Who Is the “Well-est” Person I Know?

by | Aug 19, 2014 | General Health, Reflection

I met Craig twenty-five years ago. He was just retiring on disability from his job as a fire fighter. He was losing his ability to walk.

Craig was in the early grip of ALS, “Lou Gehrig’s Disease”, a progressive neuromuscular paralysis that renders its victims increasingly more weak and helpless until, at last, unable draw breath, they succumb to respiratory failure.

During the early months of his illness Craig would come to my office, first walking, then with the assistance of a walker, then in a wheelchair. We didn’t talk so much about treating the disease, but rather about what to expect, how to cope, and how he and his wife Judy would live. We talked about life, and love, and about important things. A deeply thoughtful and theological man, Craig talked with me about the most important thing, his faith in Christ.

He was not afraid of death.

For this reason I was stunned to hear – months later in the intensive care unit where I expected to be saying goodbye to Craig as he lay unable to breath –  that he (they) had made arrangements for being supported at home on a ventilator machine. I can honestly say that my own breath was sucked out of me for a moment. I thought to myself that the veneer of peace and spirituality had finally cracked. Now I determined it would be my task to gently break down the walls of denial that prevented this brave couple from “letting go”. Life on a ventilator? You’ve got to be kidding me!

Well, they showed me.

That was twenty years ago.

Today, Craig lies motionless, except for his sparkling eyes and a voluntary twitch at the corner of his mouth. His precious wife, Judy, his in-laws, a loyal nurse-friend, and others attend to his physical needs. But especially Judy.  She tends to the ventilator and adjusts it according to Craig’s instructions (he can sense whether he’s doing well or not). She puts the nutrition into his body through a gastric feeding tube. She sees to it that the waste is eliminated from his body. Twenty years of total hands-on 24-7 care without even a momentary lapse. “Super-human” is the only way to describe the unflagging and conscientious attention to every inch of his body, as there is nary a red or tender spot anywhere from bed pressure, let alone a sore.

More wondrous still is their communication, She translates his words (seemingly by telepathy, but actually from a clear plexi-glass “letter-board” held in the air between them, a transparent painter’s palette upon which letters and numbers are pasted, from which Craig spells out words and phrases by “pointing” with his eyes… actually, the board itself went away years ago, they just know the position of the letters in the air!). He writes or “speaks” via a computer voice synthesizer that he activates by eye movements, again laboriously spelling out words. His writing is articulate and eloquent.

For years I have made house calls (though not frequently enough) to monitor his status and to attend to whatever medical issues I can help with. As I have stood by his bedside and carried on conversations with him (either through Judy’s interpretation or via the robot-voiced synthesizer) not once have I witnessed a moment of bitterness. Surely, he and sweet Judy have been through dark times of despair, but never have they conveyed that to anyone I know. They are saints.

Though he lives without the ability to move a muscle, he has more life than any five people I know. He makes the most of what he has…  and infinitely more, body, soul, and spirit. He is the “Well-est” person I know.

For a few years Craig served as an elder in his church. The leadership would gather for meetings at his bedside. I know he prays for me.

When I go into his home I am tempted to take my shoes off. It is holy ground.