Essay_for_Disability

Essay for Disability

This essay is also available on Google Drive at: https://docs.google.com/document/d/14mocB-F96UiHw48CIMd0MvJLAWFxDCgAqwXC52QPA4Q/edit?usp=drivesdk

Anyway, this is an essay (which turned into a journal) I wrote (over the course of multiple years) to send to the government in preparation for my upcoming Continuing Disability Review, in which my government disability benefits will be reviewed and the decision will be made to continue or discontinue them. This essay explains what is wrong with me to the best of my ability. This was originally written as a Google Doc meant to be read from beginning to end, I just broke it up into sections to make it more manageable.

Table of Contents (click on a link to jump to that section)

Introduction

Dear Social Security Continuing Disability Review,

This essay/journal is to explain to you why I’m not working. The short answer is that I can’t. The long answer is that there are six reasons. I know that you are overworked and understaffed, so feel free to skip this essay if the information I already provided is enough for you to make the decision to continue my benefits. In case the already provided information is insufficient, the six reasons I’m not working are that I have cognitive issues, sleep issues (I used to meet the criteria for Non-24-Hour Sleep-Wake Disorder, but my sleep no longer shifts an hour later every 24 hours), an inability to safely drive a car, an inability to form/sustain close bidirectional relationships (or really any real relationship) with other people (except for maybe my mother), a lack of motivation (although this varies based on my mood), and lastly I don’t want to (I mean I felt that I wanted to work and have tried but it never worked out in real life for various reasons). I added extra sentences at the ends of paragraphs and I added extra paragraphs at the end of the essay in an out-of-order manner, so dates of when things were written will not appear in chronological order. Also, even though exact dates appear, the reason they appear is not because I have a good memory for exact dates. Rather, I keep a link to this paper as a Google Doc saved on my phone and make additions to it with the current date at the time of writing mentioned in the addition. Other dates came out of things like online records and medical records. This body of writing started out as an expository essay and over time became a personal journal that I revisit regularly. The section on my social/interpersonal/personality issues is more to give a better idea of what is wrong with me as a person in a personal sense.

Cognitive Issues

Anyway, the first reason I’m not working is cognitive issues. I made a work attempt in October to November 2019 and I lasted less than 30 days because I cognitively could not do my job. You have to learn things when you start a new job and I couldn’t learn. Either that or I’ll make a little progress and then later I will revert to my previous ways and the progress will be unlearned (this is what previously happened when instructors tried to train me how to be a bus driver, see paragraph on why I can’t drive) - training me to do a job is an issue. This next example happened at a work attempt before the latest one (I’m not sure exactly when the cognitive issues first started as they happened very gradually, like it definetely wasn’t a sudden change like a head injury), but I remember one time I was told instructions that I was to follow when I got to my desk, and by the time I got to my desk I forgot the instructions. I actually asked the guy at work if I could use my cell phone to record his instructions because I knew that I have trouble remembering things that are spoken to me and it’s illegal to record a conversation without the other person’s consent in some US states, but he refused to give consent for me to record. I need procedures and instructions to be in written form because I am much more likely than other people to forget them when they’re just spoken. I mean if someone says something short, immediate, and direct like “You pick up that box now” I can do it (with them possibly needing to repeat the simple instruction once or at most twice if I’m not paying attention) but real work related procedures usually have multiple steps and there’s often a time gap between when I get told the procedure and when I have to execute it, so when it comes to real world work procedures I have problems. I’ve tried to write down things that were spoken to me before but I can’t read my own handwriting when I write fast and when I write legibly I write very slowly (for this reason I gave up trying to write down notes when I was in school and I just learned the information by reading and sometimes underlining or highlighting the textbooks). Continuing on the related subject of memory related issues, on 11/18/2022, while on vacation in Washington D.C., I went to my hotel’s front desk to ask for late check-in and they asked me my room number, and even though I had been in that room for a week and taken a photo of the room number with my phone, I still told the front-desk guy the wrong room number, so I have specific little memory issues. For example, on 2/15/2023 I walked from the kitchen counter to the cupboard to get a packet of oatmeal, and when I got back to the counter, there was already a bowl with a packet of raw oatmeal in it, so apparently I already got myself a bowl of oatmeal to microwave for breakfast even though I had no recollection of having done that. Sometimes I send myself emails containing things I need to do or remember in the future, and I noticed that I emailed myself the same reminder (only worded slightly differently) on May 6, 2023 at both 9:22 AM and 9:45 AM and I had no knowledge or recollection that I had done this twice, so I forget stuff in a way that is more normal for a person in retirement than for a 30 year old. Sometimes I walk between two places that I have walked between maybe a hundred times and I don’t recognize my surroundings and need to check Google Maps to make sure I followed the correct path—there’s a very specific kind of memory which is used for navigation (and also some other things) that I lack. Like I think other people, when they drive around or are working with a web of computer code, they have some sort of mental map in their head which I lack. Anyway, sometimes I cannot absorb information or have issues focusing. I used to be able to read hundreds of pages in a single sitting (for example I remember as a kid I read a thick “Harry Potter” book in under 24 hours), but all the recent times I tried to read a novel I gave up after a few pages. Not only am I not able to focus for more than a few pages, but I keep forgetting the characters and names and having to go back and re-read because I’m lost while trying to read a book. I used to read through lots of books for fun, but years ago I gave up on that entirely. On 10/11/2022 I watched a YouTube video about the guy who invented artificial ammonium based fertilizer and the poisonous chlorine gas used in World War 1, and when they mentioned his name again I was like “Who is that?” and had to check the video description because I kept forgetting his name - I watched the video twice and as of 10/12/2022 (the next day) I still don’t remember his name as my memory for names is very bad (for example on 11/12/2022 I tried to read the Wikipedia page for the TV show Parks and Recreation because I was considering watching it for the first time and I couldn’t read the page because I couldn’t keep in my head who each of the characters in the show are). To give you an idea of just how unreliable my memory for names is, my closest family members other than my parents are my cousins Karina and Kristina and I mixed up their names from time to time for about 10 years—I still sometimes mix up their nicknames (“Kika” and “Kara”). I tend to remember the first sound of a word or name and mix up words or names that start with the same sound. For example, I have repeatedly mixed up the names of the newspapers “The Wall Street Journal” and “The Washington Post” as well as the names of my second cousins “Amanda” and “Aryana”. I have the apps “Pandora internet radio” and “Panera Bread” on my phone and I sometimes search for or pull up one when I was looking for the other because they both start with the same sound. Changing subjects to my concentration issue, when I listen to an audiobook or podcast, even if it’s the best audiobook or podcast I’ve ever listened to and I actually have motivation (which is rare), I keep having to rewind and relisten to parts because I keep spacing out. At a previous work attempt I remember at meetings other employees would talk and I could never follow and understand what they were saying (I mean when they said “Hello” I understood that but when they would talk about technical stuff I couldn’t understand and follow even though I have a relevant education in the technical stuff). On 2/27/2023 I attended a city committee meeting because I had a comment that I wanted to say and I noticed I had the same issue keeping focus and following what people were saying that I described in the previous sentence even though what was being said at the city meeting was not technical. When I was around 26 or 27 I got my psychiatrist Dr. Pushka to prescribe me Adderall (an ADHD medication) to try to help improve my focus in hopes that that would allow me to work, and I noticed my attention, in particular my visual attention, jumped around all over the place less, but my other cognitive issues like lacking a certain form of memory were not improved and so I could not do the computer programming job I used to do, and then after a month of Adderall I ended up needing a psychiatric hospitalization which might have been caused by the Adderall (Adderall can cause manic or psychotic episodes in the bipolar or schizophrenic), so I don’t take Adderall anymore (and also my current psych doctor APRN Matamoros is under Memorial Outpatient Behavioral Health which doesn’t prescribe controlled substances like Adderall). Dr. Pushka and I knew ahead of time that Adderall can trigger mania or psychosis in some people with bipolar disorder, but I risked it because I really wanted to work, and honestly I’m not even 100% sure if the hospitalization was caused by the Adderall because I took it for weeks before the hospitalization occurred, and Adderall doesn’t take that long to work, so maybe the timing was a coincidence; I would have to take Adderall again for a month and have another hospitalization to know for sure that it wasn’t a coincidence (but I have no plans to do that). When I was in kindergarten I was diagnosed with ADHD but I didn’t receive any ADHD drugs (until I received the Adderall I mentioned in the previous couple sentences) because my parents were against the psychiatric medication of children. Anway, when I was a student in school I relied heavily on the textbooks because what was spoken in lecture did not stick in my head—if I had an exam question on something that was spoken in lecture but not written in the textbook I would normally get that question wrong. That was years ago, but switching back to more recent issues (like in year 2022), when I try to watch videos online on YouTube or Reddit I typically give up (or need to take a break) after a few minutes - simply watching an entire episode of a TV show is a feat for me. My concentration is sometimes longer than that, though, like on 8/16/2022 I managed to watch a 20 minute YouTube video with just one little pause, but it still surprised me how difficult that was for me given how funny and engaging the video was. On 9/20/2022 I watched an 11 minute episode of the children’s cartoon SpongeBob SquarePants (each half hour TV block consists of two eleven minute episodes) and that was hard for me focusing wise—I lost concentration around 9 minutes in due to a pseudoseizure that resembled a simple partial seizure (focal non-impaired awareness seizure - see later on in this essay for an explanation of what that is—it’s not the whole body shaking that people typically think of when they think of a seizure—it feels to me more like a light switch going off in my brain and then weird sensations, experiences, or stuff in my brain happens). On 11/16/2022 I made it through an episode of SpongeBob SquarePants without experiencing one of those pseudoseizures until after it ended, so my pseudoseizures are pretty random and vary depending on the day. The pseudoseizures are very distracting and happen to me constantly, on most days, but again they’re pretty random—there is no visible trigger or known cause. Anyway, I keep little notes that tell me how many minutes into a TV show I watched on my laptop because I often can’t focus long enough to watch a whole episode in one sitting. Also sometimes I have to watch YouTube videos at slow speed, like 80% speed or 85% speed, to catch all the spoken words. I don’t know why, but I definitely noticed cognitive issues that developed with my psychiatric ones, and they haven’t improved and tend to stay about the same or get worse with time (like over the long term).

