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Beyond Here There Be Dragons

Quality of life is a sliding scale that not only differs from person to person… it also changes in the same person, over time, in altering situations. I’m convinced now it is impossible to decide right this minute … I’ll go this far … then no further. Because when you get right there at the edge of that no further … you’ve changed. The process of getting there stretched you, massaged you, educated you … and that new you … gets to decide all over again. Decide anew … where is the bar now. How far out is the no further today.

I’m sure there are people reading this who will disagree. People who think … oh no … not me. I know my limits. All I can say is while I don’t know where your limits might be … I am absolutely certain … you are the one who’s wrong. You can’t define the finality of the edge … until you get there … and the rules you define it by change with every step toward it.

I have a personal story. I’ll tell it here as it evolved. To make my point. But… bear in mind … I’ve talked to many, many, many who have loved someone all the way to the exit stage left and they all had very similar experiences.

My husband faced the medical review board who was going to decide if he had to be medically retired. He had been diagnosed with a not entirely uncommon neurological disease they felt was directly related to his military service. Motor Neuron Disease. It is a form of Lou Gehrig’s Disease… a.k.a. Amyotrophic Lateral Sclerosis. Before he walked into sit before the board he told me that if they forced him to retire he had no intention of living to be a burden on me or anyone else and intended to take his own life before he wore out all the people in his life.

The board determined he would be retired immediately. It was the only time I ever heard him cry. The term cry is actually the cleaned up version of what I heard coming from that behind-closed-doors interview room. What clawed at my ears were his heart wrenching wails of frustration, disappointment and pain. My heart broke.

He came out of the meeting and together we began the road to our until death do us part.

Ah the road. The no-further places along that road.

He was never going to sit in a wheelchair until he did. Never going to use a power lift recliner until it was the only way to get him up from his chair. Never going to sleep in a hospital bed, or use a potty chair, or sit on a waterproof wheeled chair in a roll-in shower to bathe… right up until the days each took place.

There there were all the personal hygiene edges of no more. His wife was never going to shave him, brush his teeth, comb his hair, apply a catheter for him to use a urinal or no surely she’d never be the one to take care of the no job is finished until the paper work is done of his morning constitution.Until the day she did.

And there was food and coke and coffee and oh my goodness… beer. Those weren’t going to ever be put aside. Then came the feeding tube and the cans of ensure and no longer being hungry or thirsty somehow made this step forward okay too.

We went the full ride. Together. This was over a period of almost three years. The link below is to another commentary by me about the beauty of the trip of a lifetime with the man I loved. But for here for the purpose of discussing the concept of never say never I just want to say that weeks before he died he struggled to type out using an eye-lash mouse on a special laptop to tell me… the man who didn’t want to live if he were retired made a point of saying…

“Being loved by you is so beautiful, so wonderful, that if I had all these downhill months to live over again to get to here – I would gladly.”

Read The Trip of a Lifetime

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