When your mind's eye is firmly shut
After writing about memory, a friend got in touch and told me something incredible
Thanks so much for reading and getting in touch about by memory story last week. I had no idea my forgetting Rob Schneider would resonate so much! To be clear — I haven’t been diagnosed with ADHD, but things point in that direction. It’s a journey of understanding I’m just beginning.
Lots of you commented about your own experiences and it made me feel more, well, sane. Sam sent me this:
“Besides memory, the effects on sense of time are intense for non-neurotypical people. There’s only now, or not-now. Sleep patterns bounce all over. You simply can’t follow a 9-5 schedule. It can make the smartest people struggle in school. You get beaten down for being lazy, a disappointment, careless and selfish. I’ve never had health insurance in the USA and have no treatment. The only things that work like medication are cycling (I’ve read it has clinically proven results, other sports don’t) and adrenaline rush experiences. This year has been a struggle with being separated from experiences I needed, but already working from home helps to weather it. I’m glad to see recognition about this stuff.”
Raoul told me it’s been a lifelong battle for him:
“I just wanted to thank you for putting yourself in a vulnerable position and sharing your thoughts/suspicions about ADHD publicly. I was diagnosed with this nearly two years ago, following an intense period of professional, personal and relationship upheaval where my job, career and marriage were all in jeopardy. I found solace in the diagnosis — not as an excuse for shitty behaviour or neglecting my duties, but as an explanation for why I found seemingly simple things so fuckin’ difficult.
One thing that a lot of people don't realise about ADHD is that other mental issues (most commonly depression and anxiety) are often present. Thankfully there is a growing community of diagnosed folk who are generally compelled to offer support, share experiences and be open about their struggles — and I’m at a place now where I've got a solid support network in place, a very good therapist and a suite of strategies that help me out.”
Finally, I wanted to share what Adam had to say:
Great timing. I’m booked in for a diagnosis with a psychiatrist next week. Really loved this article. I found it very relatable. The reason why I’m seeking professional help is that I’ve realised my behaviours negatively affect work and home.
With work, I was retrenched from my last role. I felt cherry-picked because the manager regularly brought up that I look around the room while people talk to me. I also forgot details or lost interest in tasks (I have a terrible memory too). With ADHD there’s a thing called hyperfocus — my manager found it rude that he’d be talking directly to me but from my perspective, nothing was happening outside the flow (or rewarding thing) I was in. The manager had it out for me and it felt like there was nothing I could do to make things better.
With home, it’s mainly hyperfocus. My wife thinks I ignore her intentionally, which hurt to hear when it doesn’t line up with your self-perception. There are also annoying quirks like forgetting: groceries; why I walk into rooms; doing chores; paying bills. Me being unreliable with those things is not laziness. Laziness is on purpose.
Despite all that, I like who I am. I think my (what I suspect are) ADHD behaviours are what makes me great at my job. There are certainly pros to ADHD. However, when some of these unintentional behaviours affect your personal and professional relationships, then it is worth seeking out help.
Adam actually just emailed me again, as I was about to send this newsletter out. “The psychiatrist confirmed it. I start on medication next month which should help with my focus. There’s also small things like putting up a whiteboard at home which can help, like not forgetting to do a chore.”
I asked Adam, Sam and Raoul if they’d be happy with me sharing their experiences — thanks so much for saying “yes”.
And then I heard from someone else — my friend Kate. She’s usually found in Berlin, and it’s been a few years since I last saw her. We went to a metal show at The Spandau Citadel, which is big castle. Europe, huh?
Kate shared something with me that kinda blew my mind, and so I asked her to write about it. To cut a long story short — I can close my eyes at any moment during my day, and imagine that gig we saw. I can see the stage, the castle and the band throwing themselves around on stage.
“Imagine black. Not a black room or a black piece of paper. Just black. Just nothingness”
by Kate McCarten
Just over a year ago — before the apocalypse officially started — I had taken my annual escape from the grim winter in my adopted home of Berlin and returned for a few weeks to my sunny kāinga tupu, Aotearoa New Zealand. I had recently read an article about a woman who doesn’t have a stream of consciousness. As in, she doesn’t think in words. She doesn’t have a voice in her head. It had blown my mind and so I started telling my sister about it. She immediately interrupted me, as sisters are prone to do.
“Oh my god, yeah I know about this—that thing where people can’t visualise stuff, right?”
Wrong. But wait, what are you talking about now?
My sister began explaining that there are some people out there who don’t have a mind's eye; who don’t see pictures in their head when they’re thinking. And that blew her mind. The more we discussed it, the more confused I got. It eventually dawned on both of us why I was so confused: I am one of those people. I don’t have a mind’s eye. I don’t see pictures in my head when I’m thinking. And what’s more, I’d never even realised that anyone could do that.
I’d accidentally discovered I had aphantasia – all thanks to a chance conversation with my sister.
It took me 31 years to discover this very fundamental part of myself.
Aphantasia is the inability to visualise mental images. Most people who have aphantasia are also unable to recall sounds, smell or sensations of touch. That’s me. I can’t do any of it. Never have, never will. Put simply: my imagination is blind.
