This is the first entry in a new journal documenting daily life with Charcot-Marie-Tooth disease, and staying positive in the face of frustration.
June 16, 2026
7:47 AM
I emptied the disher and loaded it with dirty dishes from the sink. On hands and knees picking up the toppled can of detergent pods.
Earlier, I unboxed the detergent pods, and on hands and knees, picked up the pods that scattered across the floor when the container dropped the first time. I also assembled a new standing dust pan with a long handle.
Easy tasks for anyone else, but with hardly any use of my hands, frustrating, at best, for me.
I’m at the computer now, exhausted.
12:10 PM
All I wanted was a cup of coffee.
The new coffee maker has two sides: a traditional ten-cup brewer on one side and a K-cup machine on the other. I filled the reservoir, inserted a K-cup, and pressed the button.
Ten minutes later, there was barely a splash of coffee in the cup and coffee grounds everywhere.
I cleaned it up.
Second attempt.
More sputtering. More coffee grounds. This time I discovered the lid wasn’t closed properly. Coffee grounds everywhere again.
I cleaned it up.
Third time was the charm. At last, I had a cup of coffee.
Then I went to the refrigerator for milk.
The gallon was full. I could barely lift it. Milk splashed onto the floor.
I poured some into the coffee mug, spilling more milk on the counter. Put the container back in the refrigerator door.
As I turned towards the refrigerator, I lost my balance and spilled even more milk across the kitchen floor.
I shoved it back where it belonged.
Then, with wet hands, I grabbed the refrigerator handle to close the door. My grip slipped. For a moment, I nearly lost my balance again.
I didn’t fall.
But I almost did.
So I’m recording it here.
Thirty minutes to make a cup of coffee.
Three messes to clean up.
One near fall.
Now I’m back at the computer, grateful for dictation software and trying to catch my breath.
The question running through my mind is simple:
Can’t a guy just get himself a cup of coffee?
A Day in the Life
June 16, 2026
12:51 PM
Michelle just left to visit a friend in the hospital.
She’s on spring break this week, but like most days, she’ll find somewhere to go before coming home. That leaves me with the afternoon to myself.
Years ago, I might have viewed that differently.
Today, I don’t.
After spending so much time revisiting the summer of 1973 for my memoir, I’ve rediscovered something about myself. I’ve always been fairly content in my own company.
Not because loneliness is pleasant.
It isn’t.
But because I’ve learned how to build a life inside whatever circumstances I find myself in.
So this afternoon I’ll head outside.
The weather is nearly perfect. Sunny, warm, and just cool enough to be comfortable. I’m working on a new craft project, a pour painting over a cut tree-log slab.
One of the things I’ve learned from living with Charcot-Marie-Tooth disease is that some hobbies adapt better than others. Fine motor control can be frustrating. Large movements are easier.
So I gravitate toward gardening, outdoor projects, painting, and things that allow me to keep creating without demanding precision from hands that no longer cooperate the way they once did.
Life gets smaller in some ways.
You adapt.
You find new ways to make things.
You find new ways to enjoy an afternoon.
And then you go outside and get on with it.A Day in the Life
12:51 PM
Michelle just left to visit a friend in the hospital.
She’s on spring break this week, but like most days, she’ll find somewhere to go before coming home. That leaves me with the afternoon to myself.
Years ago, I might have viewed that differently.
Today, I don’t.
After spending so much time revisiting the summer of 1973 for my memoir, I’ve rediscovered something about myself. I’ve always been fairly content in my own company.
Not because loneliness is pleasant.
It isn’t.
But because I’ve learned how to build a life inside whatever circumstances I find myself in.
So this afternoon I’ll head outside.
The weather is nearly perfect. Sunny, warm, and just cool enough to be comfortable. I’m working on a new craft project, a pour painting over a cut tree-log slab.
One of the things I’ve learned from living with Charcot-Marie-Tooth disease is that some hobbies adapt better than others. Fine motor control can be frustrating. Large movements are easier.
So I gravitate toward gardening, outdoor projects, painting, and things that allow me to keep creating without demanding precision from hands that no longer cooperate the way they once did.
Life gets smaller in some ways.
You adapt.
You find new ways to make things.
You find new ways to enjoy an afternoon.
And then you go outside and get on with it.
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