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Trapped in his body for 12 years, a man breaks free (2015) (npr.org)
404 points by varbhat 13 days ago | hide | past | favorite | 133 comments

While it's not really comparable to this case I spent months in a coma. My wife tells me she was there 24/7 for the first week then hours after work every day. I'm told my family visited everyday as they had worked out a schedule. Every one them interacted with me or read to me or whatever. I remember nothing of it. I feel it did nothing for my recovery but who can say.

I remember only a very long nightmare I couldn't wake from. One bad dream after another. Normally I can wake myself from those types of dreams but this was permanent. Later I had to go to therapy to try to rid myself from those memories or at least learn to live with them. The therapist told me there was no way to tell if I had that experience during coma or during the time the - just short of od doses - drugs were withdrawn.

My waking experience was like swimming up to the surface of a clear blue ocean from very deep below. I remember hearing a tiny voice asking me to squeeze a finger and made a very small movement and remember a lot of shouting and stuff. Wife tells me everyone who visited me did the same thing every day but this one day I moved when she went through the ritual. When I became fully awake after all the drugs had worn off I realized I could barely speak and couldn't move my arms or legs. Months of rehab to follow. I still rage at movies and TV where a coma victim wakes and it's like nothing ever happened.

This was 10 years ago and as you can see it still effects me deeply.

Thanks for the incredibly detailed account from the other side, I'm so happy to hear you pulled through. My dad had a massive hemorrhagic stroke and I was in your wife's position when he was in medically induced coma on high doses of propofol and fentanyl. I always wondered if he was dreaming when I saw his eye saccades in REM. It's tough to go through this experience and made me a patient person once he came out of coma and had narrowly been given a new lease on life albeit needing intensive rehab with severe cognitive and motor deficits. I wish no one has to go through this experience with a loved one...

Stories like yours make me extremely grateful for the advancements of science. Please do yourself a favour and enjoy your "second life". Maybe get a copy of this book: https://www.amazon.com/Feeling-Great-Revolutionary-Treatment...

Wow, thank you for sharing. That was really insightful.

I'm extremely curious: after you woke up from the coma, did the frequency/"intensity" of the dreams change at all?

For the first week or 10 days I really couldn't tell the difference between awake or asleep. My wife tells me I frequently asked her why she had abandoned me in Alaska. I figure that was because it was pretty cold in the room. During that time all the dreams I remember concerned not being able to move. After that period I guess my body had flushed out all the drugs and a normal sleep / dream cycle returned and the nightmares pretty much went away.

Two things seem to be permanent though. I used to be very heat sensitive, preferring the winter to summer etc. Now it's the opposite. The other thing is I developed blood flow problems to both of my hips which the doctors tell me is probably due to the massive amounts of testosterone I was administered while in the coma. I think it's a fair trade off for a second chance.

Out of curiosity, why were you given testosterone?

I listened to the whole podcast about Martin.

His family never gave up on him.

He was non-responsive for more than 11 years.

For most of that time, he could hear and understand.

Because he couldn't communicate, his life was a joyless experience.

Sometimes his carers were careless with him, hurting him. He couldn't respond. One nurse abused him. He couldn't respond.

After many years, his mother told him she wished he would die.

He learned how to disengage from his thoughts. Just go to black. He became good at that. It was joyless. "A very dark place to find yourself because in a sense you are allowing yourself to vanish."

After years in this very dark place, one day he decided he'd had enough.

He began to re-engage with his thoughts. Over months, he learned to tell the time by tracking the angle of the sun's rays in the room over the day.

Still, he couldn't move his body.

They'd sit him in front of the TV to watch Barney. He hated Barney.

One day he heard Whitney Houston on the radio, singing The Greatest Love of All. When she sang "No matter what they take from me, they can't take away my dig-ni-ty" he thought to himself, "Wanna bet?"

He embraced darkness and endured his own thoughts, moving through them, gaining self-understanding.

Then, after a while, something changed and he could blink his eyes. I don't know how long that took, or what the moment was like when he first made contact again. The podcast doesn't detail that moment. It just skips to when he could squeeze hands.

His mother bought him a joystick. It took him a year to learn how to use it.

He asked for coffee and forged ahead. Within two years he got a job with the government. A nurse told him she had a problem with her computer. He fixed the computer. Soon, he quit his job and started a web design company. He met a woman over Skype. They hit it off and got married when he was 32 years old.

His face hurts from smiling so much.

