Thursday, December 18, 2025 – Day 492

Thursday, December 18, 2025

Good morning, everyone. One week until Christmas. 🎄

When I was diagnosed with ALS, I did some basic research. I didn’t know much about the disease and had never known anyone who had it. I was aware of the Ice Bucket Challenge—that was about it. My first real exposure came from the movie The Pride of the Yankees, starring Gary Cooper. It’s worth watching if you want to understand Lou Gehrig—the baseball phenom and his unmatched character. Fair warning: it’s a tear-jerker by the end.

In that early research, I remember reading that sleep is greatly affected by ALS. At the time, I didn’t fully grasp what that meant. I do now. I’m learning how a bed…once a sanctuary…can slowly become something else entirely.

For most of my life, sleep came instantly. Five to fifteen seconds, tops. I swear I was already asleep by the time my head hit the pillow. Sharing a bedroom with my triplet brothers, Tim and Tom, probably trained me to shut out light and noise early. The same for them. I always felt lucky that I wasn’t someone who lay awake for hours at night—unlike Cindy.

Now bedtime is different.

I go to bed tethered to hoses and tubes, locked flat on my back. On a good night, I can cheat slightly to one side—if I can manage the movement and if the respirator mask stays put. If it shifts, the machine answers with a howling alarm that could wake the dead.

I still read before bed, but the five-second rule is long gone. I usually make it about thirty minutes before the words stop making sense and I surrender.

Two nights ago, I was half asleep and became aware of my breathing machine—the Astral 100—clicking with every inhale. My sleep app says I breathe 16 to 24 times per minute. The clicking slices through what should be perfect white noise. I tried to ignore it. Naturally, it only grew louder.

Normally, when you can’t sleep, you roll over and try again. ALS doesn’t allow that. Rolling requires my entire body working together just to move a few inches. Getting onto my side is a small victory—and that night, it wasn’t happening. I became tangled in the covers, unable to free myself. The panic came fast. My world felt smaller, tighter. A new mask wasn’t seated well on my face, adding to the sense that everything was wrong.

So there I was—click… click… click with every breath, trapped under blankets, unable to move, the mask locked onto my face now feeling like it was stealing air instead of giving it. And my mind went straight to the worst place.

This is how it ends.

Not peacefully. Not gently. Just fear, panic, and a final breath taken in terror.

That was not a place I could stay.

So at 2:20 a.m., I got out of bed. I chose being awake over feeling trapped. Awake felt like control.

Last night, bedtime carried the memory of the night before. The anxiety showed up early. But this time, I had a new tool. Jody—one of Cindy’s high school friends—recommended an app called Calm. I downloaded it and placed my phone on the pillow beside my head.

It took time. But slowly, the edge softened. And sometime after midnight, I slept like a baby.

Today, I only have a massage scheduled, which means I can sneak in a nap. Tonight, I’ll start the Calm app before I get settled in bed.

Because sleep used to be automatic.
Now it’s something I have to fight for.

Have a great Thursday, everyone. Love you guys! ❤️

Today’s photo: Nikki and Coco all dressed up for a Christmas party. The beauty and love of a mother and her daughter.