There are a lot of mind-bending things about aphantasia. But the thing that amazes me most is that it was only officially “discovered” six years ago by a guy called Adam Zeman. Professor Zeman was referred to a patient who’d lost his ability to visualise after a heart operation. Before the patient had heart surgery, he had a vivid, visual imagination just like most people. Afterwards, he couldn’t picture anything.
Professor Zeman began studying this case and after talking to different people, quickly realised that this was not unique to this one patient. If Zeman hadn’t had been referred to a patient who’d had this drastic shift in the way they perceived the world – and hadn’t panicked about it – we’d be none the wiser. And so he coined the term aphantasia. Because the identification of the condition is so new and the research is still so scarce, no one really knows how many people have what I have, but estimates range from 1-3% of the population.
If you want to know if you have aphantasia, this is good way to find out.
In the year since I found out I have aphantasia, I’ve had many discussions about it with friends. Because most people do have a mind’s eye, the idea that anyone doesn’t seems to be an extremely hard one to grasp. It’s almost impossible for our brains to think about how a different brain works; we are so limited by our own experience. So let me try to break it down for you a bit. Think of the person you love the most in your life. Think of the curves of their face. The colour of their hair. The way they smile. How they look when their face breaks into a laugh. You have a picture of all this in your head as you’re reading this, right? Well, I don’t.
I can’t see what things look like, or hear what things sound like, unless I’m actually seeing them with my eyes or hearing them with my ears. But – and this is the part that is hardest to explain – I still know what things look like. I can still remember things. I still know what my bedroom looks like when I’m not in it. I know what a tree looks like. I know what my mum’s voice sounds like. I can close my eyes right now and I know where the couch is, where the bookshelf is, where the TV is. But I can’t see them. I just know.
A metaphor I read on Reddit once explained it better than I can. Think about it like a computer with the monitor switched off. All the programmes are still running, all the information is still there, you just just can’t see it.
So how had I lived 31 years without realising my brain and imagination doesn’t work like everyone elses? I’ve had many long and repetitive and exhausting conversations about this, and I still don’t think I’ve ever been able to explain it satisfactorily. I guess the only thing I can say for sure is that I just assumed everyone’s brain thinks in the same way mine does. Don’t you?
But as soon as I realised I had aphantasia, things I didn’t even realise didn’t make sense before suddenly started clicking into place. Why I never remember people. Why I need to write words out on a piece of paper when people ask me how to spell something. Why I never really understood why people were disappointed about the casting for the Harry Potter movies because the actors didn’t match how people pictured the book characters in their head!
And there are a lot of concepts I always vaguely assumed were just hypothetical turns of phrase or story-telling tropes that I now realise are actual real things people’s minds do. Daydreaming. Picturing the audience naked when you’re public speaking. Flashback sequences in movies (memories are actually like that?!). Imagining yourself in your happy place to help calm down. Not being able to get the image of Trump’s mushroom dick and yeti pubes out of your head.
I’ve never had any image in my head. When I’m reading, I can’t see the world the author is writing about. When I’m recalling memories I’m just recalling what I know happened, not what I saw happening. When I close my eyes, I just see black.
I know it’s hard to comprehend. It’s hard for me to comprehend that most people can see things in their mind. But at least I have a point of reference: I can see things with my eyes, so I can understand what being able to see something is like. The only way I can try to explain it to people without aphantasia is to tell you to imagine black. Not a black room or a black piece of paper. Just black. Just nothingness. And hey, whether or not you can picture that, welcome to my world.
People often ask me if it makes me sad. It’s hard to mourn something you never had, but it does feel like I’m missing out on something. Reading books would probably be a lot better. My sister says reading for her is like watching a movie in her head. That sounds pretty fun.
It would be nice to be able to recall the faces of the people and places I love, especially during the never ending nightmarish hellscape of a Berlin winter during lockdown. And yeah, sometimes if I think about it too much I do feel a bit sad about it. But I think that’s the case with everything, right? And there are some positives to having aphantasia. At least I can’t picture Trump’s toad dick.
There you have it. Aphantasia. If you’re curious about your own mind’s eye, it’s worth taking a look at that website Kate mentioned.
A big part of what is so unique and utterly frustrating to me about being human is that we are trapped in our own body. To be more specific, we are trapped in our own brain. Until Elon Musk implants a chip in our mushy upstairs tissues that may eventually allow us to throw our consciousness into whatever body or node we want, we’re alone. Totally alone. Sure, people numb that knowledge with drugs and alcohol, or pretend it’s not true by falling in love, or by endlessly distracting themselves by collecting obscure trading cards. But Donnie Darko got it right: every living thing dies alone. Yeah yeah I know, emo kid over here.
And part of that deal is that it’s very hard to know how our thought processes and ways we perceive the universe compare with each other. For all I know, my brain is a raging, screaming psychedelic nightmare compared to yours. Or vice versa! We will never really know.
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I think that’s why Kate’s story blew my mind. I’ve known her for years. Not for a moment did I imagine she was experiencing life and memory in such a vastly different way to me. I can’t top that story, so I’m going to share a song I can’t stop listening to. This is Arab Strap, and they just put out their first album in 16 years. And I adore it.
Talk soon. If you want to share this particular newsletter with someone you think it might help, it’s: webworm.co/p/aphantasia