Living simply with ALS means taking it one absurdity at a time
No task is mindless, and each one comes with a trade-off
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I am always looking for ways to simplify my life and help my days go by a bit more smoothly. But when you live with ALS, like I do, there is always one extra thing to do, plan, or think about before you can even begin an activity.
It’s a constant exercise in the absurd. However, rather than getting frustrated and shaking my fist in the air, I’ve learned to look for the irony in every situation. For example, I recently spent hours crocheting a bowl made of yarn to hold … well, my yarn.
The backstory to this project is simple. I often knit while watching TV in the evening. It relaxes me, keeps my fingers moving, and gives me something wearable at the end. However, my ball of yarn occasionally rolls off my lap and onto the floor, requiring my husband to go on a search-and-rescue mission. When I’m not knitting, the unfinished project sits on the side table next to my chair. Admittedly, the lumpy clump of yarn and needles looks less like a hobby and more like debris left behind after the tide goes out. So I decided to use my crochet skills to create a proper container, a yarn bowl.
While sitting and crocheting, my mind wandered to an old joke:
“A woman goes to the store to buy a plastic wastebasket. The cashier puts the wastebasket into a plastic shopping bag. At home, the woman takes the wastebasket out of the bag — and throws the plastic bag into the new wastebasket.”
Looking for the funny
My life with ALS is full of similar paradoxes. Some are genuinely funny. Take our recent trip through a fast-food drive-thru. My husband has zero patience for scratchy, malfunctioning speakers and fast-talking order-takers. Flustered, he turned to me and asked, “What did they say?” Out of habit, I replied with what I thought I heard. But because ALS has affected my voice, my version was so slurred and garbled that we both just dissolved into giddy laughter. There we were, two people who couldn’t understand the speaker, failing to understand each other, just trying to order a burger.
In other situations, the irony is less amusing; it’s just the reality of the condition. For someone without ALS, tossing a plastic bag into a trash can is a mindless, two-second task. For me or my caregiver, no task is mindless.
Walking across the room requires my absolute, undivided attention. I have to clear a path for my rollator, scan my surroundings, and constantly monitor my feet, legs, and posture. Walking while having a conversation? Completely impossible.
The same irony applies to medical “conveniences.” When my clinic arranged for me to get ankle-foot orthoses, everyone assured me they were a “simple solution” for my weak feet. While they do help me walk, the trade-off is a logistical circus. I had to buy special shoes, knee-high socks, and specialized toe covers. Putting them on takes a full half-hour — valuable energy and time I could be spending elsewhere.
A matter of trade-offs
ALS will always try to hand me extra plastic bags. Because of that, fighting for simplicity and minimizing unnecessary steps is how I protect my quality of life.
Which brings me back to my yarn bowl. I am fully aware of the glaring contradiction here. I wanted to simplify my life and save time, so I spent days meticulously crafting a complicated solution to a problem that a $2 plastic Tupperware container from the dollar store could have solved instantly. But by creating it by hand, I got to be creative, exercise my fingers, and make something beautiful. It’s a ridiculous trade-off, but it’s one I’m entirely willing to make. After all, if you’re going to live with a paradox, it might as well be a cozy one.
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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