do you alter your lifestyle to meet the new demands or limitations of illness? Does this mean that you are 'giving in' to the illness? That it is getting the better of you? Or is it sensible to adjust, a sign that you are being reasonable?
We describe this decision as a dilemma because it can seem at times like there is no good answer. For example, is it better to work part time and get more rest when ill? It may be, unless you are a person likely to become bored and isolated when not working full time. Or it might be best for your health, but what if you would then be unable to keep up your mortgage payments? These are difficult decisions.
On the other hand, is it better to keep working full time? Again, this might be the correct answer for the person who enjoys and is not too fatigued by their work. But what about the person who holds a physically demanding job that they do not enjoy? Will they have enough energy left over at the end of the day to apply them fully to a recommended treatment program?
Without any doubt, this question of 'stand firm' or 'adjust' can be a difficult dilemma. the correct decision depends on a huge variety of considerations, both to do with yourself and medical circumstances. Much of what we discuss in Surviving Transplantation has the goal of helping you to face this type of decision with a more informed confidence.
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In his 1990 book All I Really Need to Know I Learned in Kindergarten, Robert Fulghum stresses the importance of balance in daily life. He writes, "Live a balanced life - learn some and think some and draw and paint and sing and dance and play and work everyday some." Of course, none of us will (or will want to) meet this ideal on a daily basis. But the message is clear. Personal well-being is in part dependent upon our ability to balance our time and energies between a variety of pursuits. It is similar to what nutrition experts teach us. Eat a portion from each of the four food groups (meat, vegetable, dairy, and grain) each day.
Illness and the treatment it requires can force shifts in the balance between the activities of your daily life. You may have been more or less satisfied with your lifestyle before you became ill. But regardless, the onset or worsening of illness will throw you even more off balance. You may have to spend more time dealing with your health care needs. Or you may be off work and find that you suddenly have too much time on your hands. If your leisure interests require physical exertion, you may temporarily lose your preferred means of play and relaxation. You may not have the time or energy to go golfing with your friends. But at the same time, you may find that you have to rely on friends or family for things that you have previously done for yourself. There are countless more examples of how illness can disrupt your preferred balance of lifestyle activities. You are likely aware of other examples from your own life.
Our goal is not to simply explain how illness can disrupt your life. Most readers already know firsthand, of the distress that serious illness can cause. But not everybody has the time to stop and think about how the distress arises. How is it that illness leaves you feeling thrown off balance and out of control? With this simple framework, we hope to lay a foundation of understanding that will encourage helpful problem solving. Later chapters build on this foundation and offer ideas for reclaiming your sense of control and well-being.
You had a lifestyle before illness or transplant. Your life has or will be, at least temporarily disrupted by health circumstances. To regain your equilibrium will inevitably require some combination of problem solving, working with others, and adjustment on your own part.
Lifestyle changes inevitably occur with serious illness and transplant. However, it is a natural tendency for most of us to resist change. This is particularly likely when changes are imposed on us unwillingly. When our health deteriorates, the last thing that most of us want to do is to 'give in' and adjust something about our lifestyle or ourselves. Even if we recognize that it is necessary, it is not easy to know how. At first, it may seem easier to do nothing than to face making all the necessary changes. Taking the first step is often the most difficult.
There are times when it is best to remember that you do not always have immediate control over all aspects of an illness or its treatment. But you can always assert some choice about how to respond. By setting priorities and making choices sooner instead of waiting for the last possible moment, you are more likely to adjust things to your liking. You are also more likely to exert your preferences and to retain a sense of control. An ancient Chinese passage from the Tao Te Ching suggests the benefits of acting early by telling us to plan for the difficult while it is easy.
When time or energy are scarce, you may have to set priorities for your activities. But this is not something that most of us do very easily, or very well. This is especially true if it means saying no to activities or people we enjoy. Many of us tend to take on more than we can handle comfortably at once.
