A Tribute to My ALS Village People

A Tribute to My ALS Village People

“I get by with a little help from my friends.”

Or, in my case, A LOT.

Two weeks ago, I discussed the ALS village. Last week, I wrote that I’ve survived 12 years since ALS darkened my doorstep. The latter is not possible without the former. However, my characterization of the “village” was largely infrastructural in nature. I would be woefully remiss were I not to salute the profoundly sustaining contribution to my existence from the inhabitants of said village.

Studies show that the richer one’s social network is, the longer the individual lives and the less physical pain he or she experiences. As psychologist Janice Kiecolt-Glaser notes, “A good friendship is a wonderful antidepressant.” In my case, there is no doubt that family, friends, and caregivers have added days to my life and life to my days.

My wife, stepchildren, and my wife’s parents were introduced to me at a point in which I ambulated with a rollator and was propped up by two ostentatious ankle-foot orthoses. I was hardly the poster child for an ideal husband, stepdad, or son-in-law. They welcomed me with open arms anyway. Since then, they have witnessed many inglorious moments and suffered through some downright nasty manifestations of my disease state. Yet, they continually see only me, the man, as they intrepidly look beyond ALS’s effect on my function and its limiting impact on their lives.

Shortly after learning of my diagnosis, my sister was insistent that I relocate to be proximal to her and her supporting family, whereupon she became a sounding board, errand runner, and my first caregiver. My brother has made numerous 8,200-mile sojourns to check on my status. Each visit provided me a hugely restorative, virtual booster shot in the arm. My aunt and uncle have an uncanny, intuitive knack of checking in just when I most need contact. My cousin undertook a solo, length-of-the-country motorcycle trek to see me.

My friends’ abundant generosity of spirit, affection, and time has moved me, at times, to tears. With constituents from junior high, high school, college, and all of my jobs, they have conspicuously populated my post-ALS life — some after many years of no communication. One scheduled a family vacation especially to spend time with me. Another drove 600 miles round trip to have dinner. Many have interrupted personal holidays or punctuated business trips to drop by and remind me that I’m thought of. Over 100 have sponsored me in various fundraising events aimed at disease abatement and patient support. Countless others reach out periodically to offer good cheer. Scores have shared with me that I am included in their prayers.

Professional caregivers have applied their skills for maximum benefit, in a buoyant manner. All have left an indelible, uplifting impact on me. Some have become fast friends.

The latest “villager” to grace my life has been my pastor. He visits for several hours every two weeks. Fittingly, a fair portion of our time together is spent with him emphasizing the sacred imperative of loving our fellow humans. A patient, kind, non-envious, humble, selfless, respectful, even-tempered, forgiving, truthful, protecting, trusting, and hopeful kind of love. My fellow “townsfolk,” that is what you shower me with. I can never express the magnitude of my gratitude.

Every overture, ranging from the effortless gesture to the grandest of displays, is treasured beyond measure. Each produces a cascade effect, leaving an effervescent elixir of life to be drawn from long after the interaction has been experienced. In aggregate, they comprise a fundamental element of my resilient ability to “keep on keeping on.”

Ultimately, I struggle with how to appropriately put a meaningful perspective on this phenomenon. So, I will borrow from my favorite source:

“Love never fails.” –1 Corinthians 13:8

To my fellow “village” citizenry, know that your love is reciprocated in full.

***

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6 comments

  1. Dave Reckonin says:

    Wonderful support systems from human beings…humbling and laudable.

    “The latest “villager” to grace my life has been my pastor. He visits for several hours every two weeks.”

    Interesting. How does the pastor explain ALS in terms of God & Son Inc. ?

    I am reliably informed that ‘God Loves Us.’

    Clearly, God shows how much he loves us by giving some of us ALS.
    Isn’t he amazing in a sort of ‘crazy, counter-intuitive, ridiculous, unloving way’ ?

    • Mary says:

      God does love us. So much that he gave his life for us on the cross as the ultimate sacrifice for our sins. Now that’s love! If he suffered so much, why should we be any different?

      • Dave Reckonin says:

        Because he died for our sins not our illnesses. My point is proved by the fact that many many decent people get ALS. Why should they suffer so horrifically with ALS? Is this the way God shows his love ?
        Your hypothesis is counter-intuitive and thus flawed. It describes what you WANT to believe rather than what is logical, reasoned and rational.

        Are you suggesting we are dying from ALS because of our sins?

  2. Dave Reckonin says:

    “If he suffered so much, why should we be any different?”

    Because some people get ALS and most don’t. God plays favourites and visits the horrendous torture of ALS on some people and lets others live on until, say, 100 (three score years and 40…!)
    So God discriminates…a real nasty piece of work.
    He didn’t help his own son on the cross so why should we expect him to help those with ALS?

    Oh well, he did warn us “Vengeance is mine sayeth the Lord”
    With ALS it sure is… even when it’s visited upon decent people.

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