Oh My God — I Have ALS

Oh My God — I Have ALS
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The lyrics to “God Shuffled His Feet,” a song by the Canadian band Crash Test Dummies, portray God as indifferent to our struggles. When he speaks of someone perhaps having “some strange disease,” the people didn’t know if it was “a parable, or a very subtle joke.” But “God said nothing.”

I periodically mention the impact that my faith has had on coping with the terrors of ALS. The reaction from some folks is one of incredulity. It may be that this type of response is, in part, prompted by a Dummies-like view of God. 

Regardless, a similar question is forthcoming. Just how can I believe in a God who, seemingly contrary to an all-loving nature, allows devastation like ALS to be possible? The answer is found in a combination of my simplistic world view, my engineering background, and the benefit that faith has had during my journey with ALS.

First, it’s easy to get trapped in the vacuum that ALS misery inexorably pulls you toward. The reality, of course, is that we all die. Be it from ALS, another disease, homicide, natural disaster, accident, or old age — life is a death sentence. The relative difference, from person to person, in the creature comfort enjoyed or pain suffered in our nanosecond of existence, is infinitesimally trivial compared to the finality of that sentence.

Second, I once was an engineer. That vocation cultivates a disciplined certainty that nothing happens by chance. Some force flipped the creation switch. That “big-bang” moment ultimately culminated in the only species capable of entertaining the notion of God. Common to all humanity has been “a basic belief in one’s own objects of worship.” Logic tells me that is not the byproduct of the tickings of an arbitrarily random cosmic clock. A “higher power” must be causal.

Lastly, there is the “what’s in it for me?” Besides the debatable premise of salvation, not a day passes in which my faith doesn’t pay psychological dividends.

ALS is a purveyor of paralyzing loneliness. Even in a roomful of people the isolation from normalcy is often painfully palpable. When I was diagnosed I was living by myself in a new state, between jobs, and with only a few local acquaintances. The news sent me into a dreadful tailspin. I had never felt more alone, naked, and afraid. Amid this crushing angst, my mind heard a voice: “I am with you.” Over time, and after receiving that message multiple times, I came to realize that God is always by my side.

That awareness not only assuages loneliness, but also it serves to tamp down the anxiety caused by ALS’s myriad precarious predicaments. My initial reaction to ALS havoc is often pure panic. Frantic agitation transforms to calm the instant I realize that no matter the outcome, as long as my faith remains intact, my place at God’s banquet is reserved. 

That confidence has served me well. From a four-night stay in the intensive care unit, to laying in a pool of my own blood, to choking, to second-degree frontal asphalt burns, I am eventually at peace with everything that ALS has served up. For me, “Thy name is as ointment poured forth” (Song of Solomon 1:3) rings true. 

Faith also occasionally allows me to construct a cocoon of sorts, which is impervious to all things ALS, for the duration of my stay. In the book “Experiencing the Depths of Jesus Christ,” by Jeanne Guyon, the process is described. By following the precepts offered by Guyon, I sometimes achieve complete rest before the Lord, which nothing can disturb. Perhaps the psalmist had that in mind when writing “Be still, and know that I am God” (Psalm 46:10). The delight, contentment, and love that I experience during these interludes is profound. The spillover lasts long after. 

I fully appreciate that faith in God is not everyone’s preferred vacation destination. But everyone, believers and nonbelievers alike, crave shelter from any storm. John Lennon’s song “Imagine begins with “Imagine there’s no heaven.” Sometimes characterized as an atheist anthem, it then goes on to describe some of the promised aspects of a heavenly afterlife. 

Faith allows me to imagine that there is no ALS. If I am wrong about God, then upon my death, I return to oblivion none the wiser. But I will still have been blessed. For even in the face of ALS, my faith has afforded me serenity and joy as I traverse this vale of tears. Minimally speaking, via a virtual shuffling of feet, I enjoy a slice of heaven on earth.

***

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.

Rick is a 62-year-old man who was diagnosed with ALS in January 2007. Currently a resident of Southwest Florida, he has lived in four other metropolitan areas, but greater Chicagoland will always be “home.” Rick is a degreed engineer, spending his career in the medical device industry. He’s had the good fortune of extensive travel throughout the United States, Europe, Asia, and the Caribbean. He writes, in part, to be an ALS advocate. Additionally, it is his hope that his output will help dispel the myth that technical folk and digestible prose aren’t mutually exclusive.
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Rick is a 62-year-old man who was diagnosed with ALS in January 2007. Currently a resident of Southwest Florida, he has lived in four other metropolitan areas, but greater Chicagoland will always be “home.” Rick is a degreed engineer, spending his career in the medical device industry. He’s had the good fortune of extensive travel throughout the United States, Europe, Asia, and the Caribbean. He writes, in part, to be an ALS advocate. Additionally, it is his hope that his output will help dispel the myth that technical folk and digestible prose aren’t mutually exclusive.
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29 comments

  1. Dave Reckonin says:

    Rick is, as usual, sparklingly wondrous in his prose and explanations.
    It seems clear that whilst travelling this dangerous road of ALS, it is not the reality of God’s existence that helps him, nor is it the unreality of God’s existence. Rather that it is his personal choice of belief that God exists that helps him.

