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.