Theme
7:29am
August 4, 2015
My brain refuses to see delirium as 100% meaningless.
One of the things that sucks about being delirious is how little meaning things seem to have some of the time – most of the time, even. When I’m delirious, it feels like I’m in a world of edges, never reaching any depths, just surfaces, and seeing all kinds of dizzying reflections in the surfaces, with my mind chasing them around in circles, unable to keep up or comprehend anything other than fragments of reality. It’s a terrible, empty feeling. And it’s weird because my head is outright cluttered, generally (unless it’s the kind of delirium where everything just fades away, instead of becoming cluttery and hallucinatory) and yet there’s nothing there. There’s just nothing to anything.
And after awhile that gets to me. After awhile I start wondering, is every time that I’m delirious, time wasted, time I’ll never get back, time that’s utterly meaningless in the worst possible way? Especially when it’s filled with hallucinations and delusions that have nothing to do with reality at all.
And yet every single time I’ve been delirious, I’ve also had moments where instead of too little meaning, suddenly everything drops out from under me, and… well in the comic I made, I represented it with a lioness, but that was a symbolic way of getting at something deeper. So even though delirium mostly takes me as far away from reality as you can get, there’s also these weird moments where it suddenly takes me towards reality in a huge way that I can’t ignore.
But all of these things, whether they’re about taking my mind towards reality or away from it – they’re about what my mind experiences. And reality isn’t dependent on whether I notice it at the time or not. And I continue to exist just as much when I’m totally confused, as I do when I’m not confused at all. That includes during times that my brain doesn’t even encode memories from. It doesn’t mean I’m not there, or that what’s happening to me at the time doesn’t matter.
But even with all that – I just get this intense desire to make sure that these parts of my life have some kind of meaning to them, even though everything seems so meaningless so much of the time while they’re going on. Maybe it’s because of that horrible empty meaningless feeling, that I insist on there being some kind of meaning in sight even then. I don’t know. I don’t even know how to say what I’m trying to say.
8 notes
1:13pm
August 3, 2015
Well that was weird.
I introduced a staff person to Dead Like Me, and she told me to watch Wristcutters: A Love Story.
So I did.
And midway through the movie, it reminded me of this dream I’d had. And then I predicted something that happened at the very end of the movie (she wouldn’t tell me whether I was right or not, but I was).
And even further in, I recognized more and more of it from this dream.
And now I’m certain that I must have watched it while delirious or something and it encoded itself into my brain as a dream, because everything I remember seems to mean I’ve seen it before, but I don’t remember it as a movie, I remember it as if I was in it.
And when I was delirious, I’d often get sucked into the things I read or watched, and feel as if I was inside them. Last time I was hospitalized, during one of the worst periods of my delirium I was reading a bunch of ebooks by Donna Williams, and suddenly I was there in those events and I was actually Donna and it got very, very strange.
She was only the first of a long string of real people that my brain decided were actually me – there was even a point where I was my own mother, and my own grandmother, and my own child (I don’t have children). The weirdest of the lot was when my brain decided I was Julian of Norwich. Although as a friend pointed out, Julian and I at least had in common that we’d had seemingly genuine spiritual experiences while otherwise delirious.
Delirium is weird.
6:30am
May 5, 2015
➸ ... : a torn map, a candle stub: writing mental illness
“Many people experience some kind of mental Thing (to use Kiri’s word) at some point in their lives, whether they self-identify with a word like "bipolar” or “schizophrenic” or not. As most of you already know, I am one of them. Mental illness can make you feel alone and terrified, especially as a young adult—like you’re on a distant planet where nobody can reach you. Novels like Janet Frame’s The Edge of the Alphabet saved me from that terror by giving voice to the strangeness, horror, and profound beauty of that place.
When people find out that I’ve written about mental illness, they often tell me about their friends and loved ones who didn’t make it. They always use that expression—"didn’t make it"—which I’ve always found interesting for its connotations of journeys and quests. Not everyone who gets called to the underworld makes it back alive. Not everyone who wrestles with the Minotaur wins.
The better I get to know my own underworld, the more I believe that the stories we tell ourselves about mental illness are a crucial factor in determining how many people do make it. Our songs, poems, and metaphors—the language available to us for talking about experiences which are more complex than almost anyone is willing to acknowledge—these things matter both for our survival as a society and as individuals.