    I believe my team will win the league. This belief helps me through the relatively mundane life of doubts and fears of sporting diversions. At the end of the season I examine the evidence. Things usually went belly-up somewhere and the evidence shows me where.

    The only explanation believers can come up with as to why their God created ALS and all the other horrors of this world is that we are fallen people who live in a fallen world. In response I say to them that they should go into the children’s cancer ward and explain to the little ones why they will shortly die. The very little ones will not understand but the children around 8-12 years old can reason and they will see that explanation for what it is, utter bunkum. They have not lived long enough to commit foul acts of sin. Yet they are to be punished by the God.

    Rick makes many interesting arguments and the thought-police of ALS Today might let me return to them when more time allows.

    One final point for today: Rick says “If I am wrong about God, then upon my death, I return to oblivion none the wiser.”
    This appears to suggest that we have a choice; believe and live on through a promise given by God or if he does not exist then there is nothing but nothingness itself. Voluminous and increasing evidence exists that shows that consciousness continues after the physical death and that more and more scientists are coming round to believe that ‘death’ is trans-dimensional. Believers are however reluctant to accept the possibility that any form of continuation of consciousness can be possible without the existence or creation of it outside of a deity’s design. This is therefore a clear indication of religious intolerance in the face of clear evidence.

    • Rick Jobus says:

      Dave, the following was edited out:

      First, my remedial, non-scholarly scriptural takeaways:

      God created us to be in idyllic community with him and all mankind. But …
      We sin whenever we prioritize ourselves over God and our neighbors. And …
      The wages of sin is death (Romans 6:23), be it from ALS, another disease, homicide, natural disaster, accident, or old age, with the relative difference in the creature comfort enjoyed or pain suffered during one’s earthly existence being infinitesimally trivial compared to the finality of that sentence. However …
      God so loved the world (John 3:16) that he invites us to everlasting life. By either …
      Living in complete, agapic harmony with him and every human, a feat no one has yet to accomplish. Or …
      Faith.

      • Dave Reckonin says:

        ….and yet, Rick,and yet…. the little children are STILL condemned to die of cancer etc, before thy know what sin is or even what the God is supposedly offering…..I don’t think you and other believers can explain that…..

        If our earthly trials are ‘trivial’ then it hardly seems worth the time and trouble for the God to impose them.

        Believers cannot have it both ways. They cannot claim that we die in horrific ways because we are sinners yet also claim that earthly horrors are trivial compared to ‘everlasting ‘ life in the beyond.
        What becomes, Rick, of the decent person who lives his/her life without sin, does good deeds and loves their fellow human , but who does not practice faith?
        Will God punish them ?

          • Dave Reckonin says:

            Do you always answer the difficult, Believers’, questions with a question?

            It was you who raised the issue of faith, so should you not be prepared to answer some questions on it.

            I find that Believers have answers to every single question ……except, of course, the searching ones. Or those involving a rational, logical or reasoned response.

          • Rick Jobus says:

            Dave, given Jesus’s commandment to always love our neighbor as ourselves, tragically we all sin….even young cancer victims.

  2. WIsdomAndReasonMike says:

    Thank you Rick your taking the time to write this article. I pray and hope for a cure, for a better treatment. I wish you the best.

    • Dave Reckonin says:

      Well, Mike, I hope you are praying to Science, as the Big God Guy Upstairs (BGGU) has received millions of prayers for about 150 years and has not given a hoot.

      The BGGU has proved profoundly unreliable. He destroyed Sodom & Gommorrah but not Satan, or the Nazis.

      Praying to him would appear to be a waste of his time and yours.

  3. Dave Reckonin says:

    I see that none of the believers can yet explain why TOTALLY INNOCENT little children are condemned to die before, say, age 5 from Cancer- in the world of the believer where we are all to be regarded as sinners, and die from the Vengeance (which ‘Is His’) of the BGGU. (Big God Guy Upstairs)

    This is another example where the Believers twist themselves in permanent knots, having been dogmatic over why we are sinners but silent over the deaths of little children murdered by cancer at the BGGU’s whim.

    And Rick, that message you think you heard….I’d get that checked out by a professional if I were you.

  4. Dave Reckonin says:

    “The reaction from some folks is one of incredulity. It may be that this type of response is, in part, prompted by a Dummies-like view of God.”

