Life Amid a Torrent of Fire and Rain

“Won’t you look down upon me, Jesus?/ You gotta help me make a stand./ You just got to see me through another day./ My body is achin’ and my time is at hand./ I won’t make it any other way.”

ALS imposes trials akin to what James Taylor depicts in his song “Fire and Rain.” Wondering how to accomplish the daily trek can leave one at wit’s end. More vexing yet are the occasions when the “Why even bother?” creeps in.

Recently, someone extremely close to me was kind enough to open a package of mine. It contained a new supplement, pyrroloquinoline quinone, to be added to my anti-ALS cocktail. This puzzled my companion.

Perhaps projecting herself onto my situation, she posed an existential question. In the face of an ever-diminished capacity, and without the faintest hint of evidence to support the possibility of course alteration, what is my goal? Do I naively think I can prolong my life? 

It’s a great query, for which I had no immediate answer. That realization caused me to reflect on my place in an ALS-bounded, shrinking world.

Expected reactions to the diagnosis of a terminal condition run a gamut. These feelings, whatever the mix, may manifest concurrently or in waves. Ultimately, they may shape a person’s viewpoint toward days-in-life versus life-in-days.

The paper “Attitudes of the Critically Ill Toward Prolonging Life,” published in the journal The Gerontologist, sheds light on the desire among the incurable dying to postpone death. As reported, the importance of unfinished business near the end of life and concerns with the fear of death play a large role in the desire to live longer. No surprise there. 

But, counterintuitively, social network contact dampens that emphasis. The authors speculate that those who are in contact with family members can still have unfinished business, but the anxiety associated with the lack of closure is less troubling. 

Another curious finding had to do with education. Those with more education have less desire to prolong life. Whatever the reason, the rationality in dealing with the length, as opposed to the quality, of life in extreme health conditions changes with more schooling.     

Another study in the journal BMC Palliative Care explores how patients come to terms with facing death. The terminally ill who try to acknowledge this uncontrollable fate by reconciling themselves to a limited life, an unsatisfactory body, and distressing circumstances as part of a cognitive “I have to accept it” seem more at peace.

“Thus, they felt thankful for being alive and around people, and they were finding positive meaning even in such a serious situation,” the study’s authors wrote.

Where does all that wisdom cast me? I certainly have experienced a wide array of emotions since receiving my diagnosis. I don’t fear death, although the actual event frightens me a bit. I dispensed with my last major piece of unfinished business nearly three years ago when my stepson, following my stepdaughter, graduated college. I have a supportive and engaged social network. I am reasonably well educated. I have largely accepted my circumstance.

All of that suggests I likely wouldn’t preoccupy myself with extending my existence beyond its current state. As I mulled over the implications of why I continue to tinker with my dietary supplements, I realized it’s part of a larger context.

I don’t seek to prolong my life, only to live it. I am consciously dying while I am intentionally living. Every day is a gift. The best token of appreciation for any gift is its joyful use. Knowing I am dying reminds me of the importance of being my best self. 

The duality of life with death encourages me to spend the time I have left fully in each moment. I focus on being intentional about striving to savor every aspect of what I am experiencing while experiencing it. The freedom that accompanies an uncluttered mind is intoxicating. 

My watchfulness regarding non-food nutrition is but a minor subset in the quest to be my best in the present. On one hand, it indicates I’m scratching the itch of wanting to continue to learn. On the other hand, it may maximize my vitality — as opposed to tangibly affecting ALS — and possibly help ward off secondary illness. Thus, a better me.

Bottom line, I am exercising a constitutional prerogative: the pursuit of happiness. Unexpectedly, there are times now when I am happier than I have ever been. Maybe that’s because I have let go of the past and the past has let go of me. It simply isn’t relevant anymore. Likewise, the future can’t hold me hostage. I live more centered in the present moment than I ever have, and I am just plain happy to be here, alive, right now.

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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, and are intended to spark discussion about issues pertaining to ALS.