I used to think that mental illness had clear answers, that you could take it apart like an IKEA desk and spread the pieces out neatly on the floor. Now, I’m not so sure. What I do know is that stories are powerful, and the right one can make the difference between coming back from the underworld and getting consumed by it. The right story can act like a torn map or a candlestub: imperfect, but maybe just enough to light the way.“
[I haven’t read the book, I just liked the blog entry. Reminds me of things I’ve thought about delirium.]
3:55am
April 26, 2015
Delirium dreams, and question about objects not behaving as they should in dreams
Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and thither [E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]
Repeat infinitely and rapidly in a chorus of bass voices, with cartoonish things that look like men in top hats but ain’t so, in repetitive motion coming from the hats, and you could get one of my delirium dreams from the hospital.
I don’t know why I find things like this scarier than nightmares of the usual sort, but I do. A lot of my more ordinary nightmares still have to do with ordinary objects not behaving in ordinary ways. My brother told me he once had a, nightmare where turning off the tv with the off knob wouldn’t turn it off and neither would unplugging it. I instantly knew why that was terrifying. More terrifying than getting chased by zombies, which has happened to me a couple times in dreams.
Also note #actuallydelirious tag. Because the #delirium and #delirious tags are full of delirium as a metaphor, or else references to the Neil Gaiman character Delirium.
Posted to #actuallyautistic because I’m curious if the kind of dream my brother had is an autism-specific form of nightmare, a neurodivergent-specific kind of nightmare, or a nightmare no matter who has it. I have reasons to wonder if dreams of objects behaving in ways they shouldn’t are scarier to autistic than nonautistic people, but no evidence either way.
11:03pm
April 20, 2015
Persephone
Six pomegranate seeds
That’s all I ate
But I was foolish
Even the Celts in the northern reaches
Know not to eat fairy food unsalted
But I was a young thing
Oblivious to danger
And now I travel between the worlds
Unwilling ambassador to Hades
Hades treats me right
But if I had my say
I’d have married Artemis
Not a male god
Certainly not the king of a world
Inhabited by shades
But I was raised by Demeter
And her sense of duty to the earth
Is a powerful thing
I inherited her sense of duty
Or had it pounded into me
Not sure which
So I am nice to the shades
And try to find them
Things they might like
To pass eternity
After all if I’d been mortal
I’d be them and not me
Fearing their dark pale queen
Even as they begged me for things
I feel a duty to the marriage bed
Even though I’d rather see
Another goddess there
But goddesses are hard to come by
In the underworld
The ones who pass through
Have foreign names:
Ma'at, Aset, Nebet-Het
Ereshkegel, Mictecacihuatl
And most pass through
Not able to speak my language
Or understand it either
Sometimes they frighten me
As I must frighten them
At any rate, duty prevents affairs
And I am nothing if not dutiful
The shades I try to help the most
Are the living who became so sick
They landed here
Across the river Acheron
And need to find their way
Back to the living
Before they too end up trapped here
They remember it all as delirium
But I know
That just like me
They’ve eaten a pomegranate seed –
Or two or three –
And so they come back, delirious
Time and time again
Wondering why they can’t stay out
I do my best
To make their stay
As painless as possible
And hope against hope
That the seeds
Won’t leave them alienated
When they return
To the overworld
The way I always feel
When returned to my mother
Who I love more than anything
But the seeds, they come between us
Just as they come between all
Underworlders and overworlders
In the end
6:26am
April 8, 2015
I hate my internal jukebox sometimes.
It either plays back songs that have lyrics that reflect how I’m feeling (often I’ve “listened” to half the song, or even the whole one repeated over and over five or six times, before I realize how it pertains to what I’m feeling right then). Or else completely original, very complex, instrumental cello music for some reason.
Really long post dealing with death (my father’s actual death, and fear of my cat dying, mostly, with fear of human friends and relatives dying thrown in for good measure), under the cut.
8:01pm
March 29, 2015
Meeting me Halfway to Reality
When I first came home from the hospital, I had no idea what was going on. None. I apparently pissed all over my friend’s couch without even noticing (and that was before I crapped all over it with full awareness and humiliation). But even getting up to her apartment was a challenge, I kept hallucinating things in the windows, I thought everyone was looking at me pityingly, like “There’s the patient who never really goes home, they just drive her around in circles for awhile and drop her off at a replica of her friend’s home for a couple days to make her feel like she might come home, then they’ll take her right back because she can’t survive outside a hospital, been in there, what, fifty years now?!”
Have I mentioned I hate delirium?
