Twisting the Night Away on the Titanic

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by Rick Jobus |

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“And you know that you’re over the hill,

When your mind makes a promise that your body can’t fill.”

This refrain from the Little Feat song “Old Folks Boogie” could have been written with ALS sufferers in mind. It partly portrays our truncated existence. It humorously depicts making the most of diminished capability. We are forced to do the same, on our best days even interjecting some levity.

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One striking difference between Little Feat’s boogie and the ALS dance macabre is the manner in which each is begun. Aging is typically a gentle, gradual process. It is perhaps not looked forward to, but it is rarely feared. The presence of ALS, by contrast, is announced with a terrifying jolt. Our challenge is to transition from terrorism victim to Stockholm syndrome survivor.

In my case, I have been subconsciously preparing for the eventuality nearly as long as I can remember. Of all the demons, real or imagined, whose specter has troubled me, ALS loomed the largest.

Growing up, from age 4 until 14, my immediate family lived outside Philadelphia. The rest of my clan remained in the Midwest, mostly around Chicago. That meant, among other things, that a summer sojourn to the Windy City was an annual occurrence. These adventures — save the 14 hours spent in a Rambler Ambassador — always generated foundational memories. The year 1966 packed more than most, with a few of the haunting variety.

Our visit that year coincided with serial killer Richard Speck’s murder spree on the South Side of Chicago. Although the adults spoke in hushed tones and television viewing was chaperoned, fear and anxiety ruled the day. It was the first time I was exposed to genuine evil.

Owing to both sets of grandparents residing in Chicago proper, we split our foursome up. Consequently, my dad and I would trek over to meet up with my mom and brother each day. Our round trip would take us past a huge facility, which to an 8-year-old resembled an impenetrable fortress. With images of Speck’s carnage percolating in my brain, I asked my father if it was a prison. “No, it’s the Chicago Tuberculosis Sanitarium” was his reply. Thus, I was introduced to the notion of invisible killers who leap from person to person.

Several nights later, while back at our temporary home base, my dad and I watched “The Pride of the Yankees,” a biopic about my father’s favorite baseball player, Lou Gehrig. I ate the movie up, but the ending confused me. I received a greatly simplified explanation of Gehrig and the fiendish mystery that was ALS — and continues to be 56 years later.

Of the three newfound monsters, ALS frightened me the most and it wasn’t even close. I had nightmares about contracting it for four consecutive nights following the Gehrig film’s viewing. In the ensuing years, and up until my own diagnosis, whenever I’d learn that a public figure had the disease, a chill would run down my spine.

My own diagnosis paralyzed me. It finally took an appreciation of the ironic symmetry to snap me out of lethargy. My emergence was a catalyst for getting on with my ALS life as best I could.

I have experienced many of the highlights mentioned in the Little Feat ballad. I have traveled in a battalion of “wheelchairs … locked arm in arm.” I live for “one more chance to spin one more yarn.” My immobility means a “thought’s as good as a thrill.” My mantra could be “no time is your own.” I’ve tried in vain to “get a rise from an atrophied muscle,” with the result being “the nerves in your thigh just quivers and fizzles.”

Along the way, I’ve learned to tolerate each destination while enjoying the journey. My colleague at ALS News Today, Dagmar Munn, both implores and instructs in the delicate art of “Living Well With ALS.” The parent company of this website, BioNews, advances a similar advocacy platform across over 50 different rare diseases. The synthesis of the combined input is the idea of capitalizing on every opportunity and remembering that every new moment is an opportunity.

Recently, I read the book “Last Ride of the Iron Horse” about Gehrig’s final full season of major league baseball. The ravages of ALS had begun to be apparent, and his performance dropped off precipitously. Yet, in the face of alarming physical decline, Gehrig made adjustments and was a contributing element on a championship team. Immediately after his diagnosis and retirement from baseball, he accepted an appointment as New York City’s parole commissioner.

Just as he was the epitome of grace and resilience during his “luckiest man” speech, Gehrig was also a public example of life after ALS. He pioneered the ALS boogie.

In honor of him, and countless others, who would care to dance?

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.


Linda Nolan avatar

Linda Nolan

Thanks for sharing this, Rick!

Mary Kay Polashek avatar

Mary Kay Polashek

Thank you for sharing. Lou Gehrig is an inspiration to all of us who live with ALS. I am 62 and was diagnosed with Bulbar ALS in August 2021. I kept being a high school orchestra director despite not being able to speak, eat or drink. My students were wonderful. A friend came morning and afternoon to give me water and my husband came to give me lunch. I conducted my last concert on January 31st. I gave it my all but it was time to stop. ALS is terrible but I'm not going to let it dominate my life just yet.

Jan Jeffreys avatar

Jan Jeffreys

Congrats Rick! Another enjoyable article!!! I am "learning to tolerate" my changing self and need to put more emphasis to "enjoy the journey." Definitely, I will look up LG's "Luckiest Man" speech. Perhaps, It will be an inspiration for my speech; "Lucky Lady".

Mary Kay. I was also diagnosed with Bulbar ALS back in January 2021. My biggest challenge now is eating (all my meals are made in my blender) and drinking water, only a few ounces in a day. I am so dehydrated! Is this also an issue for you, if so, how are you dealing with it?


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