Intermission

Why I Care About the Project

Like, why actually commit time to it?

I've said here earlier that "to not be sleeping properly is to be dealing with it constantly," and I've explained what use the charts have to me day-to-day. I don't think either of these answer "why look into data more closely?", though. 

One reason is just curiosity, as in the way anyone probably gives higher value to something concerning themselves than something unrelated.

Art projects

There's a second similar reason that's something like "using data analysis as an artistic or narrative tool or medium" is kind of intresting to me, and I haven't tried it before. Which is also related to that I've tried various art projects (trying to serve as their own explanations) with the sleep charts/about living with a sleep disorder before, and I feel like artistic approaches on their own haven't ever fully met what I want. (I looked, and I actually barely see sleep disorders outright mentioned, more stuff about time displacement and alarmclocks and grid motifs- though there is one HTML page specifically on the charts, but it was done in psychosis and I'm not proud of it so it's secret. Just- the rambling here could be worse. I need to organize bodies of work out... get back to) Like, they can convey an emotional aspect, but it might get empathy more than understanding. Like, there's something to say about that giving someone just the charts on their own (with a key/legend) might be a full project. Here's every class I've attended and slept through, and the onset and duration of psychosis, and transferring colleges because of it, and pulling all-nighter after all-nighter because it didn't make a difference to cognition. And here's all that compressed into a row of 24 squares, and they're only either black or white. And that really, on it's own, feels strong enough to me as a piece I'd want right between art concept and mathematical data, so that there's maybe not need to take it further. (Aside; a rule/guide I like to keep for myself about artistic practice: A first step of making a piece should be to pair it down to it's bare minimum. You start with the concept, idea, goal of what's communicated- the next step is parse out it's rules. Break the piece down to being made from only what these rules allow you to do (rules found through pushing their bounds, finding loopholes, do a lot of studies). What you end up with is (probably) minimalistic/ visually simple, but all the distractions from the main intent will be filtered out. You'll have the cleanest, most direct understanding of your initial concept- which you need to understand your own intent to be able to best communicate it to someone else. You can tell when you're at this point because tiny changes will have huge effects. From here, it's basically finding the best combination of those tiny changes, or you go back and follow a different path of those rules (or remaking them) and their boundries.) But, that's requiring a lot from the viewer to parse out. And like, there's also something to say on if I personally care about this from an "educating people on N-24 and effects of sleep disorders" perspective. Because this is obviously more than "an artistic practice of daily logging"- there's that actual "living with"- but there's also having to deal with other people not understanding things. There's definatley something about "if you're disabled, how much are you forced into being an 'activist' or an 'educator', and how fair is that?" But I don't really care, I just wish I didn't have to deal with abelist bs. (There's also that people are generally 1000 times worse with psychosis, like "schizophrenia" is actually just straight up a dirty word and you just should not say it. I could really go into reactions, but unless I feel up to dealing with ableist bullshit signifigntly worse than with the sleep disorder, in speaking to people a lot of the time I group everything under "sleep disorder". Which is like, yeah sometimes "sorry, I was psychotic" gets turned into "sorry, issue with the sleep disoredr", gets turned into "sorry, haven't sleep well", and that's not great but oh well, we cope. I'm just saying that's why talking about sleep disorders doesn't really bother me.)

Making predictions

Back to topic- if I had the ability to actually do it, it would be cool to make a program that gives me a prediction of when I'll be sleeping next. It's a pretty big issue for me to not be able to plan ahead at all because of the irregularity of the disorder. I know I can remember it being in my head some informal calculation of "I'll be expecting to be awake between 8 and 36 hours, and expect to sleep between 0 and 14." Which is probably more psychosis numbers, but I'd keep the same thing in my head on the gap year too when I didn't have a shift to need to try and sleep before. But, I think you could see those numbers are kind of a joke for being able to plan anything in advance. Like, as in anytime I have to make an appointment more than a few days away, I just have to pray whenever it comes around I'll be able. Sometimes it's even difficult to pick a good time for one that'll be tommorow. I've been lucky this semester that I've been tired enough (6.6 hrs sleep average, less without breaks) that I've stopped having the option to pull all-nighters, and I've kept pretty good at sleeping during the night/morning before classes. So, it's slightly less of an issue, but appointment times are still rough. Sometimes I'll have to start adjusting my sleep a few days in advance of a meeting to get a better chance at being able to attend.

Solutions to sleep disorder

Let's talk solutions:

I can call off the meeting and reschedule it. Not great, as this would likely happen a day or less in advance, the person would get pissed, and I'd have to wait for another slot to open up which could have the same issue. Plus, I can't reschedule classes, shifts, and other institutions to my whim.

