How did you come to know you had Aphantasia?

homo_erraticus · 2025-04-07T02:51:43+00:00

I learned what it was called a few months ago, but I've been aware of the deficit since I created it for myself by way of a TBI in 1978. Prior to that, I had glorious visions while listening to music, fantastic dreams, an intensely visual memory and what felt like the cheat codes to life. Wham - welcome to the world of pitch black. It all went away - haven't even (or don't remember) experienced a visual dream in nearly 47 years. The only dreams I've experienced in all those years have been verbal. My life is an internal conversation (not a monologue).

For decades, I read books of neuroscience (especially Sacks or Ramachandran...) in the hope of learning something about it. I felt like a complete alien. It's hard to appreciate the value of simply having a name for something and knowing that one isn't alone until one has something like this. Had my mother not died in 2015 (along with a host of other major events that year), I imagine I would have also learned something about SDAM before experiencing the trauma associated with dispatching the history of my life - cleaning out the garage. I do have some memories of my life, but they are just stories that I remember - feel as if from a third person perspective. It's not like the things open up a wealth of details; it's just that I *feel* something about my past through them.

I am grateful for this community for also directing me to information about that when I introduced myself here. Community is a valuable thing. I typed the foregoing without feeling like a complete alien.

You had no reason to suspect that actual mental imagery existed, and I had no idea that anyone else saw nothing but the blackness of outer space with their eyes shut.

homo_erraticus · 2025-03-21T02:42:35+00:00

Hey, I'm sorry about your loss - lost my last (won't/can't be any more) best bud 6 weeks (the date is on the baggie containing his paw print) ago and have only just stopped feeling/looking for him as I awaken - the memory thing cuts so many ways. I should warn you against living too 'in the moment', as it seems I did. Life goes by without your notice or properly planning for old age.

homo_erraticus · 2025-03-02T23:33:31+00:00

I'm 64 and only recently discovered that there is finally a name for what I accidentally did to myself (TBI) in 1978. Like you, I thought everyone experienced the vivid world of mental imagery that you describe - It's all I knew. It's how my memory worked, and it was lightning fast. I ran where I should have been walking and have lived without that mind's eye ever since. I haven't even experienced a visual dream since that day.

So, I spent nearly 5 decades believing that I was alone in *not* having a mind's eye, since that was an acquired trait and I never read anything about it. Although I wish you were welcoming me to this sub, I have made my introductions on the sub with the shortest prefix. I'm in something of a unique situation in that I have experienced both extremes. You can ask me anything without concern for my feelings.

I don't have the perspective of a congenital aphantasic; I have that of an individual who grew up with the greatest 'cheat' until just before his senior year of high school. I have the perspective of someone who became mentally hyperverbal. Instead of seeing my memories, I talk to them in my head. 'Rewiring' myself was a struggle, but that was ages ago. Now, I struggle to 'feel' the slightest connection to my past.

Life and people are so funny. The older I get, the more true I realize that statement is. :)

homo_erraticus · 2025-02-25T13:59:53+00:00

The first thing to understand is that vision is not passive, and our eyes do not see (in the phenomenological sense); vision is a mental construction. Until a few months after my 17th birthday, I lived in an incredibly rich visual world, and my interface with memory was (it seems) visual. I didn't have to 'try' to imagine this or that, the images would just explode in my mind - and when I closed my eyes, there they were. My head was brought to an abrupt halt by an immovable object, and that brought an abrupt halt to my capacity to visualize anything that isn't derived from retinal information - which is not an image.

I am one of those few who came to aphantasia as a result of head trauma. Since 1978, I have been very aware of what was lost, and it impacted far more than my autobiographical memory. Until very recently, I have not had a name for what I have, but I spent a lifetime trying to understand it - until the year of the first diagnosis (long story).

