Not Quite a Ghost by Anne Ursu 📚

5/5 ⭐⭐⭐⭐⭐ In this middle grade book, the main character simultaneously deals with: a spooky, mysterious presence in her new house, and a confusing new chronic illness. The author does a great job portraying some struggles common to ME/CFS and long Covid : the discombobulating nature of symptoms that fluctuate, shifts in friendships when pals don’t believe/judge you, not being believed by doctors, and some very accurate descriptions of PEM (post-exertional malaise).

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One of my favorite podcasts is Maintenance Phase. Each episode, two smart + hilarious friends take you through the science of some topic related to wellness and weight. I think the last 2 epis have been some of their best work. https://www.pandora.com/podcast/maintenance-phase/ozempic/PE:1308299814

Recent Reads

Just some articles I’ve been reading this week. Coming to Terms with Long COVID - Deepa’s Story This page has a short comic about one person’s experience with LC. It also has a short, very useful list of resources at the bottom. I will be using this as an “on-ramp” for folks who are questioning whether they’ve ended up with LC. Appreciate the visual nature, plus the short length. Great for those with limited energy.

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Beautyland 📚

I loved this book. A good mix: sweet, emotional, funny, sad. A daughter and her mother. We follow the daughter as she grows up. She’s secretly an alien and has great observations about the world, which she sends to her alien kin - via fax machine. Here’s one of my favorite passages, from once she becomes an adult and gets high for the first time. “Adina, high, faxes late into the night.

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Nightly Ritual

Every night I try to do this ritual in bed before I sleep. (Try is the key word, because sometimes it’s just one or two letters instead of the whole acronym.) My rules: Do at least one of these four letters. Don’t pressure yourself to do all four if your brain is out of energy. Keep the scope narrow: only things from the last 24 hours. Don’t pressure yourself to make it a big thing.

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📷🐶 Packing time!

Tricolor corgi sitting in an empty open cardboard box looking up at the camera with big eyes

📝 Energy

I haven’t written in a while. I’ve been…tired. And that’s what I’d like to write about. Under the systems we have now: time, energy, health - these are all the most important things for survival. We need these things to make money, we need money to survive. If you know me in “real life” (read: synchronous life) then you know the Harriet Beecher Stowe quote I love to recite: “A woman’s health is her capital.

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Slow-Cooker Brain

Many neurodivergent people are said to have slower processing speeds. When you take in way more information than the average person at rest…yeah, it might take you longer to process it all. After hearing a lovely coworker use similar wording, I’ve been referring to this kind of processing speed “slow-cooker brain.” I like it because when you use a slow-cooker (like a crock pot), the things you cook are usually really great!

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Sick vs. Well

Disclaimer. I talk about lots of binaries here: mainly, the sick-well binary and the disabled-nondisabled binary, but also a couple more. These binaries that are distinctly different, yet have a fair amount of overlap. I don’t go deeply into the differences between all of these concepts here - but if you’re interested in that, leave a comment and my nervous system will consider it :) I think a lot about disability through a dynamic lens.

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Non-Negotiables

I used to have a list of things that had to get done every day no matter what. I’ve heard people call these “non-negotiables.” It really worked for me to have a list like that. Not so much anymore, though. Living with dynamic disabilities makes having non-negotiables near impossible. And also my brain also doesn’t process change very quickly to begin with. I suppose everyone’s non-negotiables change over time, but mine (and my ability to complete them because of chronic illness/oscillating bodily ability) change so rapidly it’s overwhelming and difficult to keep up.

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Prevention

Been thinking a lot about prevention. Nobody likes to do it. The payoff isn’t visible or exciting. If whatever you do is effective, lack of result is the result…and that’s not very satisfying for our brains. As kids, we probably rolled our eyes at our parent when they insisted we wear a helmet to ride our bike. It’s rare to meet anyone who enjoys going to their annual doctor’s appointment and getting that shot they need (or getting that pelvic or prostate exam you’ve been postponing.

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Introduction

Hi, I’m Emerson. I use they/them or he/him pronouns. Here are some things I think a lot about. If these interest you too, basically we’re friends now: accessibility/a11y, neurodiversity, disability justice, health equity, energy-limiting and dynamic disability, medicine, public health, neuroinclusion, AuDHD, solarpunk, permaculture, knowledge management, FOSS, mindfulness.