He also did a TED talk:


There's also another good article, just recently published with a few extra details:


> The podcast doesn't detail that moment. It just skips to when he could squeeze hands.

"That all changed when one of his carers, Virna van der Walt, noticed that he could use very small eye movements to respond to things she said."

> He met a woman over Skype.

"In 2008, Pistorius met his wife, Joanna. She was his sister’s flatmate; they were introduced to each other over Skype."

My grandfather was on life support for less than a year, and they were talking about unplugging him.

Then he recovered and lived another ~10 years.

Was it in the US, what year and cost?

It was in the U.S., less than 20 but more than 10 years ago.

I don't know anything about the cost.

It's possible the previous commenter's "coAst" got autocorrected to "cost".

This is an amazing story. It's like a variation on the Count of Monte Christo, leaving out the revenge part.

holy shit I'm aching in forms I never knew before

add this man to 'patience' in the dictionnary

I listened to the whole podcast about Martin.

Which one? I'd like to give it a listen. Thanks.

This is an interesting story, but unfortunately the article is a lengthy advertisement for a larger program that does not appear to be available in text form:

> To hear how Martin returned to life, listen to Invisibilia, NPR's newest program. The program debuts this weekend on many public radio stations, and the podcast is available for download at NPR.org and on iTunes.

Edit, because this is still floating near the top: It's an older article, and has been released in text transcript form after all:


I think the story is told better by Pistorius himself - https://www.youtube.com/watch?v=WD1IX1AFRZg

A remarkable and somewhat singular voice sharing insights from a long contemplation. Well deserving of long consideration in return. Most concerning is how long it took someone to come along with the capacity to see that there was someone 'in there' - and who could connect him with the help he needed.

To some extent all of us are in a similar state. Each of us is far more than what we have been able to do for others. Much of what we are and can be is invisible to most people around us. The reverse is also unquestionably true.

Recognizing and internalizing that, we can also appreciate that our efforts - to make it possible for more and more people to express themselves as Michael has done - are very important to very many. Including ourselves.

Thank you very much for pointing this out.

This video is one of those things you could watch every year for a number of different reasons -- all of them important ones.

I have a list of inspirational videos that I rewatch periodically - here's another one I watch every year or two: https://news.ycombinator.com/item?id=24493750

That's the most intense and innocent appreciation of language I've witnessed. According to his wiki page, by now he's wheelchair racing.

There's also a wikipedia article. https://en.m.wikipedia.org/wiki/Martin_Pistorius

The article is a transcription of the first two thirds of the 12 minute long podcast. Just skip to 8 minutes in to hear the rest.

Cut that down to 2 minutes by listening the podcast on double speed.

I'm surprised anyone would 2x the speed on such a podcast. I usually prefer to skim text for quick information gathering but not for a podcast. To me podcasts are about having a certain intimate experience and really don't like doubling up the speed. For instructional videos yeah, doubling up is very productive.

I watch Netflix and other television speed at 1.3x - 2x, and I enjoy the experience much more than at normal speed.

Not everyone experiences information the same!

Do you ever worry that you're training yourself to find actual human interaction unbearably slow?

I already find human interaction to be unbearably slow. Apparently I talk incomprehensibly fast

Wait until Musk's neuralink is common.

I talk fast, and type exceptionally fast. I wonder how insanely fast a neuralink would be, without the limits of flesh, rendering concepts to a data stream of some sort.

Then transmitting that to another person. I'm sure there will be a new language, but... imagine conveying 10 minutes of talk in 12 seconds.

How would you ever communicate normally again?

There’s probably a hard limit to the amount of information you can take in a day or between sleeps. This is based on personal experience where I can’t focus on assigned readings if I read too much of “hobby” reading.

Mayhap. However, each individual has a differing capability here. And as well, each has a differing capability, with different aspects of their brain.

For example, the path for "reading" is something like "vision -> deciphering squiggly lines/patterns -> words -> comprehension -> interpretation -> contextualization -> on and on."

And as you mention, there are many other processes in parallel, such as focus/attention, etc.

You could get tired at any of these points, yet the neuralink may bypass many of these steps! So one may literally be able to absorb greater info, without fatigue.

Of course, this is a far greater cause for concern than some realise, for example...

Right now, each of the above steps (and more, I'm just spewing a few examples as a 'path'), have built in, evolutionary derived 'filtering'. Your visual cortex, for example, filters and processes info. Deciphering 'random marks on paper' into patterns, and then words, with meaning? More filtering and processing.