This paragraph was written at a later point in time than the previous; I’m adding this sentence in February 2023 and the duration with which I’m able to focus on a movie or TV show is longer than it was in mid 2022, possibly due to depression going away (I hit 40 minutes of YouTube watch time with one pseudoseizure interruption), but my eyes keep involuntarily moving (in a similar pattern/rhythm as the pseudoseizures) and my muscles keep involuntarily contracting, which is distracting, and also the cognitive stuff (other than very short focus duration) which I mentioned before hasn’t improved and appears permanent. Now that I think about it, it appears that I actually have multiple different very specific cognitive issues where if you just looked at overall general intelligence I don’t think that would be significantly below average (when I was a kid it was very above average) but I find very specific cognitive things that other people take for granted to be very hard or impossible. This is an update on 9/21/2024, but what I wrote before (this in quotes: “the duration with which I’m able to focus on a movie or TV show is longer than it was in mid 2022, possibly due to depression going away [I hit 40 minutes of watch time with one pseudoseizure interruption], but my eyes keep involuntarily moving [in a similar pattern/rhythm as the pseudoseizures] and my muscles keep involuntarily contracting, which is distracting, and also the cognitive stuff [other than very short focus duration] which I mentioned before hasn’t improved and appears permanent”) is still true. Like my YouTube watch time is definetely longer than it was in mid 2022, but other stuff isn’t improved. For example, I still have no sense of direction and can’t navigate around or recall and find my way around a body of computer code that I didn’t write entirely myself from scratch. I still have occasional little simple partial pseudoseizures where if someone is talking when they happen I miss those words that they said (the simple partial pseudoseizures don’t last a long time but I’ll miss a few words and have to ask them to repeat). Also I recently tried to get through a light book but gave up after a couple of pages on each attempt each day, and after a few weeks gave up entirely and don’t know if I’ll ever be able to get through a book from the front cover to the back cover again like I used to. But yeah, some cognitive issues are still there regardless of my mood. I need a functioning brain to switch to a new job and my brain is not functioning optimally regardless of my mood.

