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The Will to Live
Ernest H. Rosenbaum, MD and Isadora R. Rosenbaum, MA

Look to this day for it is life,
For yesterday is already a dream,
And tomorrow is only a vision,
But today, well lived, makes every yesterday
A dream of happiness and every tomorrow, a vision of hope. -- Kalidasa

And so it is with this elusive feeling we call the will to live. The will to live comes from hope but is nevertheless rooted in stark reality. The people in this book - - and thousands like them -- know that it is a difficult balancing act, to maintain a strong will to live in the face of debilitating treatment, excruciating pain, and sometimes persistent bad news.

But they chose to consider this constant reminder of our fragile mortality as a wake-up call that led them to reassess their values and to either confirm or change their way of life. Each of them nurtured old relationships and developed new ones; each lived life more fully while learning to live with illness. Each of them found hope.

The same opportunity to acknowledge our mortality and examine our priorities is available to all of us, the temporarily healthy as well as the ill, as David Spiegel mentions in his introduction to this book. What is important to us? How do we want to live the rest of our lives? If we discover behaviors or habits we wish to change, we are free to begin experimenting in that direction. We too may start to take risks, open our minds to other modes of thought, take a trip or a class, and make new friends. Anyone who goes through this process will undergo permanent, positive change and will have begun to nurture the will to live.

Although we cannot precisely define the will to live, we have identified the following attitudes and behaviors common to those in this book as well as to other patients observed over many years of practice:
1.They live in the present. They know the past cannot be changed, but they also know they have the capacity to influence the quality of today and tomorrow.
2. They accept their new problems and attempt to solve them through introspection, understanding, and sharing.
3. They set reasonable, achievable goals.
4. They consciously try to downplay negative emotions and to focus on feelings of love and hope.
5. They surround themselves with supportive friends and family members.
6. They actively search for ways to help others.

We, as caregivers, consider the first five attitudes and behaviors to be essential. Those who practice them are ensuring that their needs are met. The sixth represents a principle we have long recognized as vital to a fulfilling life. Try every day to help someone else! When our own needs are met, we are emotionally free to give to others. For Ellie Bine, it was giving an unhappy child a hug; for Edward Madison, it was sharing the joys and sorrows of a friend. As a result of their suffering, these people discovered they had something special to give.

Of all the ingredients of the will to live, none is more essential than hope. But hope is relative: One person may hope for the fullest possible remaining life; another may hope to live until a special holiday or a family reunion; still another may simply hope to avoid suffering.

Doctors can contribute substantially to a patient's feelings of hope -- not false hope, but realistic hope. When a patient asks, How long have I got? some physicians will respond: six months, or a year, or two years, and quote clinical statistics for that person's disease. What these physicians often forget to mention is that statistics are averages, compiled from survival data on a great number of individuals, some of whom obviously lived much longer than the average, and others a much shorter time. As many of the individuals in this book demonstrate, it is impossible to predict any person's longevity. Even after a patient has begun a particular therapy, it takes time to determine whether it will have the desired effect. But even if it fails, another one may be highly successful.

Hope may indeed be one of the elements that enables a person to live longer than medically anticipated. However, the opposite is also true. An extreme lack of hope can have the same effect as the phenomenon called self-willed death or bone-pointing,1 observed among Australian Aborigines and in other South Pacific cultures. In such cases. a tribal witch doctor casts a spell similar to that observed in Voodoo, causing the victim , to suffer paralyzing fear, withdraw from society and die within a short time. Of course, the witch doctor can only be effective if the potential victim believes in the power of the curse. In the same way, a person with an illness can be adverse1y affected when doctors and nurses project a sense of hopelessness, or when family and friends are unable to hide their fears. (Paradoxically, such people are often projecting concern over their own mortality, not that of the patient !)

Clearly, hope is a life force in and of itself. A little hope -- a remote chance for survival or a small improvement in one's condition -- can give the strength to carry on.

There is no medicine like hope
No incentive so great
And no tonic so powerful
As the expectation
Of something better tomorrow.
-- Orison Swett Marden

In conclusion, the will to live both defies definition and has many definitions, as demonstrated by our contributors. We can only describe common behaviors and attitudes among those who have it, and acknowledge its wondrous power. People who exhibit a strong will to live appear to have strong bonds or friendship and love. They also show a determination to meet misfortune head on, to accept what has happened, and find a way to cope. Part of this process involves finding out everything they can about their condition and treatment alternatives and discussing these facts with their doctors and those close to them. They certainly reexamine their priorities. Most important, perhaps as a result of the foregoing, people with the will to live are determined to live life to the fullest, be this for one week, or a natural life span.

Finally, most of us do not discover the great, untapped force of the will to live until we are faced with an illness or other crisis. Yet we all have the ability to unearth its potential. We hope that the stories of the courageous people in this book will inspire you to delve into your innermost being and live every moment fully from your mind and heart.

Rekindle your Inner Fire,
Your will to live.
You still have time to live.
How you live is your decision.

G.W. Milton, "Self-Willed Death or the Bone-Pointing Syndrome," Lancet, June 23, 1973, 1435-37.

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First appeared May 8, 2008; updated June 12, 2009