All of our senses are filtered, processed, managed by portions of the brain, prior to being interpreted by our multi-layered, multi-faceted mind. What I fear is that a neuralink like device may bypass much of that filtering.

That processes to allow critical thought are even more complex than we think, and may reside in specific areas of the brain. I know that I walk away with differing levels of comprehension from something read, spoken, or watched.

I suspect that 'interpreting information' is highly source dependent, and that we learn to interpret, to 'tune' the same sight/sound/vision as the same event.

I guess my point here is simple ; bypass parts of the mind when inputting data, and the outcome is uncertain.

Imagine reading news articles, or watching a video, with some of your interpretive / critical thinking bypassed?

(I'm sure someone will point out "No, part $x of the brain does that job!". Sorry, I say NO, that's my whole point. Our brains are not a machine, with a CPU/GPU/NIC or what not. Just look at the insane complexity of the visual cortex.)

I am not that individual, but I listen on 1.5x-2x speed as well for podcasts/audiobooks. I was always a fast reader/listener, and I think it's because I loved listening and reading.

Human interaction is kind of slow yeah, but it gives you time to think.

hah, not OP but I actually do worry about this. Watching stuff like GN at 1x and it feels like they're talking in slow motion. I worry that it leads me to talk faster than I should and I try to make sure I'm not coming off as too caffeinated in person.

Do you watch it to extract info? If so it makes sense. But to get the experience I sync with the original speed and if it’s too boring I skip alotogether rather than ramping up the speed.

This is interesting! What sort of shows are you watching, and why is it important to you that you get through them quickly?

How does one set that on netflix?

I listen to either at 1.5x or 2x depending on the podcast (The Agenda with Steve Paikin, Adam Savage Project, 99% Invisible). I am able to enjoy a greater variety of content or get through a back log of episodes. I’ve worked myself up to 2x over time to the point where regular speech sounds slurred.

There are exceptions: Pondercast is one where that takes the intimacy you’re alluding to an extreme. The spoken content is tied deeply to the pacing of the music so it would be ludicrous to listen to it that fast.

I misread your comment at first and thought you were saying you can listen to a 12-minute podcast in 2 minutes by playing it at double speed. Did the math in my head several times before I realized.

The transcription of the full episode appears to be available from a button next to the audio player on the article, https://www.npr.org/transcripts/376084137

That line about the fathers routine really got to me. I find it a constant challenge to do the daily routine with my completely healthy children. This father got up at 5am, did the morning routine, then did the evening routine, and it seemed to imply that he would also wake up every two hours during the night to turn Martin. He did this for years despite being told that he was really just waiting for his son to die. The amount of love and compassion this guy showed for his kid is something I strive for every day with my own children, but not sure I always achieve.

That you worry about it means you are a great parent.

I wish my father had put an ounce of thought into whether he was a good father.

The world is full of care and kindness: it's about being open to it. When we're disappointed by people close to us, it's important to remember that love is something than originates within, not without.

Is this from http://wisdomofchopra.com/? /s

But seriously, can you explain what you mean by this?

My guess would be that if someone doesn't love you even if you wish very much they would, then thinking about that person is just prolonging your suffering. Just stop. There are seven billion other people on this planet, pretty sure many of them are nice.

But why would any of those many strangers love specifically you? One possible reason is that people reciprocate love. So your best strategy is to become a loving person yourself. And then, one of the people you meet, will return your feelings.

And in the meanwhile, being a loving person already feels better than being focused on your own misery, so this is a bonus. Actually, it would probably be better to simply focus on being a loving person and not worry too much about when people start to return your love. Just make sure you meet many people; and if the strategy doesn't work for a while, change your environment.

With so many good people out there, don't waste your time trying to squeeze some love out of the bad ones. The worst thing you can do to yourself is to remain in a bubble with the bad people, because then it seems like the entire universe is bad. (Oh, and if someone says "I may seem like a bad person to you, but trust me that the others are even worse", they are lying; don't argue with them, but go outside and try for yourself.)

> But why would any of those many strangers love specifically you? One possible reason is that people reciprocate love. So your best strategy is to become a loving person yourself. And then, one of the people you meet, will return your feelings.

Is the purpose of love to be reciprocated? Is it worth loving if it isn't?

Genuinely curious about your thoughts, and not trolling, but this prompted some interesting questions in my head and I was curious what you think.

