ALS is a fickle disease

ALS is a fickle disease. It does not, first of all, follow the same path of progression in any two people. And secondly, its path of cellular and muscular shut down change from day to day.

The fickle nature of the disease in my case is particularly demonstrated in the production of saliva. One day I might produce enough saliva to fill a swimming pool. On those “wet” days I have a washcloth hanging from my mouth and make frequent trips to the cough assist machine to suck out the saliva not absorbed by the washcloth.

This was my general condition until about two months ago. Then periods of dryness set in. At times the dryness has been so much so that it hurts to move my tongue or lips and breathing becomes more difficult.

I was given Botox shots in my salivary glands. While helpful for some people, they had no impact on me.

What has helped greatly is a drug used by opticians to dilate pupils during eye exams. I take four drops every four hours. That induces dryness, but there are days like today when my mouth resembles Niagara Falls.

It will be wonderful to be rid of ALS! It will be wonderful to walk and run again, to have full use of my hands, arms, and fingers, and to eat pork ribs, steak, stone crab, and German potato pancakes with my family again!

Good news! That day when I shed ALS and entire God’s heaven is closer than yesterday! And better than that—it’s certain to happen!

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. . . . while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed instead with our heavenly dwelling, so that what is mortal may be swallowed up by life.Now the one who has fashioned us for this very purpose is God, who has given us the Spirit as a deposit, guaranteeing what is to come.  (Paul the Apostle, Second Letter to the Corinthians, 5:1-4)

I realize that some might think that I am overly optimistic about my future. Who can I know for certain that I will enter heaven? There are so many variables!  Is my track record good enough? Have I done enough good to balance out the bad? Have I been loving enough, kind enough, compassionate enough? Who am I to think that I might warrant heaven?

Actually, no, I have not loved others enough. I have not been compassionate, forgiving, gentle, or selfless enough. When measured against others, no matter their religious beliefs, I fail to measure up. I, in fact, do not warrant heaven.

Then why so optimistic?  Because there is good news!

For no one can ever be made right with God by doing what the law commands. The law simply shows us how sinful we are.

But now God has shown us a way to be made right with him without keeping the requirements of the law, as was promised in the writings of Moses[i] and the prophets long ago.We are made right with God by placing our faith in Jesus Christ. And this is true for everyone who believes, no matter who we are.

For everyone has sinned; we all fall short of God’s glorious standard. Yet God, in his grace, freely makes us right in his sight. He did this through Christ Jesus when he freed us from the penalty for our sins. For God presented Jesus as the sacrifice for sin. People are made right with God when they believe that Jesus sacrificed his life, shedding his blood. (Paul the Apostle, Letter to the Romans, 3:20-24)

Note the key words.

  • Grace (I can’t earn it, nor do I deserve it)
  • Freely (I can’t add anything to it)
  • Made right with God (a passive verb–something done TO us by God’s grace, freely)
  • Believe
  • Believe what? 1) I’m a sinner; 2) I have fallen short; 3) Jesus sacrificed his life and shed His blood as my substitute

Entrance into God’s heaven is not based on my performance, my worthiness, or how I  measure up in comparison to others.

One Reply to “ALS is a fickle disease”

  1. Ken you never cease to amaze me. When I am down over something I think about you and how God has enabled you to perservere through the most unimaginable circumstances. You are bringing God the glory for allowing him to use you and showing the rest of us that life is all about taking what he gives us and giving back to him praise with a thankful heart. You are blessing all of us! Love you Lois


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