On Planning to Get Punched

On Planning to Get Punched
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“Everybody has a plan until they get punched in the mouth.” –Mike Tyson

The author Lee Child includes that quote in his Jack Reacher crime novel series as part of the title character’s mantra. Reacher always endeavors to strike the first blow. The result, as Tyson would have predicted, is havoc imparted to the strategy of Reacher’s adversary. Perhaps since Reacher invariably comes out on top (surprise!), it is a notion worthy of consideration.

Except in the case of ALS, that’s not an option. ALS unerringly fires the first salvo. Excepting for the familiarly predisposed, 90 percent of us have no clue that an altercation is even a possibility.

The massive haymaker that is initial diagnosis viciously rips to shreds all existing plans — even those thought to be foolproof — the moment that it’s delivered. Instantaneously, our existence as we knew it is over. 

Sadly, counterpunching proves mostly futile. ALS borrows from Muhammad Ali’s boxing agenda, “Float like a butterfly, sting like a bee. The hands can’t hit what the eyes can’t see.” ALS is ever elusive. That stark reality forces the jettisoning of all incumbent hopes and dreams in favor of ones more appropriate for steadily eroding function and a truncated lifespan.

Legendary basketball coach John Wooden was fond of the expression, “When you fail to prepare, you’re preparing to fail.” Confoundingly, ALS sufferers know in advance that every method and measure of preparation is destined for eventual failure. We thoughtfully and diligently put plans in place based on our current baseline, and a comfort zone of sorts is created. Then ALS swings and connects, destroying our baseline and rendering our safe haven a cruel illusion. 

We are left to pick up the pieces, salvage what we can, and draft a new, less ambitious blueprint for moving forward. Then it happens again and again, ad infinitum. The conundrum is that we are thrust into a “do loop,” in which a static exiting condition is never satisfied. 

I continued driving a car for as long as I could. So obsessed with independence, I gladly tolerated the cumbersome task of removing the foot-to-knee brace on my right leg to enable safe operation of the accelerator and brake. That is until ALS hit me with a jab, leaving me unable to control leg movement without assistance from my right hand. My world became much smaller.

Likewise, it was an uppercut from ALS that ended my walking days. Despite numerous carefully chosen safeguards, it literally deposited me on the floor, facedown, in a pool of blood. As before, my subsequent existence bore no resemblance to the one that I had painstakingly schemed to maintain.

Similarly, a powerful punch has left me nearly mute-like. A world without words is unrecognizable to me.

Lately, it has been the sustenance part of my world that ALS has been using as a punching bag. In the last 10 months, ALS has pummeled me three times with such force that the fear that I might be down for the count consumed me. Each episode involved dysphagia-induced airway obstruction. 

Of course, I have a “plan” for safe eating. Small, easily chewable bites — no talking, laughing, or head or neck movements, along with focused swallowing — and no rushing are the main components. Irrespective of all of that, ALS has been sucker punching with vigor. The most recent occurred two days ago.

For the better part of seven hours, a bolus of food was painfully lodged in my esophagus, just below the epiglottis. The discomfort was amplified by frequent activation of my gag reflex. Worse yet were the occasional moments when the gagging was productive. In those instances, a portion of the food, saliva, and digestive fluid roadblock would advance north of my windpipe and seriously constrict my breathing. Each time it happened, I was reminded of how imminent mortality might be.

Thankfully, the food, and with it the entire unpleasant episode, finally passed. I emerged, for the most part, unscathed, with the chief outcome being the necessary launch of another planning initiative. 

Two “sacred cow” elements are implemented daily for every plan I construct. With the first, I try to consciously tally all of my recent sins, seek forgiveness, and reaffirm to do better. With the second, I ask God to take me ever nearer to Him. Both enable me to withstand punch after punch. 

Some scoff at my faith. That’s OK. One of the beautiful elements of Christianity is that we’re instructed to love those we’re in disagreement or conflict with. My fervent desire is for everyone — especially after being on the receiving end of a crushing roundhouse — to experience “the peace of God, which surpasses all understanding” (Philippians 4:7).

