Fighting the Predictable Unpredictability of Rare Disease

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by Rick Jobus |

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“Will you still need me, will you still feed me,

When I’m sixty-four”

Paul McCartney wrote the song “When I’m Sixty-Four” four decades before reaching that age himself. McCartney admitted that the number was chosen arbitrarily. He later quipped during an interview that 65 would have been a more prudent selection: “The rhyme would have been easy.”

I first heard the lyrics at 9 years old. The age of 64 was a long way off. The oldest people that I knew — two of my grandparents — were 67, and in my eyes they were ancient. It was impossible to project myself that far into the future. There were so many bridges to cross.

Of course, with each passing milestone, the ability to envision my existence at three score plus four years sharpened. Nothing was guaranteed — two of McCartney’s bandmates didn’t reach that longevity threshold — but with near certainty I could answer the questions posed in the song’s refrain. Absolutely I’d be needed. And I wouldn’t fret over who fed me, I’d take care of that effortless task.

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Eleven days shy of my 49th birthday, I was delivered the news that I had ALS. Suddenly, any thought of reaching age 64 was summarily dismissed. Given the disease’s randomness, unpredictability, and potential to advance aggressively, I wondered if a 50th birthday party would be forthcoming.

Indeed, I did make the half-century mark. ALS allowed me that. But ever since its onslaught commenced, it has rendered me increasingly unnecessary, and has gradually eroded my ability to self-nourish.

Against long odds, several weeks ago I turned 64. McCartney draws a minimalist lyrical portrait of life at that age: “I could be handy, mending a fuse,” “Sunday mornings go for a ride,” “Doing the garden, digging the weeds.” But all ceased being viable options for me to pursue long ago. The only time I’ve been out of the house at “quarter to three” in the morning in my ALS era was when I was hospitalized.

The reminder of my inability to engage in the simplest aspects of life hurt. But the answers to McCartney’s questions stung considerably more. I am completely unnecessary. Without copious assistance, I’d starve.

Toward the end of the classic, McCartney signs off in melodramatic fashion: “Yours sincerely, wasting away.” In the days leading up to my birthday, and certainly for a good portion of the day itself, that’s precisely how I felt.

My body has had a difficult 2022 thus far. On the heels of a protracted pressure sore outbreak, I developed a nasty urinary tract infection. The combination left me in pain from all points south of my waistline, while leaving a repulsive oleo of blood and urine in the wake of every transfer.

I am blessed to have a talented medical team that makes house calls. However, the confluence of so many folks tending to my intersecting maladies was both comforting and disconcerting. The expert attention is enormously appreciated, but the sidebar sympathetic comments regarding my condition were unpleasantly brainwashing.

I have been in denial about the hopelessness of my circumstance for its duration. Similarly, I have not inordinately fretted over my ever-growing associated helplessness at many defining junctures. The barrage of commentary, confirming the futility of my situation, burst my bubble with a sonic boom.

Add to that the obvious ALS fatigue that my family is forced to endure, and my existence is not merely unnecessary, it is deleterious. I’ve begun to wonder, when did enthusiastic desire for my inclusion become measured tolerance? When did affection toward me become a chore? ALS is a fiendish serial killer, but the collateral damage it inflicts on a victim’s loved ones can be hideously scandalous.

That intersection of physical and mental stress deposited me in a malaise I typically tend to avoid. And it was all my fault. I wasn’t prepared.

Rare diseases are notorious for their elusiveness; certainly in terms of a cure, but often also pertaining to origin and trajectory. They are the poster child for unsolvable conundrums and unpredictability.

A musical metaphor is appropriate. Rare Earth was a Michigan-based band that was said to have “defied categorisation.” In the absence of answers, might rare earth be the potting soil for rare disease?

If so, one of Rare Earth’s signature hits, “Get Ready,” is apt: “Well fee fi, fo fo fum/ Look out, baby, ’cause here I come.” I had neglected to remain ready for whatever ALS chose to throw my way.

Without doubt, I have been enormously lucky in terms of ALS’ treatment of me. I momentarily lost sight of my lone, unfailing, comfort-inducing defense mechanism: In my rare disease adventure, Jesus is always by my side.


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

Debra Kaufman avatar

Debra Kaufman

Hi Rick: Thanks for such a profound and well written article on your personal experience. I acknowledge all your feelings but please allow me to make a slight reframe. You are helpless and totally dependent on others. But I don't think you are unnecessary except in the sense that all human beings are essentially "unnecessary" and any trace of our existence is extinguished in a few decades. Your situation may cause fatigue among your family and other caregivers but your existence brings them joy and connection as well. Your articles are illuminating and tell an important story that I think many readers want to hear. You help give words to what my cousin is going through and for that I am grateful. I was just thinking yesterday that perhaps you ought to compile all your columns and make them available on Amazon. Last, you can still pray and send thoughts of lovingkindness to those around you and everyone in the world. I know you are a Christian so I know you believe in the power of that practice. These are not trivial things -- they are necessary things, and you are doing them.

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Jan Jeffreys avatar

Jan Jeffreys

Hi Chi-town friend, I rarely open ALS emails, but when I do, I always look for your rhythmic stories and I read and reread them several times! Rick you are an exceptionally gifted writer always with many layers of thought joined by musical lyrics and your heart.

I am avoiding the facts, not accepting what is, know denial is my fault, am not prepared and purposefully ignoring that I have ALS. At this point I do not want to be "prepared". So I must have a major procrastination gene! 'Not sure I even want to deal with it! We pALS have been given the gift of progression which is something that the folks that contracted COVID did not have the luxury of... here today and gone...

Your existence is sooooo necessary for me (and I am sure for many others), because your words puts everything in perspective. Your gift keeps giving all the way from Florida to California... and to everyone in between the waters.

Thank you for sharing your gifts...I welcome them.
Rick, you have talent:
probably because God is with you always!
Never give up!!!

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Luke J Kelly avatar

Luke J Kelly

Rick, the previous two writers have commented beautifully to the degree that your talent is a comfort to all that read your articles and as an ALS patient myself, believe me that comfort is necessary and appreciated. Your recent ambitions to start a novel and conquer the latest keyboard technology of your computer are just a few of the things that show how much more you have to give. When I first read your article I was very concerned but, when I reread it I saw that by the end you had pulled yourself out of the dumps by acknowledging that Jesus has always been by your side. You are part of His plan which makes you very necessary.
Hang in there Rick, I am a little older than you but, if you can reach back to the Beatles surely you can reach back To America; I think there has to be something in a "Horse with No Name" or "Sister Golden Hair" that would make a good column. I'm looking forward to your next submission. Thanks for all you do.

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