Anyway I was hallucinating demons and thinking that my best staff, the most wonderful ones, were demons, and that my friend’s legs were going to fall off and that if we touched, it would kill both of us, and other fun things like that.
So my friend and I collect Harry Potter wands.
And she’d gotten a holly wand, because Harry’s was made from holly. And she knew that a lot of my hallucinations and delusions were centered around death because my dad just died, and that the symbolism of holly was all about life. She’d accidentally gotten two instead of one, so she handed me one of them, and explained the symbolism, and told me to use it to protect myself if I saw anything weird going on.
And to my surprise later on, it worked! It may not have been exactly what a psychiatrist would have you do, but giving me a means to fight back was exactly what I needed, in addition to (not just instead of) reminders that I was hallucinating things that weren’t real.
And having a means to fight back meant everything. It gave me control when I had no control or rationality to fall back on. I was so out of it for awhile that I literally don’t know what happened and what didn’t, for days at a time. Like I can’t even piece together “This is the grain of truth, these are the hallucinations and delusions that formed around that grain of truth.” It was all too realistic, in all five or six or seven or however many senses human beings are said to have these days.
I’m glad I’m home.
I’m glad I still have the wand. Plus my own two wands. (One that may be ebony, another that is definitely madrone, both fit me extremely well.)
And…thanks to everyone’s determination to get me the wrong clamp, my tube just popped out a bit again and I had to do something painful and bloody to get it back in place. Time to go back to my old ways of doing things – not the full dressing, but definitely a lot more tape. Fuck. If this lands me in the hospital I’m going to be mad, especially since they always blame me for things like this. When it’s really the fact they won’t give me the right kind of clamp, and I need the right kind in order to function (too complicated to explain).
Anyway, if you ever have a friend who’s dealing with this kind of hallucinations or delusions, whether through delirium or psychosis or whatever else, you could do worse than using a combination of “This isn’t real, BUT…” and “…here’s how you can take action to protect yourself from the stuff that isn’t real.” Wands aren’t a bad start.
5:45am
March 19, 2015
I can’t believe I wrote that.
It is so hard to write anything, it’s almost painful to my brain. And I’m completely wiped out and exhausted. But I feel like writing that was an accomplishment, because I have been trying to write long things ever since I got home and couldn’t. And I couldn’t make them shorter either. I feel near the point of cognitive collapse. Brain, please start working soon? I can tell I’m still delirious because it’s so hard to do simple things with my brain. Most people don’t know that’s part of delirium, they think of what they see on TV, someone tied down in a hospital bed and babbling nonsense. I tend toward something called quiet delirium, which is far more dangerous than the more famous kind.
1:07am
March 13, 2015
Two hospital stays a couple days apart. Bad enough delirium that I lost typing and gained speech. Which if you understand how my brain works, is a terrible sign. And this was the most terrifying delirium I have ever experienced. And the most impenetrable – my memory is distorted in ways I can’t untangle. And I’ve lost memory of months before. At first I didn’t even know my dad had died, or where I lived, and even my closest friends terrified me. But my brain is coming back. Not sure my hair will survive this though.
It’s feeding tube problems combined with a “dreaded both ends” virus bad enough I got tested for C. Diff. (Which I don’t have, but trust me you don’t want details). Both incredibly painful. But I’m already feeling way better. So don’t worry too much. Even though my tube is disgustingly bloody by now.
I’m planning on trying to come home in two days. I might be ready by tomorrow but I want to be absolutely sure I’m ready because I’ve already had two admissions this week. I want to go home and stay home.
9:42pm
October 6, 2014
“
…I begin indeed to fear that I have undertaken an impossibility, undertaken to tell what I cannot tell because no speech at my command will fit the forms in my mind.
Already I have set down statements I would gladly change did I know how to substitute a truer utterance; but as often as I try to fit the reality with nearer words, I find myself in danger of losing the things themselves, and feel like one in process of awaking from a dream, with the thing that seemed familiar gradually yet swiftly changing through a succession of forms until its very nature is no longer recognisable.
George MacDonald, Lilith
(Warning that the book is very intense, very Christian in ways that could seriously rub some people the wrong way, and spends most of the book in a murky delirium-like otherworld that’s creepy and distorted. It’s very unlike a lot of his other books. I found it worth reading but YMMV considerably.)
9:54pm
August 28, 2014
I’m a cousin too.
