7:19am October 14, 2013

Ghost world, part one: in the hospital

This is the first of two posts about the long term effects of my delirium experiences last fall.  Here I’ll be talking about the delirium part, not much of the illness itself.  Most people already know I spent about five weeks in the hospital from pneumonia and gastroparesis.

I… Don’t know where to begin.

I’ve been realizing I never got over what happened last fall.  It feels like there’s a dark hole inside me where I still feel like I’m sitting at the bottom of a well, and I can’t even see the world up there but I know it’s there. But the rest of me very carefully tiptoes around that part of me and says it’s not there because it hurts too much.

And my friend says maybe talking about it would help. That I need to learn how to remember it without either pretending it didn’t happen, or getting sucked into it.

I don’t know.

So for those who don’t know. Last fall I had stopped eating anything but broth, and got really weak, and then aspirated stomach fluid and got  pneumonia.

I knew something was wrong because I had had aspiration pneumonia before. But this time it showed up on the x ray the first day. And it felt awful the first day. Like the way the third day normally feels, the day the pneumonia usually sets in for me. Only this was happening too fat and it only got worse.

And then I got so tired I was too tired to be scared. And my friend saw me in video chat and started crying. And I realized death was in the room.

Death looks pale white.  And it has a gravitational pull. It doesn’t just show up when death is imminent. It just shows up when death could happen. My friend ant I recognized it because we’d seen it before.  It’s like it just sits there. It doesn’t do anything spooky. In fact it is very benevolent.  But if you want to keep living you have to fight your way away from it.  But first you have to be strong enough.  Death first shows up when you are getting weak and spiraling closer to it.  And even if you escape it now, you’ll never escape it forever.

But it makes you want it.  Not in the sense of suicide.  But in terms of… You don’t even have to know it is death you’re seeing.  It just sits there.  And you want to rest so badly. You want to rest so badly that your body winds down, breathing won’t be so hard anymore, all this work your body does to fight the inevitable entropy, you don’t really need to do it anymore, you could be free of the energy it takes to make your heart beat and your organs function and your muscles move and your lungs melt oxygen and…

Then you have the OH SHIT moment when you realize what you’re being talked into.  Only you have to have the strength to resist. And you may not have the strength to resist.

I couldn’t tell the doctors I just saw death.  Some experienced and wise doctors know what that means but a lot would take you literally.  So instead I told them how I had such severe lethargy I could barely move or function and the doctor had said to go to the ER if that happened.  They took some x rays and admitted me.

This is where the traumatic part begins.

They didn’t want me on their ward.  They didn’t want to take care of me at all. I was not a heart patient just an overflow patient.  They liked a quiet ward and I was vomiting uncontrollably.  They didn’t realize that vomiting uncontrollably plus myasthenia (causes muscles to weaken with use) plus pneumonia is a good way to die.  I was completely alone in my room when I had to tilt up my bed, curl up in a ball on the head of my bed, and point my head downwards so I wouldn’t aspirate further.

They didn’t yet believe I hadn’t been eating, because I was fat.  They see me as having pneumonia and forgot my additional disabilities.  I shit the bed because I was so weak and all I remember them saying was “OMG she can’t do that or she’ll get used to it and she’ll never use a toilet again!"  I forgot, I’m DD and therefore an infant in disguise as an adult.  Who the hell WANTS to lie in their own shit?

I dimly remember, while vomiting, someone throwing open my door and screaming, "IF YOU LET HER DIE I’LL HAVE EVERY ATTORNEY IN BURLINGTON IN THIS PLACE!” Apparently one of my friend’s staff had come to check on me and was appalled at whatever she found.

And then I remember the worst part.

Delirium is too nice a word for it.  Try, having my brain torn to pieces.  It was not just hallucinations.  It was also this fragmentation.  Like my brain didn’t have the ability to be fully “on”, so only parts of me were on at once.  Not enough to be lucid except in occasional snatches.

