When I was first diagnosed with ALS, the neurologist at Mayo started me immediately on two machines: a ventilator for sleeping and a cough-assist machine to keep my airways open during the day. I can’t imagine the suffering of ALS patients prior to the development of these two “good friends” of mine.
There is no worse feeling than the inability to breathe.
The cough assist machine is especially important for my type of ALS—bulbar ALS. This form of ALS is found in 30% of ALS patients. Excessive quantities of saliva and phlegm are produced, making it necessary to keep the airways open.
No two cases of ALS are the same. I have my own weird variety. I am now in my fifth year. I lost the use of my legs 10 months ago and moved from a walker to an electric wheelchair full time. At about the same time my speech became unintelligible. My fingers began to cramp and I began typing with my two index fingers. The effects are more similar to the major strain of ALS than bulbar, and is slower in progressing than anticipated.
Which is a long intro to the cough-assist machine.
The machine blows air into my lungs through a mask, and then sucks air out, dragging anything in my airways with it–but not without a tug-of-war! I use it 5-6 times a day—including a nighttime routine: 1 hour before I go to bed, 30 minutes before retiring, and then just before.The machine clears my throat but then after about 10 minutes phlegm breaks loose—I have to sit up on the edge of the bed and use the cough-assist—then I’m usually ok and sleep like a baby all night. Of course, I must add that I cannot sit up on my own and cannot access the machine on my own. I need Ruth’s assistance. And after I use the machine, Ruth has to lift me up with the Hoyer Lift and redeposit me onto the bed.
Last night was a marathon! I was on the cough-assist from midnight until 4 a.m. in order to clear my throat entirely of four globs that defied me. At 4 a.m. I won the contest!
Ruth slept until noon, but I awakened with the birds, and what a great time I had! I meditated on the Book of Ephesians, and even though I recite it along with other scriptures throughout each week, this morning I saw something new—a “revelation.”
In chapter 1 Paul tells the Ephesians that he asks God to give them the spirit of wisdom and revelation so that they might know God better. I hovered over those verses for awhile—wisdom and revelation—hmmm.
When I got into chapter 2, a “revelation” came to me. “For he, himself, is our peace, who has made of the two (Jews, Gentiles) one, and has destroyed the barrier, the dividing wall of hostility, by abolishing in his flesh the law with its commands and regulations.”
Jesus abolished the law in two ways. First, during his life on earth he entirely and perfectly obeyed and fulfilled every requirement in the law. He lived that out as my substitute. Secondly, death is required by the law for anyone who does not keep the law in its entirety. There again, Jesus died as my substitute.
And, then, suddenly a scene exploded in my mind of Jesus on the cross—a scene unlike any I have seen before, either in my own mind or visually reproduced on canvass or in a stained-glass window. I saw Christ hanging on the cross with myriads of foul spirits—the grotesque denizens of hell— swarming over him as vultures on a carcass–mocking, deriding, cursing, spewing filth. And God the Father allowed that to happen to Jesus as my substitute in order that I might not face that scenario at my own death—and into eternity!
And so, back to Ephesians chapter 1: “Praise be to the God and Father of my Lord Jesus Christ, who has blessed me in the heavenly realms with every spiritual blessing in Christ Jesus. For he chose me in him before the creation of the world to be holy and blameless in his sight. In love he predestined me to be adopted as his son through Christ Jesus, in accordance with his pleasure and will—to the praise of his glorious grace, which he has freely given me in the One he loves. In him I have redemption through his blood, the forgiveness of sins, in accordance with the riches of God’s grace that he lavished on me with all wisdom and understanding.” (Ephesians 1:3-8)
Photo above used with license from Shutterstock.