Not an autistic cousin, but a psychotic cousin. I finally worked out that’s the perfect social way of describing my delirium experiences: I identify strongly with the experiences of people with actual psychosis, but I don’t actually have psychosis because delirium is considered physical and psychosis is considered psychiatric (and there are differences in cause and duration and the like). But still, it makes me feel better to have the ‘cousin’ concept for that, because I don’t feel right saying I’ve experienced psychosis, but I don’t feel right denying that my delirium experiences mirrored psychosis sometimes. Plus, there’s a growing community on tumblr around psychosis, and there’s no delirium community worth shit (just a bunch of people using delirium as a metaphor). If I’m ever delirious again and yet capable of operating a computer, I know who I’d want to be talking to on here – anyone else who’d experienced significant loss of reality contact, regardless of the exact source.
Because I don’t know how it is for people with psychosis, but for me… experiencing delirium, and even having experienced it any time recently… it feels like being stuck in the underworld, one pomegranate seed away from everyone else. And I remember searching and searching on tumblr for anyone with delirium experiences, and the delirium and delirious tags are singularly unhelpful. But today I found the #pseriouslypsychosis tag and found tons and tons of people who were going through things that were very familiar from delirium. I’m not posting there unless I do go through something like that again, but given how prone I am to severe delirium (the more delirium you get, the more brain damage you get, which makes you more prone to delirium, it’s a vicious cycle that can actually end in death weirdly enough), that’s more an “until” than an “unless”. And having anyone to keep me grounded in reality at times like that would be amazing. And helpful to my survival. (People who are pulled out of their delirium by contact with other people survive their illnesses longer than people who aren’t. Actual facts.)
So… I really do think that delirium should count as a cousin condition to psychosis. Especially the more I read the experiences of people with psychosis. The main difference is the cause: Delirium is caused by a physical illness and eventually fades away after the illness fades away (although if it was bad enough, it can take months or even years to fully fade - if it hasn’t faded by the six month mark, the person has a really good chance of dying, for some reason). There are differences between the hallucinations and delusions of delirious people and those of psychotic people – with delirious people they’re usually less organized and more fragmented because your brain is malfunctioning in ways that make it hard to hold onto a single fixed delusion for long unless you’re starting to get healthier. But there’s enough in common… I would love, when I’m stuck in that underworld, to be able to communicate with other people stuck in underworlds of their own, and maybe feel a little less stuck myself for having that communication.
Because that’s the worst part, is the isolation, the distance, for me. The feeling that I’m stuck off in some other place that’s so far from everyone else that nobody will see me, that I’m frozen, that my heart is frozen and I’ll never get back. And I’ve heard some people with psychosis say similar things. So… neurological cousins, even if we don’t have the same exact things going on in our brains. This is why I love the cousins concept. It can bring unexpected people together in unexpected ways that can be really helpful.
For those unfamiliar with the cousins concept:
http://youneedacat.tumblr.com/post/88305423555/cousins-acs-autistics-and-cousins-autistic-cousins
It was originally developed by autistic people to describe people who had neurological conditions that weren’t autism but caused a lot of the same issues. The focus was less on the condition than the person. So it wasn’t “all people with hydrocephalus are cousins to autistic people”, it was “this person with hydrocephalus is a cousin”. Some other common cousin conditions, though, included things like Tourette’s, ADHD, and sensory integration dysfunction.
I think that for some people, psychosis and delirium can be cousins. And I certainly know that some of my experiences of delirium overlap greatly with people I know who’ve been psychotic. And I’m way, way, way delirium-prone, so I’m not a person who was delirious once when they had a high fever as a kid, I’m a person who’s been delirious at least a few times a year for the past many years I haven’t even counted, due to ongoing medical issues and the fact that delirium is a form of brain damage that gets worse and more frequent the more you have it. So I’ve had it from bowel blockages, aspiration pneumonia, gastroparesis-related hunger, and lots of other things over the past several years. There was one five-week hospitalization where I was severely delirious the whole time, remained delirious after I left, and spent the next year clawing my way out of the delirium. i wrote a semi-fictional mini-comic loosely based on that experience here:
http://ballastexistenz.wordpress.com/2014/05/01/the-scarf-a-comic-about-delirium/
Anyway… I’ve never thought of myself as a cousin before. Maybe because in the autism world, cousinhood really is centered around autism, and I’m autistic. But I think delirium would be a cousin to psychosis, rather than psychosis being a cousin to delirium, somehow. Especially since there’s more of a psychosis community than a delirium community out there. There’s really nothing for delirious people, from what I’ve seen, except the very few of us who find each other stumbling in the dark and make a connection for awhile.
