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.<p>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was no way to tell if I had that experience during coma or during the time the - just short of od doses - drugs were withdrawn.<p>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.<p>This was 10 years ago and as you can see it still effects me deeply.
I listened to the whole podcast about Martin.<p>His family never gave up on him.<p>He was non-responsive for more than 11 years.<p>For most of that time, he could hear and understand.<p>Because he couldn't communicate, his life was a joyless experience.<p>Sometimes his carers were careless with him, hurting him. He couldn't respond. One nurse abused him. He couldn't respond.<p>After many years, his mother told him she wished he would die.<p>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."<p>After years in this very dark place, one day he decided he'd had enough.<p>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.<p>Still, he couldn't move his body.<p>They'd sit him in front of the TV to watch Barney. He hated Barney.<p>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?"<p>He embraced darkness and endured his own thoughts, moving through them, gaining self-understanding.<p>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.<p>His mother bought him a joystick. It took him a year to learn how to use it.<p>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.<p>His face hurts from smiling so much.
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:<p>> 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.<p>Edit, because this is still floating near the top: It's an <i>older</i> article, and has been released in text transcript form after all:<p><a href="https://www.npr.org/2015/01/09/375928581/locked-man" rel="nofollow">https://www.npr.org/2015/01/09/375928581/locked-man</a>
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.
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.<p><pre><code> Darkness imprisoning me
All that I see
Absolute horror
I cannot live
I cannot die
Trapped in myself
Body my holding cell
</code></pre>
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 <i>other</i> than a major traumatic injury.<p>[1]: <a href="https://www.youtube.com/watch?v=WM8bTdBs-cw" rel="nofollow">https://www.youtube.com/watch?v=WM8bTdBs-cw</a><p>[2]: <a href="https://en.wikipedia.org/wiki/Johnny_Got_His_Gun_(film)" rel="nofollow">https://en.wikipedia.org/wiki/Johnny_Got_His_Gun_(film)</a>
If curious, see HN discussion from the time of publication:<p><a href="https://news.ycombinator.com/item?id=8864791" rel="nofollow">https://news.ycombinator.com/item?id=8864791</a><p>From a comment at the top of that thread:<p><i>Here's a link to the full transcript: <a href="http://www.npr.org/2015/01/09/375928124/dark-thoughts" rel="nofollow">http://www.npr.org/2015/01/09/375928124/dark-thoughts</a> and <a href="http://www.npr.org/2015/01/09/375928581/locked-in-man" rel="nofollow">http://www.npr.org/2015/01/09/375928581/locked-in-man</a></i><p>and,<p><i>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.
<a href="https://www.youtube.com/watch?v=GBFntsxK-vc" rel="nofollow">https://www.youtube.com/watch?v=GBFntsxK-vc</a></i>
I clicked this link and was redirect to the 'NPR Choice page'.<p>The options I had were:<p><pre><code> 1. agree to some lenghty tracking and ad terms, or;
2. decline and visit the plain text site.
</code></pre>
I'm happy with option 2, so I decline, but I'm redirect to the home page.<p>There's no way to visit this article by substituting 'www.' for 'text.' in the URL, instead you get:<p><pre><code> > 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.
</code></pre>
So if you had this problem too, see the archive.org version of this article below:<p><a href="https://web.archive.org/web/20200914175634/https://www.npr.org/sections/health-shots/2015/01/09/376084137/trapped-in-his-body-for-12-years-a-man-breaks-free" rel="nofollow">https://web.archive.org/web/20200914175634/https://www.npr.o...</a>
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?
> 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."<p>> And she didn't think her son was there to hear it.<p>> But he was.<p>Daaaaamn.
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.
> "I cannot even express to you how much I hated Barney," Martin says.<p>> 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.<p>For a young adult with an intact mind... this sounds like hell on Earth.
There is evidence that psychedelics put people in higher forms of consciousness. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6475593/" rel="nofollow">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6475593/</a>
Here is a few stories about Ambien, a sleeping pill with psychedelic qualities by those who took it. <a href="https://www.newscientist.com/article/dn9215-sleeping-pill-may-rouse-coma-patients/" rel="nofollow">https://www.newscientist.com/article/dn9215-sleeping-pill-ma...</a>
<a href="https://www.nytimes.com/2011/12/04/magazine/can-ambien-wake-minimally-conscious.html" rel="nofollow">https://www.nytimes.com/2011/12/04/magazine/can-ambien-wake-...</a>
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.<p><a href="https://montilab.psych.ucla.edu/wp-content/uploads/sites/49/2015/11/Naci_etal_2012_BCI_DOC.pdf" rel="nofollow">https://montilab.psych.ucla.edu/wp-content/uploads/sites/49/...</a><p>> “Scott, are you in any pain? Do any of your body parts hurt right now? Please imagine playing tennis if the answer is no.”<p><a href="https://www.theguardian.com/news/2017/sep/05/how-science-found-a-way-to-help-coma-patients-communicate" rel="nofollow">https://www.theguardian.com/news/2017/sep/05/how-science-fou...</a>
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:<p>> But occasionally there were things that elicited thoughts he could not ignore.<p>> Like Barney.<p>> "I cannot even express to you how much I hated Barney," Martin says.<p>> 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.<p>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?"
This story hit me hard. I read his book today, its a deeply emotional and worthwhile story.<p>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.<p>Somehow the various internet wide analytics decided this meant I should see this video:<p><a href="https://www.youtube.com/watch?v=guLmA6dWKes" rel="nofollow">https://www.youtube.com/watch?v=guLmA6dWKes</a><p>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.
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.<p>He's got a website www.jhaendelrecovery.com and youtube <a href="https://www.youtube.com/c/JacobHaendelRecoveryChannel/" rel="nofollow">https://www.youtube.com/c/JacobHaendelRecoveryChannel/</a>.<p>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.<p>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.<p>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: <a href="https://www.youtube.com/watch?v=6SbK6oDBeco" rel="nofollow">https://www.youtube.com/watch?v=6SbK6oDBeco</a>.<p>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.
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.
Tedx talks of him giving talk
<a href="https://www.youtube.com/watch?v=WD1IX1AFRZg" rel="nofollow">https://www.youtube.com/watch?v=WD1IX1AFRZg</a>
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.