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Enduring and Changing |
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 Overview
of the changes that are happening
From the time that you learn that you have an illness that is expected
to take your life some day, the rhythm of your life changes. When
you face a serious illness, you also face the challenges and worries
that go along with it. You, and those who care for you, may wonder
how you will cope with your life as it changes in so many ways.
One place to start, and, from there, to cope, is to look at your particular
situation: What is the nature of the disease? How old are you, and
what are your relationships with others? How have you dealt with illness
in the past? What do you know of dying? Have you cared for someone
else who was sick, or lost someone you loved? Your experiences are
likely to shape your experience at the end of life.
Knowing that your life is threatened raises lots of concerns and questions
about the future. You are not alone in desperately wanting answers
to questions such as:
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How long do I have? |
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How sick will I get? |
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Will I be in pain? |
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What will happen to my children, my spouse, my projects? |
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How long can I keep on working? |
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How will I pay for everything? |
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Who will care for me? |
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Can I stay in my own home? |
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Will I be a burden to my family and loved ones? |
You may feel very troubled, worried, and afraid. Worse, you may not
know how to express your concerns, what to do, or what to say. The
uncertainty and the distress can be just as troubling as other symptoms
of your illness. In fact, your emotional state can profoundly affect
how you feel physically.
Consider these patients: Norma had lived with congestive heart failure
for several years, and although she was weary of her illness, her
primary concern was for her elderly husband, who suffered from advanced
Parkinson's disease. "I worry about what will happen to him when
I'm gone. The children are close by, but they have their own lives,
so I have to hang on as long as possible."
Janie, a 28-year old suffering from advanced breast cancer, worried
constantly about her 6-year-old daughter. "This has all happened
so fast, and I don't think Lisa understands what's going on. She gets
so upset when I can't do things with her. There doesn't seem to be
anything that I can do."
A young corporate executive, Tom struggled with his declining physical
ability, the result of an aggressive lung tumor. "I once managed
hundreds of people and everything ran efficiently. I was never sick
and now I need help with everything. This can't be happening to me."
Much of the suffering that comes with life-threatening illness arises
from overwhelming feelings of loss. These feelings can be complicated
by the ambivalence that so commonly directs the ebb and flow of emotions
in the course of a long illness. Norma longs to be free of her restricted
life but is afraid for her spouse. Janie admits that sometimes death
seems preferable to the terrible pain she has at times, and yet she
cannot bear to think of her child as motherless. Tom can't imagine
a time of "not being." Your life may be a series of ups
and downs. When you feel well, you may feel that a mistake has been
made and that life will continue uninterrupted. Then, as if on cue,
some change occurs, reminding you of your illness.
As dismal as your situation may seem at times, there is reason to
be hopeful. Knowing that changes will occur and that anxiety and ambivalence
will sometimes disrupt your life can also free you to make choices
about how you will respond. You may not be able to change the outcome
of your illness, but you can decide how you want to react to the emotional
and spiritual pain, the anger, the frustration, the losses —
the emotional roller-coaster ride you may sometimes experience. |
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Adapted from The
Handbook for Mortals: Guidance for People Facing Serious Illness,
by Joanne Lynn and Joan Harrold, copyright by Joanne Lynn, used by
permission of Oxford University Press.
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