11:37pm
July 20, 2014
Another hospital stay, another experience of ableism.
Another hospitalization, I was vomiting uncontrollably and had collapsed on my bed due to some combination of myasthenia and an adrenal crisis. I knew that I was going to die if I didn’t get monitored more than I was being monitored. Instead of monitoring me more, they evacuated my room, shut the door, and ignored my call button. The sound of my vomiting, they said, upset their nice quiet ward. I shit the bed because I was too weak to get onto a bedpan. They said that I could not be allowed to shit the bed, because if I did so, I might get used to it, and might never use a toilet again. I had already begun hallucinating, but I managed to curl myself into a position where my vomiting was least likely to choke me. Then I collapsed completely and went into a delirious, hallucinatory state where I felt like my body was disintegrating and flying out the window. In lucid moments, I wondered if this was what dying felt like.
My hospitalist was informed of my state, and replied that he was only there to treat my pneumonia and that my other conditions, including not having eaten more than broth for weeks beforehand, including possible myasthenia gravis being aggravated by the vomiting, including all the symptoms of adrenal crisis, were no concern of his. There was an argument about whether I belonged in the ICU, and he said that since he was only treating the pneumonia and nothing else, I didn’t need the ICU. My GP tells me that I am lucky to have survived without the ICU, and that I absolutely belonged in the ICU that and many other times. The fact that I’ve been denied access to the ICU when I’ve needed it has always been pure ableism, and this is the kind of ableism I deal with on a regular basis.
Many times, hospitalists see people with multiple, complex disabilities and decide that they are only going to focus on the disease we are there for. This means we get less adequate care inside the hospital than we get outside the hospital, which seems ironic. This doctor literally did not care that I had not eaten for weeks due to undiagnosed gastroparesis, which was later diagnosed during the hospitalization, after more weeks without eating. He was not concerned about my neuromuscular junction disease that made me weaker every time I vomited, including weaker breathing. He was not concerned with signs of adrenal crisis. He was not concerned about controlling the vomiting that was created by the drugs he was giving me for the pneumonia. He was not concerned that I had fallen into a quiet delirium, the most dangerous type of delirium. All he cared about was that someone come in and change my IV bags once in awhile, that they keep my IV flowing at least semi-properly (ended up with a PICC line), and nothing else. Nothing is so lonely as being delirious and alone in a ward where they are doing their best to ignore your existence. And it was ableism that created this whole scenario, ableism that said “Let’s ignore hir doctors, let’s ignore hir disabilities, let’s ignore hir power of attorney for healthcare, let’s pretend all hir disabilities don’t exist except for the pneumonia. Even if it kills hir.”
4:01pm
June 18, 2014
➸ How to help someone having a psychotic episode
As I have mentioned before, I have psychosis. Few people understand this disorder, and there is a ton of misinformation out there vilifying those who experience psychosis, calling us dangerous or even ‘evil’.
Also, with any given person, make sure beforehand…
Good point.
Yeah I just thought of it because… I’ve never been psychotic, but I’ve had psychotic symptoms during delirium (including hallucinations and delusions), and being in a psychiatric ward while having those symptoms would have done nothing but throw my paranoia into high gear and make everything, everything worse. And I’ve spoken to actually psychotic people who had similar experiences. And generally with something like this, each person is different. So while these rules are great for the person who wrote them, if you encounter someone who experiences psychosis (or psychotic symptoms under delirium for that matter), you definitely want to check with them and find out what works for them, rather than apply a set of rules off a list. You can even go over the list with them, just… make sure, because some of those things can backfire considerably on the wrong person.
11:16am
May 25, 2014
There is nothing about delirium on the delirium tag.
There’s stuff about a book called Delirium by Lauren Olivier.
There’s stuff about love, with delirium used as a metaphor, I guess?
There’s stuff about the Sandman character.
There’s nothing about delirium.
I’ve been scrolling and scrolling and scrolling, and there’s nothing.
1:32am
May 8, 2014
Delirium
I am curled in a ball
Like a seed that has
Never been born
Nor had the chance to grow
Waiting in the netherworld
For what?
I remember a time when I had fire
And the fire was the blood
That coursed through my veins
But now I am only water
Only floating
Only wondering where I am
I tried to get up and walk
But everything around me was white
I couldn’t get my balance
And when I fell
The falling never stopped
I climbed out of that world
Using only my fingernails
But the underworld still clings to me
I am a pomegranate seed away from you
Just one seed away
But it may as well be a canyon