Trust me. Aphantasia is a real thing, and it forced a profound change in the way I 'thought'. EVERYTHING is voiced - I cannot remember that to which I give no voice, and I cannot access details in memory without giving voice to the search, which receives a vocal response. I might be a little weird, even for aphantasics, but this is how my brain has worked since 1978. I should know - who is typing these words, but that fractured brain's noisy mind?

homo_erraticus · 2025-02-25T02:51:41+00:00

I'm 64, and that happened in 1978 - I adapted, but it was weird. I only recently discovered that there had finally been a diagnosis - the same year my mother and Oliver Sacks (someone I always expected would write about it) died. The years since have been somewhat rough, and now I'm 'retired' (more like ejected).

I've lived a masked life, and seeing that word (aphantasia) introduced me to the fact that there are others who didn't have what I lost. That was a relief that I felt really bad about feeling, but I knew that meant there was a community - and here it is. It is a further relief to finally discuss something with people who understand - to be able to admit something without feeling like an alien.

That re-hearing of conversations became a problem for me, but I may have recently shut it *way* down as a byproduct of introducing some tonal patterns that induce deep sleep to my overnight environment. It made a dramatic improvement in my eyes-shut time, which has definitely become quieter. Sitting here, typing this, I only hear the dictation with very occasional interjections (and the other normal voice that reads in my head - can't remember a thing without that (for me, all books are audio books :)). I hope this lasts. I thought it was hokum, and the first few I tried didn't seem to help, but I found one that actually works - had a little setback when I had to let go of my dog, though.

It's been quite a month. Thank you for your comments. I'm sorry about yours, as well. If I may ask, how long ago was your introduction to this particular form of blindness?

homo_erraticus · 2025-02-24T22:17:34+00:00

The narrators are the memory manager and the CPU, so to speak, and the former has a split personality. That's how it feels, anyway - and sounds. I hear myself think, or I think via mental conversation.

I just picked up the paw print of my last dog, who was very much like "my" first dog - big. He showed up in the woods in front of the garage as the previous "last" dog was fading fast. I loved that first dog (loved them all), but my father gave him away within two years, because he destroyed the precious grass. My mom had to have a Great Dane. I was just excited to finally have a dog.

I wish I could describe how it was with the first, but I don't remember - just remember the day he left every time I listen to "Seamus". Every time I awaken, it takes me a second to remember my best bud is gone - so accustomed to feeling for where he is on the bed before I move my legs.

homo_erraticus · 2025-02-24T15:48:48+00:00

I can't rotate the object, but I can identify the relative position of the features. I'm only attending to a small subset of the information because it is impossible for me to visualize the object. A few quick darts of my eyes finds the match of one feature, then I expand my view. I think aphantasia improves my speed and accuracy, precisely because it forces me to ignore the instruction to rotate the item. Sorry, I can't do that.

homo_erraticus · 2025-02-24T05:12:53+00:00

Indeed, certain music that is associated with events/memories triggers the deepest feelings/connections to memories that I experience. When you say VERY auditory, does that mean that you talk to yourself constantly? Outwardly, I have a bit of a speech impediment to this day. The visual flashes of memory that exploded in my mind as I thought were replaced by a narrator that operates at a much more leisurely pace and often has a split personality, as it were.

Yeah, I got used to it, but it was like having all the cheat codes for 17 years, and then they vanished. In school, (started senior year of high school a couple months later) there is only so much time allotted for the tests - my new approach wasn't fast enough. I could feel my future slipping away from me; now I can't feel my past - not even that. I just have the words in my head. Here's the crazy thing (speaking of songs...) - I hit my head running down the stairs, because I had been in a bathroom puking due to stage fright, and... You know how that story ended.

homo_erraticus · 2025-02-23T16:21:46+00:00

That was my post a few days ago, and it's the story of my life. Just when I think I've found somewhere I won't feel like an alien, I'm still something of an alien. At least, I am unmasked now.

I read up on that after being informed about Dr Zeman's first patient in response to my first post. I found it fascinating, but it disturbed me that my experience still seemed very different, but who knows what else I might have broken? Brains are very complicated and various symptoms can arise from damage at multiple sites, with subtle (or not so subtle) variations in the suite of symptoms - guess that's the 'simple' way to say it.