Said another way, please join me in embracing the gist of a song from the band R.E.M.: “It’s the End of the World as We Know It (And I Feel Fine).”

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

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21 comments

    • Dave Reckonin says:

      Your prayers are simply virtue -signalling however well-intentioned.
      Praying for a cure? Great but all the evidence is that research hasn’t got a single clue what causes this horror. It’s blindfold darts and and a scatter gun approach which hopes to stumble over an effective treatment.
      Whart sort of all-loving God teases the researchers by keeping a possible cure well out of reach of the laboratories for so many decades…. 150 years?
      Hardly the approach of an All-Loving God which we constantly get shoved down our throats, is it.

  1. Dave Reckonin says:

    ” “the peace of God, which surpasses all understanding” (Philippians 4:7).”

    It looks like the Philippians said this, and God didn’t. The thing about something that surpasses all understanding is that no-one can understand it. If something cannot be understood but is accepted as true then those believing it give themselves a get-out-of-gibberish card because they don’t have to explain it. Perhaps something might come from God that IS understandable, but I doubt it because he hasn’t bothered to explain. Ever.
    The bible is mainly full of things which other people have said about God. Not much explanation there then, and nothing confirmed by the Big Yin. What would be helpful if God explained it ? Well, firstly, he might tell us….. What Purpose Is Served by HIS very own Creation of ALS ? To punish us? To test us? To have more time on our hands to discover him and his oh-so cunningly concealed reasons for killing lots of us indiscriminately ? One of the biggest deceits if not lies, is that ‘God Loves Us.’Really? You don’t say!
    This absent uncaring deity Loves Us? Yet allows his ruthless Hit Man ‘Nature’ to exterminate us in all sorts of horrific ways, young old or babies, with all the suffering and grief that goes with that. It’s a ridiculous notion that even the most devout cannot string two words together to explain. Rick might regard me as a scoff-er. I wouldn’t blame him, but I would certainly disagree. I seek someone, anyone, who can explain the ‘promises’ of the bible and the tortuous, inexplicable, glib contradictions it constantly burbles. Rick is brilliant with words and could have been an author, but even his agile mind cannot explain why God does what he does; and therefore he cannot show that God exists. Who will have the guts to ask God when they arrive in Heaven ‘What the hell was all that ALS about?’
    I will do so gladly. If I get sent to Hell for asking such a presumptuous irreverent question then I’ll have a clearer view of what ‘Vengeance is Mine sayeth the Lord’ is all about.
    One thing is very certain. If God didn’t exist we’d have to invent him.

    • Rick Jobus says:

      Dave,
      I am the beneficiary of a dynamic you can’t comprehend because you don’t believe in its origin: the grace of God. I pray that someday you may share in the splendor. It never disappoints, and always enables me. His yoke is easy, and the burden light.

      • Dave Reckonin says:

        ‘….beneficiary of a dynamic you can’t comprehend because you don’t believe in its origin: the grace of God.’
        Rick, Do me a huge favour and translate that burbling gibberish in to normal English, please.

          • Rick Jobus says:

            Dave,
            My belief is that the collective we were created to live in idyllic harmony with God, and each other. Time after time we have selfishly chosen to violate that intent, thereby rendering ourselves vulnerable to the ravages of a world outside of His protection, ultimately leading to death. Every moment that I’m spared of my rightful anguish and pain it is because of God’s grace. Further, out of grace, love and mercy, He invites me to spend a perfectly blissful eternity with Him.

  2. Andy Straw says:

    In response to Dave R.: You say “I seek someone, anyone, who can explain the ‘promises’ of the bible and the tortuous, inexplicable, glib contradictions it constantly burbles.” If you really mean that, I would be happy to speak with you to explain what I understand. (I am entering my fifth year of having ALS.) I think you have some misunderstandings about Christianity, God, and the Bible. I would ask you: How well is it working out for you not to believe in the God of the Bible? You seem very angry and bitter. Contrast that with the peace and hope that believers in the God of the Bible have. I admit that I don’t fully understand it, but that doesn’t mean I can’t experience it, or that it isn’t real. Friend me or IM me on Facebook if you would like to discuss.