Typically this next paragraph (which was mostly written before the previous one) would talk about the second reason I’m not working, but instead I’m going to go on a tangent where I talk about the ramifications of having cognitive issues more. I know you have to be severely retarded for your IQ to be low enough to qualify for disability based on low IQ. I do not believe I am severely retarded. I used to have excellent cognitive abilities in specific areas, actually. The first time I took the SAT (college entrance exam), I scored a perfect 800 out of 800 on the math section and a 720 out of 800 on the reading section, for a combined SAT score of 1520 out of 1600. I studied long and hard for that exam, but it’s an impressive score nonetheless. Like if you Google “average SAT score Harvard”, it says that the typical SAT score for a Harvard accepted student is 720-780 on the reading and 740-800 on the math. So basically my SAT score was at Harvard level the first time I took it (and I raised my reading score to 740 the second time I took it). Like out of every 100 people who took the SAT, only about 1 or 2 scored higher than me. My cognitive abilities are less than what they were, but I don’t believe I’m retarded. That being said, my cognitive issues are a severe hindrance. The third reason I’m not working (I talk about it more three paragraphs later) is that I can’t safely drive anymore, but I used to go on highway drives that were hours long (I think I could still drive on a highway without hitting anything as long as I don’t have to change lanes in traffic too much, but despite that I can’t drive in cities). Now I can only safely drive in the gated neighborhood of my mother’s house where I live, where there are no traffic lights, almost no traffic, a 20 mile per hour speed limit, and wide streets. Like my basic abilities are still there, they’re just impaired in specific ways or in specific situations. Having impaired cognitive functioning is a severe limitation because it reduces you to things that cognitively (almost) anyone, even a high school dropout, special needs student, person with a learning disability, elderly person who couldn’t afford to retire, or someone who just got out of prison can do. And these people who lack talent, cognitive ability, or skill are all competing for the same set of shitty, low-paying jobs, resulting in high unemployment rates for these people where they would be lucky to land any job, even one that does not pay enough to live independently on. A year after I graduated with my Bachelor of Science in Computer Science, I had multiple competing jobs offers and ultimately accepted an offer from Amazon for $150,000 a year on full-time W-2 (not including great health, dental, and vision insurance, and a little bit of vesting stock) in year 2016 for a junior or apprentice level position in an area where my rent in an ideal location was $2,350 a month. It is also of note that $150,000 a year was for an entry level position in big tech—within two years of being hired you are expected to actually know how to do the job independently, at which point you are promoted from “junior developer” to “senior developer” and your total compensation roughly doubles (mostly because the amount of vesting stock increases), or they fire you because you can’t learn how to do the job (which was my problem). Before it became apparent that I sucked at the job itself, employers were competing with one another to attract me to their place of work because I had done so well on the interview coding tests (and also because I managed to distort the truth successfully on the non-technical portion of the interview, but most people distort the truth when they’re trying to get a job). Anyway, cognitively the coding tests are very different from the day-to-day job; the coding tests are more like a type of standardized exam or a series of brain-intensive puzzles to test how smart you are because smart people tend to learn fast and do well at the job. And I was really smart (at least in the specific areas they tested). I don’t have those cognitive abilities anymore. I have no talents or special abilities (and in my teenage and adult life I had tried for years at everything from singing to piano to acting to pre-medicine to leadership and been bad or very bad at everything I tried). I have no leadership skills or special connections—I’m not even really friends with anyone (at least not in the sense that I am their friend and also they are my friend). I do not have a personality that is desirable to employers or skills that are desirable to employers (I mean I still have a degree but I can’t do the job that the degree is supposed to prepare me for). Before I was awarded SSDI but after I was no longer able to do the high paying computer coding work that I used to do (and I honestly tried my best—like I said my last work attempt lasted less than a month) I tried to get a job that did not require cognitive abilities. I made a resume where I put down that I used to work for big tech companies but am no longer able to do that work and applied to everywhere I could. I got an interview at an ice cream parlor. They asked about my work history and I said I developed a disability and cognitively couldn’t do the high paying work anymore. The manager interviewing me expressed concern that I might forget how to mix a smoothie or something. I did not get the job, but I saw someone else who they hired and noticed how personable, smiling, good-looking, and prosocial they were. I didn’t have a chance. I can be friendly with another person initially, but it’s superficial and I can’t keep it up long-term. A second place interviewed me to be a food runner (a person who delivers food from the kitchen to the table), and the hiring manager asked me about my educational background (my resume had the answer but apparently he didn’t read it). I truthfully answered that I have a Bachelor of Science in Computer Science, and he was like “bachelor’s in computer science?” and didn’t hire me. I think he was probably expecting me to have no education beyond high school. A third place I tried to apply to was a local shop, and they said they wanted someone who spoke both Spanish and English (because South Florida has a lot of Hispanic people), but I only spoke English, and I didn’t even take Spanish classes in school (in middle school and high school I took French, and I only remember a handful of French words anyway). Speaking both Spanish and English is a common request of employers in my area and I doubt I could learn Spanish—when I took French as a student it was one of my worst if not my worst class (I was always good at subjects that required logic like algebra and bad at subjects that required rote memorization, and learning foreign language terms and irregular verb conjunctions was entirely rote memorization without clear logic). Ultimately after I couldn’t do professional computer coding work anymore but before I was awarded disability, I sent out more job applications than I ever had, got hardly any interviews, and none of those interviews resulted in me getting an offer, even though the offer would have been for $10 an hour whereas I used to work for $86 an hour on my W-2 tax form (and didn’t need to know Spanish). And nowadays (I’m currently typing in October 2022 but this started years earlier) I sometimes experience muscle rigidity and involuntary muscle contractions (not necessarily at the same time—I don’t know if they’re from the antipsychotic medication I’m on or if it’s another weird unexplained neurological symptom—I talk about the weird neurological stuff more in a later paragraph of this essay) and about half the time I can’t walk or even bike far enough to get to those local places I applied to anymore and I can’t drive there myself either so even if a local employer hired me and even if I didn’t have a sleep disorder (I talk about that more two paragraphs later) I would still have problems. I bought an aluminum kick scooter and found that on some days when I have difficulty walking I am able to use the scooter, but on other days I can’t walk or scooter more than a couple hundred feet, so it varies from day to day. Some days I walk while sort of hunched over, using the kick scooter as a sort of cane on wheels. I have tried to get (or at least considered) every job I could possibly think of and for one reason or another I couldn’t do or get any of them. Heck, I even replied to an advertisement for the armed forces and they didn’t want me. On 11/29/2022 I got a text from the Marines after I replied to their internet ad, explained my situation to them, and they said they can’t employ anyone with a schizophrenia (or in my case schizoaffective disorder, bipolar type) diagnosis, even for non-combat roles. Even bipolar disorder (which I was diagnosed with before being given a diagnosis of schizoaffective disorder or bipolar schizophrenia) isn’t allowed without a special waiver which the military hasn’t been giving out. They said even for non-combat roles you need to pass basic training including firearm training and thought I wasn’t qualified to be trusted with a firearm (which makes sense), and also I’m not in the physical shape necessary to be able to pass bootcamp (on some days I can’t walk more than a few hundred steps in total). Speaking of other jobs I tried to get, in late December 2022 I applied to be a sperm donor and they didn’t want me, presumably because they didn’t want anyone with potentially genetically inheritable mental illness. I saw on social media a post about a remote part-time job that pays an average of over $100,000 a year with a maximum of 90 days training and no degree required, but that turned out to be a scam. Over the years I tried or applied to, or at the very least seriously considered, every way of making money that I could possibly think of.

There is another aspect of cognitive issues that I would like to talk about before I go on to the second reason I’m not working. Cognitive issues can be very non-obvious and hard to detect or predict. For example, I saw a guy on a TV show who had an issue with his brain where his memory lasted 30 seconds. He developed this issue late in life. But even though he forgot everything new, he was still able to read and play piano sheet music just by looking at it. I took private classical piano lessons for 6 years and I was never able to just look at two-handed piano music on paper and play it (unless I had the whole song memorized before and could play it without the sheet music). Sheet music has horizontal lines where the position of the note on the line determines which note to play. The left-handed (bass clef) notes look like this:

Bass clef notes

Source of image: https://wpe.hoffmanacademy.com/wp-content/uploads/2021/07/Bass-Clef-Notes-1.jpg

