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Hope and serious illness

In the context of serious illness, one's greatest fear is that the condition will be fatal. Feelings of hopelessness are common-and a life without hope is grim indeed. The challenge of terminal illness is to learn to live with dying, to find purpose and meaning even in the face of a limited future. Without purpose, you risk the death of emotions while you are still alive. Even if a condition is incurable, it is possible to have hope. It's simply that your definition of hope must change.


With terminal illness, a person's focus shifts from long-term goals to the here and now. You may have noticed how the characteristics of hope have been changing. Before the diagnosis, you might have hoped you had a simple problem that might even go away. After the diagnosis you might have hoped for a cure. As time progresses, and if a cure appears unlikely, the nature of your hopes will continue to change. You might instead hope to survive to see a grandchild born, attend a wedding, or be visited by a sibling. You may look forward to a favorite food or hope for a day with energy or a day without pain.


Along with this shift in the quality of hope, many people with terminal illness describe a renewed sense of appreciation of life and its simple pleasures. As such, you may find joy in a sunset and hope for a resplendent display at day's end. You may hope for the birds to come play in the bird bath or for the chance to listen to a favorite, soothing piece of music. As you learn to live with dying, you are given the opportunity to become more fully alive in the present moment. You may come to measure your days in terms of the quality of life rather than its quantity.


True, as the disease progresses, you may not have much stamina and may not be able to fulfill the roles you have handled in the past. However, there is still much to live for. Even the dying have tasks to complete. Borrowing from the work of Ira Byock, author of "Dying Well," those tasks can be described as follows:

  • Completing one's worldly affairs. This might include arranging your finances, writing an advance directive, and making closure with the circle of people and institutions outside your ring of intimate friends and relations.
  • Coming to terms with the meaning of one's life. You may wish to write a review of your life or dictate it to a friend or family member. This is an opportunity to acknowledge and celebrate your accomplishments.
  • Forgiving oneself. In the course of a lifetime, all of us will have made mistakes. During your life review, you may identify things you can yet do to make amends and allow yourself the grace of forgiveness for what you cannot change about the past.
  • Resolving family relationships. In making closure in your intimate circle, you may need to ask for forgiveness from some or extend forgiveness to others. When faced with the possibility of never seeing each other again, we often recognize that the relationship is more important than any grudges that have developed over the years.
  • Accepting the truth of our interdependence. Self sufficient as we like to be, the fact is we all need each other. None of us is an island. In the course of living, most likely we have helped others. In the course of life's end, we most likely will need help ourselves. An important lesson in the final weeks and days is to learn to be dependent and accept help, to draw your dignity from areas other than your ability to do everything on your own.
  • Approaching transcendence. As people prepare to die, they often find solace in spirituality and the concept of a Being or Entity larger than themselves. Many come to an understanding of the fundamental unity of all life as well as a gratifying feeling that they will be merging with this larger Essence.

Although not everyone will go through these steps of letting go, these individual actions can remind us that there is more to dying than just the passing of the physical body. People given the honor of caring for a terminally ill person often find that witnessing this letting-go process is illuminating for their own personal lives. It brings up important questions about living; for instance, "Why wait until I am dying to extend forgiveness?" and "Why put off until tomorrow those things that truly have meaning to me, for I could die at any moment?" Coping with a terminal illness calls all involved to reexamine their priorities. Rather than resign to a hopeless no-man's land of despair, patients and family caregivers often discover that the last few months can be filled with deep love, growth, and grace.


 

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"I think the shape of hope changes. When you are young and healthy, you think it means a long bright future. When you are faced with an illness like this, you realize the things you hope for are more about today: Will I get to see the birds building their nest? Will I have a pain-free day? Will I get to see someone I love?"