I write when something needs saying. About being sick and building anyway. About the gap between what you feel in your body and what you're allowed to say in a doctor's office. About constraint as a teacher. No calendar. No strategy. Just when it's there.
Seven years bedridden. Twenty-something doctors. A file that kept getting thicker without getting closer to anything useful. I learned more about my body in one afternoon with a medical journal than in six years of appointments. This is about what that does to you — not the diagnosis part, the part where you realize the system was never actually looking.
Nobody tells you how much energy you'll spend on the administrative work of being sick. Not the illness itself — the convincing. The documentation. The presenting of yourself as credible. I've been doing it for fifteen years and I'm still not sure I've cracked it.
Green room. Forty minutes to stage time. I was horizontal, compression socks on, telling myself the ceiling was fine actually. I've given talks in 27 countries. A fair number of them started like this. Here's what I've learned about performing when your body has different plans.
On good days I am catastrophically optimistic. I say yes to three calls, start a new project, promise a deliverable for Thursday. By Wednesday I'm horizontal and the inbox is full of obligations I made on someone else's energy. I still do it. I'm writing this to remind myself to stop.
I launched the first version at 2am during a flare. It was bad. The second version was worse. What nobody tells you about building for sick people when you're sick: you are both the founder and the focus group, and sometimes those two people disagree violently.
You're going to spend a lot of the next year proving something that shouldn't require proof. You'll get good at it. You'll resent getting good at it. The grief of that — the grief of having to become an expert in your own suffering just to be taken seriously — is real and it deserves to be named.
My newsletter. When something is worth saying I say it there first — before it becomes a post, a talk, or something more polished. Subscribe if you want the unedited version.
Read on Substack →