6 ms·

A tumor stole every memory I had – what happened when they came back

344 points by smalera 11y ago

willhinsa 11y ago
This title is poorly worded. The singular 'it' leads the reader to think that the tumor came back, when it was the memories that came back. 'They' or 'it all' (as was in the article's title) would have been more appropriate.
- other_herbert 11y ago
  I thought so too... Very interesting read though... Dementia is something I hope to never experience and this sounds worse.. The knowing afterward about confusion or awkward interactions... My wife and I have a half serious suicide pact in case that does happen Amazing story nonetheless
- dang 11y ago
  Ah, you're right. We did an s/it/they/.
letstryagain 11y ago
I love stories like this. By studying what happens to the brain when something goes wrong we gain a sliver of insight into how the brain works. In this case he was able to store memories but he could not retrieve them. When the cyst was drained he almost immediately gained access to all those memories again. Fascinating!
godzillabrennus 11y ago
Anyone have a copy of the story that works for bad people like me who block ads on iOS? The link on this post is to a summary that asks me to click a link in order to read the full article. Unfortunately the button seems to be non functional for my ad blocking self.
- striking 11y ago
  Archive.is is a magical tool. Use it forever. https://archive.is/IcD1B https://archive.is/IcD1B
  - akx 11y ago
    Unless you live in Finland, where it's 451'ed because of -- as I understood -- a personal grudge its operator has against our country. :)
- pierre-renaux 11y ago
  it works with instapaper, or long press the reload button to open without content block
- uptown 11y ago
  If you hold down the Safari reload icon on iOS you can temporarily disable your content blockers on the active page.
- nkoren 11y ago
  I'm on Android and not blocking ads, but the "read more" button is still nonfunctional. How exasperating!
ionforce 11y ago
Such a fascinating article. 1) It makes the brain sound like a Kafka queue that kept growing but never had any consumers, until his tumor was removed. 2) It's interesting how there was a disconnect between his active consciousness and whatever other process was reindexing/reinterpreting his raw memory data. Sort of a nod to my napkin theory about the brain being a multi process machine. 3) The fact that the memories didn't replay in order kinda makes sense. It's like a natural fact of concurrency; you don't know what order the output is going to show up in, unless you sort the data afterwards, and by sort I guess we mean looking at the raw data and stitching it together (like a binary sort).
- azernik 11y ago
  I think it's better (or just more intuitive, given my interests) to describe the brain as a distributed system than a single multi-proces processing Von Neumann type machine - there are components in different parts of the brain that do work independently and then send the results over the "network". Some network failures and node outages are... not dealt with gracefully.
simcop2387 11y ago
I actually had a similar incident with memory loss some years ago. It wasn't because of a tumor but from severe central sleep apnea, that as near as I've ever been able to figure out had been going on for about a decade and was taking a significant toll on my body and brain. The way he describes the memories coming back to him is much more eloquently put than I've ever been able to manage. I hadn't hit a point where I had lost the ability to reason, but it sounds like the memory loss was comparable. There was a period of about 2-3 years where I just hadn't been able to recall much that happened recently or long ago. I wasn't quite as fortunate (I think) as him with the recovery of memory, there are still people and relationships that I don't fully recall and likely never will at this point, but the things that did come back came back in that same kind of jumbled B before A kind of way. It was incredibly frightening for the first few months like that because memories would just pop into place and I'd realize that I didn't recall them before and feel like I just wasn't me during that time, I was some incomplete version of myself and had no idea that I was missing parts of myself. It's an incredible experience to get those things back but it's awfully frightening looking back onto the times when they weren't there and not being able to help the thought that a large part of you just wasn't there for years at a time, and if you're really the person that was there before, during, and after the whole thing. That did lead to a good deal of depression for myself during some of that, after realizing things that I did that just didn't look or sound like me because of everything I was missing. It sounds like he had a lot of help from his friends and family which was tremendous in getting him to this point. I also likely wouldn't have fared nearly as well without mine.
- panic 11y ago
  It's interesting that both you and the author mention recalling things and simultaneously knowing that you hadn't recalled them before. When you remember something, it rarely brings to mind the specific situation in which you last remembered that thing. But apparently, somehow, you remember that you have remembered it at some point, enough to be startled when you haven't!