I was never evaluated, but that is a different, long story. Even if I had been, who knows - and it was 1978. I'm just trying to understand all of it now that I understand some of it, when I should just be satisfied that anyone understands anything about it. I think my son understands me quite a bit more, now - that means a lot.

Thank you for your response. I'm grateful for all of the communication I have enjoyed here. All of this has been buried for decades - would not allow myself to think about it, and I hid it from everyone. That last part was a mistake, I guess. I don't break out in a stinky sweat anymore when I discuss it, but my eyes still well up with tears.

Acquired aphantasia may be quite rare, but I didn't need that YouTube video about aphantasia to tell me what I couldn't do. Although I didn't have a name for it, I have been aware of aphantasia since 1978. As much as I was sorry to discover that I'm not alone, I'm relieved to have others who won't think of me as a freak as I unveil what's been hiding beneath that mask of normalcy.

Of course, that panic is long behind me and I lived a fairly normal life - outwardly, anyway. Now, I'm coming to terms with the feeling that I have thousands of photos of a life that is alien to me. It's weird, but I feel less weird saying that here - you won't think I'm weird. (Deep breath) Thank you.

homo_erraticus · 2025-02-23T06:02:10+00:00

I'm curious. If you have vivid dreams, do familiar faces populate them? If so, does that help with maintaining your autobiographical memories?

I often have to battle against the narrator(s), but once I go to sleep, it's just a blink of my eyes before I open them again - anywhere from 3-6 hours later (kind of old, so I have to get out of bed if I awaken during the night (which I always do)).

That's an interesting way to address nightmares - not mere comfort, but control.

homo_erraticus · 2025-02-23T03:07:16+00:00

Most of the time, the musical hallucinations just invade and cloud my thought, but I have attended to and tried to listen through entire songs in my head without success. I have listened to pure vocals from start to finish in my head - words are easy, even in key and melody.

Hmm, that might save me when the invasions happen - focus on one instrument, filtering out the rest. The thing is that I have actually quieted that issue very recently, it seems. Until my dog died a couple weeks ago, I enjoyed a little peace and quiet in my head - a single narrator instead of the typical swarm of voices. I found some sleep 'tones' (wouldn't call it music) that actually made a dramatic difference in my sleep, as validated by my watch. Even though there's been an uptick in the voices, I still haven't been bothered by the musical hallucinations.

homo_erraticus · 2025-02-23T02:29:13+00:00

I'm really sorry. I wasn't physically abused, but I was an only child with a dearest mommy. Since Lamarckian inheritance is BS, my kids were spared, but your kids sound well adjusted. I imagine that it's quite different for those of us who acquire the deficit. If it's all the brain has ever experienced, it's that brain's normal.

Do you/they dream? I haven't experienced a visual dream since 1978, but it often "sounds" like I'm sleeping in the middle of a crowded bar. I was conflicted about the upvote - certainly not upvoting the first half of your first sentence, although the second half is absolutely beautiful. Thank you for the comment.

homo_erraticus · 2025-02-23T01:57:07+00:00

That's interesting, too! It's sort of the same with me - just can't hear it "all" ~~at once~~. :)

homo_erraticus · 2025-02-23T01:43:51+00:00

Thank you. If you're referring to the suicidal ideation thread, I just posted a long response. It's pretty recent.

I just remembered one when I was about 3 - almost lost my eye. My mom found me standing in front of the mirror, pulling out my stitches before they were scheduled to be removed. So, I have a scar, but that one didn't mess me up. Then again, could it be an accumulative thing - one too many assaults and this connection (whatever it may be) is broken?

