Requiem for a Heavyweight Trio of Souls
“And so castles made of sand
Fall into the sea eventually.”
From time to time, given my predilection for quoting songs in my columns, I’m asked whether a song triggers content, or if it’s subject matter in search of lyrics. The answer is, circumstantially, either.
On a normal day, the radio will be on for eight hours or more. The station’s playlist may feature a selection that jump-starts a theme in my brain. Or, maybe a movie soundtrack will grease the creative wheels, as happened recently when I wrote about hope.
Other times, writing about a topic will cause me to remember a relevant verse. Such was the case last week, as my mind was focused on holidays.
Hendrix’s “Castles Made of Sand” is the rare song that fits both categories. Shortly after I began writing for ALS News Today, Jimi’s gem played. It brought to mind a number of ALS-promulgated setbacks, where part of my “castle” was swept into the sea.
I could have written about any of those erosions, but chose not to. Instead, I opted to wait until a truly profound circumstance summoned the lyrics. The recent news of the deaths of three people I have deep affection for provided such an impetus.
None of the three had ALS. I may have been their only personal intersection with the disease. Each relationship began at work, was forged via the pursuit of common objectives, and grew beyond the temporary fabric of place of employment. Most importantly, each, in their own way, contributed mightily to my life with ALS.
Jeff Castille and I go back the longest. In 1995, we were part of a team put together to introduce a new workflow management product to outpatient pharmacies. As with any infant product, there were abundant growing pains. In the midst of figurative blood and literal sweat and tears, Jeff shone bright. Unbeknownst to him, and despite being nearly 10 years my junior, he mentored me in overcoming several of my Achilles’ heel traits.
Marich “Marie” Anderson was introduced to me as a customer call center wizard. She did not disappoint. In her, I observed a leader equally gifted in astute technology command and reassuringly benevolent human touch. Marie’s abiding faith in God aided her in both managing the day-to-day grind and weathering — and often thriving in — many strenuous challenges. By example, she taught me many back-against-the-wall coping skills.
John Burns was, in my experience, a rare breed. He was a kind and gentle being, but also a fiercely determined warrior. His inviting and soothing demeanor was matched by a classically calming baritone voice. Fittingly, his vocal cords produced the guidance dispensed by the auto attendant on the company’s customer call-in line. However, it was his upbeat, courage-under-fire response to a Parkinson’s diagnosis that most moved me.
To this day, all three remind me that the majesty and expanse of one’s castle matters little. The true measure is how I maintain it behaviorally, especially during the dark times of ALS siege.
Do I view everyone as divine creations rather than flawed creatures? Do I love accordingly? Do I serve when needed? Is my pain opaque? Am I a source of comfort? Those true-or-false questions — courtesy of, in part, my three friends — constitute a portion of my daily litmus test. I want to be the lamp that Jesus speaks of.
Hendrix’s song speaks of three tortured people. The first two tales end badly. The third is redeemed thusly:
“So she decided to die
She drew her wheelchair to the edge of the shore
And to her legs she smiled, ‘You won’t hurt me no more’
But then a sight she’d never seen made her jump and say
‘Look, a golden winged ship is passing my way’
And it really didn’t have to stop
It just kept on going.”
In that moment, the “golden winged ship” caused her misery and despair — her “castles made of sand” — to “fall into the sea.”
Hendrix could have been writing about my struggles with ALS, including the wheelchair and cursed legs. But my departed friends are forever part of a similarly adorned rescue vessel. May I pay it forward and be of likewise utility to someone else.
The Bible speaks to the separation of the impermanent, earthly body from the eternal soul: “We are confident, I say, and would prefer to be away from the body and at home with the Lord.” In Hendrix’s refrain, I often think of the castle as the body, and the sand it’s composed of as the soul.
The castle disappears. The sand lives on.
Rest in peace, and thank you, my dear, fallen comrades.
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.