ALS is a terminal illness. There is no cure. There is no escape.
But as a Christian I have found over the last three years very few days when I have been discouraged or despondent, other than the first week when the shock hit of knowing that death is no longer a topic to be merely discussed but a reality to be soon embraced.
How can this be? Am I illusory, unrealistic—am I escaping into a world of denial?
And how is it that I can laugh and find amusement in little events? Or find pleasure in watching the butterflies and humming birds outside the window?
Martin Luther said, “You have as much laughter as you have faith.”
One late night an episode occurred which is but one of many ALS-related events that have caused Ruth and me to laugh every time we remember it.
Without her hearing aids, Ruth is 100% without hearing. With them she has about 30% hearing. Loss of hearing began when she was about 40 years old.
One night she had gone to bed early, shut the bedroom door, and as usual took out her hearing aids. However, she did take to bed her iPhone so that if I had any difficulty I could wake her up. Now her hearing is so bad that the only ring option she can hear sounds like a submarine alarm letting the crew know it is submerging.
I was sitting in my electric wheelchair with a blanket over my legs for warmth when I decided to change positions and sit in our recliner. My usual way to do this was to stand up from the wheelchair, take hold of my walker, and then back up with the walker into the recliner.
Well, that’s when the amusement began.
As I stood up from the wheelchair my arm hit the joy stick which is the wheelchair’s steering wheel. With that the wheelchair lurched forward, hitting me in the legs and knocking me to the floor, and with that my iPhone slide across the tile floor and out of reach.
What do I do now? I had a medical alert button on a lanyard around my neck, but I was too proud to press it and have EMS come to the rescue. Besides, it would take 15-20 minutes to arrive and I was lying on the floor where I couldn’t breathe without my ventilator. So I began yelling for Ruth to come, even though I knew she probably couldn’t hear me. Again and again I called out, but no response. Out of sheer frustration I finally pressed the medical alert button.
And just as you see on TV, the operator asked, “Do you need assistance?” And right on script I relied, “Help! I’m on the floor and I can’t get up!” And right on script she replied,, “Assistance is on its way.”
Now all of this is taking place, not in a city, or town, or even a village. We live in a rural county. The nearest town is 9 miles way. Just then Ruth did hear my second attempts to wake her up and came out of the bedroom to see what was wrong.
She exclaimed, “Oh, no! What do we do now?” My legs were too weak for me to get up even if she helped me to my knees. So I told her to roll me onto the blanket and drag me into the bedroom where she could give me the the mask for the ventilator.
After several more minutes on the floor in the bedroom, I heard someone rapping on our bedroom window and identified himself as a sheriff’s deputy.. Ruth could not hear the wrapping but I told her to open the garage door to let the deputy in.
He and Ruth were able to lift me into bed, and just then EMS arrived.
So that’s how I finally got to bed that night.
And, oh, yeh. The EMS vehicle pulled right next to a sign I had in the drive area, a replica rifle with the words, “We don’t call 911!”