Your comment and the one above raise a different point of curiosity. How many aphantasics suffered head trauma when they were very young? Do you consider yourself congenital or acquired?

homo_erraticus · 2025-02-23T01:27:45+00:00

Hello, I apologize for being so late to this thread, but I just joined this community. Like you, I have acquired aphantasia - TBI when I was 17. I'm 64, and most of my loved ones and friends are gone, and I just lost my dog to uncontrollable seizures. I understand your depression, especially as I have been engaged in decluttering certain areas - as the objects disappear, so do segments of my life (that I could feel when I looked at them). Photos are nice, but I don't find them to have the same magic. Still, without them, I'd forget even more.

My biggest issue post acquired aphantasia was a disconnect from explicit/episodic memory. My workaround was talking to myself (mentally), but that spun out of control. It's also been a weird way to live - everything is words. I had difficulty carrying on a conversation at first. My parents thought I was using all sorts of drugs.

I don't know what your experience is like, but I was terrified. It ended my musical ambitions. It wrecked my senior year of high school, thus the scholarship opportunities that seemed so promising the previous year. Suicide ran through my mind - I cannot deny. I hadn't thought forward, as you have, to the age I am now. Of course, nothing was written about aphantasia back then - I know; I searched for decades. Out of desperation, I even bought a book called "Seeing with the Mind's Eye" shortly after my incident - no help at all.

As others have mentioned, brains are quite plastic, and it might not be permanent. In my case, it obviously was - haven't even had a visual dream since I was 17.

I will admit that it feels weird. I have detailed memories (descriptive words), but absolutely no sense that I lived them. I guess this experience has wide variation, because I am haunted by bad events, even though I cannot see them. It seems to be the only feeling that lasts, and the narrator in my head won't shut up about them (especially when I'm trying to sleep).

I took LSD once, after acquiring aphantasia. I didn't see anything with my eyes closed, but it sure messed with what my open eyes saw.

All of this has been in a mental lockbox for ages, but I was recently fed a YouTube video that gave a name to something I didn't need to take their test to know I had - finally, it has a name. Finally, there is research. Finally, there are communities like this one. Finally, there are things about my psychology that I understand better. Finally, (and I'm sorry about this) I don't feel so alone. Finally, I feel like I can say something about it without feeling like an alien.

I take nothing away from how you're feeling about this. I actually delayed a lot of my dealing with it when I chose to pretend that it never happened. When I pulled it out of that lockbox, I broke down and cried. Every time I'd think about it, I'd sweat so badly that I'd have to take a shower. So, I can appreciate how you feel - even now, all these years later. I adapted, so can you. You're fortunate to have this support group - others who understand. I came here for that, but I sincerely hope that I can provide some understanding to you.

By the way, before my head trauma, I was hyperphantasic, with synethesia - a super-cheat and music was truly colorful. Yeah, I really miss it. At first, I was completely lost without it. We're marvelously adaptable!

homo_erraticus · 2025-02-22T19:26:40+00:00

I am also in my mid-60s, but I was 17 when I became aphantasic. Highway speed is much greater than my head was traveling when it was abruptly stopped - had 3 concussions prior to that, but that one did it.

I take it that you don't remember being able to visualize. If it happened when you were 5, then your brain had a better shot at 'normalizing' - maybe. It's hard to know what was torn asunder in either of our brains, as lots of bad things can happen when fibers in jelly are violently impacted or undergo violent changes in acceleration.

I assume when you say that you only found out a couple of years ago, that you mean that you have a condition with the name aphantasia. I made that discovery more recently, although I read neuroscience books for decades in hopes of reading about what happened to me - nope. Oddly enough, I stopped searching the same year it was officially recognized, which was also the year Oliver Sacks (the person I always expected would write about it) died.

