Rob and I had an interesting interaction on Friday morning. It was a total ALS moment, where the frustration overtakes everything else and you realize that what is happening is real, and that you’re out there, traveling with no road map. It’s the definition of ALS: Good luck, keep driving.

Rob had returned from a trip to New York the night before. Our time without him had gone fine, thanks to help from my sister and my two assistants. On Friday morning, we were trying to get back into our routine. I couldn’t help but think about how simple it must have been for Rob that week. Getting himself—and only himself—ready to walk out the door. The luxury.

Some time ago, I decided to wear what is basically a uniform of maxi dresses, and I had recently purchased some new ones. So that morning, we tried on a new dress. Yep, I use the word “we” with zero irony here. It’s a group effort. Rob pulled the dress over my head. He adjusted the straps, kicked my footrest up and lifted me to allow the billowing material to fall towards the floor. “What do you think?” he asked.

The dress was big. It was very, very peach. Sitting there, covered in flowing fruity fabric, I felt like a kid in a school play, acting out the role of a flower, or maybe some kind of sugary macaroon. What did I think?

“I don’t know,” I grumbled. “My footrest is up, so I can’t move to the mirror. The layers are all bunching up…”

Rob hates passive aggression, and I know that when I complain like this, he thinks I’m blaming him for everything. It can’t be easy, to help someone through this, to stand there, wanting everything to be ok, and knowing that it isn’t. “Are you trying to ask me something?” he wondered aloud.

“No!” I yelled suddenly, startling us both. “I’m not a fucking idiot! If I had a fucking question, I would fucking ask it!”

A silence fell over the room, and behind it, I could hear the walls whispering the word PSY-CHO.

Have I ever mentioned that I can be a foul-mouthed spazz? I apologize, blog readers, for the bad language, but I think it’s necessary to the story. I normally choose my words pretty carefully, but I’m bad with the F word when I’m upset. It’s a fact.

I knew right away that I had overreacted, but I was mad. Not at Rob, but at the situation. I needed to yell, to voice my annoyance at not being able to put on my own dress, to adjust it myself, or quickly take it off, if it wasn’t a good fit. I was in disbelief that I couldn’t kick my own footrest down, that I was stuck. That I was in a wheelchair at all, that my husband was dressing me. I was furious that I have to ask for help all day long, when I just want to do things myself.

To his credit, Rob just let the silence hang in the air as he decided how to respond. I folded my arms into the peach layers, and pouted.

Scarlett wandered into our room a few minutes later, oblivious to the drama.

“Should we give Mommy her Mother’s Day present early, to make her day better?” Rob asked her.

She gave him a DUH look, and said no. And that was probably a good thing, since it would only have made me feel guiltier for losing my cool completely.

Friday was a bad day. They happen. It didn’t really get better until we headed out for dinner with friends, and I was able to just forget about myself and my issues for a while. Sometimes I l literally need to be removed from my home environment, where ALS is omnipresent, and go into the wider world, to a place where the walls aren’t whispering, at least not about me.

The rest of the weekend was much better. On Sunday, Mother’s Day, Scarlett and I snuggled in my wheelchair and watched Paddington. We had dinner on the beach, with my sister and her family. The kids splashed in the water, the adults drank wine and ate stuffed calamari. We saw a pod of whales playing in the waves.

I opened my gift that morning. It was a gray scarf, with red and green accents, that Rob had picked up on his trip to New York. I was very happy to receive it on the correct day, instead of as some kind of pacifying gesture based on a toothless temper tantrum. The scarf is beautiful. I love it. I love my understanding husband, and our dear daughter, and there is no profanity necessary to explain that. But sometimes, in those tougher moments, a few four- (or seven-) letter words can come in handy.

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