    Sadly Rick moves to teh default position of so many of the Believers:

    “I Believe in God, and those who do not are Dummies.” Very very sad

  5. Dave Reckonin says:

    “Lastly, there is the “what’s in it for me?” Besides the debatable premise of salvation, not a day passes in which my faith doesn’t pay psychological dividends.”

    Your faith clearly makes you feel relatively better off by providing a belief system that pays off the moment after the physical death.

    What you cannot explain with your own ‘logic’ is why your God created ALS and why he punishes you with it but not Mr./Mrs X next door.

    In a world ruled by the Natural Sciences you would have to accept the logic of large numbers that you just happened to draw the short straw and Mr./Mrs X next door, didn’t.

    • Rick Jobus says:

      Dave, I don’t feel punished, but instead blessed. I know, you may be thinking, one more reason for me to seek professional help.

  6. Dave Reckonin says:

    “I came to realize that God is always by my side.”

    The All-Loving God may be by your side but he doesn’t do anything for you does he…..just like he doesn’t do anything for those little children in the Cancer Ward.

    In fact he creates a very clear impression that he does not exist, except in the imagination of those who desperately need him to.

    In fact the world you see and in which you claim he exists, Rick, is EXACTLY like the world we see before us where we can confidently deduce he does not exist.

  7. Dave Reckonin says:

    “But I will still have been blessed. For even in the face of ALS, my faith has afforded me serenity and joy as I traverse this vale of tears.”

    I think this sums it up very well. It is not the possible actual existence or possible actual non-existence of God which might provide comfort.

    It is the person’s belief that God exists that gives comfort. It is therefore a crutch to lean on heavily. It gives rise to the old expression: ‘If God did not exist we would have to invent Him.’

    If God actually did something that showed he existed then people would probably behave a bit more reasonably. The world would probably be a far better and finer place to live in and there would be fewer if any wars. God seems content for there to be huge doubts and as a result a minority destroy and kill without guilt or remorse. And then innocent are made to pay the price of God’s disappointment…so …..back we go to those little children in the Cancer Ward. No justice or mercy for them, then, BGGU ?

  8. Mary Smith says:

    Rick, thank you for a great article.

    I never have felt punished by God even through the suffering and pain that comes from many multiple family member deaths from cancer and now the disease of ALS.

    Instead, I hold on to God’s promises. They give our family “peace that passes all understanding.”

    Romans 8:18. “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

    Blessings to all…..

    • Dave Reckonin says:

      Mary, the problem with the ‘peace that passes all understanding” is that no-one can understand it.

      That makes it nonsense.

  9. Cindy says:

    For us who believe we realize that God does not will our suffering but He permits it. It serves His plan and His purpose. His thoughts are not our thoughts and His ways are know our ways. We only need to trust Him humbly and faithfully. Our faith is a gift. We who have it can fight the good fight.

    • Dave Reckonin says:

      “For us who believe we realize that God does not will our suffering but He permits it. It serves His plan and His purpose.”

      Cindy, if it really does ‘serve his plan and purpose’ and ‘he permits it,’ then he definitely DOES WILL IT.

      Your claim is a contradiction which makes no sense.

      ps Why exactly does he plan ALS and have a purpose for it ? Please advise.

  10. Dave Reckonin says:

    Rick says “…tragically we all sin….even young cancer victims.”

    Oh dear dear dear. Rick, that is totally unworthy of you.
    You surely cannot claim the innocent infants on the Cancer Ward are sinners….. can you ?
    What have they done to incur God’s wrath ?

  11. Dave Reckonin says:

    “Our faith is a gift. We who have it can fight the good fight.”
    I think you’ll find that Non-Believers put up an equally strong fight against their ALS and all the other vicissitudes of earthly life.

    ‘Fighting the Good Fight’ is certainly not an exclusive high-end country club which only allows membership to devout believers.

    • Dave Reckonin says:

      Mike, you say I attack people with ALS. |That is clearly a fatuous and snide response . Please be civil.
      If you care to spend just a few moments looking at what I said even you will realise I have simply asked some believers to consider the illogicality, unseasoned and irrational claims of religion and its dogma.

      Even you will see that I have kept to the points raised but not attacked anyone personally. I believe all posters here are good people but let’s stick to the claims,shall we? You, Mike, fall into the familiar trap of claiming an attack has been made when believers are simply asked to explain some tenets of faith.
      It’s an old and facile trick. Once cornered with their own nonsense believers will then attack the messenger/questioner.
      In this way they illuminate the fragility and weakness of their own arguments.
      Take for example Rick’s claim that even infant cancer patients are sinners. Do you agree with that ? If you do please explain why they are sinners at such a young innocent age.If you don’t think that claim is true then you must agree with me that if your God exists he is an horrendously cruel entity to make those infants suffer and die so grievously. If you claim say that it is Nature that inflicts these horrors then you tacitly accept that either Nature is more powerful than your God OR that God allows his trusty right-hand Hit
      Man, Nature to do his killing for him.

