Submitted by chumloadio t3_yzj62u in todayilearned
> She recited the alphabet until Bauby blinked at the correct letter, and recorded the 130-page manuscript letter by letter over the course of two months, working three hours a day, seven days a week.
I bet they also developed some shortcuts, too, like when the next word would be obvious: "Is the next word 'the'?" or a character name. "She asked Gwe..." "So, Gwendolyn, right?"
Thank you for the reply. Yes, that's where I learned about him.
Good theory. They also used a custom-ordered alphabet arranged by frequently used letters.
Masterpiece film
It's not as well-known, but he also wrote the accompanying song
The movie is amazing too.
Right? Seems a better system but requires both learn it. Wonder why they didn't use that.
The only fear i have.
Like a compression algorithm. Blink once quick for e, once quick and one long for a, two quick for r
Imagine they invented their own shorthand.
You would have to think so. Whatever works... :)
1952 - 1997 wasn't anything to do with his life span...
That's how long it took to write the book...
"Le Scaphandre et le Papillion"
Didn't know what to expect going in, absolutely loved it!
Here's a clip:
what we aren't considering is how much blinking would need to occur to discuss and agree on that system
How did anyone know he wanted to write a book in the first place?
He was born in 1952 and died in 1997. It took him and his assistant two months to write the book
Before his seizure, Bauby had signed a contract to write a book.
Like Morse code lol, would be faster
Sort of like Hector from Breaking Bad
Having written a book, that is significantly faster than I would've assumed given his means of writing.
Thanks for contributing to the topic. Yeah, I agree. I was surprised at the speed of completion too. But that's what the Wikipedia bio reports.
Great movie.
What Metallicas "One" song is about. People left so damaged from the war, some had no arms or legs, no vision or hearing. Totally isolated.
Ding ding!
Or she wrote most/all of it but it would be unethical and illegal to claim it as his.
So she got smart.
Many pages are illegible and incoherent, attributed to possible seizures he suffered.
/s
Before the seizure he had signed a contract to write a book.
“Cerebrovascular seizure” actually means a stroke. Given he was locked in it was likely a brainstem stroke at the level of the midbrain. But there is not really an accepted medical condition of “cerebrovascular seizure” in neurology currently.
It is a haunting memoir.
I love media that spurs self-education.
That would involve a hell of a lot more blinking.
Absolute horror.
Would blinking Morse code not have been faster?
I guess you don't got much else to do at that point
Because you show a diagram at all times and the blinker has no choice but to use it...
True. Others would be even faster though
He can write a book with one eye lid and I can't write an article with two frikin pan-sized hands
It probably wasn't effortless for the 99% paralyzed person to blink.
Did he really? Sounds a bit like facilitated communication. Seems more likely that he painted the broad strokes and his assistant filled in the gaps.
I cannot live I cannot die
I love all entertainment that spurs self-education! I've learned lot from video games and also quite a bit from movies/TV shows!
No thanks, I'd rather be dead.
One of the most fascinating movies I've seen and also one if the scariest. He was quite young, wealthy, glamorous, active, everything in his life was nice and happy, and then bam, in one second it all just goes away. Like he's transported to hell instantly.
If I ever had this, I'd pray to god some idiot doctor declares me dead instead of staying like that.
His story was made into a decent film in 2007. It was nominated for 4 Academy Awards (Oscars), among other distinctions.
The Diving Bell and the Butterfly
The film follows him as he starts his rehabilitation. It's intercut with moments from his life before before his incapacitation as he reflects on them, so it's not all bedside footage. It does take some liberty with his story (his real-life girlfriend didn't react the way she was depicted in the film), but I still think it was a good film. Actually, years later it's one of those stories that I still think about from time-to-time, which is one of the best compliments I can give a film.
It says the recited the alphabet. That doesn’t sound like coded blink sequences.
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The wikipedia article says "26-letter alphabet according to the frequency of use"
Why not use Morse code?
I believe it's possible to have medical care preferences laid out in some legal form, along the same lines of a Do-Not-Resuscitate order. Like, if X/Y/Z happens and I'm incapacitated/vegetative, do not provide life support.
One of those things I really should get done. Shit can happen at any age or any time.
Right. I interpret that to mean she recited the “alphabet” like a-e-s-t-etc instead of a-b-c-d-etc
Trapped in myself
To be fair it’s not like the blinker has to agree, they don’t have much of a choice.
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Yes! As a speech therapist myself, we put the alphabet in a grid based on letter frequency. Then you point to each row and then across the columns to get the letter.
