All hooked up with no air to breathe!

Modern technology has been the hot topic for debate ever since the Luddites (early 19th century English weavers who operated hand looms from their homes) attacked and damaged the new spinning frames and power looms which they feared would put them out of business. But once you get locked into new technology you can’t live without it—electricity, automobiles, paved roads, cell phones, the internet, computers, etc.

But what happens when it  stops working?

Yesterday the failure of technology almost did me in!

We went in our Honda conversion van to see my mother lying in a coma in Clermont, 1.5 hours south of Crystal River. I was all set with electric wheelchair anchored into the front passenger area of the van, with my ventilator hooked up to the wheelchair batteries for power.

About 30 minutes after we left we got a text message that Mom had gone to heaven “just 4 minutes ago.” We had just started out of the parking lot of a nearby Panera Bread when suddenly my ventilator shut off and my electric wheelchair went dead!

OK! Now what? I need the air and I am anchored to the floor in my wheel chair—which can’t move without power!

To make a long story short, our nephew discovered that when my wheelchair was anchored, the wheelchair was secured by one of the restraint hooks to two wires in the back of the chair instead of the frame. One connected the battery to the twin motors and electrical system of the chair!

It occurred to me that ALS is that way. A protein enters nerve cells and progressively shuts off messages the brain sends to the muscles. Death comes when all muscles connected with respiration fail. A tracheotomy can be performed at that point, but muscles continue to break down until even the eyelids won’t work.

Who wants to be trapped in a motionless body with full rationality but totally immobile? As my neurologist explained to me, with a trace ALS will no longer cause death, but I could live to be one hundred trapped for several decades in a body that doesn’t work. Add to that the expenses involved and the emotional and physical load that would place on my family.

The good news is that my ventilator, Trilogy, made by Phillips, can prolong respiration beyond the point when traditionally traces were performed. I am grateful that the neurologist at Mayo Clinic put me immediately on a Trilogy for sleeping. And since last October I’ve had a second Trilogy for daytime use.

The greatest source of power I need, however, is the continuing mercy and grace of God so he shine through me to my wife, children, grandchildren and friends. How horrible it must be to face impending death without the presence of God.

OK. I know readers of this blog post think these words are coming from a religious freak, or as one person called me, via email, a “dumb ass.”

Here is my confidence and trust:

Hebrews 4:14 Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God, let us hold firmly to the faith we profess. 15 For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. 16 Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.


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