  - simcop2387 11y ago
    In my case it was a lot of the memories from things in college, things I knew I didn't remember from classes and things. A few things from the jobs I worked around that time too. I could usually tell it was something I couldn't remember before simply because it didn't fit anywhere for a while, just the middle or end of something that happened and didn't connect anywhere. Sometimes it made me feel like I was going a bit crazy and wasn't sure of what they were right away. Smells and sounds seemed to be the biggest things that surfaced things, sights less so. There were a few times where I'd remember a song I heard during that time and it took me a year or so to figure out what the hell the song was, those in particular drove me the most nuts because I've very little talent for music so until I remember more than a word or two from it I couldn't figure it out. It was actually something that was hard to talk about at first simply because it's so bizarre and unfamiliar that you can't really seem to express it in a way that feels right.
aquadrop 11y ago
I think it's a complete script for an oscar-level movie and I would love to watch it.
- improv32 11y ago
  Check out Memento, total mind-fuck of a film, it's about a man who has short-term memory loss like OP, and to keep the audience on the same page has him the scenes in the movie go in reverse order. Sounds weird but it works VERY well.
  - BillPond 11y ago
    Isn't that statement pretty spolierly?
    - Yen 11y ago
      The plot device, and the reason for it, are established within the first few minutes of the film.
an4rchy 11y ago
Great read! Definitely a weird/surreal experience to have. I'm wondering if there were inconsistencies / mix ups across memories or if they all came back as they actually happened. Right now he's assuming the flashbacks actually happened just as he is seeing them (and correlating with people to confirm), but I'm curious to see if his brain made up or mixed up memories.
hoers 11y ago
I had the same experience. Anybody who had it or is 'interested' please contact me at pigeon@tutanota.com
shakil 11y ago
Reading this it looks like the brain has the ability to discover and integrate memories that exist within it but may not have been organized or indexed properly. The analog I draw is if you were to insert an SD card into a computer and it reads and indexes everything it finds on the card so that from that point on you can retrieve all the files on the card just like the rest of the computer. Now all you need is a way to "inject" pre-formed memories into people, and you would be able to learn a language, or memorize an encyclopedia, or become a doctor instantaneously.
- PhasmaFelis 11y ago
  Well, maybe. Skills are not necessarily the same thing as memories. Memorizing anatomical and surgical manuals will not give you a steady hand or a deep understanding of how much pressure to apply to make a millimeter-precise incision.
sjclemmy 11y ago
Wow. I didn't see that last line coming. Bravo. Can I recommend the book (not the film, which I hear does not compare), 'Before I Go To Sleep' by S.J. Watson. It deals with memory loss in a fascinating way. One of the few books I've read in one sitting.
cLeEOGPw 11y ago
All personal experiences aside, the conclusion is that cyst squeezed hypothalamus which resulted in malfunctioning. Or in short, "Malfunction of compressed brain tissue". What is the reason for that? Are neurons somehow discharged when they are pressed closer to each other? What's the physics/chemistry/biology behind this?
- gerbilly 11y ago
  I'm not an expert but neurons aren't like wires, they send electrochemical signals. You can squeeze a copper wire all you want, short of breaking it, and electrons will still flow. But in neurons, it's actual ions that have to flow for the signal to travel along the axon (Ca and K) Also, communication between neurons is via neurotransmitters, that diffuse in the synaptic gap between neurons, and most of these are relatively large molecules. Restricted blood flow could contribute as well, since it would impair cellular respiration in the neurons as well. Given this, if you squeeze a brain structure, it seems to make sense to me that signalling would be degraded. Edit: A previous version of this comment stated that the ions used for signalling were Na and Ca, that was incorrect, the ions are Na and K.
bechampion 11y ago
I sometimes i think "if this was the last day of my life what would i do , who would i spend it with" And it's all about love , I'd spend it with my family and gf , and maybe write some code or some silly app for the last time. It's important that we keep in mind that life isn't a limitless resource , and "nobody will remember your ppt presentations when you're gone"
aurora72 11y ago
Without further ado: phkillscancer.com
peter303 11y ago
NPR had a related story about a stroke taking away part of the language processing center for a while. After the patient could express themselves again, they report a stillness in the mind during the loss period. Many, if not all of us, think by talking to ourselves in our minds. And this internal voice is something hard to turn off at will as any serious meditator knows.

