Why I am a cyborg
The word keeps coming up on this site, usually between two commas, and it raises a smile. This page explains why I use it literally.
What I have
Myoclonic dystonia: a genetic neurological condition which means my body does not always respond the way it should. Movements happen without being asked for; others fail to happen when they are. It is chronic, it is not an injury you recover from, and successive drug treatments did not achieve much.
What was implanted
Deep brain stimulation (DBS), bilateral, on the pallidum: electrodes implanted on both sides, connected to a stimulator that delivers a continuous, tuned current. The operation took place at the end of January 2025, recovery took up the spring, and the adjustments carried on long afterwards. They are still going on.
This is the part that is hard to grasp from the outside: you do not leave the operating theatre repaired. You leave with a device that has to be tuned and a brain that has to learn to live with it. The brain learns, and the brain resists. A few tenths of a volt decide what my fingers can do this month.
Why that word
Because it is literal, not romantic. One of my bodily functions is carried out by an implanted device: powered, configurable, running firmware I did not write, and stopping if you switch it off. There is nothing science-fictional about it once you apply the word to what it denotes.
So there is firmware in my head. It carries a version number, it receives patches, and yes, I do apply regular updates. It is the one BIOS I cannot reflash myself, which, for a computer scientist, remains a fairly galling situation.
It also says something that "patient" does not. Patient describes a relation to medicine, provisional by construction. Cyborg describes a permanent, technical state: I depend on an industrial object, on its battery, on its settings and on the people who manufacture it. Which is, precisely, the situation I spend my days studying in others.
What it changes about what I write here
I work on accessibility and on how automated systems handle disability. Since 2025 I am no longer only on the measuring side: I am also in the population concerned. That does not make my results better, and I am careful not to turn it into an argument from authority: a badly built protocol stays badly built whatever the body of the person who wrote it. It does change which questions occur to me first, and how much patience I have for certain answers.
The rest is elsewhere
All of this goes beyond the scope of this site, which is a professional one. I have written up the detail (the condition, the decision, the operation, the hospital stay, the adjustments, what works and what does not) on my personal site:
I am putting that link here not because it belongs to my professional activity, but because those texts were written in the hope of being useful: to someone who has just been given the same diagnosis, to a relative trying to understand, or simply to anyone who would like to know what is behind the word.
On this site, what follows is on the side of the research areas and the accessibility status of this page.
P.S. Since the operation, it would appear that I can sense short-range Bluetooth transmitters. Who knows?