I became more lucid if someone talked to me and engaged my attention, but nobody did that.  They just came in every few hours to change my IV bag.  They treated me like I didn’t exist at the very time when I most needed someone to affirm my existence.

But it isn’t just for emotional reasons that this is important. The kind of delirium I had is called quiet delirium. Because you don’t thrash around and yell, you just curl up in a ball and fall apart. It’s also the most dangerous type of delirium and has the highest mortality rate.

Delirium can be prevented or reduced by human interaction. I had none. This put my life in further danger. They seemed annoyed at my very existence, they weren’t going to encourage me to exist.

So I have this memory of endless time.  So endless it still feels in many ways as if it has never ended.  In all this time, time stretched out into infinity.  And I was alone.  Not just alone from others but alone from myself because I only existed in fragments.

The literal memories I have are confusing at best.  There was this thing that felt like a grid full of ghosts of people who died in the hospital.  I flew around with them throughout the entire hospital, to places you can’t see with your eyes.  One afternoon, I spent the whole afternoon watching my body disintegrate into pieces of light that flew out the window.  During one lucid moment I thought maybe this was death, but it wasn’t.  I remember some kind of pink bugs eating my eyelashes all night one night.  Another night I was tossed between the fan at one end of the room, blowing squares all over, to this endless trellis over my bed with plants and other things growing. All night.

Delirium is monotonous and endless.  I never normally get bored, but delirium involved a boredom so intense it drills all the way to the base of your soul.  And a loneliness equally intense even though I rarely get lonely either.  But when I was delirious it felt like I was in an enormous dark room.  A room where everything was grey and monotonous and stretched out forever. And I was the only person in that room.  And I had always been there.  And I would always be there.  And nothing ever changed and nothing ever would change.  And there was a searing pain throughout my body and mind alike, 9.5 on the pain scale easily, just far enough from ten not to pass out.  Endlessly.  Forever.

Then there was the period when I was visited by people.  They looked absolutely real, except they were in black and white.  But I never noticed that until they dissolved into nothingness.  They came all day all night.  I had never seen them before.  They brought with them a nauseating feeling of total emptiness.

I don’t remember sleep being any different from waking. It felt just the same.  The dreams were no different from delirium.

Then I began hearing people speaking about me just outside my door. Except they knew everything I was doing.  They said terrible things about me.  And I developed delusions about the nursing staff wanting me dead, or thinking I was not really sick.  One of the voices, a resident, started talking about how my doctor was going to move me to a ward for patients who were too sick and that he was tired of, that he would come and see me one more time and then leave me there for the rest of my life.  My doctor says it was a pain in the ass trying to communicate with me at that point. My DPA somehow got through to me and convinced me I was delusional from the delirium, and taught me not to believe anything I heard unless I could see who said it.  The nurses started wheeling me around the ward to show me there was nobody out there and that things were too busy for anyone to hang out gossiping.

And then the style of the delirium changed again, so that I started being enveloped by this horrible white cloud. It was just like the endless dark room. Only it was like a whiteness that ate all awareness all thought and all memory.

At that point my DPA was scared because I’d been delirious for five weeks. So the moment I was well enough to get out, she told me to go home.  She’d been researching delirium and realized it would only get worse if I stayed and that I could either die or become permanently delirious. I had no idea how worried she was, she didn’t tell me so I wouldn’t freak out or lose hope.  But she spent a lot of time visiting me and orienting me to reality. 

I still cry when I remember this one time I could only look at her, I couldn’t remember anything, and she just grabbed my hand and it was like my hand became the focal point of reality and nothing else existed but this one thing but she was willing to make that one thing exist for me.  She later told me she could see from my face that I’d basically lost everything.

She got me out of there shortly after that.  After I was finally on Marinol (the sixth of six combined nausea meds) and able to keep a liquid diet down,  I left the next day.

2 notes