Hope defangs ALS

ALS is a death sentence evoking many responses from its victims.

A death sentence creates all sorts of emotions, whether you’re in a jail cell waiting for execution, or a Christian in a Syrian town that ISIS overran this morning.

Depression is common with ALS.  Some shrivel back into a shell of isolation. Some become angry: “Why me?,” they ask. Some contemplate physician assisted death. In Oregon, when physician assisted death was first approved in 2011, a disproportionate number of ALS patients inquired about the process (over 50%).

Others attempt to participate in as many clinical studies as possible, although knowing that 50% of patients in a clinical study receive a placebo and not the trial drug.

Others simply give up.

When I was asked how I was adapting to wearing a mask at night with a ventilator, I responded that it was no different than wearing a dive mask and snorkel while catching Florida lobster or spear fishing for grouper and snapper—activities I love. And yet I heard recently from a medical professional of a woman who was declining rapidly with ALS because she refused to wear a mask. She would rather die, she said, than be trapped with her face in a mask.

What seems to make the difference? The element of hope. 

Many prisoners on death row live with the hope of a reprieve. Marines trapped behind enemy lines stay energized by hope of a rescue. An Air Force crew floating in a small raft on the Pacific Ocean, with little fresh water remaining, hope they will be located.

However, “hope” in these scenarios is totally undependable and has no power to bring the desired end to pass. Hence, the common expression, “I hope so.”

The hope of a Christian when facing death is a “living hope.”

In the examples above, Prisoner A and Prisoner B might occupy adjacent cells on death row. Marine A and Marine B might lay in the same fox hole behind enemy lines. And Pilot A and Co-Pilot B might be floating in the same small raft. They share a common “hope” for reprieve or for rescue. But Prisoner A, Marine B, and Pilot A, as Christians, have something in common. They have a hope beyond whatever they might experience in the near term.

The Apostle Peter put it this way: “Blessed be the God and Father of our Lord Jesus Christ, who according to His abundant mercy has given us a new birth into a living hope through the resurrection of Jesus Christ from the dead, to an incorruptible and undefiled inheritance that does not fade away, kept in heaven for you, who are protected by the power of God through faith . . . even though now, if for a little while, you have had to suffer various trials . . .” (1 Peter 1:3-6)

I read somewhere, “The Christian’s hope is not a hope-so but it is a know-so.”  It is not a feeling or an emotion, although hope can certainly stir the emotions. On the other hand, it can also calm debilitating emotions. It is one of the three cardinal Christian virtues, together with faith and love.

A Christian’s “living hope” looks with certainty to the future based on the knowledge of facts.

And so with ALS. Whether I die as a result of ALS, or die sooner with another ailment, or am one of those rare cases where ALS ceases to progress further, I will one day die physically. When I do, my spirit will go right on living into eternity.

My Christian hope is based upon a verifiable fact. Jesus Christ, the Son of God, made this promise: “All those the Father gives me will come to me, and whoever comes to me I will never drive away. For I have come down from heaven not to do my will but to do the will of him who sent me. And this is the will of him who sent me, that I shall lose none of all those he has given me, but raise them up at the last day. For my Father’s will is that everyone who looks to the Son and believes in him shall have eternal life, and I will raise them up at the last day.” (John 6:37-40)

How do I know Jesus was not a charlatan or the teller of tall tales?

His resurrection from the dead confirms to me that he is who he claimed to be—the Savior of sinners. His resurrection from the dead confirms to me that he has the power to do all that he promised—to grant eternal life to all who believe and trust in his promises. His resurrection from the dead constitutes the basis for the hope I have that I will live with him in eternity after I depart from this life.

See my Easter post for proofs of Jesus Christ’s resurrection, “How Easter helps me deal with ALS.”


“Do not let your heart(s) be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.” (John 14:1-30


6 Replies to “Hope defangs ALS”

  1. Sent from my iPhone. Oh Ken I have started to ‘try’ to blog- and actually did one time- and it failed. I am still unsure of what I did. ‘You’ have ESP been on my heart today. I had a abscessed molar pulled which the dr thought was going to be complicated and it was not 😊PTL. Then I received a trouble long report on my 24 hr dr prescribed urine collection. Why was that needed to provide me with knowledge on why I get so many kidney stones. That report plus the one re my IBS leaves very little that I should eat. Immediately upon feeling myself beginning a ‘pity’ party, I slipped out to my favorite place to the porch and yard. I had just reread your blog re your feeding tube, etc. and scolded myself. You cannot eat or taste and that knowledge puts my ‘limited’ diet in proper perspective. Your humor remains sharp as ever. One of these days, I will try to blog. Your precious wife truly is a noble woman and encourages all of us to persevere. She won our hearts early on- but yours far sooner. I am sending a hug that Ruth can give you from us. I have sent a couple in our Sunday School class your blogs. They have a son who has been in a fight against Pancreatic Cancer. Not sure where he stands spiritually but he and his girlfriend of about five years attend Highland Park Pres in Tampa. If I remember rightly, he is in his early 30’s. They had to stop his chemo for a while due to his white blood count. His name is Stephen Hill. You ‘might’ hear from him. You are a wonder and we love you. Please forgive our negligence. Give your entire family our love. Thank you for your willingness to be so open. You may not hear from them but I am sure you have touched countless lives with your testimony. Please do not grade my note. My bottom cannot sit too long at computer so I use my phone. This hen pecking does a number on your unemployed typing teacher. Love you. Gayle.



  2. Thanks, Ken. My father just passed away on Father’s Day and I’ve been thinking about death quite a bit. Having come from an atheistic background, and then watching my father’s progression to death without hope, his passing spoke to me in a way I had not considered in many years. He was cremated without ceremony or funeral. It was just my immediate family that was present, left to comfort my mother who has dementia and asks every time I speak with her, many times each call, “when did daddy die?” or “did daddy die?”.

    In an ironic way, I truly believe that this is working out to forge a deeper channel of trust within my heart, a wider expanse of hope in my soul. Having spent the first week in San Francisco with family, I know am working through slowly the process of realizing the influence of the man who was my father, a man of skepticism and inquiry, of books and of learning. I treasure that rich heritage. Ironically, his love of books led me to the Book of books, and his desire to inquire and challenge thought to a desire to push through arguments and philosophies that oppose the value of His Book and the One of who it speaks.

    Thanks again for the witness and encouragement of your life. You are a blessed man to have such a rich legacy. I hope for such.


    PS I love that Scripture from John 14. It was the last thing I shared with my father before his death.


  3. There is no other way to face ALS than with Jesus. He is not only giving you strength and encouragement for this journey but sort of turning it into an adventure. Who loves an adventure more than you? If there was a contest amongst ALS sufferers and how well they were dealing with it you would be the winner hands down!


  4. Thanks, Ken. I’m blessed and assured every time I read one of your posts. God continues to bless many through you. We praise God for that! We praise God for you!
    God’s Peace,


  5. Thanks for the good reminder Ken! PTL for the hope He has brought into our lives. It truly is a BLESSED HOPE!

    Our love to you and Ruth!

    Tom and Jeannine


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