Fix the sleep disorder. Okay, here's generally what a psychiatrist will reccomend to do: try to go to sleep and wake up at the same time every day. Great. What they'll reccomend next is: keep trying that, but take melatonin at the same time each day, a few hours before you want to go to sleep. Now it's 10pm and I'm hallucinating, great. The "just be tough on yourself, only sleep during the desired window" approach falls through when I can lay in bed eyes closed for 8 hours without sleeping, and can't always force myself awake through another day till the window comes around again. I'm working with both a stimulant perscription that could be used to keep me awake at certain times, and access to about whatever sleep med I could want. I'll admit, I haven't explored the full extent of how heavily I could regulate if I fully gave up reservations about getting into more and heavier medications. But, I've been through side effects, misdiagnosis, a reasonable phobia, and ever increasing doses, so I stand by my hesitation towards this. I would like to stress: I've genuinley tried the "be hard on yourself" and "stop having the disorder" approaches. Go adjust your circadian rythm to being 23 hours. Do that, start going to sleep an hour earlier each day, no matter what, and actually hold it for a signifigant period of time without slipping. Like, go ahead, cash prize if you show proof.

So, assuming the disorder is going to continue to exist and I can't conform everything else to my schedule, the way foreward left to making it more managable would probably be with making predicting it easier.

Comorbidities

Here's the other thing with this though, regarding relavant comorbidities. I remember back at Cooper, it was good rule of practice that "averaging 6 or fewer hours of sleep for a week or longer is a danger zone", meaning for worse sleep deprivation illusions, and raising the liklihood for falling into delusion or disordered thought. This semester's hit weekly averages just as low or lower without that issue, so the rule's out of date. However, issues with psychosis and possible hypomania aren't treated in any professional sense, just managed through trying to be healthy about stress and proactive on catching things early. So, it's not an issue I'm unaffected by anymore, just something I have to cross my fingers on that it's stabalizing out. Still relavant.

I think one of the things that's more commonly known about schizophrenia is that "someone who's delusional can't recognize they're delusional, and can't be convinced they're wrong". (I'll continue talking ignoring that "convince someone they're wrong" is probably not the only or even best approach to someone being delusional. That doesn't realize a delusion may still follow some logic that could be worked within, and also leads to ignoring any situational change that could help.) I've definatley experienced truth to "inability to recognize symptoms". I remember in the moment (the whole active duration), I would research everything I could, and still feel extremely hesitant about coming away with a self-diagnosis of even schizotypal. (Which maybe shouldn't be categorized as a personality disorder. It's still caused by thought disorder- what causes schizophrenia- it's just a milder version that I'm assuming got labled under 'personality' because the exterior presentation rather than interior mechanism is what was most visible to psychiatrists. I feel like it makes more sense for 'hypo-psychosis' in schizotypal to be categorized the same way as hypomania in Bipolar 2 is to mania in Bipolar 1. I haven't researched this, but it just doesn't make sense to have severity categories for bipolar and not schizophrenia (especially when they're closely related because of schizoaffective), although I guess maybe having schizoid as a personality disorder effects categorization of schizotypal. But, it seems there'd be use in changing schizotypal to labled as a (mild) psychotic disorder particuarly so more attention might be given to middle stages on the psychosis 'normality to abnormailty' scale, and psychosis would be less of an 'all or nothing' terrifying unknown. Although, doing that to destigmafy schizophrenia in turn raises stigmafication of schizotypal. Relavance of this: we're treating schizotypal as completley synonymous to "very mild schizophrenia".) So it's been in hindsight that I've had to reanalyze memories to try and understand any kind of severity. (Just, it's very possible to be thinking "I feel very painfully confused", then the next second ammend to "I feel confused about if I feel confused, so I can't say weather or not this is true". Same with answering "is your memory poor?" with "I don't remember recently forgetting anything, so probably not". And of course, if something is real and really happening then you'll accept it as real.)  It's also been in hindsight that I've been revisiting with the question of "would that also have qualifed as hypomanic?" I've tended to not examine for mania because it's been a less pressing symptom than psychosis (ex. if you've just looked up and realized you haven't been the one in control of your body, you'd focus on that rather than if your body had been particuarly busy), but have started looking for it recently as I've noticed some of it on it's own without psychosis in the recent semester. So, it could possibly be that I'm looking at bipolar parts of schizoaffective being what's showing in sleep charts- not a side effect of just psychosis. Nonetheless, I can for certain pick out events and episodes just by the charts, no dates needed. What all this means is that maybe there's also some hypothetical calculation that could read a sleep disturbance and categorize it as "sleep during psychotic/hypomanic episode".