Anyway, for the left hand (bass clef), if a note is on the second horizontal line from the bottom, it’s a “B” (see image above). That being said, if I saw that note on the piano sheet music, I wouldn’t know it’s a “B” just by looking at it—I have an acronym that I say out loud whenever I look at a left-handed note, “Growling Big Dogs Fight Animals”, where the first letter of each word (“G, B, D, F, A”) corresponds to the left-handed note on that line. So the second word of the acronym is “Big”, which starts with a “B”, so a sheet music note on the second line from the bottom for the left hand is a “B”. I would go through the music, repeating the acronym over and over, and writing down for each left-handed note which note it is on the paper before playing it (in practice I didn’t have to do this for every single note because some notes are right next to each other and in that case I knew which note it was without writing it down). For some reason I was able to learn the right handed notes and know what they were just by looking at them, without needing an acronym, but for the left handed notes no matter how much piano I played or for how many years, I was never able to learn (if I had to guess why I think that maybe it has something to do with the fact that I learned the right handed notes at an earlier time, but I really don’t know). By using the acronym and writing down the notes, I was able to play lots of advanced pieces of classical music by the great composers like Mozart, Beethoven, and Bach. People just assumed that if I could play all these advanced pieces of classical piano music, that I could also read sheet music, but at least for the left hand I could not. And one might assume that because I was able to memorize the correspondence between the lines on the sheet music and the notes for the right hand (for the right hand the notes on the lines are “E, G, B, D, F” instead of “G, B, D, F, A”) that I could do the same for the left hand, but I could not. No IQ test or other neurocognitive test would have predicted this. For various tasks I developed specific workarounds. For example, while reading, I may constantly lose focus and lose my place, but if I underlined or highlighted each word as I read it (or at least followed along with my finger) and I lost focus, I could resume reading from the last underlined word (or from where my finger is). Sometimes I move my bookmark down a line for each line of text that I read (again, I haven’t been able to read an entire book from the front cover to the back in over four years). Or I may forget the names and identities of characters, but if every time a new character was introduced I put a box around it and a star on the side of the page, and I saw that character’s name again, I could go back to the star on the previous page, reread the introduction that I put a box around for that character, and be reminded of who they are (I think some novels have a section that explains who the characters are, which would be immensely helpful to me). Some of these workarounds only work if the text is on paper because if the text is on a computer screen, I can’t mark it up, which can result in me having trouble. Workarounds are great, but sometimes those workarounds can be made unavailable to me, which can cause unexpected problems. For example, the college entrance exam (the SAT) and the graduate school entrance exam (the GRE) have pretty much identical questions for the math and the reading sections, the main difference is the SAT is (or at least was) on paper and the GRE is on a desktop computer. When I studied for the GRE (which was after a couple years of working—around the time I was losing my ability to do my job), I did practice tests that were on paper. When I got to the actual test, it was on a desktop computer. This significantly worsened my score. Like if you just saw how I performed on the paper practice tests, you would predict a similar score on the actual computer test, and your prediction would have been wrong. This is the issue with neurocognitive testing, where they try to predict how you would do in the real world based on tests that are different from the real world. And sometimes those differences are small, like putting text on an electronic screen instead of on paper, but they can produce unexpectedly large effects. Or sometimes certain brain issues of mine are significantly worse on one day than on another, and the test just so happens to be on a good day (for example on some days my pseudoseizures which resemble simple partial seizures are significantly more intense or frequent than on other days). When I took the tech company coding tests, specific cognitive issues popped up, where slight differences in the test between one company and another (for example which coding tools, text editors, programming languages, etc. were allowed) made a massive difference in my score (partly because I had developed specific workarounds using specific tools, text editors, programming languages, etc.). I did fantastic at Amazon’s interview, but the interview tasks were not the same as the actual job, and there were things they didn’t test at the interview that I had serious problems with at the actual job, and nobody predicted those problems ahead of time (if they did, they would never have given me a job offer). Ultimately my cognitive issues got to a point where I could not work around them anymore (and to be honest I even had problems that I concealed from management before then in order to hold onto my job for as long as possible). From what I’ve seen, it is in an employer’s best interest not to make special accommodations for specific brain issues, especially in the interview stage, because people who need special accommodations for one brain issue (like a specific tool or text editor) tend to end up needing special accommodations for other brain-related things or be unable to do other things using their brain that employers weren’t expecting them to be unable to do. Employers want people who can do the job regardless of what gets thrown at them and who can serve as perfect replacements for the person who did the job before them. And yeah, there are special laws in place for people with disabilities, but they are mainly for physical disabilities, like needing a wheelchair or a prosthetic limb or something like that. Brain disabilities are less obvious and harder to predict and make accommodations for. Sometimes people with brain related disabilities need unique accommodations that take time, money, and effort to provide and other people are unwilling (or just don’t care enough) to provide those accommodations. People tend to assume that other people’s brains work like their brains. For example I heard of someone who could do calculus but couldn’t do two digit arithmetic in their head or tell time by looking at a clock with hands for the minutes and hours. Like if they had to get the slope, or derivative as it’s called in calculus, of the function “y = x\^7” (y = x to the 7th power) they could take the derivative and get “slope = 7x\^6” (slope = 7 times x to the 6th power) by multiplying x by the exponent, 7, and then reducing the exponent by one (changing the 7 to a 6), but they needed to use their fingers to count out the numbers. Personally, I would have never guessed that a person who is unable to do “23 - 15” in their head would be able to do calculus, but it’s possible. Like when it comes to brain disabilities, things aren’t obvious or predictable the way physical disabilities can be. I didn’t have to take any neurocognitive tests when I originally applied for disability and I personally am afraid of having to take one to prove my disability because neurocognitive tests can’t predict real world performance the way a real job can test real world performance because the test and the real world are not the same. I have tried multiple real world jobs before and been unable to do them, and I don’t believe that looking at an overall IQ test score or other neurocognitive test score would have resulted in expecting that. Ultimately the best test for ability to do a job is to actually be put on the job and to see, at the actual job, how you do, and when that happened to me I did worse than everybody else (in a group of about 20, including a few people who were hired after me) despite what any test like the coding test predicted. I’ve done multiple jobs before and I was bad at all of them despite what the SAT test or any other test would have predicted. Other people got hired as an apprentice or junior, learned how to do the job independently, and then got promoted (with an accompanying pay bump at the same employer), but I never received any promotion at any job ever.

