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.

Then, in a moment of sheer stupidity, I decided that this would be a great time to go to the bathroom. The wheelchair was stuck under a pile of luggage in the back of the car, so I told Rob to just pick me up and carry me. As soon as he did, I realized that it was not my best idea. Scarlett was still screaming, Rob had me in his arms, which looked and felt ridiculous, and once he deposited me in the bathroom, he had to go back out to be with her, which meant that he opened the door, leaving me momentarily exposed to half of the gas pumps.

Trust me, I know that any story involving toilets is basically an overshare. A very large part of me feels like deleting everything I’ve just written. It was awkward enough in that five-minute period, without sharing the details on the Internet. But this is just another glamorous part of life with ALS. Privacy becomes something you remember enjoying.

Rob had to open the bathroom door no less than three times to check on me and to deal with Scarlett, and by the time we got back in the car, he was sweating, I was feeling a severe loss of dignity, and that’s right about when Scarlett started screaming, “I’M TOO COLD!!”

We somehow calmed her down and made our way to the hotel. But when we arrived, it was clear that the only thing ADA about our room was the grab bar in the bathroom. The bedroom was so small that you couldn’t even get a wheelchair into it and the rest of the space didn’t allow room to turn the chair around. I’m not proud of this, but I started to cry.

Scarlett was concerned. I try so hard not to lose control around her, but it was too much. I’m no longer able to be flexible, to make the best of any situation. Our life has become so complicated. She wanted to know why I was sad, and I told her that I wished things weren’t so hard. Then she asked me if I was going to be in a wheelchair forever. I really do stay optimistic about the chances of a cure for ALS in my lifetime, but in that moment, I just said, “I think so.” She climbed into my lap and hugged me, and there we sat.

And then it was time to move on. Rob called around the area and found another hotel that had actual ADA rooms. I decided bathroom trips and temper tantrums don’t mix and will not be a part of future vacations. I’m still learning how to deal with all of the challenges of ALS, and I know there will be other difficult moments along the way.

Sometimes you’re too hot. Sometimes you’re too cold. Sometimes you’re waving at a strange woman from your spot on a gas station toilet. It’s not always awesome. The hug helped, though.

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