No one applauds when the train is on time.
That was the metaphor I invoked during the portion of my career spent in system implementation and post go-live support organizations within the pharmacy automation industry. I suggested that ensuring uptime was equivalent to maintaining a train schedule in terms of behind the scenes complexity, customer reliance, cascade effect of failure, and lack of fanfare when delivered.
In fact, system downtime was often spoken of in terms akin to the worst-case cause of a tardy train. Whether owing to a hardware failure, a firmware anomaly, a user interface glitch, or host network contention, it invariably would be characterized as a “crash.”
Such occurrences, just like a late commute, cause anxiety, distress, potential long-term damage, and the consideration of permanent alternatives. Thus, our mantra became keeping the trains on time.
All of us rely on uptime and expected performance in countless ways, from sources outside our control, for any day to be deemed even modestly successful. I suspect that most of us mimic the stereotypical traveler or generic pharmacy employee and take conformance to our needs for granted — ho-hum. I certainly did.
ALS changed that for me. Perhaps it’s the result of my ever-growing state of dependency, a near calamitous failure, or the potential ramifications of any future abnormality. Regardless, I find myself appreciating many more “on-time train” events that previously were on my pay-no-mind list. Virtually nothing is too nuanced, seemingly minuscule, or commonplace to be noticed and thankful for.
As Rod Stewart sang: “Remember, every picture tells a story, don’t it?”
Take, for example, my lift chair. It was originally purchased to be an aide to get me on my feet during the early, still self-ambulatory period of my ALS journey. Now it is my residence-in-a-residence for 95% of any normally unfolding day. As such, it serves as a dining room, entertainment center, library, gymnasium, receiving area, bedroom, and office.
The internal mechanisms, affording a multitude of positioning alternatives, are elemental to that morphing phenomena. I have a unique posture and alignment for eating, watching television, reading, what exercise I still can perform, interacting with others, sleeping, and composing articles like the one you are reading. The chair is also mission critical in my safe transfer to the area where I spend the remaining 5% of a routine day: the bathroom. It is now one of my most trusted “trains.”
In the case of the prospective rail traveler, a departure delay may not be the fault of the managing transit authority. If someone mistakenly reads the weekday schedule as applying to a weekend, they’re apt to be disappointed. Likewise, user error is a possibility with my chair. I found out, literally the hard way, that my chair has a low tolerance for alcohol.
One evening, as I was finishing a pre-slumber night cap, a portion of the drink happened to spill onto the brains of the chair — its handheld controller. In a manner similar to the reaction a human has upon first ingesting an adult beverage, the backlit buttons immediately began erratically blinking. Curious, but content, I proceeded to doze off.
Some time later, my now drunk chair decided, on its own, to stretch to the maximum lift position. The collateral damage was me being unceremoniously deposited on a cold tile floor. Talk about a system crash.
While my body’s reaction was one of pain, my brain experienced a variation of Stockholm syndrome. The self-inflicted aberration cast a spotlight on the otherwise unblemished history of flawless performance. My disdain for the chair’s necessary intrusion into my life was replaced with admiration for its utilitarian versatility. In short, we bonded. From that moment forward, I marveled at all it did for me.
That episode had a spillover effect on my regard for all the other “trains” whose proper operation grants me safe passage from one day to the next. Caregivers see to it that I am healthy, hydrated, nourished, and in proper hygiene. Utility companies provide electricity and water. Delivery services assure essential supplies are always on hand. Devices allow me to get from point A to point B, communicate, and stay informed. Not a day goes by in which I don’t thank God for the functioning union of all of them.
Recently, the interaction of my chair and transfer lift inadvertently demonstrated that my legs remain weight bearing. For a brief interlude I was upright. Fittingly, I gave a standing ovation to the whole host of “on-time trains” integral to my existence.
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.
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