Sleep Issues

Exiting the tangent where I wrote about cognitive issues, the second reason I can’t work is my sleep schedule, which (without any apparent trigger or logical explanation) stopped responding to daylight beginning some time toward the end of year 2021 I believe (I don’t remember exactly when). My sleep schedule is not precisely predictable, but I tend to go to sleep and wake up each night later than I did the night before, resulting in me sleeping around the clock. For example, each day, when I sleep naturally, I sleep about 9 hours (if my sleep is uninterrupted), but on January 4, 2022 I woke up at 2PM. The day after that I woke up at 4:30PM. The day after that I woke up at 7:40PM. The day after that I woke up at 7:45PM. The day after that I woke up at 11:10PM. The day after that I woke up at 11:20PM. The day after that I woke up at 10:13PM, so my sleep time doesn’t necessarily get later each and every time, but the general trend is for it to get later. Just laying in bed in a pitch black room at night doesn’t make me tired or go to sleep. Normally the sun regulates the sleep wake cycle, but for me it doesn’t—I sometimes feel like it’s the middle of the night when it’s actually the middle of the day and the bright Florida sun is shining on my face. I tried to normalize my sleep by taking sleeping pills (I’ve tried three different sleeping pills: over the counter Unisom Sleeptabs, Benadryl, and prescription benzodiazepines) in the evening but they only make me fall asleep when I already feel tired and oftentimes I don’t feel even the slightest bit tired even at 2, 3, or 4 AM. I bought caffeine pills but I never took them because caffeine might trigger a manic episode and it’s not good for my health (and then my parents threw them out). I also tried making the lights dim at night and exposing myself to sunlight during the daytime but that made no noticeable difference. There is something wrong with my circadian rhythm. If I worked a nine-to-five job, I would probably fall asleep during my job. I don’t know why my circadian rhythm is messed up, only that it is messed up. Neither my previous psychiatrist (Dr. Alexander Pushka) nor my current psych doctor (Advanced Practice Registered Nurse Edgar Matamoros) take issue with it as long as I’m not in a state of bipolar mania (bipolar mania usually includes getting less sleep, but my number of hours of sleep hasn’t changed). Oh, and this is an update written on 10/7/2022, but I did some research and this phenomenon of tending to go to bed and wake up later each day than you did the day before is called Non-24-Hour Sleep-Wake Disorder (or Non-24-Hour Sleep/Wake Phase Disorder) and the only FDA approved drug for it, brand name Hetlioz, is only approved for the blind and I’m not blind (this disorder usually happens to people who are completely blind and cannot see any light), fails 80% of the time even on the completely blind, and costs over $25,000 a month, so I think I’ll probably just be living like this. I made an appointment to see a sleep specialist, Dr. Boris Betancourt, for January 19th 2023. Anyway, I’ll see what Dr. Betancourt says and maybe try something but if it doesn’t work I might just be like this for life—Wikipedia says this condition has a duration of “lifetime”. This is an update on Jan 21, 2023, but after talking to Dr. Betancourt (who didn’t even recall the name of this condition until after I showed him some articles) I started taking 3mg of over the counter melatonin tablets at night and exposing myself to extra light during the daytime. I don’t think the light makes any difference and I’ll see if the melatonin works. Update on Feb 11, 2023: I’ve been waking up between 7AM and 2:30PM these past 3 weeks, so maybe it works (I sort of get the impression that it gets a little later on average but not by as much each day as it used to, but I haven’t run the numbers yet)—I’ll have to give it more time and then run an A-B-A-B single subject design experiment (I’ll talk more about what that is later) to make sure that the melatonin consistently produces this effect and that it’s not some sort of coincidence or false impression. The quality of sleep definitely is worse than when I let myself sleep when I naturally felt tired without melatonin. When I was consistently sleeping around the clock I would have a moment when tiredness just hits me, I would put my head on the pillow, fall asleep quickly, sleep without interruption, and wake up feeling refreshed (even if the wake up time was like 10PM), but on melatonin now none of those things are true for me. I often find myself in a state where I feel tired but cannot sleep while using the melatonin (and this is without using an alarm clock, if I used an alarm clock I would get even less sleep and feel even more tired, and lack of sleep makes me feel depressed and worsens my cognitive functioning even more). Also on the melatonin bottle it says “limit use to two months with a break of one week” and if taking melatonin becomes a permanent thing for me I will not be doing that, and I don’t know what going against the warning on the bottle will do. Oh well. This is an update on my sleep: I last woke up at 7:24 AM on 3/12/2023 and I’ve been awake ever since even though it is now 4:20 PM on 3/13/2023. I’ve been awake well over 32 straight hours and this isn’t normal for me. I took the 3mg Melatonin last night but I didn’t fall asleep from it. I don’t even know anymore. I can’t guarantee my attendance or RSVP ahead of time because of unpredictability in my sleep schedule. This is an update on 3/24/2023 but after my sleep got significantly desynchronized from the 24 hour cycle the melatonin stopped working so I stopped taking it, and honestly, I feel much more alert and well rested this way, sleeping at abnormal hours the way I do naturally, so I’m just going to keep doing that. This is an update on 4/15/2023, but I started taking the melatonin at 10:30 PM each night again, and I slept at night for several nights, but then last night I took the melatonin at 10:30PM and didn’t fall asleep until after 7AM this morning, so the melatonin really isn’t reliable long term. Now my sleep is desynchronized again after having been asleep all day and there is no use trying to sleep at night tonight, even with melatonin. The overall impression I get is that it kinda works, but not well. I also tried blue light therapy and that didn’t work at all, it’s no better than just going outside in Florida and getting some sun on a day when the sky is blue, which again didn’t help.

This is an update on Jun 9, 2023, but I discovered something people who don’t have Non-24 may not understand about sleep after discussing my condition with a person who doesn’t have Non-24. The guy who I was discussing my condition with thought sleep works kind of like food. Like if you miss breakfast, you just eat a bigger meal later on. Sleep doesn’t work like that. Like if every day you get in bed at 10PM and get out of bed at 7AM and one night for some reason you have insomnia and can’t fall asleep all night, you won’t just start sleeping uninterrupted from 10AM to 7PM. You might be able to take a midday nap, like a Siesta (which I know they used to do in Spain), but you won’t be able to have a full-length, deep, uninterrupted sleep with sunlight in your room that you can see on the inside of your eyelids when you close your eyes. Like imagine that such a person has a device hooked up to their head (like an EEG machine) that can detect when they are asleep by reading their brainwaves and it will shock them awake after a short time if they fall asleep during any time that’s not between 10AM and 7PM. The idea is to try and force them to sleep each day between 10AM and 7PM despite the fact that that’s not naturally when they feel tired. Assuming they still get regular daylight exposure, they will never sleep uninterrupted throughout those hours even though they get woken up when they sleep during any other hours. Instead what will happen is that at night, when they normally sleep, they will fall into brief “microsleeps” (defined as “involuntary episodes of sleep lasting a few seconds, sometimes with eyes open”) and then get woken up. Like they will constantly be in this sort of half-asleep state, especially at night during the time they sleep naturally. They will not just naturally start having a full night’s sleep between the hours of 10AM and 7PM, especially if they get normal daylight exposure and don’t have any sort of sleep disorder. Like people are hardwired to have a certain time when they get tired and a certain time when they are most alert and you can’t force them to sleep during the time when they’re most alert, even if they’re sleep deprived, especially if it contradicts with their daylight exposure. Non-24 is a debilitating condition for the people who have it and in general if they are forced to be awake during the day, instead of adjusting to their forced sleep time, they instead just fall into “microsleeps” or end up in a half-asleep state during the day and still can’t sleep at night. Trying to get a person with Non-24 to sleep at night is kind of like getting a person with a regular sleep schedule and regular daylight exposure to sleep every day from 10AM to 7PM. Like it just doesn’t work. Oh, this is an update on March 1, 2024, but my sleep became normal for like a month and then I went back to sleeping during the day and being awake at night. I don’t know what’s going on. This is an update on Sept 7, 2024, but I had a two or three week period of waking up between 2 AM and 5 AM fully rested and not wanting to go back to sleep. Again, I don’t know what’s going on or why, and at this point I don’t care. I just go to sleep when I feel tired and sleep until I’m done and I don’t worry about the time. If I sleep at night or sleep during the day I don’t care. This is an update on Sept 17, 2024, but I just woke up at 11:30 PM after nine straight hours of sleep. From now on I’m just not going to keep track of my sleep. It is more or less random now and I don’t care and I am unwilling to lose sleep to accommodate any employer. This is an update on Dec 11, 2024, and I am not exhibiting the average of 1-hour delay in my sleep schedule every 24 hours characteristic of Non-24, but my sleep is still not normal or good for working a nine-to-five job and I will not work a job half-asleep.

