Comments on: Don’t ask, I can’t tell, I can’t even explain. https://ballastexistenz.wordpress.com/2014/05/03/dont-ask-i-cant-tell-i-cant-even-explain/ Sat, 03 May 2014 23:08:11 +0000 hourly 1 http://wordpress.com/ By: Lili https://ballastexistenz.wordpress.com/2014/05/03/dont-ask-i-cant-tell-i-cant-even-explain/#comment-25527 Sat, 03 May 2014 23:08:11 +0000 http://ballastexistenz.wordpress.com/?p=1589#comment-25527 In reply to Mel Baggs.

Oh, and the paranoia too, yes. I was convinced that the nurses were monsters. Not physically monsters, but cruel, cold, uncaring people. I was a hassle because I am fat and hard to move and was menstruating heavily. I could hear them in the nurse’s station and they didn’t like me and they made fun of me and they were angry at me when, in more lucid moments, I gestured for a pen or pencil to communicate while I was intubated. Their meanness was dismissed as misheard “gallows humour”. “Gallows humour” being overheard by patients should not be tolerated in a place where real people often die. What if I had died and my last thoughts were of the supposedly inadvertent cruelty?

I thought they had stolen my smartphone (which I never use for oral, verbal communication). That part was probably an hallucination but it was so very real and nobody would comfort me because I was being denied my primary means of communication. It was unimportant because I was not “all there”.

This all happened in February. I’m cognitively back to normal, mostly. I am still intensely dragged into that world every day. Much of it may have not been objectively real, but it was my only reality. It was real to me.

I can’t overstate my gratitude for your posts even if nobody else understands.

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By: Mel Baggs https://ballastexistenz.wordpress.com/2014/05/03/dont-ask-i-cant-tell-i-cant-even-explain/#comment-25525 Sat, 03 May 2014 22:40:47 +0000 http://ballastexistenz.wordpress.com/?p=1589#comment-25525 In reply to Lili.

Yes that’s something that I had to deal with, was this sense that it wasn’t “supposed” to mean anything, and yet it felt like an extremely meaningful experience. Like not that the content of the hallucinations or anything “meant” something in particular, but that somehow the experience itself held a lot of important meaning to me, it was a huge part of my life for a long time and I couldn’t just forget it and fold it back into the past and act like it had never happened.

I still don’t understand a lot of things that happened while I was in the hospital. And the worst part for that was actually this part when I was starting to get better. Because before that, I’d clearly been in this really otherworldly state where everything was so strange there was no way to even translate it into words or thoughts. But when I started to get better, I developed delusions and hallucinations that centered around the nurses in the hospital, and I’d hear them talking outside my room about me but it would turn out to be a hallucination, and it was extremely hard to believe people when they told me I was hallucinating. I got paranoid and thought they were trying to kill me, too, or that they didn’t believe I was really sick. The nurses were actually amazing about that though — any time I heard voices they’d wheel me around the ward to show me nobody was really talking about me. But it was a horrible experience.

It seemed to kind of happen in stages. Like there was a stage where all these weird, disconnected things kept happening, my mind was half on and half off, and everything was just bizarre and dreamlike. And then there was a stage where I started hallucinating this succession of people who would appear to me and then vanish, and it kept happening with my cat, too. And they came with a feeling of emptiness. And then after that stage, I developed auditory hallucinations and delusions, a lot like what psychosis is supposed to be like. And then after that, I didn’t have any hallucinations really, but I would feel my mind just dissolve into blankness and I’d become extremely disoriented and not know where I was or who I was or what was happening, and it was very hard to stay in the real world. And that last part took the longest to recover from, as in months.

But for a year afterwards it felt like I had a foot in the delirium world and like I couldn’t quite touch the real world anymore, and it was a really awful experience.

And yeah, I know that technically it was just my brain misfiring in all these ways. But at the same time, this was my experience of life for over a month, and that means something, always.

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By: Lili https://ballastexistenz.wordpress.com/2014/05/03/dont-ask-i-cant-tell-i-cant-even-explain/#comment-25522 Sat, 03 May 2014 18:33:46 +0000 http://ballastexistenz.wordpress.com/?p=1589#comment-25522 I want to write about my experience with delirium. I’m working so hard to piece together what was real and what was triggered by reality, and I can’t stop thinking about it. I still am so grateful to not be the only one to have this experience, and that someone is talking about it openly. I see from the lack of comments, and from my own experience, that people who haven’t gone through it just don’t know what to say. They expect you to just try to forget about it. I’ve been told it was just part of my illness. That it means nothing. But it *does* mean something.

I’m glad you aren’t expecting it to be forgotten. You’re inspiring me to think about blogging again (we used to “know” each other through LiveJournal but that was a long, long time ago).

So much gratitude for this.

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