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.

My deal with the faeries

At some point I made a deal with the faeries. I must have. I met my beautiful, angelic wife after many years of looking for her; a while later our amazing, perfect daughter arrived; then right after that I was diagnosed with a terminal illness.

Future you

As an unwavering, hard-core Zen practitioner, you know that this inscrutable moment contains the entirety of reality. All previous times and all future times are unreal in practical terms. From this you deduce that the past is over and done with, that the future is yet unborn, and you resolve to focus all of your energy on being here now.

Not only that, you have also heard that every seven years every molecule in your body is replaced. It means that the you from seven years ago, or seven years from now is literally an entirely different physical being.

Be here now

This is something I have to remind myself, to keep everything in perspective when I’m getting really frustrated and angry, trying to do something like pull my pants up and it’s not working right.

I’m looking at a video of Nisi and me playing. I reach over with my right hand and mess up her hair and she laughs her head off. That video was from a year ago and now I can’t use my right hand at all hardly.

It makes me remember that time. I was losing the ability to use a computer mouse. My fingers would twitch, randomly clicking and right-clicking and it would drive me crazy, just like pulling my pants up drives me crazy now. But in the video I can still mess up my daughter’s hair, and I didn’t stop to appreciate that as much as I should have.

I need to remember this, and appreciate that I can still stand up and mostly pull my pants up. I can open doors and flip on lights. I can open a beer by myself. But in a year who knows? I need to remember that this moment is all that matters. I need to cherish the things that I have, and not hold on to the things that I’m losing.

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The Wheelchair Treatment

If you are in a wheelchair, you will know what I mean when I say that I often get the wheelchair treatment. This involves entirely unnecessary apologies and friendliness from strangers when I’m out and about.

The 5 Most Awesome Things About Being Diagnosed With ALS

Being informed that you’ve got a terminal illness is no doddle in the daisies. In fact, it pretty much sucks. First of all, you just can’t believe that it could happen to you — YOU of all people! Then there are the massive changes to your lifestyle that happen, all kinds of intense emotions, and so on. And, oh god — the relatives and friends’ reactions! Please just hand me a gun (or a mallet, for you non-US citizens), and let me end it now.

Ruminations

Deep thoughts, things to ponder, self-help tips, and earth-shattering insights. All that and more awaits you here.

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