In Pursuit of the Perfect Omelet

“No one knows what it’s like,

“To be the bad man,

“To be the sad man,

“Behind blue eyes.”

– The Who

Last week, it was time for the annual agency performance audit of my aides. Actually, owing to COVID-19, the one for 2020 hadn’t taken place. Consequently, the nurse performing the task hadn’t seen me in two years.

As ALS pauses for nothing, my body’s erosion continued during the interval between the checkpoints. Folks who interact with me frequently often fail to discern the decline between encounters. For purposes of sanity preservation, I try not to ruminate over comparisons of my abilities between now and whenever.

With that as context, I was taken aback by the auditor’s surprise at my difficulty in providing input regarding quality of care. When she last saw me, I was semi-productive in labored vocalization. These days, my intelligibility is next to nil. Eventually, she got what she needed out of me. She concluded by saying, “They must be doing all right by you. You have happy eyes.”

Irrespective of the appearance of my eyes, the nurse’s observation did not find me in a happy place. To be fair, her unintentional affirmation of my decline had little to do with my already sour demeanor. The two main constituents of my witch’s brew of funkadelia had been simmering all day long.

The first was a byproduct of self-assessment regarding my contribution to ALS Awareness Month. During May, I attempted to infectiously educate people about ALS. My strategy was to contact my friends, remind them of the harsh reality of the disease, and request that they pass along the message. By the measures available to gauge traction, the impact was negligible.

About 150 people read my words. Twenty-five shared them with others. About $2,000 was raised. Whether fatigue from the pandemic, more mass shootings, or ransomware proliferation contributed didn’t matter. I wasn’t able to craft a compelling series of communications. And that left me bummed.

From that starting point, later that morning, I stumbled upon an op-ed in The Wall Street Journal. The author, a surviving spouse of an ALS victim, speaks of the “archaic regulatory pathway” that her husband died waiting on. I, too, have been critical of the involuntary manslaughter aspect of that process, both from a pharma company perspective and from a U.S. Food and Drug Administration perspective.

I reached out to drug developers, lawmakers, and advocacy associations, imploring them to accelerate and enlarge patient access to promising ALS therapies. With the exception of the rare form letter reply, I was ignored entirely. The combination of that memory and my awareness debacle left me feeling alone, defeated, and powerless. Clearly my “happy eyes” were, in that moment, lyin’ eyes.

Typically, my blues traveler episodes are brief. Be it self-propulsion or prompted by external stimulus, extraction is usually conducted in short order. That day was no exception. All it took was immersion into a portion of my comfortable and nearly daily routine.

Having once been a competitive and recreational athlete, I often seek diversion, courtesy of the sporting world. A recap of scores, standings, and noteworthy performances serves as one distraction from the hardship of ALS. Toss in an element of human interest, and the tonic is sweeter still.

Such was the case when several hours after the nurse’s departure, I caught a televised vignette about Major League Baseball’s inaugural Lou Gehrig Day. Unlike back in 2008 when MLB held a day of tribute to Gehrig, this will be a permanent event every June 2, and it will include a pronounced ALS emphasis.

As Phil Green, an ALS patient and member of the Lou Gehrig Day Committee stated, “We believe the impact will be significant, not only on the funds raised for research but also in shifting public policy, legislations that impacts ALS.”

But what was an even larger trigger in the recovery of my mood was the backstory. Lou Gehrig Day in the MLB was the brainchild of the late singer-songwriter Bryan Wayne Galentine. Two years after his ALS diagnosis, he added the establishment of a formal tie between MLB and the ALS community to his bucket list.

After some fits and starts, Galentine’s tenacity and resiliency finally collided with opportunity. His concept reached the desk of a senior MLB team executive whose grandfather had succumbed to ALS. Weeks later, on Oct. 20, 2020, MLB committed.

Galentine died two days later.

One time, post-diagnosis, Galentine was asked to explain the shells of two dozen eggs on the kitchen countertop. “I was going to perfect my omelet. You know, I’ve always wanted to do that.” That became his metaphor for unfinished business.

Suddenly recharged, my disposition again matched my eyes. The day was a reminder to emulate the apostle Paul. I want to fight the good fight, finish the race, and keep the faith. Who knows how many omelets I might make?

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