Humans have needs, and ignoring them probably wouldn't work well in long run, no matter how noble it might sound in abstract. If your needs are constantly frustrated, you will likely lose the motivation to do the noble things anyway.

Then again, there are differences among people with regards to their needs. Like, an introverted person would probably be satisfied with a smaller number of friends; but would probably still want more than zero.

To me it seems like it is important that some people reciprocate your feelings, and then it is not important that others don't. Like, if you love 20 people and 3 of them love you back, it's okay, but if you love 20 people and nobody loves you back, it's not okay. Of course the numbers are made up, may be different for different people, and it also matters a lot who loves you back and who doesn't, how specifically that love manifests, etc.

I would make an analogy that if you are a cook, and you prepare meals for hundreds of people, and then you eat one meal yourself, that can make you fully satisfied. If you cannot eat, you will starve, and it doesn't make it any different for you whether you have prepared meals for other people or you didn't. So while we can make a true argument that feeding hundreds of other people is a great thing, that one meal that goes back to the cook is also important.

Shortly, unreciprocated love can also make you happy, assuming that it is not all that you have. Feeling secure about being loved gives you the privilege that you can now be generous about the love you give, because you don't need anything more in return, and if something comes anyway, it's a nice bonus. Telling people who are currently not loved about how "loving others is better than being loved" is a bit like telling starving people to stop focusing on their hunger so much... the main message it delivers is that you actually don't give a fuck about their sufering.

(Then, there are also people who never feel loved enough, because their mental problems prevent them from having healthy relationships, and trying to give them more love doesn't improve things at all, it just all vanishes in a black hole... It's complicated.)

OK, now I am curious about your thoughts.

Sorry for the delayed response--not out of unwillingness, but busy-ness.

Your original response made me think of a few questions, but I think in the end it boiled down to asking what is the goal or purpose of love? Does it dovetail with a goal of maximizing happiness? (It seems to me no--that love can sometimes work towards our personal happiness and other times against it.)

We often use the word love in a multi-faceted way that would be better served by multiple words. The ancient Greeks had (at least?) four words for love that were roughly differentiated by familial love, friendship love, erotic love, and an unconditional love. They varied, I suppose, in goal, expectation, depth or quality of feeling, et c.

It seems like this last love was the sort that the father shows to his son. There is no real hope of reciprocation, nor yet a sort of surface-level happiness—indeed, it would be a very unhappy business for the most part. And yes, I think to your point there is probably some sustaining relationships there, too. At the same time, I expect there was pressure against him: remove life support, your kid's a vegetable, no hope here, et c. This isn't a love-nurturing environment exactly.

I guess what I'd say is that at least in some cases love seems to work against our personal best interest, not for it, and that our happiness sometimes realigns along different boundaries. I.e., that happiness is perhaps more flexible than we might assume at first, and love perhaps a little less flexible?

Again, just some ponderables. Thanks for the comment.

> We often use the word love in a multi-faceted way that would be better served by multiple words.

It would be nice if we just stopped using "love" as an emphasis for "enjoy". ("I love hamburgers" = I enjoy the taste of hamburgers.)

Getting this one out of the way, it seems to me that the common component in other forms of love is something like "your well-being makes me happy".

Mixing these two creates the greatest confusion, when "I love you" can mean "I wish that you be well" or "I enjoy being with you". Especially because these two do NOT have to be mutually exclusive: you can wish someone to be well AND enjoy their presence and interaction with you at the same time. But you can also enjoy interaction with someone, without caring about their well-being at all. This gives us three combinations of what one could mean by "loving" someone.

And the confusion goes like this: First, it takes some maturity to notice that some people enjoy the presence of other people (because they can get fun or sex or services or resources from them), but don't actually care about those people's well-being at all. (In other words, they "love" other people in exactly the same way they "love" their hamburgers.)

Then, the person who noticed this often over-reacts, and decides that if those two things are not exactly the same, then they certainly must be the exact opposites! It cannot be real love, if you derive any benefit whatsoever from the other person. If you are sexually attracted to them, it cannot be the true love! If you like it when they do something for you, or if they make you laugh and you enjoy that, it cannot be true love either! And even if you do something for them completely with no thought of reward, and you really get nothing in return, but then you suddenly notice that thinking about their happiness makes YOU happy... maybe deep down you were a horrible selfish monster all the time; you only pretended to love other people, but actually did this all only to give YOURSELF the happy feeling. Shame on you!

