Navigating the Chutes and Ladders of ALS: Happy Labor Day
During my early childhood, I often played Chutes and Ladders. For those who are unfamiliar with the board game or have a foggy memory, the board is made up of 100 numbered squares. Beginning in the lower-left corner, players move a certain number of spaces, determined by a spinner. Upon reaching the end of a row, they move one row up and travel in the opposite direction. This serpentine commute culminates at square 100, in the upper left corner of the board. If players land at the foot of a ladder, they must climb it, forgoing all the spots in between. Conversely, if players find themselves at the top of a chute, they slide down. The object of the game is to be the first to arrive at square 100.
ALS is akin to Chutes and Ladders, but in reverse. We begin at the top, and with the luck of our spinner, and various encounters with a ladder or a chute, we move downward. Our goal is to delay arriving at the endpoint for as long as possible. Note: after you sink below square 81, there is no ladder to bring you back to the top.
One other difference for the ALS version is that no two “game boards” are alike. Each of us is confronted by a different assortment of chutes, and aided by a varying array of ladders. Thankfully, in my case, the template includes several “spiritual” ladders, which my talisman found after some particularly onerous chute descents.
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It is Labor Day as I write this column. The holiday was signed into law on June 28, 1894, by President Grover Cleveland. The original intent was to celebrate the strength and esprit de corps of the trade and labor organizations. Although ALS inevitably will remove us from the workforce, we are acutely aware of the concept of “labor.” This is particularly relevant in the context of the word’s definition as an “expenditure of physical or mental effort, especially when difficult or compulsory.”
Navigating our Chutes and Ladders world requires labor nearly 100 percent of the time. Picking oneself up after a precarious plunge down a chute calls for focused rigor. Grasping the bottom rung of a ladder — not to mention upward propulsion — requires strenuous exertion. Even “normal” level movement can be harrowingly draining. Safe passage is elusive and fleeting, and its pursuit is exhausting.
The word “labor” is incorporated into many noteworthy phrases. On this Labor Day, I will invoke several of them in a prayer for all those caught in an ALS Chutes and Ladders struggle. “May your labor often be one of love. May your labor bear abundant fruit. If your labor is hard, may it also be rehabilitative. May any labor pain you experience be life-generating.”
“Long may you run / Long may you run / Although these changes / Have come / With your chrome heart shining / In the sun / Long may you run.” — Neil Young
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