Chronic-Illness

The wave metaphor for fatigue was true but incomplete. The wave is the crash. Underneath it there is a tide that never leaves, and an undertow that grabs without warning. This is the fuller picture.

Fasting is a tool, not a law. The point is dependence, not deprivation. What that means for a body that can’t skip food, and why the discipline was never about the food.

Most writing about disabled life focuses on what’s hard. This is what two days where things actually worked looked like for me.

Christian ministries for the chronically ill keep building events and platforms that exclude the very people they exist to serve. Live-only conferences, video-based content, paywalled recordings, and inaccessible websites aren’t just oversights. They’re choices.

Fatigue from chronic illness doesn’t respond to rest. I picture it as a wave coming toward me. Caffeine, music, a splash of water on my face are my surfboard. Sometimes they hold. Sometimes the wave flings me off anyway.

The ultimate goal is an organization for multiply disabled people. But most of us were taught we can’t contribute before we ever got the chance to try. The school rebuilds what the systems took.

I’ve been sitting with a vision for months. A learning program designed for multiply disabled people from the ground up. Not accommodations bolted onto a broken system, but something built for us as the default case. This isn’t a launch. It’s a ramp.

A reflection on seven months of loss, change, and becoming. How my plans fell away so something else could take shape, and how I found peace with who I’m becoming, even while some questions remain unanswered.

The existing word prediction tools don’t work with NVDA. So I built my own add-on that predicts words using n-gram analysis, announces them through NVDA’s speech engine, and works inside the screen reader instead of against it.

A lifetime of being talked down to, left out, and left behind by people who assumed I couldn’t rather than asking what I needed. This is what infantilization looks like from the inside, and what it costs the people it happens to.