      As for your sneery ‘What else did God tell you to do today?’ (Please keep civilly to the facts) I can tell you that this ALS family has asked questions of the God just as all afflicted families have over the 150 years or so since ALS was identified. No answers were ever received by this enthusiastic and eager anticipatory audience. The only logical conclusion is that he either doesn’t care a jot or he does not exist.

      I am Dave…. not your ‘Dear Dave.’

      • Debra Kaufman says:

        Hi Dave: I’m with you on this. Although I believe there may possibly be some higher power in the universe, I don’t believe in a personal god that requires me to believe in her or who interferes in human lives. As a friend of mine used to say, if there’s a god, he/she’s a homicidal maniac.

        I hear your anger and grief at the unfairness of life (yes, getting ALS is most definitely getting the short straw). It would be so much easier and comforting if we did believe in a loving god who will greet us into paradise after death. For those of us without that belief, we have to find our own ways of coming to terms with the seeming indifference of the universe.

        Bottom line, every person has to find his or her own way and I believe there is no one RIGHT way to go through illness and death. I’m sending you loving thoughts and support on your journey to finding what works for you.

      • Charles says:

        Dave,
        When I was a teenager I spent the summer working for a man (Harvey) whom I loved dearly making commercial signage. One customer was essentially a nursing home for children with extreme physical and developmental disabilities. At one point while we were on site he turned to me and said, “This is why I can’t believe in God. Why would he allow this to happen to children like these?” I really took that to heart and felt ill equipped to answer. So as time went by I became determined to come up with some sort of sensible response, not that this answer would satisfy everyone, but at least it should be Biblically accurate.

        There are really several issues wrapped up in Harvey’s statement. One is simply the idea of suffering – Why would God let children suffer? Why would he let ANYONE suffer? Does he not care? Is he cruel or impotent? There is a notion of justification – Well, clearly some people don’t DESERVE to suffer (children in particular). But maybe some people “had it coming”. Others ask, “Is suffering a form of punishment?” For many it’s also a way of declaring, “If I were God, I wouldn’t allow this to happen!”, which ironically brings us right back to the part in the Christian Bible where it all started… Genesis 3 – Adam & Eve, whose desire was to “be like God”.

        The Bible goes on to explain that this “original sin” was then passed down from generation to generation, leaving no one (adult or child) untouched (Romans 5:12). I know that we would all prefer to think that we start out pure and only become sinners later, but that’s not how it is described for us in the Bible (keeping in mind that “sin” is not so much “breaking God’s rules” as it is living for ourselves and rejecting a relationship with him). So we all experience suffering in this life of one form or another, and at any age. For all we know it might be God’s way of saying, “So, if you’re so god-like and don’t need me, why not just show your stuff and fix all your own problems!” (Obviously we can’t, and while this motivates some people to seek God it just seems to build resentment in the hearts of others.) We’re born into sin and a broken world (as mentioned in a previous comment) where God has essentially allowed us to experience life apart from his grace with no demand from him to give him a second thought (if we so wish). But the PROMISE that he made (through Jesus) was that IF you trust him with your life, no matter what horrible circumstances you experience in this life, your guaranteed reward will be a perfect life in a recreated earth and an eternal, perfect relationship with him and each other. In fact, it is expected to be so amazing that we won’t give the suffering of this life a second thought. For me this doesn’t necessarily give meaning or purpose to my suffering, but gives me hope in that whatever suffering I am going through is temporary.

        Jesus said we don’t need to do anything to earn this gift of eternal life with him, just have faith (belief + trust) like a child (Mark 10:13-16). That’s pretty significant because we often forget that children are actually born into that faith, just as they are born into sin. Even children with cancer have that faith (and I personally know a few). It’s only as we grow older that we start to doubt. You might be surprised if you asked a child with cancer about Jesus.

        Does this make sense to our human minds? Does it answer all of our questions? Probably not. But when we doubt or resent God because of the existence of suffering, the alternative that we are condoning is the “enabling” God (like the enabling parent) who would spoil us despite our sin and whether or not we loved him in return. Maybe some would say, “Well, if only he PROVED his love for us first, then we WOULD believe in him.” But maybe that’s not the type of transactional relationship he wants with us. Although, if you asked him he would probably answer, “I’ve already done that. I allowed my son, Jesus, to die for you, even though you hated me!” (Romans 5:6-11)

        So, I don’t know if that helped at all, but I just wanted to offer a basic “textbook” understanding of where many Christians are coming from.

        By the way, Dave… even though we don’t know each other, I pray for you regularly – not for anything in particular, but just because you seem to carry a lot of hurt. You actually are loved more than you know.

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