“They’re gonna put me in the movies,
They’re gonna make a big star out of me, …
And all I gotta do is act naturally.”
Two weeks ago, I referenced several catchphrases from the television show “Get Smart.” In response, a reader left a comment suggesting one of the program’s go-to lines was the perfect dark-humor accompaniment to the diagnosis delivery.
Anticipating the communication of worst-case news, Maxwell Smart would preempt it by saying, “Don’t tell me [fill-in-the-blank],” followed by, “I asked you not to tell me that.”
The offering of “Doctor, don’t tell me I have ALS.” “I’m sorry, you have ALS.” “I asked you not to tell me that!” caused a lightbulb to pop on in my head. My entire ALS journey may be summarized through the application of elements from both small- and big-screen scripts.
It began with a realization that my existence was changing. Much like Dorothy from “The Wizard of Oz,” something was different: “Toto, I have a feeling we’re not in Kansas anymore.” When it escalated to a constant concern — think “Lost in Space“ and “Danger, Will Robinson” — the time had come for medical attention.
With the clarity of Margo Channing in “All About Eve,” ultimately, I resigned myself to: “Fasten your seatbelts. It’s going to be a bumpy night.”
In the aftermath of the diagnosis, my doctor continued speaking. I only heard Arthur Edens from “Michael Clayton”: “I am Shiva, the god of death.”
On the drive home and for some time after, I was in “the middle ground between light and shadow, between science and superstition, … [which] lies between the pit of man’s fears and the summit of his knowledge. This is the dimension of imagination. It is an area which we call the Twilight Zone.“
Eventually, I emerged. When I did, Howard Beale‘s emotional response on “Network” ensued: “I’m as mad as hell, and I’m not going to take this anymore!” I decided to emulate Dory from “Finding Nemo” and “just keep swimming.”
But how? Seemingly, the scientific community has an equivalent command of ALS as future Sen. John Blutarsky of “Animal House” fame had of history: “Was it over when the Germans bombed Pearl Harbor?” It was so hopeless that the temptation to believe that Tripper’s observation from “Meatballs” loomed large: “… [E]ven if God in heaven above comes down and points his hand at our side of the field; even if every man, woman and child held hands together and prayed for us to win, it just wouldn’t matter.”
With no proven plan forthcoming, I reasoned, as had Tony Soprano, that, “More is lost by indecision than wrong decision.” That consideration prompted some alternative thinking, as Henry Davidson sanctioned in “The Fourth Angel”: “Officially, our hands are tied. Nothing’s going to happen. But if you want to cook the stew, then stir the pot yourself.”
So, I have. Along the way, I’ve been aided and abetted by friends, and personifying Sean Maguire’s description in “Good Will Hunting”: “Some people can’t believe in themselves until someone else believes in them first.” That and my newfound reliance “on the kindness of strangers” — an experience contrary to Blanche Dubois‘ in “A Streetcar Named Desire” — continually prop me up. I’ve defied long odds.
Case in point: Over five years ago, a social worker at the ALS clinic — someone immersed in every aspect of the disease — predicted I’d be dead in less than a year. It was reminiscent of the following exchange in “Monty Python and the Holy Grail“:
Old Man: I’m not dead!
Dead Collector: ‘Ere, he says he’s not dead.
Guy: Yes he is.
Old Man: I’m not.
Dead Collector: He isn’t.
Guy: Well, he will be soon, he’s very ill.
Old Man: I’m getting better.
Guy: No you’re not, you’ll be stone dead in a moment.
Andy Dufresne stated in “The Shawshank Redemption” that we have a choice: “Get busy living, or get busy dying.” I opt for the former. Sure, ALS may truncate my longevity, but as Indiana Jones reminds us: “It’s not the years, honey. It’s the mileage.”
ALS can be relentless. It offers no opportunity to vacation and forget. As “Father” Roberts said in “Monk”: “That’s like asking the Titanic if it remembers the iceberg.”
Each morning I awaken hopeful that something will transpire, making my dream of quoting John McClane relative to ALS — “Yippee-ki-yay, m*****f****r!” — nearer a reality.
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.
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