344 points by smalera 11y ago

This title is poorly worded. The singular 'it' leads the reader to think that the tumor came back, when it was the memories that came back. 'They' or 'it all' (as was in the article's title) would have been more appropriate.

other_herbert 11y ago
I thought so too... Very interesting read though... Dementia is something I hope to never experience and this sounds worse.. The knowing afterward about confusion or awkward interactions... My wife and I have a half serious suicide pact in case that does happen Amazing story nonetheless
dang 11y ago
Ah, you're right. We did an s/it/they/.

letstryagain 11y ago

I love stories like this. By studying what happens to the brain when something goes wrong we gain a sliver of insight into how the brain works. In this case he was able to store memories but he could not retrieve them. When the cyst was drained he almost immediately gained access to all those memories again. Fascinating!

godzillabrennus 11y ago

Anyone have a copy of the story that works for bad people like me who block ads on iOS? The link on this post is to a summary that asks me to click a link in order to read the full article. Unfortunately the button seems to be non functional for my ad blocking self.

striking 11y ago
Archive.is is a magical tool. Use it forever. https://archive.is/IcD1B https://archive.is/IcD1B
- akx 11y ago
  Unless you live in Finland, where it's 451'ed because of -- as I understood -- a personal grudge its operator has against our country. :)
pierre-renaux 11y ago
it works with instapaper, or long press the reload button to open without content block
uptown 11y ago
If you hold down the Safari reload icon on iOS you can temporarily disable your content blockers on the active page.
nkoren 11y ago
I'm on Android and not blocking ads, but the "read more" button is still nonfunctional. How exasperating!

ionforce 11y ago

Such a fascinating article. 1) It makes the brain sound like a Kafka queue that kept growing but never had any consumers, until his tumor was removed. 2) It's interesting how there was a disconnect between his active consciousness and whatever other process was reindexing/reinterpreting his raw memory data. Sort of a nod to my napkin theory about the brain being a multi process machine. 3) The fact that the memories didn't replay in order kinda makes sense. It's like a natural fact of concurrency; you don't know what order the output is going to show up in, unless you sort the data afterwards, and by sort I guess we mean looking at the raw data and stitching it together (like a binary sort).

azernik 11y ago
I think it's better (or just more intuitive, given my interests) to describe the brain as a distributed system than a single multi-proces processing Von Neumann type machine - there are components in different parts of the brain that do work independently and then send the results over the "network". Some network failures and node outages are... not dealt with gracefully.

simcop2387 11y ago

I actually had a similar incident with memory loss some years ago. It wasn't because of a tumor but from severe central sleep apnea, that as near as I've ever been able to figure out had been going on for about a decade and was taking a significant toll on my body and brain. The way he describes the memories coming back to him is much more eloquently put than I've ever been able to manage. I hadn't hit a point where I had lost the ability to reason, but it sounds like the memory loss was comparable. There was a period of about 2-3 years where I just hadn't been able to recall much that happened recently or long ago. I wasn't quite as fortunate (I think) as him with the recovery of memory, there are still people and relationships that I don't fully recall and likely never will at this point, but the things that did come back came back in that same kind of jumbled B before A kind of way. It was incredibly frightening for the first few months like that because memories would just pop into place and I'd realize that I didn't recall them before and feel like I just wasn't me during that time, I was some incomplete version of myself and had no idea that I was missing parts of myself. It's an incredible experience to get those things back but it's awfully frightening looking back onto the times when they weren't there and not being able to help the thought that a large part of you just wasn't there for years at a time, and if you're really the person that was there before, during, and after the whole thing. That did lead to a good deal of depression for myself during some of that, after realizing things that I did that just didn't look or sound like me because of everything I was missing. It sounds like he had a lot of help from his friends and family which was tremendous in getting him to this point. I also likely wouldn't have fared nearly as well without mine.

