“Everybody’s talkin’ at me,
Can’t hear a word they’re sayin’,
Only the echoes of my mind.”
ALS has rendered me a minimalist creature of habit. My weekday routine includes the intersection of paranoid caution, practiced routine, and hunger — known to most as lunch. During this necessary refueling stage, I often take in various network news feeds. Since the pandemic has forced my wife to work from home, and so as not to distract her, I enjoy these telecasts with muted volume, following them via closed captioning.
Watching while not hearing the talking heads pontificate leaves me feeling a bit off-kilter. Without vocal inflection, the degree of praise, vitriol, or sarcasm is difficult to gauge. Adding to the messaging challenge, the written words on the screen lag behind the actual utterance. Thus facial expression affirmation is out of sync.
That comprehension shrinkage pales in comparison to the commercials soliciting philanthropic support for “cause du jour,” sans volume. Those spots, which overpopulate the midday advertising slots, rely heavily on engendering a personal connection. The hope is that a tug on the heartstrings will loosen the purse strings. Bereft of emphatic clues, the pitch is lost in translation.
Even in ideal conditions — comfortable volume, warm lighting, ambient temperature, sympathetic audience — gaining awareness and converting it into action is a steep climb. Multiplying the difficulty is the preponderance of competitive noble causes. The demand for relief from devastation is impossibly vast. The supply of attention is conspicuously meager. In the “for as little as the price of a cup of coffee a day” niche, seemingly everybody’s talking at you.
It’s currently ALS Awareness Month. For 31 days, amid a saturated landscape, how do we secure attention? Given the plethora of causes screaming, “Hey, look at me!” how do we forestall a retreat of the event into the echoes of everyone’s minds?
In the past, I’ve made my share of attempts. I’ve embarked on a personal campaign to periodically remind folks of the horror that is ALS. I’ve suggested that an author of fiction create a protagonist battling ALS. Of course, I also write this column.
Although well-intended, I fear my efforts have not moved the awareness needle one iota. Folks who pay attention to my social media posts are, by definition, friends. Through me, they are already aware of ALS. Likewise, anyone reading ALS News Today is already painfully familiar. To achieve impact, I need to reach outside my inner circle.
The theory of six degrees of separation contends that because we are all linked by chains of acquaintance, you are just six introductions away from any other person on the planet. A degree of separation is a measure of social distance between people. You are one degree away from everyone you know, two degrees away from everyone they know, and so on.
A popular extrapolation of the theory is the parlor game Six Degrees of Kevin Bacon. In that exercise, participants link other actors to Kevin Bacon in six films or fewer. Clearly, I need to bring people closer to the bacon.
GoFundMe suggests that two of the five tips for effective fundraising — and all fundraising begins with awareness — involve mobilizing one’s friends and their contacts. Arming this expanded constituency with a carefully constructed message they can disseminate on your behalf can extend the reach “exponentially.”
Prompted by this guidance, I have a strategy for ALS awareness in 2021.
During May, I am launching an awareness campaign on Facebook. It will be a blend of grim ALS facts along with snippets of my personal struggle to ensure it feels personal and human. I will include a link to a donation site at The ALS Therapy Development Institute. I’ll also request that anyone reading the blurb share it on their own page.
I have 752 Facebook friends. If only 10% comply, that means 75 additional awareness pitches. The average Facebook user has 338 friends on the site. If my recycled message is digested by just 5% of those two degrees of separation from me, that means an awareness bonanza of 1,425 individuals.
The stove is lit. The bacon’s frying. I hope the aroma arouses a hunger to do something.
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.