Breathing is taken for granted–until something tries to take it away!

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.

10 Replies to “Breathing is taken for granted–until something tries to take it away!”

  1. Oh Dr. Wackes! I’m so glad you wrote this post for two reasons: 1. Because those of us who tenderly love you need to know of your suffering so that we remember to pray for you & Ruth. and 2. Because you are showing us how to die. I know that you are a humble man, but from the outside looking in, you are a martyr from ancient times, standing in the middle of a fire with a backbone of steely determination, and filled with the Holy Spirit, with hands upraised in praise to The Great I Am. We constantly look for examples of how we want to live. But we need to know how to die too, because we are just a mist/a vapor…….a breath.
    What amazes me is that if we were to have a measuring scale & put your torment on one side, and the glory/joy you bring to God right now on the other, the weight of glory must be heavier, or you wouldn’t be here.
    As I drive to work each morning struggling against the mundane, I love the reminder that every word -spoken or written- every action done in love have an endless rippling effect throughout the universe for all eternity!
    Because you are using those two fingers to type, (and when your fingers won’t move, you would type with the tip of your nose if you could), right up until your last breathe, you exemplify what a saint does in this passage:
    “For I am already being poured out like a drink offering, and the time of my departure is at hand. I have fought the good fight, I have finished the race, I have kept the faith.” (2 Timothy 4:6-7)
    The Lord gave, and the Lord hath taken away; blessed be the name of the Lord.
    I love you and Ruth. May God be in your every breath. May He envelope you in His strength and comfort, my dear sweet brother, elder and example.


    1. Thanks for your comments, Kristie! You said something very profound that helped me to focus more clearly. “What amazes me is that if we were to have a measuring scale & put your torment on one side, and the glory/joy you bring to God right now on the other, the weight of glory must be heavier, or you wouldn’t be here.”

      Re the martyrs, no one seeks to die. Death is our mortal enemy, per Paul: ” When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory” (1 Cor.15). But we do not fear this enemy. It has no dominion over us. Only two kinds of people do not fear death: Christians and atheists–Christians, because we know who is on the side of the doorway hating to receive us, and atheists, because they see death as the doorway to oblivion. Hence, Paul’s depiction of their mantra, ““Let us eat and drink,
      for tomorrow we die.”

      Re the martyrs, they are cocooned in grace. I sense some of that now, though not a martyr. I am amazed at my attitudes, moods, and responses. The only explanation is God’s grace. It comes in stronger doses just when we need it.


  2. Ken,
    I enjoy reading your blogs. Thank you! I greatly appreciate how God is using you through all of this.
    Please know you and Ruth are in my prayers.



  3. Ken: As the apostles led the early churches by their letters, so you are leading us as you selflessly serve us by your blog, and as sweet Ruth selflessly serves you and us by example as well. You are still our dear leader and pastor, as we follow homeward with you through these valleys. Know that the service of you both and the sufferings of this present time are storing up for you both an “Eternal Weight of Glory” that will ‘weigh’ you down with voluminous joy forever and ever. Amen! I rejoice for your future and that I will get to see you crowned! Love from Robin (and Jonathan) Richards


  4. Thanks Ken for sharing your inspiration and God’s revelation to you. May God continue to walk minute by minute with you whispering His love and promises in your ear. Blessings to you and Ruth.
    ~with love, Linda and Bryan Mitchell


    1. Thanks to all of you at EE I was able to send the EE booklet in German to a friend in Germany this week.

      By the way . . . the technology person at WA can’t figure out how we secured a .edu web address for WA! I passed on the secret–we were so early to jump in that the rules hadn’t been written yet. Again, thanks for birthing all of that, Linda.


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