An ALS Christmas Carol

I wonder if a stranger and I exchanged life lessons recently, or if I just learned something after hurting her feelings. I may never know.

A cold, drizzly, early-December Saturday morning, the fam and I are going to pick up a Christmas tree. I am in a shitty mood. In addition to my usual stack of discomforts there are a few extra piled on: no parking near the tree lot; broken, bumpy sidewalks make my hand keep slipping off the wheelchair’s joystick so I’m driving all hurky-jerky; I’m overdressed and overheated, except for my hands and feet, which are freezing; my hood keeps falling over my eyes and I have to keep gyrating my head around so I can see.

As I near the tree lot I hear a woman’s voice approaching. Excuse me, do you have ALS?

Ayup, I affirm without slowing down. Wonderful.

My partner passed away from ALS, she informs me hopefully as we come abreast. I still have not looked out from under my hood. Does she want me to stop under this wet tree and have a chat about her dead partner? Maybe compare notes on how it all goes down? That might be fun.

Great! I shoot back as I motor past her, my irritability kicking up a notch. I mean, WTF. It’s not like we both have cocker spaniels. I hear her voice recede behind me somewhat pathetically, OK then, have a nice day.

I felt like a bit of a dick, but still… WTF.

A week or so later I stopped by my local pub, because I had some business with a pint (and the proprietor too, coincidentally). We talked a bit and then he went to serve a young bloke a few seats  down the bar. As I sipped my fine glass of Alt I overheard them talking about running. Pretty soon I notice the young guy is addressing me:

I run marathons to raise money for ALS. My dad died of it last year.

Now really – WTF!?

Look buddy, I said, I know you have been through an intense and painful loss. But I’m just a guy trying to have a beer here, OK?

I was trying to be jokey, but my wheezing, slurred speech kind of ruined the comedic nuance. The guy looked deflated. I felt bad, and then a weird thing happened. All the sudden I found myself in his seat, looking down the bar at my dead dad, happy to see him again.


I haven’t seen myself in a mirror in ages, mainly due to wheelchair logistics. The chair and the neck brace, the lopsided mouth, the bony shoulders sticking out, the arms hanging down like a couple of dead squid; I’m not conscious of these things beyond their being the source of varying degrees of daily frustration. That’s fine. I don’t need to look.

But for some people seeing me — I now forcefully realized — it brings up a lot of emotional stuff. Seeing me brings back the memories and the grief; it momentarily resurrects a loved one. I’ve never lost someone I was truly close to. I don’t know what that’s like. But in that moment at the bar through this guy’s eyes, I knew. It knocked the wind out of me.

Now, that’s a heavy trip that I didn’t ask for and don’t want. But in that moment at the bar I realized, you don’t get to choose or refuse the impact you have on other people. You can either graciously accept it, or you can be a dick about it.

So I apologized for being a dick about it. We had a laugh, and went on to discuss other important things, like beer.

Merry Christmas.

6 thoughts on “An ALS Christmas Carol

  1. Life lessons are the absolute worst. I mean they are the whole point of being alive but seriously I wish they would stop butting into my perfectly vapid existence. Love you Mark!

    Liked by 2 people

  2. “…you don’t get to choose or refuse the impact you have on other people. You can either graciously accept it, or you can be a dick about it.” Thanks for the deepness. I had a (maybe) similar realization a couple months back when in the course of facilitating some racial equity work around microaggressions I totally microaggressed a participant in the training. Mansplaining & whitesplaining, the whole thing. I didn’t want to be that guy in that moment, but I was, so did my best to graciously accept that I was going to be the dick AND the dick that apologizes and is contrite instead of defensive and more dickish… it still sucked, but it was what it was for all concerned.


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