The Absurdity of a Progressively Debilitating Terminal Illness

The Absurdity of a Progressively Debilitating Terminal Illness
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 “Oh, I used to be disgusted and now I try to be amused.”

Those lyrics from the Elvis Costello song “(The Angels Wanna Wear My) Red Shoes” are an apt description of the journey that my perspective has trekked since my ALS diagnosis was delivered.

The initial pronouncement was maddeningly surreal. The imagery of what lay ahead of me was mortifyingly disgusting. That revulsion quickly became anger as the predicted symptoms began to manifest themselves.

The rage within me only intensified with each stage of my body’s devolution. From limping unaided to stumbling with assistive devices, to struggling in transferring myself to a wheelchair, to becoming fully immobile, my irritation redoubled. As my speech made its way from occasional slurring to labored, guttural utterances, my rancor boiled.

But by far the greatest accelerant of my fury were the unanswerable questions. Why ALS? Why me? Why now? The vacuum created by seemingly having no meaning or purpose was absurdly overwhelming.

In fact, there was little separating me from characters introduced by writers of the Theatre of the Absurd (TOTA) drama genre. Unwittingly, I had come to exemplify the French writer Albert Camus’ take on life as expressed in his essay, “The Myth of Sisyphus.” Camus draws on the Greek fable of a man eternally condemned to roll a rock up a mountain only to have it roll back down, ad infinitum. Camus argues that this is a metaphor for the human condition in a senseless world. Our best option is to accept the inherent absurdity and bear it as best we can. 

Indirectly, Camus suggests that anger is not the correct response. After reflection and some research, l came to agree with him. 

The health downsides of anger are numerous. Obvious ones like depression, high blood pressure, and increased risk of heart attack readily come to mind. One previously unknown to me really caught my attention. Anger causes the hormone cortisol to be produced. “Elevated cortisol causes neurons to accept too much calcium through their membrane. A calcium overload can make cells fire too frequently and die,” noted the National Institute for the Clinical Application of Behavioral Medicine. The modus operandi of ALS is advancement through cell death. No need to aid and abet the enemy.

Then there is the popular notion that anger like mine, given the circumstances, is justifiable. While that may be true societally speaking, it has no basis biblically. In his study on human anger, Jeffrey Gibbs describes finding nothing in the Bible to support “righteous anger.” Among his conclusions are that “anger quickly becomes sin, and we simply must think in those terms,” and while “human emotions, including anger, are not intrinsically sinful,” it “is not a justification to remain angry.

So, what does one do with an accumulation of unhealthy and misplaced emotion? In my case, convert as much of it as possible to laughter.

The TOTA playwrights often provided comedic interludes. Absurd happenings can be humorous, even hilarious. However, the overriding theme is“often interpreted as a response to the challenges of living in a 20th-century world that seems devoid of meaning [and] is frequently far more nightmarish than funny.”

To that I turn to the comedy team of Laurel and Hardy. Absurdist theater icon Samuel Beckett’s play “Waiting for Godot contains portions that “closely mirror scenes Laurel and Hardy created on screen, ” the Independent points out. Beckett’s “absurd tragi-comic characters have so much of Stan and Ollie about them.” After escaping any of the all too frequent ALS perils, I borrow from their catchphrase (Ollie to Stanley): “Well, here’s another nice mess you’ve gotten me into.” Only my brain is Hardy, and my feeble body is Laurel. Thus, anger quickly dissipates into mental laughter.

Similarly, when my attempts at verbal expression invariably fail, I try to replace a scowl of frustration with a calm smile. Remembering the comic misadventures in communicating that resulted from entering the “cone of silence,” as depicted in the 1960s sitcom “Get Smart,” always serves to placate me. The dialogue handicaps that fictional bit of gadgetry presented have nothing on my Neanderthal-like banter.

Somewhere between disgust and amusement, I rediscovered meaning and purpose to life. The key is the word itself. “Life” is to be lived. It is a gift. Like any gift, it is up to the recipient as to how it will be used. I choose to live life as fully as possible, acknowledging that what is possible for me is incessantly eroding.

In the aforementioned song, Costello infers that angels are offering immortality in exchange for red footwear. Oh, the absurdity! I believe that everlasting life is conveyed through faith in God. That, for me, is the meaning of life. That is my purpose.

***

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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6 comments

  1. Kim G. says:

    Thanks for sharing, good information – “Elevated cortisol causes neurons to accept too much calcium through their membrane. A calcium overload can make cells fire too frequently and die,”

  2. Allen says:

    Dear Rick Jobus

    Liked your Notes from the ALS Front.
    I’m new here, having been diagnosed with ALS about a month ago, with onset of symptoms probably four months earlier, so far limited to slurred speech and drippy saliva. Waiting and watching for the other shoe to drop, so to speak. The progression you described was quite specific: from limping unaided to stumbling with assistive devices to struggling into wheelchair to fully immobile. Could you please give me some idea of the timeline, how long from each phase to the next. Thanks.

    • Rick Jobus says:

      My progression atypically slow….2 years unaided….4 more years until a wheelchair….4 years after that immobile

  3. John unger says:

    Laughter for us: Rick as long as we have a Cross pen and a Fosters “oil can” we’ll be ok! Best trip ever…Sincerely, JU

    • Rick Jobus says:

      I had not thought of our “McGuyver”-like shared brilliance for a long time. We should have thought to capture our ingenuity on high speed video. Hope you’re doing great!

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