Perception Loss
Last night I had a frightening health scare. Maybe I have been more frightened before but this ranks among the most scary experiences of my life. I am especially afraid that it will return (it happened once, so why not again?).
I will write this as if it is a blog post but I probably should not publish it. One way or the other it is important to me to document this.
Symptoms
The short version is that around 9pm yesterday (2024-04-24) my brain stopped working properly. I lost the ability to perceive certain things:
time perception: I could not distinguish clearly between past, present and future. Events would happen and I would feel a sense of deja-vu. When other people interacted with me I could hear and understand them, and then time seemed to flow closer to normal, but otherwise everything seemed incredibly slowed down. Walking from downtown Kitchener to home felt like it took hours when it was only minutes. This was particularly frightening because I thought I would experience this "forever".
reality perception: my brain was flooded with images of alternative scenarios, and I was not able to distinguish the timeline I usually refer to as actual reality (me living in Kitchener with housemates, having a job in Waterloo) from dozens or hundreds of timelines that were also presenting themselves in my brain. Instead of knowing that a certain timeline was real I had to use reasoning skills to conclude that a certain timeline was probably the accurate one: "Okay, this feels more coherent than others, so it is more likely to be real. Okay, I remember the names of my housemates more consistently than in other scenarios, so this is more likely to be real." For hours and hours I was flooded with these alternative realities. When I had my eyes closed I most often visualized the "reality" of the hospital in Claymation-type scenes and then was chronically surprised when I opened my eyes to see "reality" looked different, and in fact that the rooms, staff, etc did not match what was in my head at all. I was able to listen and pay some attention to what was happening, but the images in my head swirled and swirled.
This was one of the most exhausting aspects of the phenomenon. The best I can describe it is when you are dreaming and not sure whether you are in a dream state or reality. That was happening for every image flashing through my head. Some of the images were abstract and some were more realistic (trees, etc) but did not resemble the reality I have accepted post-event.
dissociation: Intellectually I probably made the connection that I had a body and was using it, but I did not feel embodied and I did not feel as if the one taking those actions was me. This was especially strange because I was able to take some actions (brushing my teeth, calling for help, walking home, even writing on paper) but I had to be very explicit in deciding to do these things, and I lost the sense that I was doing these things to my own body.
balance perception: early in the incident I was able to walk home (even walk upstairs) just feeling that my brain was working bizarrely. But even then I felt as if I was losing my balance, and even though I could stand up I felt like I might fall at any moment. That balance perception got much worse -- apparently it took 15 minutes to get me down the stairs of my house when it was time to go to hospital. Whenever I had sudden shifts of motion I would feel nauseated, and I threw up several times getting down the stairs and more times in the hospital, which was really embarrassing.
My nausea got worse when I opened my eyes and saw reality.
numbness and tingling: when walking home it felt like my right leg was asleep. It often felt as if my right side was tingling.
loss of motor function: I could still move my hands and attempt to speak (and to my shame, I was crying and wailing pretty much the whole time I was incapacitated). But everything felt so slow. The nurses handed me vomit bags (that is, they put bags in my hands) and said I could use them, but I knew I wouldn't be able to. I could barely raise my hands and hold things. Movements felt slow and laborious.
In addition to symptoms there were non-symptoms, in the sense that people expected me to have these things and I didn't:
no pain: I felt dizzy and nauseated and disoriented, but I did not feel as if I was in pain. I would be wailing trying to communicate and people would ask me why I was yelling -- what hurt? Physically nothing hurt. In particular nothing hurt when the symptoms suddenly appeared.
verbal comprehension: I was listening to podcasts while walking home, and I could understand what the podcast hosts and guests were saying, although I was irritated that the podcast guests were taking so long to make their points. That was an aspect of losing temporal perception, I think.
