Monthly Archives: December 2014

The Good, The Bad, and Everything Else

Some days, when I sit down to write this blog, I struggle with what tone to convey. I want it to be realistic, but not too negative. Optimistic, but not phony. Ultimately, I want to make sure that what I say is true. But throughout any given day, there are so many truths, and they all have moods that go along with them.

I now have to use a fist to punch the microwave open. I rarely bother doing this, but in a pinch, it does work. My fingers get tired of typing, and today I tried using my knuckles instead (not recommended.) I sometimes open the refrigerator, see what I want, and know that there is absolutely no way I can get it.

That’s all on the downer side of things. It’s true that I am feeling more paralyzed lately. It’s a word I used to use figuratively—unable to make a decision, rooted to one spot in fear. Now, it’s really quite literal. My arms are heavy, and lifting them requires an energy that I once reserved for gym visits or moving day. Read More>

|Categories: Life, Meditation, Parenting, Progression | Tags: , | Permalink

Into the Vile

Scarlett had soccer on Sunday afternoon. She and Rob took a trip to a sporting goods store in advance, so she was all decked out in Adidas, including an A.C. Milan jersey. This was fitting, because her soccer class was organized through her preschool, and taught entirely in Italian. It was also fitting because the shirt fit. Haha! #winningatpuns

Sorry about that. I’m not editing it out, though.

With the epic rain we’ve had here in California this month (the phrase “Storm of the Decade” was bandied about last week), the soccer fields were still wet, and extremely messy. I basically ignored this fact, and cruised through the grass in my chair to join the other parents on the sidelines. It was Scarlett’s first class, and I wanted to be right there, even if it did turn me into the abominable mud monster. Read More>

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Progressions

“Live or Die, but don’t poison everything…” —Anne Sexton, Live

A friend wrote to me last week. He has ALS and is experiencing a noticeable progression in his symptoms. It happens. ALS  might technically be progressing all the time, but there are these moments, red-letter days or weeks, when you realize that you’re getting worse, that certain things are much harder to do.

Lately, I’ve also been dealing with a progression that feels big. I can’t get in and out of my chair very easily by myself anymore. So when it’s just the two of us, Scarlett and I can’t snuggle up on the couch after school to read books or watch TV. I can put her to bed, but only if Rob is home so that he can come lift me from my spot beside her and maneuver me back into the chair. I can’t sleep in late or take a nap, because I would find myself stuck when everyone else was gone.

This latest development comes alongside more weakness in my arms and hands, often leaving me unable to even prepare a decent snack during the day, never mind an actual meal. I woke up yesterday and couldn’t get out of bed, Read More>

|Categories: Life, Meditation, Progression, Venting | Tags: , , | Permalink