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July 1, 2019

On Nearing Death: What we should know when “Our Time Comes.”


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“If I ever (insert age-related eccentricity here) leave me on an iceberg!”

People say things like that all the time.

The idea that our loss of independence and dignity would make life no longer worth living is pretty nearly universal. I think most of us draw this kind of line in the sand of time.

What has to happen to us to make life not worth living? The loss of the roles that formed our self-image and told us where we fit in? Loneliness as family and friends precede us in death? Physical suffering and debility? Having to rely on others for help in the activities of daily living?

As a person with a fatal neurodegenerative illness, I am already beginning to learn that I can accept a lot more help than I thought I could, that I can live a sufficiently full and satisfying life without being able to do everything for myself, and that dignity is a moving target.

It is, of course, not for me or anyone else to decide what other people ought to find bearable. Nevertheless, I suspect that most people’s leave-me-on-an-iceberg scenarios, were they actually to materialize, would end up like this fable of Aesop (Eliot/Jacobs version):

An Old Man, bent double with age and toil, was gathering sticks in a forest. At last he grew so tired and hopeless that he threw down the bundle of sticks, and cried out: “I cannot bear this life any longer. Death come and take me!”

As he spoke, Death appeared and said to him: “What do you want Old Man? I heard you call me.”

“Please, sir,” replied the Old Man, “would you kindly help me lift this load of sticks on to my shoulder?”

Of course, I’m not saying it would always play out that way; sometimes, it’s easy to understand why someone might truly be ready to go.

During my hospice chaplaincy training, I met an elderly, seriously ill woman with two adult sons. As she lay in the bed, one of her sons sat silently in the shadows in the far corner of the room, while the other strode back and forth incessantly, brimming with restless energy and spitting defiance at his mother’s illness.

“We’re gonna beat this thing,” he promised over and over. “We’re going to get you out of here.”

The patient told me quietly of all the people in her life who were gone. Her husband was gone, her brothers and sisters, most of her friends—everyone was gone. And she, herself, was sick and depleted.

Her eyes filled with tears as she said softly, “I just want it to end.” And I get that.

The writer of the biblical Book of Ecclesiastes warned his readers to be prepared for the time when “the days of trouble come, and the years approach when you will say, ‘I find no pleasure in them.’”

When those days arrive, further struggle may seem pointless and for no real purpose. “Vanity,” Ecclesiastes called it. Maybe that’s when the iceberg starts to look genuinely appealing. No one wants to just hang around until they start putting the chairs up on the tables.

Sometimes other people can look iceberg-ready to the outside observer. I’ll tell you something appalling about myself. (This is all the more disturbing because I have been a hospice chaplain.) Whenever I have seen old people using a walker, they have struck me as warehoused people, simply waiting to be packed up and shipped out. (Strangely, I have had no similar feelings about bedridden people—possibly because I have had so many conversations with them. I have had far fewer conversations with walker-bound people.)

I had no idea I had these horrible thoughts until I noticed my own feelings whenever I found myself out in public using a walker. My self-consciousness was almost as crippling as my disease. This may explain why I became so furious when motorists honked their horns at me as I hobbled along; not only did I find their behavior repellent, but I may also have recognized their impatience in myself.

And it’s not just the walker; I am surrounded by physical reminders of my declining health. All the rugs in the house have been rolled up and taken away so I don’t trip on them. There are brand-new railings on the stairs. We even gave away the more boisterous of our two dogs. I live in a tippy, infirm person’s house.

When I first came home from the hospital after being diagnosed, my wife gave me a tour of the modifications she had made in anticipation of my return. As I sat in the new shower chair, holding on to the newly installed grab bar, she pointed out how the shower doors had been replaced with a curtain.

“Now this curtain,” she said, “is the part that’s really going to drive you crazy.”

I stared at her a moment. Then I began to laugh.

“Oh, I see,” I exclaimed. “So this is the part that is going to drive me crazy! I was wondering what the really annoying part was going to be! At last the other shoe has dropped!”

We collapsed in laughter, giggling helplessly for a long time in our ridiculously tiny bathroom in the midst of our ridiculous lives—lives that are neither relentlessly painful nor yet unsustainably burdensome.

When my time comes, I hope I am ready—at peace with God and my fellow creatures. I pray I can go calmly and steadily into the Great Mystery.

But one thing became clear in that damp shower stall: I am not yet ready to go, and she is not ready to lose me.

Most of my friends are still living, and while I can no longer drive, I can still get around. I no longer either teach college music or minister to the dying as a chaplain, but I still have opportunities to share my work and my faith.

All my lines of intolerability are drawn, so far, in shifting sand.

We don’t know exactly how things are going to unfold in the coming months or years. Certainly, the days will come when, as the writer of Ecclesiastes said,

…the doors to the street are closed
…when people are afraid of heights
and of dangers in the streets;
…and desire no longer is stirred.

Then people go to their eternal home
and mourners go about the streets.

and the dust returns to the ground it came from,
and the spirit returns to God who gave it.

 “Vanity! Vanity!” says the Teacher,
“Everything is Vanity!”

(Ecclesiastes 12, passim)

But they aren’t here yet.


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