Transportation Issues

Anyway, having finished the section on sleep, the third reason I can’t work is transportation. I gave up driving after I got in three (at least I think it was three—I don’t remember exactly) car accidents that were my fault in a roughly six month period and one time I almost died due to almost getting hit on my driver’s side door by a vehicle going highway speed. The most common error I make is not turning at the right time or with the right angle when making a sharp right turn from a side road with a stop sign onto a main road—I end up going partly into the lane one to the left of the rightmost lane and hitting a car driving on the main road or turning too early and hitting the curb because I don’t have a mental concept or picture of how my vehicle is positioned relative to things around it like road lines or the curb (if there’s no curb I fear the side of my vehicle will hit the stop sign, so in practice I usually end up turning too late and hitting a car in the lane one to the left of the rightmost lane). In addition, because I don’t have a mental concept of how my car is positioned relative to things around it, changing lanes in traffic is risky for me as I don’t have a good sense of whether I am going to hit another car while doing the lane change (and yeah, I try to look in my blind spot but that’s also risky as I don’t have good peripheral vision with thick glasses and end up turning all the way to the side to look in my blind spot and can veer off my lane while doing that). Also, for some reason I have never had a sense of direction or navigation (some of my brain issues might have to do with asymmetry in my brain’s hippocampus visible on an MRI, which might explain why I was the only one who couldn’t escape a corn maze on their own, but honestly I don’t know why) so I have to constantly be looking at Google Maps instead of looking at the road while driving, which is dangerous for me. This was without Google Maps (the person in the passenger seat was telling me which turns to make), but one time I ran a red light because I just wasn’t paying attention (the person in the passenger’s seat pointed it out to me). Also, I have pseudoseizures (non-epileptic seizures) which resemble simple partial seizures (I talk about them more later in this essay) and the epileptologist Dr. Alberto Pinzon told me not to drive with them, even if they’re not epileptic seizures (the difference between epileptic and non-epileptic or pseudo-seizures is that the latter don’t show up on an EEG). These non-epileptic or pseudo-seizures could cause an accident, although in practice the cognitive issues like missing red lights are more dangerous than the little seizures. Also, Dr. Boris Betancourt, the sleep specialist, said not to drive with my sleep disorder. Even when I’m not sleepy, my attention isn’t good and there is something off with my brain which makes me a danger to myself and others on the road—and yes, I have gone to driving school and I even went through an advanced bus driving training program after I (years back) applied to be a bus driver, but the instructors determined that I was unteachable, and they previously bragged that they even managed to teach someone who had never driven a car before. I remember with the bus driving instructors they would manage to make some progress with me and then the next day or the day after the progress was undone, and at first one instructor believed that if I just tried harder than everyone else I could do it but she eventually changed her mind about that. Anyway, because of my inability to safely drive, I rely on Uber or Lyft and my parents (who I live with due to my mental illness) to drive me places because I don’t live in a place where many things are within walking distance. That includes jobs. I mentally am not able to do the high paying work that I used to do, so if I did work (assuming that anyone would accommodate my unpredictable sleep schedule and hire me with a five year work gap due to being on disability for bipolar schizophrenia, interpersonal issues, and cognitive difficulties) it would have to be at a job that does not require much cognitive facilities, which would be some minimum wage job. The cost of the Uber to and from work would take up almost half of my paycheck if I worked minimum wage. The public transportation system in suburban South Florida, where I live, isn’t good, and transportation is an issue. Like the buses come once every 30 to 60 minutes and usually don’t head to where I need to travel. In a state where there are almost as many cars as people (source: https://www.valuepenguin.com/auto-insurance/car-ownership-statistics ), I can’t compete job commuting wise with people who can drive. The average commute in the US is over 25 minutes by car one-way; I can’t commute to places that other people can commute to.

Social or Interpersonal or Personality Issues

This used to be the longest section of the essay, but I’m rewriting it to make it shorter and more up-to-date. My personality issues fall into two categories: ego size issues and social functioning.

First, ego size issues. I remember in grade school writing my name on the whiteboard in all capital letters, bigger and higher up than anyone else’s name. It reminds me of the way I saw Donald Trump’s name on a billboard once, higher up and in bigger letters than any other name on the billboard. That being said, unlike Donald Trump, I was never the CEO or President of anything in my life, not even class President or the President of any club. A woman with the body of a potato who I went on some dates with in the past described me as “narcissistic”, which is reminiscent of Narcissistic Personality Disorder (NPD). I had serious problems working on teams with other people, both in university and in a work setting. I remember in high school wanting to go to Harvard, the most selective university, or maybe if Harvard rejected me I would go to Duke and get married at the Duke chapel, the most magnificent chapel with the longest waiting list to get married there (in the end every single Ivy League school including Harvard and Duke rejected me despite applying with a 1540/1600 SAT score and also I ended up unable to find a wife, ever). Anyway, the following is from my Form SSA-3373 from my 2024 Continuing Disability Review of my SSDI benefits:

Screenshot from old disability form

👆 As you can see, that’s a very narcissistic response. I seriously wanted to become President of the United States and then end democracy, become dictator of the United States, and then from there The King of planet Earth, but that’s insane. I was kinda manic/delusional at the time. I acknowledge now that that will NEVER happen. Nobody is interested.

Anyway, second, this paragraph will deal with my social functioning. DDS (Disability Determination Services) disability examiner Tonya Morris Spears (I believe in Pensacola Florida in year 2019 or 2020) and/or DDS physician or medical specialist Mercedes DeCubas Ph.D. wrote that I have “marked” issues interacting with others, that “marked limitations in social functioning are present”, that I have “social interaction limitations”. My therapist, Dr. Maria Karilshtadt-Byk, told me that I have “no boundaries”. One of the symptoms of Narcissistic Personality Disorder (NPD) is “diminished ability to empathize with other people’s feelings”, and I definitely have some sort of lack of empathy and/or sympathy and/or care and/or care for the feelings of others. I don’t know which exactly it is, but I have a deficiency or impairment of some sort there. To provide anecdotal evidence of that, before cutting off contact with me, a woman with a Traumatic Brain Injury (TBI) who I had sex with a handful of times in the past told me in an email that she could not call me a friend to her (despite me believing that she was the closest and most enduring female friend to me) and she wrote that “you don’t know what people are going through, and based on my interactions with you and on what I’ve seen of your social media presence [which is mostly self-focused/self-interested/self-centered/egocentric/narcissistic ranting on Facebook], you don’t care.” I don’t know, but I guess that makes sense given that I never ask people I know (or used to know) how they’re doing (perhaps I don’t care). For example, I would meet someone who used to be a childhood neighbor friend at our local gym and my mom would ask me “How is he, that childhood neighbor guy?” and I would reply “I don’t know. I didn’t even ask or care. I just know he hit a personal bench press record at the gym”. Something like that. But yeah, I’m kinda like that with everyone. No real relationship. I don’t think I’ve ever really been someone else’s real friend before. Acquaintance, sure, but not real friend. I think that’s why I’ve never had a wife, fiancée, or girlfriend despite trying everything to obtain one. And I tried really, really hard. I was on like 5-9 different dating apps for 11 years. I was going to Meetup and Eventbrite events 6 afternoons a week for years. It’s hopeless for me; I’m going to die single and alone. I don’t even have friends to serve as references to list their contact information on job applications. My old managers blocked my number and LinkedIn due to harassment; I have no good references.

