Altered States - Part 3: Then
This is the third instalment of a 9-part blog series written by Rob.
Trigger Warning: contains references to: psychological distress, sensory issues, out of body experiences and health anxiety.
After my weird half dream, popping moment, I got up quite spooked and felt numb on the left side of my face, between my ear and my cheekbone, then a headache quickly developed. This combination of pains, numbness and weird dream felt very unusual.
I went downstairs to get a drink and try to calm down, but that didn’t do much.
Then I happened to look in the mirror. That’s when I noticed just how strange things had become. It didn’t feel like it was me looking back at myself. I recognised myself. I knew logically it was me looking at my own reflection, but something in the way I perceived the world had changed. It was like I was watching a first-person video game or movie of myself, from inside my own head. I’d only experienced something briefly like it when coming down off anaesthetic and it only last a few minutes. This time was different. It wouldn’t go away.
I knew I was looking at myself. I knew it was me talking when my mouth was saying ‘this is f-ing weird’. I knew it was my own hand that was touching my face in the reflection. It just didn’t quite feel real or like it was me. That’s the only way I can really describe it.
The most literal way I can explain it, is it’s as though a switched had been flicked. In a single moment, the way I viewed myself, my own reflection, the world and reality had changed. It’s like there’d been some kind of spatial or temporal shift in my mind. I was all still functioning, but the way I perceived myself, the space around me and my place in the world, had loosened somehow.
I had a constant, all pervading detached or spaced-out feeling. Not feeling quite present in my body or my consciousness had changed somehow. I felt not quite connected to my own body. I didn’t feel like I was entirely myself or present in the same way I used to be. I no longer quite felt like I experienced reality in the same way I used to. I knew my limbs were my own and still all functioned normally, but at times they didn’t feel entirely connected to me in the same way. My reaction times were and are still as sharp, I hadn’t slowed and I physically felt and touched things the same way.
It was like someone had unplugged or detached something in my brain or slightly detached my brain from my body. I knew my brain was functioning normally. I had no motor or memory problems and to the outside observer they’d probably have no idea something was off. But I just didn’t feel like I was in my own body, feeling almost dream-like and when I’d think back on a day’s events they’d often not feel quite real. Memories felt further out of reach.
It almost felt like a drunkenness or stoned feeling, but without the calm or pleasurable sensation. A little bit like jetlag or a hangover. I felt vacant. Like a veil ha been placed over my eyes and face, separating me from the real world. The feeling was constant. I’d wake up with it and it stayed through the day until I’d go to sleep. Nothing I did changed the spaced out feeling or lessened it over the initial few months. If anything, It felt like the spaced-out feeling initially worsened over time. Not a huge progression, but I didn’t think it was as constant or as severe when it first started. It may have been slightly less noticeable when I’d been immersed in activities or concentrating. Or it may have just been the more I thought about it or consciously registered that it felt odd, the more I noticed it. Like a feedback loop or snake eating its own tail, I couldn’t get out of the never-ending cycle of awareness that fed the anxiety and sensation.
Soon after it all began, I started to notice a number of other odd things. Bright lights sometimes felt overwhelming and at times made my head swim. Fluorescent lights seemed to have an odd effect, sometimes causing migraines. I even stopped going into large supermarkets, as they were the worst culprit. Small repeating patterns on things had a strange effect where it looked like they were moving – patterned wallpaper, bathmats, tiling. Sometimes they had a similar effect to those old 3D pictures where a hidden image would appear from a seemingly random pattern of noise. Oddly, whenever I did them when I was younger, the image always receded behind and away from the pattern. Almost like reverse 3D. In hindsight, I now understand that a lot of these sensations and experiences were my mind and sense being overwhelmed. Not something I’d really experienced before, but it does make total sense. If my mind was struggling to function normally, its understandable that any extreme stimuli – lights, noise, patterns etc. could tip it into a state of overwhelm, which is then hard to switch off.
I also realised that for a month or so before things went very odd, I’d been experiencing unusual clicking in my ears and pressure changes, particularly in the mornings on waking. I also noticed I was having a ringing in my ears at times.
