The only thing worse than going silent is for no one to notice. Fortunately, that is not my case. Many caring individuals have inquired into my absence in the blog arena. I thought a health update might be in order. So, here we go.
As you know, ALS is a nerve disorder which affects muscles. For the past two years my voluntary muscles have been deteriorating. Presently, I am confined to a wheelchair. I can shuffle my feet some, but no more walking. A fancy electric wheelchair allows me to roam around our property and give my grandchildren rides. I am amazed how quickly they learned that the joystick controls all the excitement and power.
My voice is reduced to garbles right now. My family’s ears are accustomed to my mumbles and they understand most of my limited speech. I find that parents of small children do better at understanding me; their ears are finely tuned. Come visit me and test your skills at translation and charades.
Typing has become extremely more difficult these last couple of months. My fingers don’t work correctly and sitting at my desk requires neck and upper body strength which is no longer there. Presently, I am typing this note propped up in my bed using an iPad and two styluses. I have several blog fragments left unfinished because of my limited finger control. I would dictate but the computer can’t understand me any better than my friends. Maybe this new arrangement will get me writing again.
I no longer eat or drink. All nutrients and water are taken in via a bolus feeding tube. Five times a day someone pours me a drink, or rather, pours a drink in me. I get plenty of calories; I have actually gained a little weight back. I went from 175lbs to 125lbs and now I am up to 135lbs. Just call me “Chubby.”
A new muscle annoyance these past few months has been in my mouth and face. Due to less jowl muscle, I have less control over my jaws, so I constantly bite my lips. In the big scheme of things this is minor, but it is the horsefly in my stall right now. I told my wife that I was going to have my teeth removed; I don’t need them and they are now a hassle. Her sad look made me quickly reveal that I was joking . . . and I couldn’t get a good price for them anyway.
One bizarre side effect of my mouth muscles is that I am swallowing large amounts of air. I used to do this intentionally as a child when I wanted to form a colossal burp. What was annoying then for those around me is now annoying for me. The 60 year old body doesn’t manage air like the 10 year old body.
Fatigue is gripping me more these days. I sleep a lot. It would be worse if I had a long list of chores piling up; fortunately, no one is expecting much from me these days. This helps assuage my sleep guilt, but I am having to get used to being a slug.
And so, my “outer man is decaying, but the inner man is being renewed day by day.” The apostle Paul wrote that phrase to the Christians in ancient Corinth. He was discussing suffering brought on due to his life as a servant of Jesus. I find it encouraging that quality of life is not limited to the outer man. We are more than our flesh.
The other day I came across a piece of paper where I had written, “Born once/die twice. Born twice/die once.” I am not sure what those notes were originally for, but they are applicable now. Jesus was speaking to a religious man one evening, and He told this gentleman that he needed to be born again, a second birth. Jesus went on to explain how this happens. He used a part of Jewish history. When Moses was leading the people to the Promised Land, they were extremely rebellious, filled with grumbling and complaining. A consequence for this was the arrival of venomous snakes. People were being bitten and dying. They quickly saw the connection and came to Moses in repentance. God instructed Moses to create a snake of bronze and wrap it around a pole. If the sick people looked upon the snake on the pole, they would be healed. Then Jesus said, “As Moses lifted up the serpent in the wilderness, so the Son of Man must be lifted up. That whoever believes in Him may have eternal life.” Then Jesus said these famous words: “For God so loved the world that he gave his only Son, that whoever believes in him should not perish but have eternal life.”
If we are only born once, our flesh will eventually die and our spirit will die with it, the second eternal death. But, God, rich in mercy provided eternal life. If we are born twice (body and spirit), we will only die once. Our spirit will live eternally and be given a resurrected body! This happens through repentance, looking to Jesus who was lifted up on the cross. There is our source of healing and life.
My body is dying. My lungs are now functioning at 24%. Respiratory failure is what normally kills the ALS patient. But, I do not fear this valley of death for I am alive within and will live eternally. This is only by the grace, kindness, and sacrifice of Jesus. I can’t keep silent about that.