Similarly, when people were talking to me in hospital I could understand them, and it seemed as if they were speaking at normal speeds.
reasoning ability: I bet my reasoning was impaired but it was still functional enough that I knew something weird was happening to me, and I could describe what was going on. Being able to communicate those to others was difficult, but I understood something about my situation.
comfort perception: I was able to sense that I was cold and thirsty, although it took explicit conscious thought to make the connections between those perceptions and how to address them. I knew I felt thirsty and had a dry mouth, but had to remember that to address this I needed to drink water.
emotions: my emotions were on overdrive during the incident, which made things uncomfortable for others. Primarily I felt shame and anxiety. I felt shame for getting other people involved, for using up hospital resources (especially when I was being shuttled between hospitals). I felt incredible anxiety because of the time misperceptions -- I felt that my experiences were going to go on forever, and that this was the rest of my life. I felt anxiety that I would not be able to go to work and that my life would fall apart when I was disabled. I felt anxiety because I did not know what was happening to me.
Timeline
I had been quite sleep deprived the week before. The last night I got 7-8 hours of sleep but the night before I had gotten four. I was tired and knew I was tired, and wanted to get home (but when I got home I was supposed to read and work, not rest).
- 8:00pm? I went to Walmart from my workplace. I bought soap and junk food. Instead of cycling home I walked home eating junk food the entire way.
- 9:00pm? I was downtown just past City Hall on King street when suddenly (very suddenly) everything started feeling weird. I felt as if reality was wavy and I was unstable, so I leaned against my bike as I walked it home. I felt the sense of dissociation, as if I was not in my body. I recognised that something was very strange and hoped I could sleep it off.
- 9:15pm? I think I was home by this time. I looked at the clock once and it was 9:17pm? I managed to get home and lock up my bike and go upstairs and brush my teeth. Every action felt dissasociated and weird. I hoped that sleep would fix this thing but I was unable to lose consciousness. This is the time when the alternative realities in my brain became very acute. I was not able to rest at all. I know this went on for at least 15 minutes and maybe longer.
- Before 10pm: I start thinking I should ask for help. I contemplate how one does this.
- Around 10pm: My housemates get home and I get out of my room and ask for help. They come up to investigate and I try to ask for help more. They ask whether I should go to hospital and I don't know. I tell them that I am worried it is a stroke. They get me down the stairs and I vomit a lot, which they clean up. They get me in their car and I can feel movement, although I had no sense of direction. I vomit again, but thankfully into a bowl and not in their car.
- Before midnight: I am checked into hospital. I do not remember this but apparently I am seen quickly because (a) I am vomiting and (b) I am worried I have a stroke.
- ???: I am seen by people at St Mary's. They conclude I probably do not have a stroke, but they do not know what is going on. They do some stroke test where I squeeze their hands and follow their fingers and they look into my eyes.
- ???: Somebody decides that I need to go to Grand River because they are the stroke specialists. I remember them saying that.
- Maybe 1:30am? I am taken to an ambulance to Grand River.
- ???: I get a CAT scan. They are telling me to be still and I do not know whether I am still enough or not. My perceptions are still swimming at this time.
- Maybe 1:30am?: Somehow I lose consciousness. When I regain consciousness the incident is over. I am still weak and nauseated when I try to move, but I can speak normally, have stopped hallucinating, and have time perceptionb back.
- ???: They make me walk. I am okay enough to get into my clothes and shoes and shuffle-walk. They declare this a great success, even though I do not know how I will make it up stairs.
- ???: A doctor asks me whether I should be discharged or go back to St Mary's for observation. I am indecisive so he decides to send me back to St Mary's.
- ???: Another ambulance ride back to St Mary's. There are questions whether I need to go back into triage.
- 3:00am: The St Mary's doctor sees me and says I should be discharged. I ask what to do if it happens again and he says come in again. I am lucid enough to express skepticism and he says come in anyways.
- 3:48am: I get a handout with the summary of my results. They order a cab for me.