I wish this was a strawman, but see https://en.wikipedia.org/wiki/Altruism_(ethics) -- a few famous philosophers actually supported this pathological, poisonous idea. It can seriously hurt emotionally fragile people when you expose them to this insanity pretending to be deep wisdom.

"Wishing other people to be well" is a thing; "enjoying interaction with other people" is another thing; and when those two things happen to go together, there is nothing wrong with that. Nothing prevents you from genuinely loving people whose presence also makes you happy in other ways. It's actually easier than way, because one kind of positive emotion prepares the way for other kinds.

> four words for love that were roughly differentiated by familial love, friendship love, erotic love, and an unconditional love.

I'd say the last one is the unreciprocated love, and the first three include some kind of expectation (different kinds). Yes, even a father loving his son expects something in return; at the very least, that the son will not knowingly try to hurt him. But usually there is also some expectation of politeness, of possible cooperation in future when the son grows up, maybe of care for the father when he gets old.

Enough theory. I guess the practical advice is to love others, love yourself, and don't feel confused or guilty when the love is reciprocated.

I believe he is just describing a side effect of being a loving person.

There's two statements in there. To unpoetic them, the first says that if you stop concentrating on the bad things, you'll find that there's an abundance of good things. The second is that while you may allow (maybe unconsciously) others to trigger emotions in you, you are the ultimate origin of your emotions, including love. Your emotional makeup is independent of external factors to the extent that you internalize this.

I said this, because it's something I wish I had heard a long time ago.

You may want to watch the feature on Ernie Johnson, NBA sportscaster. I think it was an ESPN E:60 episode, maybe HBO Real Sports. He has an adopted adult son with very severe mental and physical impairments. Mr Johnson may be the most inspirational person I've ever seen.

Is anybody else reminded of the character from the song "One"[1] by Metallica, and the movie/novel "Johnny Got His Gun"[2]? Granted, that was different in that the situation resulted from a traumatic injury and the man lost his limbs. But the idea of being "trapped in your body" - unable to communicate, aware of your own existence, but basically nothing else - seems similar.

    Darkness imprisoning me
    All that I see
    Absolute horror
    I cannot live
    I cannot die
    Trapped in myself
    Body my holding cell
I remember being terrified of this idea the first time I saw the video all those years ago. I guess I still am. I just had no idea - until now - that a situation like this could result from much of anything other than a major traumatic injury.

[1]: https://www.youtube.com/watch?v=WM8bTdBs-cw

[2]: https://en.wikipedia.org/wiki/Johnny_Got_His_Gun_(film)

I also recall a science fiction take on the theme. It was a short story by Stanisław Lem. There's this mad scientist named Decantor, who killed / immortalized his wife by copying her mind onto an indestructible crystal.

The consciousness persists and the mind keeps on thinking, and it can't die - it's virtually immortal. That's the extra twist here. So, it's capable of surviving for millions of years, likely outliving all life on the planet etc., but at the same time deprived of all senses and cut off from the external world. Even an escape into insanity is impossible (since, I assume, there's no biochemistry that could get out of balance).

The horrified narrator considers it as the worst torment imaginable, whereas Decantor can't see it, as immortality - he points out - has always been humanity's most profound longing.

Stephen King also wrote the short scifi story The Jaunt which is similar.

Basically a scientist makes a stargate type of device. Nonliving things that go through end up fine but living things like mice would either immediately just die or go absolute insane after exiting.

Long story short, the trip is instantaneous. But because they're traveling outside of our normal space time is perceived differently by conciousnes minds. So what seems like a split second to us on the outside things seem almost endless on the inside. Like anywhere from millions of years to the age of the universe. Endless time with nothing but their own thoughts. No body and just white light. Humans they test it out on either also die or end up going all Event Horizon when they exit.

They figured out a work around by knocking people out before putting then through.

Iirc ot’s easy to find online and pretty short. The ending is pretty haunting, so I recommend everyone read it if it sounds interesting.

There's a few black mirror episodes on this theme, search for the "cookies"episodes

roald dahl, of all people, does this in “william & mary”

Another fairly well-known account of locked-in syndrome would be The Diving Bell and the Butterfly, the memoir of Jean-Dominique Bauby (also made into a movie); in his case the precipitating event was a stroke.

I also have to point out one of the most terrifying science fiction short stories ever written, "I have no mouth and I must scream." Search it online and you'll find a pdf somewhere. It's short and definitely worth a read if you aren't faint of heart.


