Random Thoughts from a Restless Mind

Billy Ray (not his real name, of course) turned off his implantable defibrillator (ICD) yesterday. Billy Ray is 44.

In my day job I was asked to evaluate him for a problem in my specialty. I was told he was about to enter hospice care and assumed that he was much, much older and simply out of options. I admit that I was somewhat put out by the request, it being Saturday and the problem already well-controlled. Frankly, I thought it was a waste of my time, Billy Ray’s time, and whoever might read my report’s time, not to mention the unnecessary costs. I had a very pleasant visit with Billy Ray, reassured him that the problem for which I was called was resolving nicely, and left the room to write my report.

44 years old though. What was his fatal illness? What was sending him off to Hospice care? I bumped into his medical doc and couldn’t resist asking. Turns out that Billy Ray has a diseased heart that is on the brink of failing; without the ICD his heart will eventually beat without a rhythm and he will die. A classic indication for a heart transplant–why was Billy Ray not on a transplant list? Why, for Heaven’s sake, did he turn off his ICD?

There is a difference between being alive and having a life. It’s not the same to say that one is alive and that one is living. It turns out that Billy Ray suffered an injury at age 20 and has lived 24 years in unremitting, untreatable pain. Cut off before he even began he never married, has no children. Each day was so filled with the primal effort to stop the pain he had little left over for friendship.

Alive without a life. Alive without living. Billy Ray cried “Uncle”.

I have been haunted by this since I walked out of the hospital. How do you make this decision? Where do you turn? Billy Ray has made clear he has no one. Does a person in this situation become MORE religious or LESS? Rage against an unjust G0d or find comfort in the hope of an afterlife? Charles DeGaulle had a child with Down’s Syndrome. On her death at age 20 he said “now she is just like everyone else.” Is this what Billy Ray is thinking? That in death he will finally be the same as everyone else?

And what does this say about each of us in our lives? What does it say about the problems that we face, the things that might make us rage against some personal injustice? How might we see our various infirmities when cast in the shadow of a man who has lived more than half his life in constant pain, a man alone? The answer, of course, is obvious, eh?

The more subtle message is about people, having people. Having family, friends, people for whom one might choose to live. It’s very easy to understand the heroic efforts others make to survive in spite of the odds, despite the pain. Somewhere deep inside the will to live exists in the drive to live for others. The sadness I felt leaving the hospital and what haunts me is not so much Billy Ray’s decision but my complete and utter understanding of his decision.

Billy Ray gave lie to the heretofore truism that “no man is an island”.

Go out and build your bridges. Build the connections to others that will build your will to live. Live so that you will be alive for your others. Be alive so that your life will be more than something which hinges on nothing more than the switch that can be turned off. Live with and for others so that you, too, can understand not only Billy Ray but also those unnamed people who fight for every minute of a life.

Be more than alive. Live.

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