Tag Archives: traveling with ALS

Just Another Day

Coffee. Coffee. CO-ffee, co-FFEE, coffeecoffeecoffeecoffeecoffee, COFFEE! COOOOOOFFFFFFEEEEEE.

That’s a song I wrote today. The tune doesn’t matter.

I haven’t had a cup of coffee since January, but this weekend there was a delicious cold-brewed jar of the stuff in a gift bag from my niece and…nephew-in-law?…waiting for us at the hotel. I tried some of it and it was good. Like, really good.

Now, I’m back home and I have that funny feeling that sometimes accompanies the end of a vacation. I’m happy to be back, but when Rob and Scarlett left this morning, I had a moment of sadness. We had a great trip together, and it turns out I’m just not sick of them yet. So I made coffee. And then I wrote my song. You have to do a kind of jazz hands thing at the end.

This blog is supposed to tell the story of what it’s like to live with ALS, but my inclination is often to gloss over some of the harder times in order to keep things light. Read More>

Road Trip

Our drive to Lake Tahoe last week started off well enough. We had snacks. Traffic was decent. Scarlett even fell asleep, and, once we wrestled her out of the bike helmet she had insisted on wearing, she seemed fairly comfortable. Until she woke up an hour later, screaming, “I’M TOO HOT!”

The AC was on and we were doing 80 on the freeway—Rob considers speed limits a suggestion—so her request that we roll the windows down “RIGHT NOW!” was denied. Plus it was 100 degrees outside. We explained to her that she might feel better if she took her shoes off, and we aimed several vents in her direction. She was not remotely pacified, and she handled it like a frustrated four-year-old, kicking and throwing things. Very unsafe behavior for highway driving. By the time we were able to pull off the road and into a gas station, Rob was furious. He pulled her out of the car and set her down on the ground, where she took off all of her clothes, and continued throwing a fit. Read More>