Category Archives: Venting

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

A Simple Night Out

The setting was a small Mexican restaurant in our new neighborhood. It was our first time trying it, because that morning Scarlett said she wanted tacos, and while we draw the line at tacos for breakfast, the idea got into our heads, and neither Rob nor I felt like making dinner later. Actually, part of that was a lie. I don’t draw the line at tacos for breakfast, we just didn’t have any.

The restaurant was decorated in a super fun and kitschy way; collectibles like small dolls, head shots of 1940s film stars, and license plates from different states adorned every surface. Aside from the decor, the place was not at all full when we arrived, and they sat us right away, at a table for four in the front corner. I don’t use a real chair at restaurants these days (or at home, for that matter), so I just wheeled up to the table while Rob and Scarlett went around to the side closest to the window.

The service was ok, and my margarita was a little watery, but we were having a pretty good time. And then, 25 minutes or so after we sat down, a woman came up to the table. She was older, and possibly the owner or a manager. “Can you move to the other side of the table?” she asked me brusquely, gesturing to where Scarlett was sitting across from me. Read More>

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Wising Up

Rob is out of town again. It should be fine, since he barely travels for work anymore, but even once a month makes me anxious. I think it’s more the build-up to the trip that I dread than the trip itself. It’s easier when he’s here, because we have an understanding, a way of managing my illness, our daughter, our schedules. When he’s gone, I worry that it will all fall apart. But it never does. I have plenty of help, including family who traveled to be here this week.

Last night, Scarlett climbed into my bed. “Daddy isn’t here and I get to sleep with you!” She had the beginnings of a cold all day, but it wasn’t until night that they blossomed into full-on congested coughs, snorts and sneezes. Neither of us slept, and now she’s home from school, watching My Little Pony: Equestria Girl. As an aside: this movie is TERRIBLE. I tried to turn it off, but she begged to keep watching and I gave in. It’s 9:30am, we’ve already read six books and had a dance party (she spun, I laughed.) About an hour ago, I began to wonder why I didn’t just send her to school. Then she started hacking in my face, and I remembered. Read More>

|Categories: Age, Life, Parenting, Progression, Vanity, Venting | Tags: , , , | Permalink