Immediately yes. And a Hitchcock short I saw around the same time. I was young but it did make me say, strangely, until now, do not pull the plug, leave me until the sun expires, I can still recover.

Edit; found the Hitchcock one [0]; I will rewatch; I remember it as being very good.

[0] https://m.imdb.com/title/tt0508134/?ref_=m_tt_urv

DMT is this experience for me. I wasn't afraid of death until I took it. My body was gone, I lost my body and was engulfed in darkness for what felt like eternity. We fear the same feeling of darkness

As a fellow kid of the 90's: Yes.

If curious, see HN discussion from the time of publication:


From a comment at the top of that thread:

Here's a link to the full transcript: http://www.npr.org/2015/01/09/375928124/dark-thoughts and http://www.npr.org/2015/01/09/375928581/locked-in-man


There is video on YouTube where he is interviewed, he still can't speak though but other than that he appears fine. Well, maybe not great he is in a wheelchair too. https://www.youtube.com/watch?v=GBFntsxK-vc

Many people can be great in wheelchairs, too :) https://www.bbc.com/news/magazine-27554754

I clicked this link and was redirect to the 'NPR Choice page'.

The options I had were:

  1. agree to some lenghty tracking and ad terms, or;  
  2. decline and visit the plain text site.
I'm happy with option 2, so I decline, but I'm redirect to the home page.

There's no way to visit this article by substituting 'www.' for 'text.' in the URL, instead you get:

    > NPR.org Text-Only (go to NPR.org graphical version)
    > We're sorry, the page you requested is unavailable. Please go to our Contact page for more information.
So if you had this problem too, see the archive.org version of this article below:


The URL scheme on text.npr.org is different from www. Text.npr.org just uses an "sId" to identify stories but not the headline text like the www site. You can find the sId in the www url immediately after the date.



On a side note, I really like the theory behing NPR's plain text option, but it's only occasionally that it directs me to a plain text version of the actual story. Often, as with this, it redirects me to the homepage. Does anyone know the reason for this? Does the author have to explicitly publish a text-only version?

I don't get that text-only thing either. They give me the choice between ads, cookies, tracking vs text-only; they present it like text-only is the worse option, only for losers, while I very much prefer the text-only version thank you very much. Doesn't look very good maybe, but I don't care and Firefox's reader mode clears that right up.

But then they, as you say, the article I was looking for doesn't seem to be there!? Why do they even ask??

I don't see the text link you are referring to so I can't verify why that is broken, probably on purpose. All stories do seem to have a text only version, including this one.

You can construct the text URL yourself from the www URL, I explained how to do this in a sibling comment: https://news.ycombinator.com/item?id=24475995

I have javascript disabled, and the regular page loads immediately for me with all of the story shown.

The only question, how do you have the energy to browse the web without javascript, when every site uses it for something.

I imagine he either enables once in a while using NoScript, or just bails out. I do not block Javascript for the time being, but nowadays I bail out much more often, because most of what I see on the web, including on HN, is trash or sightly higher then that, but still inconsequential.

Try sometimes to use links -g and you'll see how web can feel like browsing local resources, if you have a decent connection. Some sites will not work, but it kinda works as quality filter. If only links would support tabbed browsing.

Blocking JS is extremely helpful for removing most tracking. I can selectively enable certain JS for specific sites. It takes hardly any time at all to set this up or to engage with this. Plus, it saves a ton of time on page loads.

I look at the pages that other people load, and those bouncing ads, videos, and whatnot.... I simply use a different Internet than others.

There are plugins (at least in some browsers) that let you turn off/on javascript on a site basis. They are very useful.

Quick toggles

> Joan vividly remembers looking at Martin one day and saying: " 'I hope you die.' I know that's a horrible thing to say," she says now. "I just wanted some sort of relief."

> And she didn't think her son was there to hear it.

> But he was.


This story is so encouraging & human compared to rest of the news we read/hear everyday. Thanks for sharing!

I guess I'm a glass-half-full type of person after all, then! This story is horrifying to me. Apparently it's possible to be indefinitely kept in what I can only imagine must be sheer hell, with no way out, and fully aware you're probably looking at decades of suffering. This man lucked out. How many others are supposedly vegetative but actually aware right now?

I suppose the odds are it's not a large number, but still. Time to find out what kind of paperwork I need to file to stop this happening to me.