Incredible
"Oh, Michael you should have way more fears than that."
It's not like he had anything else to do.
Body my holding cell
Fine, fine. Al you had to do is ask. Let me grab some paper. Ok, you ready?
A... B... C... um, I can't tell if your blinking. I think we're gonna have to meet up at a local coffee shop or something to make this work...
Probably not. Would require much more blinking with greater room for error. Likely it was a modified alphabet broken into sections for often used letters.
This would be way better served by even some simple algorithms.
Think how much time you would save if you even made just one modification:
The first prompt is: "First half of the alphabet?"
It can be done, my grandmother had one. I think it can be called a "living will."
The nurses just called it a DNR.
My father has told me many times that if he's ever a vegetable, I'm supposed to "find a way to off him." Like it's too much effort for him to get the fucking DNR, so I better risk murder.
Husband watched it with coworkers at his first hospital gig for TIRR. He was on a traumatic brain injury unit, so it was his bread and butter.
Also the movie Johnny Got His Gun.
450 pages of "Kill me"
Here is a clip of one of these legal preferences being carried out:
This is like a new twist on my worst fear.
They used a specialised alphabet order with the most frequently used letters first
Yeah but they do have their eye on it.
Still sounds like a huge pain in the eyes
It took a while for them to realize he was cognizant behind that one blinking eyelid. Once they realized he was awake they quickly devised a way to communicate. Once communication was established I am sure s lot of different discussions came up, including the book.
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Should a great book and obviously short. I think I’ll read it tonight!!
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Not a bad idea. People do sometimes use morse code in adaptive devices. Some computers have had straws that someone paralyzed from the neck could blow or suck on in morse code to type. But it typically isn't used for people with locked in syndrome for a number of reasons
1 any message system would have to be easy to learn for the user and his caregivers and family and friends to learn. An alphabet board can be learned in minutes but morse code could take weeks.
2 Sometimes people with locked in syndrome only have some of the muscles of their eyes fully functional and these can fatigue. Its easier to do one or two inputs for letters at the slower pace than morse code which would require rapid accurately timed blinks. Jean Dominique actually had the incomplete form and had some small eye face and neck movement as well as describing being able to wiggle his limbs in the book.
3 in some people with locked in syndrome the eyelid control is so poor that they cannot open or close their eyes fully. In this case the only movement they have that is reliably easy to see is looking up. It is extremely hard for even able bodied people to use this movement timed with morse code.
There have been improvements a knock code is most often used today. The letters are in a grid and the row is selected by saying the first letter then that row is read off. Also it gives time for the interlocutor to guess the word in between letters potentially speeding up the process.
That would be crazy if they blinked at the same time and she had to say “i’m sorry, i didn’t hear you what was that??”
Props to the assistant, too. That sounds like a gruelling task.
He really did. It’s well-recorded.
They do stuff like that now.
This is a video a redditor who recovered from locked in syndrome shared about the system he used
I would have thought a 5x5 array with e separate would be quick go row then column.
Also, the movie highlights something the book didn't - he was in love with a woman who didn't/couldn't deal with the locked-in situation, and his amanuensis was his loving but unloved wife, who found out about the affair because of the accident. Awkward.
TIL That his publisher provided the amanuensis, and a ghost writer. And the director of the film decided to focus on the first wife and write out the current lover, who visited him fairly often actually.
Yes like U and I :)
I thoroughly enjoyed it but found out after that the drama with the woman/ex wife was fabricated for 'good movie making' which tracks with Hollywood but feels unnecessary. It's a compelling story without added drama
Should have kidnapped him and taken him to Talos IV.
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Ah, a human autocomplete
Honestly my vague memories of first year programming were suggesting a binary search (first half of the alphabet or second, first half of your subsequent selection or second) but a grid is much faster.
And the most obvious deterrent to me is that it would be exhausting to blink out a sentence, one letter at a time, in Morse code. It would be much easier physically to blink “yes” to the correct letter as read out by his assistant.
My intuition suggests it might still be faster to start with that question, but someone would have to run the algo against the most common words, or the book he wrote at least.
That’s it. That assistant has the most boring job in the history of the world.
We should ask r/theydidthemath how long this would take!
Wow. I’d go nuts. Or learn Morse. Or both.
I’ve often heard stories about paralyzed people who communicate through blinking. Why is it that blinking is often the only movement they have left? Has anyone ever been paralyzed to the point of not being able to blink? What would happen to such a person?
Yep. you only need 5 blinks to define any letter and like autocorrect you only need a few letters per word.