This is a side note, but I don’t know if I’m capable of love (not including obsession or infatuation with a woman i.e. “in love”). For example, my parents got me a pet parrot when I was 13 years old, and he’s a cute parrot, and I wanted him at the time, but I don’t love him. My parents take care of him. Sometimes when I’m eating fruit or nuts or something like that I’ll share some with him, but the bulk of chores involving him falls on my parents. When I was away from home, like at university or work, I never missed him. When my mom is away from him she’ll ask to FaceTime on the iPhone with him, but I never did that. I am fairly certain my mom loves him more than I do. For example, if I found out my parrot were dead of natural causes I don’t think I would mourn much (less loud squawking, more sleep for me), but I’m sure my mother would be devastated. But yeah, I don’t know if what I have is a lack of love or sympathy or empathy or care for the feelings of others or what, but there is some sort of lacking that I have, and it affects my social/interpersonal functioning. I could talk more on this subject, but it would be a lot of hypothesizing and musing so I think I’ll just end this section here.

Motivation Issues

Anyway, finally going off that tangent about my social issues, the fifth reason I’m not working is that I have no motivation (note: this fluctuates over time with my mood, which changes to a very large extent with no outside interface despite me taking psychiatric medication). I often don’t enjoy doing the things I used to enjoy (reading, watching TV/movies, listening to music, playing video games, browsing the internet, etc.), a symptom called “anhedonia” (note: in the first half of year 2022 I had severe anhedonia and actively desired to die and thought about killing myself repeatedly, but this changed to some extent in the second half of 2022). It’s not uncommon for me to want to die, and I spend most of my time laying in bed or just hanging out with my mother, who is the only person I am close to due to my lack of close friends, a girlfriend, or other close relationships. At the time of writing in year 2022 I don’t have the motivation or concentration to do much of anything (except maybe watch less than a minute long TikTok videos of hot young women called e-girls doing cute dances)—like I wrote earlier in this essay, even paying attention for the entire duration of a TV show is a feat for me. My life is so pointless and I wish I were never born so that I wouldn’t have to go through the effort and the pain of committing suicide. I am a worthless individual. To be honest, what I really want and have wanted for years is for a doctor to quickly and painlessly put me to sleep forever. I have never believed in God (well maybe God created The Big Bang and then allowed everything in the universe to happen on its own according to the laws of physics from then on, but I definitely don’t believe in Hell), so I have no fear of upsetting God or any religious rules by killing myself, and also I don’t believe God put me on this Earth for any special purpose, so I don’t see me dying as a loss or anything like that. Anyway, I tried three different antidepressants (Prozac, Viibryd, and Wellbutrin) and they didn’t help. Talking to professionals might have actually made it worse. I have literally nothing to live for and no psychiatric medication or talk therapy can change that. Heck, even when I don’t feel sad or depressed at all, I think to myself that I wouldn’t mind if I died; I serve no purpose. I don’t know why I exist. I’m a total loser—I have failed at every significant thing I have tried to attain, from career success to relationship success. I was a very ambitious kid; I wanted to go to Harvard or MIT, become a psychiatrist or CEO, get married, have kids, and become a politician. None of my dreams in life materialized as I envisioned; I didn’t even get close. Some Christians believe if you commit suicide that’s a sin and can impact your ability to go to Heaven, but I don’t believe in that stuff. Wanting a physician assisted suicide is not something that I only experience when depressed or anhedonic—I truly believe that there is nothing for me in this world and my life basically now consists of passing time doing pointless things like scrolling through Reddit or TikTok on my phone before I eventually one day die alone, single, with no children, having accomplished nothing. Oh, and this is an update on March 2, 2024, but my depression went away and I started enjoying things like music and then I stopped wanting to die, so it fluctuates over time.

Anyway, speaking of having nothing to live for, if I get kicked off disability, I anticipate making a suicide attempt. Please do not contribute to me killing myself. I feel trapped in my life and don’t see any other way out. Also, being on disability is not fun for me (I mean it’s better than being unable to get and keep a job and also not getting disability benefits, but I never chose this life). I hate my disabilities so much and deeply wish that I were a non-disabled, normal, functional human being (in both work and social life).

Additional Information Including Neurological Symptoms

Also, it is of note that the core, positive symptoms of my form of bipolar disorder, bipolar schizophrenia, or schizoaffective disorder (bipolar type) are not what make me unable to work. In the past, I did my job while I perceived the walls were shimmering (note that this might actually be a neurological symptom and not a schizophrenic hallucination, see later paragraphs). I showed up to work depressed but still showed up (when I was 13 or 14 I had depression so severe that I couldn’t move or get out of bed, but the severity of my depressions since that first one have been less than that). I got fired for delusional manic psychosis, but that didn’t stop me from finding another job in the past. These other things like the specific cognitive deficits, sleep disorder, inability to safely drive myself, and social issues are what make me unable to work, not the core symptoms of my schizoaffective disorder (or maybe it’s actually some form of bipolar disorder, I don’t know). And my medication does not help with these non-core symptoms (in fact I don’t even know if it helps with the core symptoms—I have so many symptoms and they all get better or worse or even vanish entirely all the time for no visible reason and with no intervention, so if I take a medication and then one symptom gets better or worse, or even goes away entirely, I don’t know if that happened because of the medication or if the timing was a coincidence). Regardless of whether I take or don’t take medication, I am still unable to work. To be honest the only reason I even bother with medication is I’m afraid of getting kicked off disability during a Continuing Disability Review if I refuse medication—my medication is (at the time of writing, before April 2023) in the form of a long-acting injection so it’s not like a pill that I can just skip taking—if I refuse a nurse will note it and it can count as treatment noncompliance which can look bad during a disability case. Note it is now March 2nd, 2024 at the time of writing and I am no longer seeing a psychiatrist or taking medication (they didn’t work), but I am trying to see a psychologist, Dr. Karilshtadt-Byk, instead.