Enough of these kinds of incidents are now known that I'd imagine neurologists would be on the lookout for the signs. During this time he'd have had plenty of brain activity as opposed to truly vegetative patients. Perhaps if fMRI had existed back then he wouldn't have suffered for so long?

Hmm, glass half empty you mean? I mean yes, it sounds absolutely horrible. On the other hand, he recovered, married, has a child and is living "the dream" (independent consultant doing web/etc). He's also probably _really_ good at meditation. :)

I said this story is encouraging. For all of us who go through daily chores could feel better knowing there is worst that could happen to us and we are lucky to live through with our basic necessities fulfilled. This kind of stories should make us empathetic/(more human) to others knowing what we have.

I don’t know if I agree with that outlook but I can understand the people that like the it could be worse mentality to keep them going. I don’t think I’m any less empathetic for not having your outlook.

It feels weird that no one realized they could hook him up to one of those EEG devices that would allow him to control a computer with his brain activity. That way he could have a very narrow, but nevertheless a channel through which to communicate with the outside world.

In 1991 - 1994? The technology might have existed in some cutting-edge research labs, but certainly not in a day care center in South Africa.

Sure, not then, but by 2005 that technology must've already been available.

They say he wasn't conscious for the first couple of years. So even if they tried at the beginning, they wouldn't have got anything, and then they just assumed he wasn't conscious.

> "I cannot even express to you how much I hated Barney," Martin says.

> Since all the world thought Martin was a vegetable, at the special care center where he spent his days he was often in front of the TV watching reruns of the children's cartoon hour after hour, day after day.

For a young adult with an intact mind... this sounds like hell on Earth.

I love NPR’s “visit plain text” option and I wish more news sites would do that

It's a very nice feature indeed! Only problem is that it redirects you back to the homepage, and it's been like this since the day I first found out about it. So I guess it's on purpose, to make some fewer people use that feature.

Weird, it works fine for me (it redirects me to the article)

Unfortunately it doesn't work.

You can construct the text URL yourself from the www URL, I explained how to do this in a sibling comment: https://news.ycombinator.com/item?id=24475995

If only it actually worked...

There is evidence that psychedelics put people in higher forms of consciousness. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6475593/ Here is a few stories about Ambien, a sleeping pill with psychedelic qualities by those who took it. https://www.newscientist.com/article/dn9215-sleeping-pill-ma... https://www.nytimes.com/2011/12/04/magazine/can-ambien-wake-... They also found music helps those with dementia.

Over the last decade there's been progress in communicating with people who are in a vegetative state by getting them to think of distinct things like swimming or playing tennis to provide a Yes/No response.


> “Scott, are you in any pain? Do any of your body parts hurt right now? Please imagine playing tennis if the answer is no.”


This story hit me hard. I read his book today, its a deeply emotional and worthwhile story.

Some stray phrases in the book led me to search some details of South African history that I didn't have a strong grasp on.

Somehow the various internet wide analytics decided this meant I should see this video:


It probably requires some context (/research) to understand the context on this. (I certainly did). But I found the implications of this video utterly fascinating. There are a really quite large number of layers to analyze in this.

That podcast episode explains something from the 11:20 minutes mark to 11:45 that I did not get from TFA. Namely, who is this Barney that he hated? In the featured article they only wrote:

> But occasionally there were things that elicited thoughts he could not ignore.

> Like Barney.

> "I cannot even express to you how much I hated Barney," Martin says.

> Since all the world thought Martin was a vegetable, at the special care center where he spent his days he was often in front of the TV watching reruns of the children's cartoon hour after hour, day after day.

But in the podcast they use the melody from the Barney & Friends kids TV show and now it makes sense. Before listening to to the podcast, after reading the article I was like "but who is Barney?"

Oh. My. God. I am OLD.

Hating Barney was like a rite of passage for our generation. He coagulated out of the primordial sludge about the time our kids were getting old enough to want to see a purple dinosaur sing "I Love You".


and over

and over again.

I liked the Barney mod for Doom though: https://www.youtube.com/watch?v=gsvdMzfFNdQ

> I liked the Barney mod for Doom though: https://www.youtube.com/watch?v=gsvdMzfFNdQ

Barney Splat[1] was a door game for BBSs back in the day.

[1] https://www.mobygames.com/game/barneysplat

The Barney song ("I love you") was used by the CIA as an interrogation technique. Here's an article about the practice: https://en.m.wikipedia.org/wiki/Music_in_psychological_opera...