panic 11y ago
It's interesting that both you and the author mention recalling things and simultaneously knowing that you hadn't recalled them before. When you remember something, it rarely brings to mind the specific situation in which you last remembered that thing. But apparently, somehow, you remember that you have remembered it at some point, enough to be startled when you haven't!
- simcop2387 11y ago
  In my case it was a lot of the memories from things in college, things I knew I didn't remember from classes and things. A few things from the jobs I worked around that time too. I could usually tell it was something I couldn't remember before simply because it didn't fit anywhere for a while, just the middle or end of something that happened and didn't connect anywhere. Sometimes it made me feel like I was going a bit crazy and wasn't sure of what they were right away. Smells and sounds seemed to be the biggest things that surfaced things, sights less so. There were a few times where I'd remember a song I heard during that time and it took me a year or so to figure out what the hell the song was, those in particular drove me the most nuts because I've very little talent for music so until I remember more than a word or two from it I couldn't figure it out. It was actually something that was hard to talk about at first simply because it's so bizarre and unfamiliar that you can't really seem to express it in a way that feels right.

aquadrop 11y ago

I think it's a complete script for an oscar-level movie and I would love to watch it.

improv32 11y ago
Check out Memento, total mind-fuck of a film, it's about a man who has short-term memory loss like OP, and to keep the audience on the same page has him the scenes in the movie go in reverse order. Sounds weird but it works VERY well.
- BillPond 11y ago
  Isn't that statement pretty spolierly?
  - Yen 11y ago
    The plot device, and the reason for it, are established within the first few minutes of the film.

an4rchy 11y ago

Great read! Definitely a weird/surreal experience to have. I'm wondering if there were inconsistencies / mix ups across memories or if they all came back as they actually happened. Right now he's assuming the flashbacks actually happened just as he is seeing them (and correlating with people to confirm), but I'm curious to see if his brain made up or mixed up memories.

hoers 11y ago

I had the same experience. Anybody who had it or is 'interested' please contact me at pigeon@tutanota.com

shakil 11y ago

Reading this it looks like the brain has the ability to discover and integrate memories that exist within it but may not have been organized or indexed properly. The analog I draw is if you were to insert an SD card into a computer and it reads and indexes everything it finds on the card so that from that point on you can retrieve all the files on the card just like the rest of the computer. Now all you need is a way to "inject" pre-formed memories into people, and you would be able to learn a language, or memorize an encyclopedia, or become a doctor instantaneously.

PhasmaFelis 11y ago
Well, maybe. Skills are not necessarily the same thing as memories. Memorizing anatomical and surgical manuals will not give you a steady hand or a deep understanding of how much pressure to apply to make a millimeter-precise incision.

sjclemmy 11y ago

Wow. I didn't see that last line coming. Bravo. Can I recommend the book (not the film, which I hear does not compare), 'Before I Go To Sleep' by S.J. Watson. It deals with memory loss in a fascinating way. One of the few books I've read in one sitting.

cLeEOGPw 11y ago

All personal experiences aside, the conclusion is that cyst squeezed hypothalamus which resulted in malfunctioning. Or in short, "Malfunction of compressed brain tissue". What is the reason for that? Are neurons somehow discharged when they are pressed closer to each other? What's the physics/chemistry/biology behind this?

gerbilly 11y ago
I'm not an expert but neurons aren't like wires, they send electrochemical signals. You can squeeze a copper wire all you want, short of breaking it, and electrons will still flow. But in neurons, it's actual ions that have to flow for the signal to travel along the axon (Ca and K) Also, communication between neurons is via neurotransmitters, that diffuse in the synaptic gap between neurons, and most of these are relatively large molecules. Restricted blood flow could contribute as well, since it would impair cellular respiration in the neurons as well. Given this, if you squeeze a brain structure, it seems to make sense to me that signalling would be degraded. Edit: A previous version of this comment stated that the ions used for signalling were Na and Ca, that was incorrect, the ions are Na and K.

bechampion 11y ago

I sometimes i think "if this was the last day of my life what would i do , who would i spend it with" And it's all about love , I'd spend it with my family and gf , and maybe write some code or some silly app for the last time. It's important that we keep in mind that life isn't a limitless resource , and "nobody will remember your ppt presentations when you're gone"

aurora72 11y ago

Without further ado: phkillscancer.com

peter303 11y ago

NPR had a related story about a stroke taking away part of the language processing center for a while. After the patient could express themselves again, they report a stillness in the mind during the loss period. Many, if not all of us, think by talking to ourselves in our minds. And this internal voice is something hard to turn off at will as any serious meditator knows.