Looking back, I also realise I’d been feeling wobbly or slightly dizzy at times. I never fell or lost balance but felt like my head was swimming occasionally. This seemed to be more frequent at dusk and into the evening when walking outside. I could still jog, on treadmills and outdoors, without falling or losing balance, but seemed to be more aware of my balance. Even when looking up from my phone screen when walking I felt dizzy at times. I also noticed that I tended to look at the ground more when walking or running, probably due to feeling slightly unsteady. One of the other very strange things I remember was that at times when walking, it felt like I was walking on sponges. That’s the only way to describe it. It's like there was extra cushioning underfoot, every step I took felt slightly spongey or cushioned. It wasn’t down to new shoes or extra thick socks. It didn’t feel like I was bouncing or sinking into the ground. It just felt ‘spongey’.
Following the initial moment when it first set in, I developed a headache through the following week and a dull ache in my neck and the base of my skull. Pain radiated up over my head and across my eyebrows. I also had clicking/grinding in base of neck which I wouldn’t normally experience.
After the initial week or two when I assumed the change in perception was down to anaesthetics still in my system and the novelty of the altered state began to fade, I started to worry.
I had self-induced altered states of consciousness in the past, but they were finite. They ended and I’d come back down to earth fairly quickly. This time it didn’t stop. It was there the moment I woke and would be there as I drifted into sleep.
Its such a hard feeling or sensation to describe. Having lived with it now for nearly five years, I’ve found countless ways to try and verbalise how it feels. Some people describe it as ‘like seeing everything through a pane of glass that’s permanently in front of your face and eyes’. Its like my mind or my perception is slightly further back from reality. Like physically one step removed or a few centimetres further back. It’s a bit like I woke up one day and my eyes had been moved back into my head by a centimetre. My vision isn’t any blurrier, the colours and clarity of the world are still the same, its just that if you can imagine looking at the world through clear glass tubes, my eyes used to be almost at one end, whereas they’re a small step further back. That may not make much sense, but there’s not much about it that does.
I do seem to notice the sensation more when looking through windows. It’s almost like my focal point has changed, or I’m more aware that there’s a pane of glass separating me from whatever I’m looking at. Particularly if it’s an older window that has some distortion in it, slightly altering how the world outside looks.
As I said, it’s very hard to describe and unless you’ve experienced it, it’s almost impossible to imagine. When it first started, I kept thinking of the film The Matrix. Great movie, but for anyone with what I now know is called ‘DPDR’, the scenes where Mr Anderson/Neo feels something isn’t quite right, then eventually gets disconnected, are a little too familiar. I don’t really think I’m living in the Matrix and I’m sadly not Keanu Reeves, but the notion that a plug in the back of my head, connecting me to what is deemed reality has been unplugged or slightly loosened, is definitely not entirely unfamiliar.
The sensation is a bit like when you drive somewhere and slightly switch off and go to automatic mode. You get to where you’re going and safely, but you can’t entirely remember the drive and slightly switch off. Only, I feel that all the time and with everything I do.
The detachment is almost like an autopilot or disconnection from the actual process.
Although it can increase and worsen, the chronic base level of derealisation for me is a bit like a constant low-level static, white noise or hum. It’s not like I can physically hear or see anything, it’s more like a background noise that’s always there. An invisible static that’s slightly dulling reality and my interaction with it. Imagine being in a noisy location and trying to have a conversation with someone. That background noise is non-specific but enough to make it hard to connect or properly hear. Now imagine that for your vision, hearing, touch and consciousness all at once. You can function, interact and experience, it’s just lacking clarity and fidelity. Interestingly writing that made me consider my sense of taste and smell and I don’t think they’ve ever felt dulled or blunted in the same ways. Flavours and smells have never dissipated or been harder to grasp. Which is a positive, as I do love food.
One of the things I can safely say I’ve not experienced is the sensation that I was outside my own body, observing myself or watching myself go about my business as though I was watching a movie. I’ve always felt inside my own body, even when it feels like I’m not entirely connected. I’ve always seen things through my own eyes and from literally my own point of view. I’ve never felt like I was having an out of body experience, where I was entirely outside my body as an onlooker. I’ve felt disconnected and as though my body wasn’t entirely my own, but never that I’m outside, looking in. Even when my limbs have felt a bit odd or like I’m walking on sponge, I still feel in my own body.
Although I had no idea this was something other people experienced, I’ve come to understand that this is one of the key differences between what I also now know are ‘Depersonalisation’ and ‘Derealisation’. Both terms constitute ‘Depersonalisation Derealisation Disorder’ (DPDR) and are considered ‘dissociative disorders’. I’ve only ever experienced ‘derealisation’ where everything feels a bit dream-like or not entirely real. The closest I’ve come to depersonalisation is when I would speak, and it would feel like stream of conciseness where I was saying things before my mind had entirely registered what I was about to say. I always made perfect sense, but I didn’t feel like I was.
