I build the things nobody made for us. And I care what they look like.
Builder, writer, and advocate. The migraines started when I was eight, and I was told I was fine. That same year I started falling behind at school, and everyone told me I just wasn't applying myself. I listened to them, because I assumed they knew more about me than I did. It took until my forties, when my body and my brain quit at once, to find out nobody had actually been listening. Nobody was ever going to look. So I built the proof myself.
The help exists. Nobody built the part where you have to be believed first.
The medications, the codes, the accommodations. All of it is real, and most of it was sitting in a building I had already walked into, sometimes with a doctor I had already seen. Not one thing I ended up with had to be invented for me.
What stood between me and all of it was whether anybody believed me. And that is the part nobody has built anything for. There are books about being sick. There are forums full of people with my diagnoses. There is nothing that tells you how to walk into an appointment and come out with an answer. I looked for it for years. Not one place.
So I worked it out myself, and then I wrote it down.
The objects are the same failure in a different room. Every pill case, heating pad, grabber, and stool I own is ugly, and not because somebody decided that was what I deserved. Because nobody making them ever pictured a woman with a house she cares about.
And it isn't a niche. An estimated 60 to 70 million women in the United States live with at least one chronic disease. Roughly 50 to 60 million live with two or more. It's half of us.
None of this makes a body cooperate. That was never what design does. What it decides is how much an uncooperative body costs you: how many appointments, how many hours, how much of the week gone to something that could have been built differently. And what you're looking at the whole time.
The pain's coming either way. The ugly part isn't. I'd rather hurt in a beautiful room, using things I picked myself.
What I'm working on.
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Finding
The version of each thing that isn't ugly. Verdicts on the objects of a difficult day: what works, what doesn't, what I'd buy, and what nobody has made yet. Reviews
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Documenting
A year of renovating a Chicago two-flat, planned around the worst version of my week rather than the best, and changing one condition of my life a month. On the theory that most of what gets called a character problem is a design problem. Posted as it happens, including the months that don't work.
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Writing
The forthcoming book. Seventeen chapters on getting an answer out of the rooms that were never going to look: the exam room, the claim, the billing department, the job. Written for a woman who has been told she's fine for most of her life.
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Speaking & Consulting
I'm available for the right conversations: podcasts, interviews, and the occasional talk. Also open to consulting with the people who make things for bodies like mine, ideally early, while things can still change. Speaking · Consulting
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Newsletter
Sent when I have something worth saying. No schedule. No cross-promotion. No filler. Subscribe
Ugly isn't neutral. It's what being overlooked looks like as an object.
A shower chair that humiliates you didn't come out of the ground that way. Somebody made it, and nobody in that room ever pictured a woman with a house she cared about. Same failure as every exam room I sat in, except this one follows you home. So I'm going through them one at a time and saying which ones are worth having.
The verdicts
One thing at a time. What works, what I sent back, what I'd buy again, and why. Including the ones I don't earn anything on, which is most of them.
The apartment
Nine hundred square feet is a research budget. Every compromise I have to make in here is a product that doesn't exist yet, and I'm writing all of them down.
The store
Digital guides I wrote because I went looking for them and they didn't exist. The method for getting believed, in a form you can print and carry into the room with you.
You are not a difficult patient. You are a normal patient in a system that was designed for a different kind of normal.
Ways this becomes something you can use.
Reviews
Verdicts on the things they sell us. What works, what doesn't, what I'd buy.
Store
The guides I went looking for and couldn't find. Written to be printed and carried in.
Speaking
What I talk about, what I won't, and how to book me.
Consulting
For people making things for bodies like mine. A user's eyes, early, while things can still change.