Jean-Dominique Bauby was 43, editor-in-chief of French Elle, and driving his son to the theatre when he suffered a brainstem stroke on 8 December 1995. He came out of a coma about twenty days later with his mind intact and almost no voluntary movement left below the eyes. His left eyelid still worked. Over roughly two months in the summer of 1996 he used it to dictate a 130-page book, one letter at a time, while someone read a reordered alphabet aloud to him.

Le Scaphandre et le Papillon was published in France by Éditions Robert Laffont on 7 March 1997, though a few accounts give the previous day. The first printing sold out almost immediately. Bauby died two days later, on 9 March, at Berck-sur-Mer on the northern French coast, aged 44. Contemporaneous coverage, and the BBC’s reporting around the 2008 film adaptation, give the cause as pneumonia. Time’s piece from that month observed that he had finished the work before his body gave out.

How the alphabet worked

The code was built for him. Salon’s 2008 reporting, which drew on people who were close to him at the time, credits his speech therapist, Sandrine Fichou, with setting it up. The alphabet was reordered by how often each letter appears in written French, beginning E, S, A, R, I, N, T, U, L. A listener recited it slowly. He blinked at the letter he wanted, and the recitation started again from the top.

Robert Laffont then sent Claude Mendibil, a freelance editor, to take the dictation once Bauby had agreed to attempt a book. In an interview with the Guardian’s Elizabeth Day published in January 2008, Mendibil described the working pattern: about three hours a day, seven days a week, for two months. Accounts of the process put the average rate at around two minutes per word.

Some of that speed depended on Mendibil guessing ahead. Once enough letters had accumulated she would propose the whole word, and he would confirm or reject it. The transcription was literally collaborative, which is presumably why the book is dedicated to her and to his two children.

Where the figure of 200,000 comes from

The number attached to this story is about 200,000 blinks. It has travelled with the anecdote since 1997, when the Los Angeles Times reported it on 15 March, and it turns up in most retellings.

It is an estimate. Nobody sat at the bedside keeping a tally.

The record also does not settle what is being counted. A blink that selects a letter is one kind of event, and a letter recited aloud and passed over is another. If the total counts recitations, it describes the labour of the room rather than the movement of one eyelid. In our reading, the figure works as an order of magnitude consistent with the reported rate, and it should not be handled as a measurement.

In 1997 the director Jean-Jacques Beineix filmed Bauby during this period for a 27-minute documentary, Assigné à résidence. It runs at the speed the work actually happened: a letter list read out loud, a pause, a blink, and then the list once more.

The writing happened before the blinking

The arithmetic obscures the harder part. Bauby composed the text at night, in his head, and edited it there. By the time Mendibil arrived in the morning he was reciting from memory a passage he had already been over, sentence by sentence, with nothing written down to check against.

Writers have worked through an amanuensis for centuries, and Milton produced Paradise Lost after losing his sight. What is unusual here is the near absence of revision after the fact. Changing a line cost minutes rather than seconds, so a sentence had to be finished before it was spoken.

In June 1996, before any book existed, Bauby blinked out a letter to around sixty friends and colleagues to correct the impression, held by some of them, that he was in a vegetative state. Editors at Laffont who had worked with him before the stroke read it and proposed the memoir.

What the later research shows, and what it does not

Bauby’s case is often cited in discussions of locked-in syndrome, where it sits awkwardly, since a single memoir by a professional writer with a publishing house behind him tells you little about a population.

The main attempt to gather that kind of evidence dates from fourteen years after his death. A survey from the Coma Science Group at the University of Liège, led by Marie-Aurélie Bruno with Steven Laureys as senior author, appeared in BMJ Open on 23 February 2011. Questionnaires went to 168 members of the French association for locked-in syndrome. Ninety-one replied, and twenty-six of those were set aside for missing quality-of-life data.

That left 65 usable respondents. Of those, 47 rated themselves happy and 18 unhappy on the Anamnestic Comparative Self-Assessment scale, which anchors its top and bottom points to each person’s memory of the best and worst periods of their own life. Fifty-eight per cent said they would not want to be resuscitated after cardiac arrest. Seven per cent expressed a wish for euthanasia.

The result is a finding from this dataset, not a universal rule about everyone. The sample was drawn from an advocacy association, so it was self-selected, and it could only include people able to answer at all. Commenting through the Science Media Centre when the paper appeared, the neuroscientist Adrian Owen made the narrower point that outsiders are poor judges of what such a state is like from the inside. A six-year follow-up of the same French cohort, published in Orphanet Journal of Rare Diseases in 2015, drew returns from 39 of 67 patients, which indicates how thin the evidence base is here.

The end-of-life questions that follow from any of this belong to patients, families and clinicians working through individual cases, not to readers of a magazine piece.

The reading the anecdote invites

Told as an isolated fact, the story turns into a parable about willpower, with an uncomfortable implication: if a paralysed man produced a book with one eyelid, nobody else has an excuse. Bauby’s text resists that. It records irritation, boredom, the indignities of being handled and moved, the sound of his children’s voices, and a clear sense that he was probably going to die soon. Nothing in it is pitched as encouragement.

What the code and the transcriber and the bed at Berck could not supply was the writing itself. The book’s short chapters were assembled at night, in the dark, held in memory and worked over there by a man attending to the level of the sentence while the rest of his body failed him. He lived to see it published, and to see how it was read.