    • Dave Reckonin says:

      ‘ I admit that I don’t fully understand it, ‘
      And yet you berate others for not fully accepting something that even you don’t understand.
      It’s like going to college and your teacher does know his subject but wants you to believe everything he says. Get real please. What’s the weather like on your planet?

  3. Dave Reckonin says:

    ‘..or that it isn’t real’
    Please demonstrate how it is ‘real’ for us all.
    (or is it just real because YOU feel it is real?)

    Genuine request. Seeking Reality-Based Truth…..

  4. Dave Reckonin says:

    Rick says “Time after time we have selfishly chosen to violate that intent, thereby rendering ourselves vulnerable to the ravages of a world outside of His protection, ultimately leading to death.”

    I don’t think the little children in the local paediatric cancer ward have violated anyone’s intent. Most of them will die before reaching age 5. The pALS I know have lived decent lives and have not, say, for example, shot people or robbed old ladies or banks etc. So why should those little children or pALS pay the price for the guilty ?
    On the other hand why should anything be ‘outside of his Protection? He is, we are told, the creator, and All-Powerful so he can do anything he wants.
    Clearly, he chooses to kill the innocent, or let his No. 1 Hit Man (Nature) do his hit jobs for him. Another sign of his indifference for the claim you make Rick, is that he destroyed Sodom & Gomorrah so Bible says, but not,say, the Nazis. He caused the Great Flood but allows sinister priests to abuse little children.
    You seem to be saying Rick, that we live in a world of sin, and must pay an awful price, even though those sins are mostly those of others and mainly we are blameless.
    Something else seems to result from this claim; whilst Vengeance Is His, Individual Justice is not really his strong point.
    Thank you for putting forward one of your main tenets though, Rick. I genuinely appreciate that you did it; but I don’t agree with it because it makes no sense whatsoever.

  5. Sybil says:

    Very hard to understand and if I could say what my life has been like people would say they doubt that I am being truthful ! Life seems to be very unfair !

  6. M Smith says:

    God spoke when he promised Isaiah, “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand” (Isaiah 41:10). Isaiah’s peers were taken captive by Babylon for seventy years.

    Jesus told his disciples, “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world” (John 16:33). Jesus didn’t promise that believers wouldn’t have times of crisis; he promised we would.

    Every generation experiences a crisis in the world. When we look at history, we find people of great faith in every generation. All of those people endured “tribulation” of some kind. Every generation of God’s people have been “dismayed” and in need of God’s “help” because every generation has experienced “tribulation.”

    We live in a fallen world….with death, illness and suffering that began with the first sin… that of Adam and Eve. Since then, sin has been part of every generation. Not one of us is without sin, no matter how good we think we are. That is why Christ, who was sinless, went to the cross for us. He gave himself as a sacrifice for us, and died for our sins so we would be free if we believe and trust in him. In turn, as we believe, he gives us his peace… and eternal live.

  7. Dave Reckonin says:

    ‘We live in a fallen world….with death, illness and suffering that began with the first sin… that of Adam and Eve.’

    Of course…Adam & Eve who ate an apple and were led astray by a snake. Garden of Eden etc…all of us descended from those two naked frolickers.
    If that gibberish were true then we cannot seriously believe in an ‘All-Loving God’ can we ?
    Please try to live in the real world than that Disneyesque ephemeral fantasist world. I doubt even Rick believes in Adam & Eve.

  8. Dave Reckonin says:

    “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I WILL HELP YOU, I will uphold you with my righteous right hand”

    ‘I will help you……’
    I know of no pALS who think they are ‘being helped.’

  9. Dave Reckonin says:

    “Not one of us is without sin,”
    Tell the little children on the Paediatric Cancer Ward they are sinful and must die….
    Is that what your God wants for them ?
    You need help…God’s or somebody’s

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