Scarlett is home sick today, so I won’t have time to blog intelligently. That is why I decided that Scarlett is going to be today’s guest blogger. But when I said that to her, she screamed NO at the top of her lungs and ran into the garage. So this might take some time.

My plan today was to blog about choices: why it’s good to have them, how we make them, how they empower us. I came up with this idea in the middle of the night when I found myself facing the decision of whether to ignore the discomfort in my legs or wake Rob up to roll me on my side. Lucky for me, after a few minutes of weighing the pros and cons of either choice, I heard Scarlett barreling towards our room, coughing and snorting like a troll with emphysema.

Rob took her back to bed, and when he returned, I casually asked him to flip me over. No biggie. We had about an hour more of silence before the little beast returned. She was taken away again, but it was hard for me to get back to sleep. When she finally showed up at a decent hour, everyone was exhausted, so we just laid there and she coughed in my face for a while.

Update: The Guest Blogger is back, and she’s rolling my old purple walker into the house. It’s covered in cobwebs. She quickly loses interest in that and sets out to put together some camping chairs she dug out of a corner. Funny how she suddenly appears to be so healthy and energetic. I feel like a sucker.

So, choices. Like everyone, I make them daily, but they no longer feel very empowering. Everything is a compromise. I crave independence, so much so that I occasionally become brusque and even snappy with the people who help me. I’m so grateful that they’re here OF COURSE, but I don’t want to consider the ramifications of using the bathroom now versus later, in an effort to utilize the least possible assistance. I want to go when I want to go. Alone.

I don’t want to overanalyze my decision to get into bed early, since I won’t be able to get out again without help. I want to get in and out of bed at will.

Update: The Guest Blogger wanders over to show me her mosquito bites “Do you think the mosquito brought some of my skin home?” and then trips over the computer cord. She’s fine.

I think about the importance of being kind. No one wants to help a person who is grumpy about their situation. I can make the choice to handle things differently, and usually I do. We all have our moments. I guess that more than being grumpy, I’m just quiet. I don’t want to talk—what would I say? Right now I’m making the choice to type when I know that it’s going to mean that I can’t use my hands for something else later. Something like turning the pages of a book I’m reading to Scarlett.

“Mama!” yells The Guest Blogger. “Is it turtles in a half shell?”

“It’s heroes in a half shell,” I answer.

Important question: Is one really sick if they’re pondering the lyrics to the Teenage Mutant Ninja Turtles theme song?

I’m not as crabby as I sound. Later, Scarlett and I will find a movie to watch, and I know there will be minutes and hours of the day when I will be perfectly content. Those are the times that make all of the difficulty fade into the background. ALS doesn’t go away, but I won’t allow it to be the most important thing. I choose not to.

The Guest Blogger wants to talk about Deadly Spiders now. Gotta go.

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