- 4:10am: I am back home. I sleep most of the rest of the day. I feel weak but my perceptions are mostly back to normal.
Health Care System
Interacting with the health care system is never a good time for me, and this was no exception. Even in my distress I could sense all kinds of ways this health care system is so broken. I happened to get the upside of many injustices, but that is because the magic word was "stroke".
Apparently I was seen quickly because I worried I had a stroke. But there were many other people in pain that were delayed because I was using up resources. Apparently there was a backlog of 19 beds.
The dance of moving me from St Mary's to Grand River back to St Mary's was just hospital politics. The final move was especially egregious. Everybody knew that St Mary's wouldn't do anything, but the people at Grand River did not want the liability of discharging me directly. So they put it in my hands, and when I was indecisive they just went with the more expensive option. What a waste of resources.
Unsurprisingly, the hospital staff was short-staffed and grumpy. They tried to be professional with me and had on their "medical worker" personas, but they were clearly upset. I was being a bad noisy patient, and I wasn't actually having a stroke. I was trying to communicate with them and they mostly didn't listen. The only one who listened to my words was my housemate -- and thank goodness, because he clarified a few aspects of my story.
Similarly when they spoke to me directly (in order to do their tests and ask me the same questions they had asked before (I think, unless that was the fake deja-vu again?)) they were patronizing. They really wanted me to open my eyes and shift upwards for some reason.
I think they felt I was on drugs. To my knowledge I was not on drugs, although the thought certainly occurred to me during the experience. If I had not had my housemates to vouch for me I would have been much worse off.
Wow the diagnosis does not reflect my experiences at all. The two diagnoses they had were "stroke" and "vertigo". If this was vertigo then it was a very strange type. There was no mention of what was actually happening even though I tried to articulate "time perception" several times. I guess I cannot blame them for this but it is very frustrating. If it had just been dizzyness then maybe I would not have minded as much. But my inability to perceive time and reality coherently were really scaring me.
There were no COVID protections at all. My housemate tried to put a mask on me but I just vomitted, so the rest of the hospital visit (FILLED WITH SICK PEOPLE) I was unmasked. I recognised this but did not ask for a mask. We will see within a week whether I have been reinfected with COVID.
I think a lot of different people saw me, and the ones who saw me later after I had recovered probably did not believe that anything had happened to me.
Gaslighting
I am so upset because people won't believe that this happened to me. I don't know what happened and don't know how to stop it from happening again. They sent me for very expensive procedures that did not reveal a stroke, and so nobody can find evidence that anything did happen.
This was a real experience and a terribly frightening one, and as of now I am still freaking out because my anxiety is so strong. But to the outside world I was just behaving funny and then it suddenly stopped. I think it may have made the medical people more upset that I suddenly recovered than if I had remained sick.
It is easy to get sympathy when you have an acute medical situation, which is what happened to me. But that sympathy quickly fades when things become chronic, or when you don't get better right away.
I worry a lot about this happening again. Probably the next time it happens it won't happen in the same way, and it seems likely that other perceptual systems could be affected, or my brain will break in some other way. That's really scary too. Will people believe that something is happening to me, especially if I cannot communicate properly?
What Happened?
I don't know.
My best guess is that because I was tired something in my brain either shut off or misfired. Then I lost all those perceptive capabilities, and it got worse until I finally found unconsciousness. Then maybe my sleep processes reset things.
The obvious advice for avoiding this in the future might be "get enough sleep", but I think that won't happen consistently.
Maybe the closest term I can think of for my experience is that I had some kind of psychotic break. But even that feels like the wrong term. It was not as if hallucinations were overlaid on top of "reality"; it was that there were many different versions of reality competing for my attention.
The other analogy that comes to mind is psychedelics. I have never taken psychedelics but this does not seem so dissimilar to the feelings of disassociation people have while tripping. My experience was terrifying with no peacefulness, however, and again people who are tripping seem to hallucinate in the present reality, not with competing realities in their minds.