Still a massive undertaking!
Trees are much faster, they only need to store what's actually there.
A matrix only works better when its full.
Of course its way easier to understand
Could be, hard to tell with the limited information in the article. But it seems like CNIII is involved as well if you read it as his eye movements are paralyzed.
Eyes have different innervation than most parts of our body. Most of the body is controlled via the spinal cord, but the structures in the head, like eyes, are controlled via cranial nerves that come directly from the brain. There are 12 pairs of cranial nerves that are traditionally numbered from top down. Eye movement nerves are number 3, 4 and 6. If you got your connections disrupted on the level of, say, number 4, you still have some movement left in the eyes/eyelids, but can't move anything else in your face. The whole body is paralyzed, too, because the spinal cord / brain connection is off.
Some people are/were totally paralyzed, yep. There is some ongoing research on recognizing and helping such people. Doctors can scan for brain activity and use machines that interpret this activity as attempts for communication. They've actually made a brain implant that allowed a patient to ask for beer, curry and some music. It's amazing.
Oh man, that movie and its music broke my heart.
Like Hector Salamanca
yes I'm sure he wasn't a part of orchestrating the system. They just realized they had a captive writer and forced a book on him.
Thanks. This is going to be my electro indie band name now.
Jeez, at least Salamanca had a bell.
Also a book, which is what the song is based on!
If only there was some kinda code for this
That's always my first thought when this story comes up. In the same situation (assuming I could persevere at all) my first request would be for a table of Morse. The tedium of going through the alphabet over and over just seems like the torture.
And nothing else matters
Like Hector in breaking bad
Which letter you cutting?
It’s based on a movie.
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They did, there's a movie with the same name and they depict the process
do you know where I cam watch it? It's been on my watch list for years but I couldn't find it
Strangely enough, SBS televised it. SBS is a station in Australia
There is a great Venture Bros episode that references this titled "The Diving Bell vs. The Butterglider". It does a mashup of this story with Fantastic Voyage.
thanks, I will try with a VPN to get to watch it
So weird I remember 1996 in color.
indeed, locked in syndrome is associated with a stroke of the basilar artery
He could just close his eye and fall asleep.
JustWatch says it’s available on Amazon in Austria. Don’t know if that’s an option for you. But you might be better off paying to rent it or hitting the high seas.
If I remember there was also a similar thing with two characters from The Count of Monte Cristo. She would go down the letters of the alphabet In a dictionary I think, and then start going down the words under each letter. I wonder if this was some kindof accepted practice in France for communicating with people who couldn't speak or move
Oh ya, I agree with you. My comment was more what you would do if you actually followed a compression algorithm tree. Idk I was really high when I commented.
Go watch the movie!
Mads Mikkelsen is amazing.
I could see Morse being harder to get started and way easier to get discouraged if I’m already quite disabled and wanting to write a novel.
Someone mentioned they had an alphabet ordered by letter frequency, so I could see the two of them optimizing quickly.
Like, at the beginning of a sentence,
“S” blink
Ok… it’s not another S. “A…” no blink “E,” etc. as a simple example.
Ding ding
Don't even need to cut one, just have a 6th column with the least used letter and chances are it'll hardly ever get that far anyway.
Thanks for the information! It’s crazy what modern medicine can accomplish
How did she really react vs the film??
My favorite rapper has "do not resuscitate" tattooed across his forehead.
I'm not usually a fan of face tats, but I can get behind that one because it leaves no question.
Thank you. I love the Venture Bros. I will look for the episode.
With e separate
I read this book when it came out. Devastating. There is also a movie made of the book which I also saw. A true nightmare.
What if they pretended to write it down but actually came up with their own book?
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About the only thing I'd be blinking is some variation of “kill me”.
It is cruel beyond words to keep people in that state alive. If ever there was a situation where euthanasia is clearly the right thing to do, that would be it.
How do we know that the assistant didn't write the book based upon intricate knowledge of the man and his works, and that she knew it would never be a success if she tried to take the credit?
In the film, his girlfriend became distant toward him after he became disabled (he longs for her to visit him). In real life, she visited him.
I guess we're compelled to trust that some people are actually honorable, sincere, and have personal integrity -- especially in the context of helping someone who is going through an unimaginable personal challenge like this.
Didn't they do this on "Breaking Bad"? I could have watched ol' Hector ring his bell for weeks. RIVETING!
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Thank you for this reply, TigerBone. I'm glad I was part of this upward spiral.
brock_lee t1_ix07mqs wrote
Just see this on Jeopardy? :)