2:05am November 1, 2012

Early days at the hospital

I found myself lying on my side, feeling dry and brittle. I was facing a window. The window faced the sky, deep blue with clouds. And then things all shifted to the side. Time turned into forever and ever. My body turned into small pieces. Like Cheerios or Tetris pieces or something. And they were dancing through the air making sounds as they went, flying into the sky. Most of the time, that was all I was aware of. Time slowed to a halt. And I wasn’t able to think straight, because all of my awareness was on one thing, and it wasn’t on thinking.

But occasionally I could think. Occasionally I thought things like “Will I ever get out of this?” and “Am I dying?” and “Will I ever see anyone I care about again and will I recognize them if I do or will I be too out of it?” And “How long until I can’t think these questions again?” Not very long usually. They lasted seconds out of the day. Things like this, though, they lasted for lengths of time I couldn’t guess at. All day, a few days, a week?

Night was the worst because you couldn’t orient yourself to anything at all. There were so many strange machines going all over the place and my mind seemed to make them turn alive and scary and dreadful, and time stopped again, long enough to make this into forever, worse than forever, every night was weeks of time as far as I knew. Night was bouncing between several equally awful things. There was the fan, which was alive now, and blew balls and other things around the room at me. There was a web of something that smelled strange and made popping sounds all night. Every time I tried to get out of bed to escape things, this horrible alarm would sound. I didn’t connect the alarm to me, I just connected the alarm to one more rhythm that was terrible. And the bed itself was terrible. And there wasn’t anything in the room that was friendly, they were all about as friendly as an alien abduction.

Sometime, they took me for a bunch of tests. I didn’t really understand what was going on. There were grids hanging in the air that only I could see, and I began to think they were everyone who had died here, somehow consolidated into one horrible existence. An existence as lonely as living in a hospital is, separated into separate rooms, rarely seeing actual people. I got scared I’d end up like them.

Then they wheeled my bed into a new ward. And I didn’t really know it was a new ward at that point. I stared up at the equipment hanging over my bed, the IV pole and all the other stuff attached to it. But I stared up without knowing what any of it was. I’d completely lost the idea of being in a hospital. It was dark everywhere. My bed felt like it was moving and sometimes it felt like it flew out the window around in the sky. The hospital room didn’t look like a room because it was intersected with a dirt garden. I was lying outside in the garden and neon bumblebee-like creatures, pink ones, flew around in my face and tried to eat my eyelashes off. Time did the same thing as before. This was forever.

I had some semi-lucid moments during all this but they all were filled up with terror that I would be like this forever, that this would last forever, that I would die before I was able to tell any of my friends how much they meant to me, or even see them again. Death didn’t always seem horrible, unless it was for some really stupid preventable reason. But I was so terrified that my closest friends wouldn’t know me anymore, wouldn’t recognize me like this, or wouldn’t know how I felt about them and how much they mattered to me. I can’t even write this without remembering it and crying.

I only had one friend who lived close enough to visit. I remember her visiting one time and holding my hands where I stared at the clouds behind her assembling themselves into the ancient Egyptian stories I study a lot of the time, with surprising speed for clouds. I saw gods and statues and all kinds of things, moving too fast to track. It was the only beautiful moment I remember of my hallucinations. I thought she could see it too.

These things… they took forever. My sense of time isn’t the best at the best of times. But each of these things stretched out until it would never seem to end. And I got this terror of getting trapped inside one, even if I died, even if I got better and left the hospital, I still was terrified that part of me would get trapped there.

I remember any of this – any of it – too clearly, and I fall apart. I could make guesses at why but they’d be guesses, and I don’t want to say things just because they might sound right. But my friend keeps trying to tell me it hasn’t been this long since I got out. I was shocked. I thought it was already December by now. (Still having time problems, not that I’m ever good with it.) She keeps telling me that any one element of what happened would be considered traumatic to most people, let alone all of it put together. She thinks if I saw a competent shrink they’d diagnose me with Acute Stress Disorder or something, and that this is why I freak out and cry so much. And that people always freak out more after the event is over, and I maybe apparently didn’t have enough brain working to fully freak out before? Something like that.

I don’t know. I just know any of these experiences cut me the wrong way and I’m bawling. These are not things anyone should have to deal with – not the way they made me deal with them.

It wasn’t just confusion. There was always pain. A horrible sense of disconnection. Nausea (with horrible, uncontrolled vomiting at times, that the hospital was trying to hide from people, sometimes complaining that I did it too loudly, like I have any choice as to how my body sounds when I’m puking my guts out). The general awful feeling you get when you have pneumonia. The general awful feeling you get when you’re being pumped full of antibiotics. And alone. And alone. And alone. In a way that shouldn’t ever exist. Combine those things with the time seeming to stand still, and it was like basically a huge amount of suffering, detached from anyone who could help, for seemingly forever. My friend taught me how to get through it, and it worked, but it was really hard and it did things to me.

I seem to write about this subject over and over again. It’s partly a reaction to what happened in there itself. It seemed like everyone was taking great pains not to allow the reality of this experience to interfere with their lives. What many of them were trying to do to me, and every other patient, is something that’s horrible if you’re experiencing anything this difficult: They were treating us like we were bodies without experiences of the world. Just bodies, nothing more. To treat a body, all you have to do is keep switching the IV meds, flipping you around and cleaning up piss and shit and vomit, and otherwise leaving you completely alone.

I can’t tell you about five weeks in one post, but I can tell you that the delirium changed shape but never went away. At first it was this torrent of awfulness coursing through my brain. Then suddenly I was hearing voices that convinced me of various delusions. And after that was over, I would just get… lost. Like there was fog all around me and I was standing in the middle of it and there was nothing, and I wondered if I was nothing too, and I wondered where everybody was, and I spent a lot of time crying myself to sleep not knowing where I was or what was happening.

And while there were better people and worse people who worked there, none of them were forced to follow any protocol for orienting delirious people and breaking up the delirium. A few of them were nice to me but didn’t know what to do. Mostly they were really busy.

I want them to know – I’m a person again. I’ve always been a person. I was a person when people were busy setting me up in situations that weren’t physically safe for me, because they wanted me to be a name or a number or a single diagnosis and not anything complicated. And they wanted me to be a physical body and nothing more, something they knew how to treat. And I was always a full person, having full experiences, experiences that could have been tremendously reduced in hellishness if people cared enough to put in policies. At minimum. And if more, restructure things entirely so that patients can help each other when that’s medically possible.

I just… I never trusted the medical system, and certainly not a teaching hospital. But this time the way they denied my humanity feels like it’s changed me on a deep level. I want to make it different. I’m willing to work with people, or fight if necessary, whatever. But it has to become different somehow. I can’t stand the thought of people in there facing things like I was or even worse, being treated as if they aren’t right there. Even if they’re dying in there, alone. I’ve seen this. It’s awful. It has to stop.

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