In Pursuit of the Perfect Omelet

Rick Jobus avatar

by Rick Jobus |

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“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?

***

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.

Comments

philip panzica avatar

philip panzica

I also have ALS and going down hill everyday.It is nice to hear the words spoken in the way that you can expire others to carry on! GOD BLESS you for all you do.

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Rick Jobus avatar

Rick Jobus

Philip, stay strong.....I'm praying for you

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Ted Szczesny avatar

Ted Szczesny

I also suffer from this terrible disease and find your essay to be right on target. Please continue your fine writing, I, along with other Als suffering patients relate with written truths.

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Debbie Chalk avatar

Debbie Chalk

My heart goes out to all the ALS victims and encourage all of you to keep praying and fighting for a cure. It has been 3, almost 4 years ago since my dear husband, who was 64 years old at that time, lost his life to ALS. He couldn't even talk in the end. He used to be so strong, but his muscles kept deteriorating. Hope kept us going. God will keep us strong inside. God can enrich our lives.

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Debra Kaufman avatar

Debra Kaufman

The line in your bio -- that you hope to dispel the myth that technical folk and digestible prose aren’t mutually exclusive - made me laugh. I'm a professional writer who works almost exclusively with engineers who, as you note, don't do their best work in the English language. To continue the baseball metaphor, you knock it out of the park. I always enjoy your writing, please keep at it. As to the negligible returns of your efforts -- my advice (take it or leave it) is to just keep doing the right thing. It's the only thing you are responsible for. All the best to you.

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Cindy Italiano avatar

Cindy Italiano

Love your music connections. This brown eyed ALS patient believes it’s gonna take a miracle.

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Harold Olson avatar

Harold Olson

Really appreciate your music songs and artists references in your writing. I spend part of every late night watching "old school" music videos on Youtube. Takes me back to better times. I don't have any hope for a successful treatment in the time I have left, so the time I spend with diversions like music keeps me from obsessing about the ongoing loss of my body Thanks Rick for your contributions..

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Trevor Bower avatar

Trevor Bower

Rick, thank you for your post on the desire to create the perfect omlette. So many of your thoughts echo mine. So many dreams we all seem to have are suddenly out of our of reach. We, all ALS sufferers, can't accept the seemingly endless wait for the cure, the injection of a formula that reverses the indescribable hollowing of out of our lives. What the heck they created a vaccine for Covid-19 in two years. ALS is so slow, a little more decline every day. Sometimes I just want to scream. Like when I went to the doctor for another evaluation and he tells you to make an appointment to see me next month. You go to the front desk and request and appoint for next month. The clerk scans the computer for opening and looks up at you and says the earliest appointment I can get you is September, Five months. I restrained myself from venting and saying "what year is that?" Back to reality, We find we can do little less everyday. Always looking for options. Can there be, is there, crossferilization between research trials on MS, Parkinsons and Cancer? I recently read an article about a development of an "exoskeleton' to help MS patients walk. Couldn't that help ALS patients too? Grasping at straws...

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Kathy H avatar

Kathy H

Rick - As frustrating as it is to not reach a goal... such as for fundraising... it is unknowable what impact you had with the 150 people who read your message. Or how your information mixed with other messages each person encounters and the combined impact it will have at a later date. And then there are the folks those 150 people talked to about it, though not in the way you measured. Impossible to know the actual impact over time.

Sometimes we do the work of sowing the seeds and only see the mounds of dirt left behind. Sometimes we get the joy of reaping the growth from seeds that others have planted. Thank you for your efforts to get the word out. I am confident that you contributed more than you realize or have a way to measure.

On a tangent... I aspire to be able to contribute to the fight as you do fourteen years in. I am less than a year in from diagnosis and your abilities after so many years gives me hope to be productive. Thank you. Keep on chugging. (Kjh)

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Rick Jobus avatar

Rick Jobus

Kathy, thank you for that perspective -- just what I needed.

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