FTD diagnostics

If you're saying, "hey, I thought the sleep tracking predictions sounded novel, being able to predict or get insight into psychotic episodes sounds genuinley signifigant" - then sure, yeah, higher stakes with that one for sure. Minus affective elements, though, what I'd end up looking for is disorganized speech/ formal thought disorder (FTD). That's the part where language is effected- brief definition in a clinical sense, and more all-around introduction. In terms of 'tracking' psychosis, FTD is probably the most outwardly observable symptom (minus catatonia) and could get the closest to being be objectivley measured- as in scored numerically, not relying on self reports or awareness. That's how it's diagnosed usually, (the TLC, TLI, and TALD rely on an interviewer/ observer scoring the participant- here's an intresting Self report version, though.) although they come down to bias of the interviewer. Rating FTD works particuarly well here because I tended to be better at disorganized symptoms (FTD, thought disorder, memory, cognition) than hallucinations.

Okay so, we're not strapping a mic to me at all times, but say we have a large body of speech to text. With that you could have a program do the part of interviewer and return a severity score on a numerical scale. It'd have to be pretty intelligent and able to parse out not just single out-of-place words, but also understand if an idea maintained coherencey across multiple sentences, or made practical sense. If you had the program and measured chunks of speech over some timeline, that'd probably be signifigantly more accurate than tracking sleep (plus removes interviewer bias, and doesn't require going into an office for a 50 minute session). Sleep is influenced by schedules and mood, FTD is (my particular case) pretty directly relational to and only caused by schizophrenia.

Here's maybe a simpler version: ammend the diagnostic interviews to analyzing written text instead of speech. 

Skips speech to text, and we can add some personal tells that only exist in writing- Random Capitilization (in context of indicating a word is used in it's delusional definition not dictionary definition), color-coding or bullet points instead of sentences (hard time sorting ideas), parenthesis within parenthesis (derailment, loss of goal), excessive stringing-with-dashes (semi-neologisms). And then carry over what we can from the already existing criteria. It could probably all be adapted, but I'm looking specifically at what can be done without needing to understand the actual meaning of any words- just basic structure. So, we get run-on sentences and excessive comma-stringing as pressure of speech/ derailment (like parenthesis), and extremely short sentences could be poverty of speech. Looking at words themselves we get clangs (if nearby words rhyme or are heavily allitterated), neologisms (is the word in dictionary? true/false), stilted speech (could just be checking against a predetermined list of 'unusual/formal' words), and perseveration (over-repitition of a single word/ small phrase).

Again, a main fallbacks of FTD tests (and really all psychiatric diagnostics- I believe it's worse here than physical medicine. I'm not saying we should computerize the whole system, not at all- psychiatry specifically relies on subjective, personal experiences which requires empathy and human-to-human reasoning. It's just here's like, one of the few things that's closest to being an easy numerical scaling. Hey, you really should've seen that misdiagnosis) is if the interviewer and participant have different cultural/ lingustic backgrounds, and someone is scored higher for having a dialect different than the interviewer. I doubt removing 'meaning and context' in favor of 'structure' would solve that on a larger scale. However, I'm pointing that out because there's still the 'pro' of a human undertanding context. 

Like stilted speech can mean 'overly formal' and could return high on something that just happens to be written for a formal setting. Perseveration might have to add "only over short-term" in case a bit of writing is highly but still reasonably focused on a single topic. All poetry is discounted. There's also that sometimes I'm trying much harder to sound 'correct'. If something is meant to be graded or professional, I'll go back over it several times to edit out as much of the confusion as I can. (I sometimes get told that "it's obvious when I was the one who wrote something", or "the way I write sounds exactly like how I talk", which (for the latter), I assume because it's something people find worth pointing out, isn't very common. And even after I've tried to edit something. I don't remember ever getting that before. With editing things, that's just going over and over it to rearrange little bits of sentences and taking out commas (etc.), and I don't think that ever fully gets to a place where I can say it feels like nothing is showing. However, there used to be points where I'd try to write things and just for the life of me couldn't even frame it into paragraphs. There was some point this semester where I had the thought "it doesn't hurt to think right now, with writing this", and that was nice. It's kind of painful to not be able to connect ideas. I think since things setting in, I've gotten a handful of comments about having "particuarly exadgerated expressions"- I think my resting facial expression is different now, too.)

Anyways. Had the thought mostiy in relation to myself (though, yeah, I've seen FTD picked up in other peoples' writing). I haven't ever seen a FTD diagnostic or scale that looks at writing rather than spoken interviews, though- pro of using writing is that you probably have more old saved bits of text to dig up than voice recordings for if you wanted to make a timeline. I definatley haven't seen a non-human as the scorer, but this is what I'd do at the simplest level so a computer wouldn't have to 'understand if the meaning is logical'. Would it be useful? Yeah. Is it possible? Could be. Would it ever happen? I am enrolled for a BFA. *Nope