I also never questioned or suspected I was imagining everything or that it was all a dream. I knew I was in my own body all the time, that I was conscious and awake. I just wasn’t quite connected to my body in the same way, or the connection between body, brain and consciousness wasn’t as clear or as crisp. Like when you watch TV and there’s static or poor signal. Either there’s less clarity in what you’re watching, due to signal interference, or sometimes with digital TV, it pixelates and judders. If you imagine watching something in ultra-high 8K definition, then watching the same thing in old fashioned standard definition. The content is the same it’s just a different, less clear experience.
I’ve worn glasses on and off since I was about 9 and I realised after a year or so that my DPDR felt more pronounced when wearing glasses rather than contact lenses. It’s probably because there really are extra pieces of glass in front of my eyes, along with the imaginary ones that feel like there are.
From the outset, my memories felt further out of reach. They haven’t vanished and can still remember events and the past, but they somehow feel less tangible and have a fog around them. My short-term memory does seemed to have changed though. I always had a fairly nimble mind and could usually recall things easily, but I found myself struggling to remember things I’ve just been thinking of. Not the big important things like my name, my address, how to breathe, how to drive, who I’m speaking with or what about. More like thinking to look something up on my phone, then a few seconds later not being able to remember what it was. Or thinking I needed to add something to my shopping list, then totally drawing a blank. We all have times when something is on the tip of our tongues, but we can’t quite nail what it is, it just feels like that happens more than it used to. I notice that I’ll lose my train of thought much more easily than I used to. I’ll be thinking about something, my mind will get distracted or go off on a tangent, then I won’t be able to remember what I was originally thinking about just a few moments before. It happens to everyone at times, but I never noticed it happening that much to me.
As the awareness of the sensation increased, so did the worry. After my surgeries, hospital stays and the arrival of DPDR, I became so attuned to any bodily sensation that health anxiety became a real problem. Any little twinge or bodily change became potentially life threatening in my mind. Having gone through actual surgeries and procedures, my body was still healing and adapting to new internal structures. My body was actually creating new muscle, tissue and nerve connections, sending entirely new signals to my brain. So I was reacting to things I’d not experienced before. It’s just my mind and thought processes were overreacting and hyper aware.
But to my overly anxious mind, even external things became threats. I found that I would be hyper aware and on edge far more often. Sometimes seeing dark patches in corners of my field of vision and half feeling like something was moving towards me or sudden noises might make me jump or a shrill, unexpected spun would cut through me. I realise now I was just so primed for more terror that it was potentially lurking everywhere. Be it a noise outside, a shadow from a tree at dusk, a car driving a bit fast. In my mind anything was a potential threat to my life.
I think I tended to daydream a lot when I was younger. I’ve always had a good imagination, I’m a very visual thinker and daydreaming isn’t that unusual. Imagining different lives, experiences, adventures. Fantasising about a life of luxury and indulgence, fame, fortune and all those aspirational things you might dream of when you’re young. But perhaps those daydreams triggered a tendency to allow my mind to wander too far, at times to overthink or worry. A good example would be the desert island daydream. I’m sure many people have the same thing ‘what would I do to survive if I was trapped on a desert island’. But the difference between a daydream and worry or anxiety, is when it gets to the stage of not wanting to travel anywhere in case your boat or plane goes down and you really are stranded. Its an extreme example and luckily not one I’ve gone through, but I can understand the thought process that can lead to that point.
When the sensation is at its worst and I’m having a conversation, it feels almost like I speaking in a stream of consciousness. I’d probably sometimes struggle to recall what I’ve just said. I’m normally very switched on and aware and would notice things in my surroundings that many people wouldn’t, so when everything changed, I really noticed. After a few months I started to trust myself more and understand that even though I felt like I may have not been making sense, it was all in my head. To those I was speaking with, I was the same as I’d always been and my discussions, conversations and thoughts were as clear and as understandable as ever.
The only time I didn’t notice these strange changes in how I perceived and interacted with the world, was in my dreams. And that’s never really stopped. The only time I’m not aware of even just a base level of derealisation is when I dream. Which does give me some hope.