The Bukowski Agency - What Dying People Want - Excerpt
What Dying People Want
Practical Wisdom for the End of Life

by Dr. David Kuhl


THE MAHABHARATA, the great Indian epic, asks this question, What is the most wondrous thing in the world? The response is that the most wondrous thing in the whole world is that people who are growing old and dying can be seen all around us and yet we think it will not happen to us. Death only happens to others, those who are older than we are, those in our parents' generations, those who are sick, our neighbors but not us. We have time to spend, time to spare, time to procrastinate, time to waste.

Sixty seconds in a minute, sixty minutes in an hour, twenty-four hours in a day, seven days in a week — this is chronus, the chronological marking of time. It is the same for each of us, day after day, season upon season, year after year, generation after generation. Chronus is linear time. There is also personal time, psychological time, the experience of life — this is kairos, time noted for its dimension of depth. When asked to define time, Augustine responded with “If no one asks me, I know; if I want to explain it to a questioner, I do not know.”

The moment someone is told that the illness they are experiencing will likely result in death, time changes. Paradoxically, for a period, time stops. Some may hear the message when they are feeling well, unaware of the disease process going on within them. Others may actually welcome the information in some strange way because it gives legitimacy to their experience of the previous days, weeks, or months. It helps to make sense of the fatigue, the pain, and the other symptoms that initially infringe, then intrude and eventually seem to invade their lives. Some people deny those symptoms initially; others deny them indefinitely. Some people recognize that the symptoms mark the beginning of the end and that their time is limited, that they are running out of time. You may feel that way, especially if you have already been told that you have a terminal illness, that you only have a certain amount of time remaining.

As much as the diagnosis of a terminal illness marks the end, it also serves as a beginning-an opportunity to ask what the time remaining in your life means to you. How important is the present, how important is now? What are you able to do and say in the time and with the energy that remains in your lifetime?

You have been experiencing pain in one area of your body and made a recent visit to the doctor, who ran some tests. You are scheduled to see her today to discuss the results of those tests. If you have recently been given the diagnosis of a terminal illness you may choose to skip this story or to read it in comparison and contrast to your own experience.

You wake up this morning and go about your usual morning routine: you go down to the kitchen and make coffee, then stand at the window, looking out at the morning sunrise. You remember the saying “Red sky in the morning, sailors take warning” – something your grandfather used to say to you when you spent your summer holidays on the east coast. Is it a memory or a premonition?

You go upstairs to take a shower. The water is particularly refreshing, the scents of the shampoo and soap unusually intense. The towel feels soft today, even over the painful area – the reason you went to see your doctor a week ago. You hope you didn't wait too long to make that appointment. Even after you phoned, you had to wait six days before you got in to see the doctor. She would likely have seen you sooner if you had expressed concern, but you didn't want to make a big deal of it. And she’s busy, her time is important. You wrap the towel around yourself and begin combing your hair. You avoid looking in the mirror for fear of the message you might see. You have the same apprehension about stepping onto the bathroom scale. You substitute the towel for a bathrobe.

Walking back to the kitchen, you notice that the pain seems to be less severe than it was a week ago. Perhaps it was just your imagination. Perhaps you could have avoided the visit to the doctor. The smell of coffee serves as an invitation to read the paper. Usually this is your favorite time of day – really, your only time to be alone in the house. But today it is strangely quiet and you are too alone.


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