It's quite telling that the same things the CIA thinks are good torture material are inflicted on people who have no control over their lives in medical institutions.

If you would not like to be submitted to something yourself maybe you shouldn't do it to people who are in no position to protest?

Barney is fairly widely hated, even by kids who previously watched it. For me it brought an element of humor to this mans terrible experience when I think - He hated Barney so much he was able to escape a coma-like lock-in just to not have to watch the show!

To understand the full horror of Barney, text alone won't do


I thought he meant Barney from The Flintstones for some reason.

A similar story I saw a few months back on reddit is of Jacob Hendel, who also suffered from locked-in syndrome due to Acute Toxic Progressive Stage 4 Leukoencephalopathy.

He's got a website www.jhaendelrecovery.com and youtube https://www.youtube.com/c/JacobHaendelRecoveryChannel/.

It's super inspiring and he regularly provides updates on youtube on his recovery progress.

The most poignant and human part of his retelling, was the stranger's smile while he was waiting in the car. That is what made him start moving away from the darkness.

It's such a seemingly banal action, but so fundamentally human, in which we acknowledge one-another's humanity, and show appreciation for it and ours.

Smile folks. It doesn't cost anything, and it just might be the spark needed to light someone's life.

Interesting that I don't know of this story. For those that want some quick gratification: https://www.youtube.com/watch?v=6SbK6oDBeco.

As far as I know, this story is not as well known in South Africa as one would perhaps expect.

Yeah, I'm still going to sign a DNR order so that if I'm in this situation, that I can have an escape. It's not worth 12 years of being locked in to your body to have a tiny chance of escape. I am so afraid of a situation like this happening to me.

Quite telling that some people see this as a triumph of humanity and your reaction and some others is to make sure you can you end your life if in a similar situation. Martin of course never had that choice to make.

But I think the real point of his story is his message about how important it is to communicate with others, how the depth and content of that communication with others is who we really are. I think a man who was alone with his thoughts for 15 years is very qualified to give us that advice.

This story would have motivated me to make sure the proper people have the proper documents to ensure my plug gets pulled after a couple days. But I already took care of that.

Reading this makes me feel really uncomfortable. I can't imagine being him. This is literally nightmare fuel, except it is real. I hope human technology can soon evolve to a point where things like this won't happen.

Imagine the day we get to have head transplant and people will be able to leave their disabled body? (I know, this case is the opposite). An Italian doctor wants to try it, but many others are criticizing the procedure.

Can you tell me more please? I think they're thinking of doing that with stem cell body creation

Tedx talks of him giving talk https://www.youtube.com/watch?v=WD1IX1AFRZg

What's with the ‘a sentence a paragraph’ style, though? It was a BBC thing before, but I think even they didn't put three words in a separate paragraph.

They don't write stories about the people who don't wake up. Americans prefer sentimentality and inspiration I guess.

Are there more cultures that don't prefer them?

I read the his book "Ghost Boy" many years ago. It's a great read; a heavy and hard one, but I recommend it.

Bonafide divine miracle, if you ask me.

Just because we can't explain fully the phenomenon doesn't mean it's "magics". This guy's case needs to be studied in order to try to find out what made him get better and see if the same conditions would be applicable to other patients suffering from the same ills. Our bodies and our minds are resilient in many ways, we need to find how to enable or accelerate that process.

I don’t know if your name/year accidentally match his. Also it is not unlikely that he has heard of HN as a web developer.

But the possibility gives me joy.


This got a lot of attention on release. If it sounds familiar, you probably already read it.

Thanks for that. I was reading it and feeling a really weird "No this did actually happen" deja vu until you pointed out the date.

Wow. Never gave up!

This condition could be a great use case for Neural Link. To allow the patient to send text messages and control devices.

Ah, yet another Elon Musk invention. Will it work as well as the SpeceX rockets or cave submarine and the promised level 5 self-driving..

I sure hope it works as well as SpaceX and the self driving, both are amazing marvels already. And aren't even complete yet!

I don't know if you noticed, but the SpaceX rockets work extremely well.

But the cave submarine and the self driving do not. GP forgot to add a question mark.

How are the wildly successful and impressive accomplishments of SpaceX comparable to the cave submarine or nonexistent level5 self-driving? One of these things is not like the others.

That is what the comment is saying: will this work like one of Musk's "successes" or like one of Musk's "failures".

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