Still Here

It has been a while, and I want to fix that.

I’ve been up in the night more than I’d like. Pain has a way of stealing sleep and then, paradoxically, giving you quiet hours where the only thing you can do is think and write. So I’ve been writing. Slowly, in pieces, in the margins of hard days. Sometimes that means dictating into my phone in the dark. Sometimes it’s a few sentences on my iPad when I can sit up. Sometimes it’s a single word or an incomplete thought I’m saving to come back to later. The ledger is still open. I’m still accounting.

I want to know how you’re doing. Genuinely. If you’ve been reading here, you know something about what my days look like. I’d love to hear what yours look like right now. The comments are open.

There’s something smaller and sillier that’s been sitting with me too. I had a years-long streak of seeing every Star Wars film on opening day. It mattered to me in a way that’s hard to explain to people who don’t get it, and easy to explain to people who do. That streak is over now. I can’t manage a theater, and I’ve had to watch the excitement for the new film arrive in my feeds, on TV, in headlines, everywhere. It’s a small grief. I know that. It doesn’t make it less real.

On a more practical note: I’ve been using a wearable called the Visible Band (makevisible.com) to learn how to pace better. It measures heart rate variability and helps me understand, in real time, when I’m inside my envelope and when I’m about to blow past it. I’m still learning. But it’s changing how I think about the day-to-day management of this illness in ways I want to explore more seriously. There’s a full essay coming on pacing and what Visible has taught me. Consider this a preview.

More soon. I hope you are all well.