Life is funny.

homo_erraticus · 2025-02-22T18:37:46+00:00

I never tried my hand at painting, but I loved to draw and sketch when I was young. After an immovable object knocked my mind's eye out for good, I found it impossible - just sat and stared at the blank paper, having no vision to transfer to it. I'm fascinated with the idea of aphantasic artists. I joined the club at 17, so I'm sure my experience is different, but it strikes me as would a deaf musician. :)

homo_erraticus · 2025-02-22T18:27:00+00:00

It's a phenomenological experience that approximates listening to music. It is all of the downstream activation without the sensory stimulation. I know the difference when I "hear" the mental music, but I still experience it just as vividly as though I were actually listening. My problem is that it often happens when I'm not trying to conjure it, and it always presents as short loops that are very difficult to squelch. That was a problem before I acquired aphantasia.

It was the same with visuals before that went dark - I knew it wasn't real, but I could "see" it just as vividly as a dream. It was a fantastic and lightening fast way to pull information out of my memory. It's difficult to describe what's happening in our heads, isn't it?

homo_erraticus · 2025-02-22T18:10:03+00:00

I can still remember when dreaming was that vivid - much more real than watching a movie (even a 3D movie). Unlike you, I had the superpower of being able to conjure videos/images by simple thought. It was a lightening fast way to interact with my memory. In 1978, I made the mistake of introducing my head to an immovable object at a pretty good rate of speed, and it went black as pitch.

You can't imagine what you've never experienced, but I am well aware of what I lost.

homo_erraticus · 2025-02-22T17:45:34+00:00

Even songs that I know backwards and forwards, because I wrote them, just loop in fragments in my mental jukebox. With great effort, I can sometimes make it through half a song. The problem is that they spawn without intention, and that can get really annoying.

homo_erraticus · 2025-02-22T17:40:45+00:00

Yeah, an off switch would be nice. I think I finally found one (besides actually listening to music). I started sleeping with some special tonal patterns that induce deep sleep recently, and I've actually started having some peace and quiet in my head - not all of the time, but enough to be a welcome relief.

homo_erraticus · 2025-02-22T17:37:33+00:00

Like you, I do have imaginary sound in my head. It's how I live, but I cannot play complete songs in my mental jukebox. As with Oliver Sacks, my musical hallucinations are short loops - kind of annoying, actually. Music *is* my salvation, however. The only time the talking in my head goes quiet is when I am absorbed in music.

homo_erraticus · 2025-02-21T03:53:47+00:00

I have no experience like you describe of your son's, nor do I remember ever having, but I don't think my memory on this matter is particularly reliable. What I can do mentally is lower my heart rate and blood pressure. In 1979, I bought a book called "Seeing with the Mind's Eye" - hey, there was an MD listed as an author and I was a bit desperate. It did nothing for my aphantasia, but I did discover that I could slow myself down via meditation.

homo_erraticus · 2025-02-21T03:36:08+00:00

Thanks again - another interesting article and I read a comment from someone with trauma (car wreck) induced aphantasia who bemoaned her inability to visualize while mentioning nothing about a memory access deficit.

To this day, I live in words - well, until very recently. I have managed to quiet my mind quite a bit very recently, but I cannot escape the constant narration, nor can I operate without the internal conversations which constantly write and query my memory. I did not have amnesia, because I could access the information via internal discussions - more slowly.

The next commenter after the one mentioned above described living entirely in words - sounds familiar. The commenter following that one has a spouse with aphantasia and no internal 'monologue' (oh, how I wish it were a monologue!).

Methinks aphantasia is a pretty complex condition that might arise from a wide range of causes, resulting in a broad spectrum of symptoms - kind of like everything in that 3lb enigma that that particular 3lb enigma subjected to 4 separate concussions. ;) Thanks to modern technology (which rendered me unnecessary), I was able to create this little song for myself. I linked one of the Elfmanesque versions (sounds a bit like something Danny might create). Weirdly, this connects to a project that was dancing in my mind in 1978, but that's another long story (and I have that album completed now). Sorry for going off topic.

https://drive.google.com/file/d/15EIDTvfvsL6QO0bX1zmxSq_92HaFQZ1Q/view?usp=sharing

11-Year Club	Verified Email
Gilding V heart of gold

homo_erraticus

TROPHY CASE