Don’t Let Awareness Get Lost on the Already Aware

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by Rick Jobus |

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“What’s the buzz? Tell me what’s a-happening,

Why should you want to know?

Don’t you mind about the future?

Don’t you try to think ahead?

Save tomorrow for tomorrow,

Think about today instead.”

— Andrew Lloyd Webber and Tim Rice, “What’s the Buzz,” from the rock opera “Jesus Christ Superstar

One of the primary goals during May, which, of course, is ALS Awareness Month, is to create a buzz. That heightened appreciation of the tragedy that is ALS might, in turn, facilitate a future end to the suffering it causes.

For the past few years, in May, I’ve devoted much of this column to that awareness mission. I’ve come at the goal in a variety of ways.

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I’ve attempted a Facebook penetration campaign. I’ve chronicled the daily hardship of life within the ALS bubble. I have opined that, in the history of monstrous figures — from both fact and fiction — ALS has no peer. I’ve offered up an “elevator speech” template.

This year, like no other, I’ve lived the awareness. For the first 16 days of the month, I resided in a hospital, constantly aware of ALS. The experience had me selfishly and solely focused on the trials of my precarious present day.

The setting, the attendants, and the noises left no respite from ALS’ incessant, hostile presence. Adding insult to injury, my trusted companion — my eye-gaze gateway to communication and all things internet — decided to go AWOL.

Those assigned to my care wore their ALS awareness on their sleeves. In each hospital room is a dry-erase board available to alert the rotating staff of important aspects of the care protocol. Although I’d been admitted for aspiration pneumonia, ALS was — both in size and marquee location — the most prominent tidbit regarding me on my board.

This meant that everyone sent to my rescue — as one would expect medical professionals to do — had a grim acknowledgment that I could return for a subsequent stay, and that respiratory insufficiency could claim my life; I may, and it might.

The nonstop sympathy over my overriding circumstance left no time for anything but awareness. That phenomenon was amply demonstrated when I was transferred late at night to a less intensive nursing unit, and knowledge of ALS didn’t make it to the board. The caregivers were more upbeat, operating under the assumption that my inability to speak and move my legs was the result of a stroke or an accident.

Compounding the physical trauma foisted upon me were some emotional and intellectual concerns. My family is crushing beneath the weight of ALS fatigue. I’m guilty of dragging my feet to this awareness plateau. Difficult changes in how and where I’ll exist are warranted.

Even my go-to escape — sleep — was interrupted by breathing and pressure sore treatments. Thus, ALS was fully apparent during the brief, nocturnal interludes. The overwhelming intrusion that my heightened personal ALS awareness had leaped to caused me to feel uniquely disadvantaged for a while.

Several Sundays back, one of our pastor’s embedded themes in a sermon was how apt we are to “pray small” when preoccupied with the randomness of daily life. Peace in the Middle East may be a prayer-time afterthought when confronted with a broken water heater and a flooded utility room.

That point has been emphasized for me this May. In a hospital — literally surrounded by suffering, misery, and death — in the early days of my stay, I was mostly oblivious to anyone’s needs save my own.

I can’t pinpoint the exact lightbulb-brightening moment; I only know that embarrassment suddenly struck, and along with it, a greater awareness arrived.

ALS deserves its own awareness month. But so do a host of diseases and afflicted people. In fact, every condition that renders a majority loss of function does. In a perfect world, every day of every month would be such an occasion. In that idealistic utopia, suffering would be identified, responded to, and minimized.

Instead, awareness is being fed mostly to folks already aware. If you know me, you have at least a superficial understanding regarding what ALS is and does. Someone who does not have a personal vested interest would have to stumble upon a piece about ALS and be sufficiently moved to learn more, and then do something.

Therein lies the inherent dilemma with any cause du jour awareness campaign. If the population of individuals in the know can somehow be expanded, how is knowledge turned into action? Plus, as my recent hospitalization validated, the list of causes screaming for attention is seemingly endless.

To return to a futuristic mindset, I have one request for the non-ALS sufferers reading this: Please educate members of your social network who are unfamiliar with the ravages of this disease. In the meantime, I’ll enlarge my understanding of other debilitating conditions.

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.


Andrew Darke avatar

Andrew Darke

Hey Rick, nice article - and read in a moment of relative despair. Thanks


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