Seeing things

One of the symptoms of my ridiculous neurological disorder is that during severe episodes, I sometimes hallucinate. Not like being high or on mushrooms hallucinating- I’m fully conscious and sober and aware of what’s going on. So the first time was terrifying but eventually I got used to it and now, for the most part, it is a manageable (if weird) symptom.*

I used to think about hallucinations a lot. Somebody would get arrested and be in the news and it would turn out they had hallucinated something or other, or it would show up in the plot of House, or whatever. I thought about it because I didn’t understand why it would be a colorable excuse for whatever thing they’d done. I imagined hallucinations to be some sort of wavy, semi-transparent projections, basically like the Leia message to Obi-Wan. I imagined "hearing voices" to be like hearing a voice sort of in the back of your consciousness, narrating or coming up with ideas or singing an annoying song, as we do. Surely one could just think critically about the situation, realize this was not real, and carry on accordingly.

Then I started having actual hallucinations. They are not like that. They look and sound** and feel exactly like real things. I cannot tell the difference between a hallucination and reality (unless the hallucination is a glowing orb floating through the air or something else actually impossible). Most of the time, I see people standing around or walking, or hear a dog barking, or feel someone tapping my shoulder. Things that could, and do, happen in reality. So even though I know I’m hallucinating, I don’t know which parts of the world are hallucinations and which parts are real. I have to get a second opinion if I hear a loud crash. When I repeatedly felt kittens running all over me, jumping up on the bed and then leaving, I had to ask J if they had recently adopted a bunch of kittens or were fostering or cat-sitting or something. (They hadn't and weren’t.)

One time, I woke up in the middle of the night and there was a person standing in my doorway. It was dark, so I couldn’t see the face, and I had no idea if it was someone I knew checking on me for some reason, or a dangerous intruder who had broken into the house, or a hallucination. I froze, and could not figure out a response that would be appropriate for all three scenarios. In the end I threw a tennis ball, to see if it would bounce off the person, hoping that a friendly person would forgive me and that an intruder would not be affected in any consequential way. (It did not bounce off the person, who was a hallucination after all, but did bounce down the hallway, which the housemates found unsettling.)

So, for the most part I don’t hallucinate impossible things that are easy to identify as hallucinations. I see and feel and hear things that might actually be happening. I’m aware that I’m hallucinating, but I have no idea what’s real and what’s not. That is a bizarre and scary and sometimes embarrassing position to be in. I generally just go to bed and hide/sleep until I’m over it, because trying to interact with the world is overwhelming and exhausting.

I start out from an extremely privileged position. I grew up in a stable, safe environment. I did not experience any traumatic events as a child. I did a ton of therapy and got to a high level of self-awareness. And most importantly, I know the hallucinations will stop. My episodes of illness last a few days, and the hallucinations typically only last 8-10 hours. If I wait it out, it will be over, and I will be back in reality for the next while. I have the option of hiding/sleeping until it is over.

If those things weren’t true, I would absolutely be a person who[m] society would deem Crazy and Dangerous. There is no way I would be able to maintain any sort of objectivity long-term; I would abandon the attempt to distinguish between hallucinations and actuality, and I would give up on the idea of interacting with people in a socially acceptable way. I would make everyone very uncomfortable. I would end up in prison, or a hospital, or homeless, or dead.

I think another key aspect of my privileged position, in this context, is that I’m deaf. (Woo! Deaf Gain!) If I hear understandable voices, I know they’re not real. If I hear something that sounds like what I can hear, I can take my hearing aids out to check. But even when I am absolutely sure that they are not real, the sounds are incredibly disruptive and unpleasant. It’s hard to think about other things. If I were hearing, it would be impossible to know which sounds were real, and there’s no way to throw a tennis ball at them to find out. If the voices never stopped (if I didn't know I'd get a respite after a few hours), I would eventually start interacting with them and following directions and believing, despite "knowing" otherwise, that they were real. I would lose track of which people I could admit to seeing/hearing and which people were secret, and I would never be certain that other people could see or hear what I did. I could easily become convinced that there was some sort of implant in my head or that I had some psychic connection to aliens or was receiving prophecies or something, anything, to explain my experience. Humans make up stories to explain all the time; it’s what we do. Admitting to being a “crazy” person is something we fight against, hard. Society doesn’t help; we live in a world that is extremely hostile to disability. The hallucinations feel very real. An extremely improbable conspiracy theory is much easier to believe in than that your brain, your mind, is betraying you to such an elaborate, realistic, extent.

Anyway. This all has given me a very different perspective on people who experience hallucinations and sometimes manage them in socially unacceptable ways. Obviously I do not know what it’s like to have any specific mental illness, or to have been trying to manage it for years and years. My perspective, and my brain’s neural pathways, are built on very different backgrounds. But I have more insight, and a lot more empathy, than I did previously.

I still think about hallucinations a lot, but instead of wondering what they are like, I try to come up with replicable systems for dealing with them. (Other than keeping a bag of tennis balls on hand all the time.) I have some strategies for myself, but I’m not the typical experiencer. It would make things so much more pleasant and less frightening if there were a viable, systematic strategy for managing the situation. (I am aware that psychology and psychiatry have been working on this since they were invented, but I’m not talking about medicine, or something to make the hallucinations go away. I’m talking about something to use to deal with the hallucinations when they are there, while remaining safe and calm.)

I haven’t come up with much, yet. But at least (I think) I know more details about what the problem is, now.

Brains are very mysterious.



*it’s not my weirdest symptom. A day or two before major episodes begin, water starts to taste sweet to me. It tastes like I’m drinking sugar water. No doctor has done anything but raise their eyebrows at me when I tell them this, so I assume it’s not a signifier of some catastrophic neurological event. It is useful, on the one hand, because it gives me some warning. I can do a bunch of shopping and cleaning and laundry ahead of the event. On the other hand, it is very annoying to not be able to just drink a glass of water. Way more annoying than I originally thought it would be.

**Hearing and deafness are complicated, but the gist is that I can hear some things. I don’t just live in silence all the time. What I can hear is mostly not very useful, so I mostly ignore the input except in specific situations. Some of my hallucinations are like what I could hear when I was hearing, and some of them are exactly like what I normally can hear now.