One additional thing that I’d like to mention. I have experienced all sorts of unexplained neuro-psychiatric symptoms over the years. For example, there was a point where for no reason, and without any emotional response, tears would roll down my face or I would randomly burst into laughter (this is called “pseudobulbar affect”). There was a point where parts of my body would shake or random muscles would involuntarily contract, but no seizure activity showed up on an EEG (Dr. Alberto Pinzon did a 4 hour video EEG in South Florida on 4/27/2020 and I pushed a button when I experienced weird stuff from my brain or partial-body shaking, but he didn’t see any seizure activity in the readings, so he classified these phenomena as “pseudoseizures” or “non-epileptic seizures”, which is the new name for “pseudoseizures” because people used to think that if they were “pseudo” that people were just intentionally acting out, but they’re not). There was a point when my handwriting got small for no reason, like what sometimes happens with people with Parkinson’s disease, but I didn’t have Parkinson’s Disease. There was a point where my speech temporarily involuntarily changed and it started sounding like I was talking in a foreign accent (called “Foreign Accent Syndrome”). According to Wikipedia, that syndrome is usually caused by strokes, but neurologist Dr. Howard Kreger ordered a brain MRI of me and it showed no sign of past stroke, brain tumor, or any other abnormality other than a little structural deformity around one of my brain’s hippocampi which has no known cause and according to the person who wrote the MRI report may be congenital (although my mother and father’s brain MRI’s didn’t have it). There was a point where light sources would suddenly start twinkling and my eyes would be pulled towards them, symptoms which resemble occipital lobe seizures, but again I never showed any seizure activity on an EEG. There was a point where I would be looking directly at an object, like a stop sign, and it would appear closer than it actually is or bigger and then it would appear the reverse, over and over again in a come-go-come-go or on-off-on-off pattern, a symptom called “Alice in Wonderland Syndrome”, which according to Wikipedia can be associated with a variety of different things like brain lesions or migraines, but my brain MRI showed no brain lesions and this symptom didn’t go along with any sort of a headache. Sometimes I hear a loud ringing in one ear that comes and goes repeatedly, and sometimes I randomly have double vision (where my eyes go out of focus without me wanting them to), often repeatedly going in and out of focus for a period of time. I honestly can’t recall or even describe all the random weird brain sensations and symptoms that I have experienced, and I left some that I can out for brevity. Maybe every 2-10 months (starting in year 2017 or 2018) a new symptom or group of symptoms appears and an old one or an old set of symptoms goes away. Also, symptoms at a given point in time sometimes appear to all affect the same area of the brain, like there was a time when most of my symptoms resembled various kinds of simple partial seizures of the temporal lobe of the brain (ex. feeling of strange familiarity or deja vu, sudden very intense fear, smelling an unpleasant burnt smell), so they all affect that part of the brain, but the temporal lobe symptoms have since all gone away and my symptoms have moved on to a different area of my brain, so it’s like the affected area of my brain moves over time. It’s almost like whatever condition I actually have can produce almost any brain-related symptom (depending on which area of my brain it’s affecting), from involuntary contractions in any muscle in my body or face to various sensations including pain (like in my fingers and toes). The symptoms appear in “clumps”, though, like there was a time when the involuntary muscle contractions were happening mostly in my right arm, so maybe there is a part of my brain that corresponds to that part of my body, but again the affected area of my brain and corresponding symptoms “move” over time. I have no explanation for any of it and no doctor has ever been able to explain any of it. My diagnosis of bipolar schizophrenia or schizoaffective disorder (bipolar type) doesn’t encompass most of the stuff I go through, but “doctors don’t really know” isn’t in the SSA blue book, and since I have a history of mood issues and delusions, that’s the closest diagnosis that I could get and it describes what was seen in the past. I do not believe that diagnosis is 100% accurate and it does not capture all or even most of the symptoms that I go through (and it might even be a misdiagnosis—for example some other rare, undiagnosed neurological disorder may have caused all or some of my symptoms or maybe I actually have bipolar disorder with some rare undiagnosed neurological condition). I suspect that it’s some sort of rare evolution of bipolar disorder that changes over time, but nobody truly knows although they might make assumptions based on what they see during a snapshot in time. Anyway, doctors tend to avoid writing down in the medical records that they don’t know, like when the epileptologist Dr. Alberto Pinzon put down “pseudoseizures” in my medical records, the reality is that pseudoseizures virtually always resemble whole body shaking or passing out or in rare cases staring into space, not the symptoms I’ve had which more closely resemble simple partial seizures or focal aware seizures (but without the accompanying readings on an EEG, so they’re not “real” focal aware seizures), and I can’t find any record of pseudoseizures having ever resembled what I have, so I think he was just writing down the closest thing he could think of but I believe the reality is he doesn’t know. These pseudoseizures which resemble simple partial seizures also are disabling because they happen all the time (sometimes over a hundred times an hour, at least in year 2022), on most days of the week, and they are very distracting. They are part of my cognitive issues. I don’t believe anybody actually understands internally what’s wrong with my brain or knows how to fix it—the human brain is very poorly understood from a medical perspective in comparison to other parts of the body. Like in 2019 I went to outpatient behavioral health (a place called FHE Health in Florida) after a psychiatric hospitalization and a doctor there gave me a diagnosis of “conversion disorder” based on involuntarily partial body shaking (also at the time I needed a cane to walk), but conversion disorder, like functional neurologic disorder, is based on a diagnosis where no physiological cause can be identified—all the tests show up normal. Rather than writing “I don’t know the cause of these symptoms”, doctors like neurologists write down big words like “functional neurologic disorder”, sometimes even in cases where the symptoms do not match the symptoms typically seen for this diagnosis, just because “I don’t know” isn’t something they explicitly write out. Instead of explicitly writing “I don’t know”, they do other things like refer you to someone else, who refers you to someone else, who writes down a made up diagnosis like “conversion disorder” or “functional neurologic disorder” that is not based on any real biological cause. With my conversion disorder diagnosis that I was given at outpatient behavioral health, the psychiatrist basically said “I can’t treat this” and referred me to the therapist for treatment, and the therapist said “I can’t treat this”, and referred me back to the psychiatrist, so I was in a loop and nobody could do anything about my symptoms. According to the Wikipedia page on functional neurologic disorder, “neurological symptoms which are unexplained by organic disease are common in neurological services, accounting for up to one third of outpatient neurology clinic attendances, and associated with as much self-reported disability and distress as those caused by organic neurological disorders.” Basically, when it comes to the human brain, stuff like this is not that rare and despite that, doctors really don’t know, but it can be disabling nonetheless. Also, I found an online Reddit/Discord group for people with a conversion disorder diagnosis, and despite these people all having the same diagnosis, they all had different neurological symptoms—the only thing most of them seemed to have in common is a history of or concurrent psychiatric diagnosis. We are in many cases unfixable and unhelpable. We like to think that modern medicine is so advanced, but when it comes to the human brain it’s really not—doctors don’t even know how lithium works and it’s been FDA approved for classic type 1 bipolar disorder since 1970. This sentence was originally written on Sept 10, 2024, but speaking of Lithium, I was on 1800mg of Extended Release (ER) Lithium every 24 hours (900 mg of ER Lithium Carbonate in the AM and 900 mg of it in the PM) for like 6 or 7 years in the past (which was a very high amount of Lithium) and I’m not on it anymore, so maybe I had some sort of weird reaction or something or it affected or changed my brain somehow; I don’t know. I was on Lithium from around the age of 17 to around the age of 24, so when my brain was growing new brain cells, I don’t know if that matters. Anyway, this is an update written on April 3, 2023, but today I saw Memorial Healthcare System neurologist and epileptologist Tarek Zakaria and after I showed him all this stuff, he didn’t have any scan or blood test which I haven’t already had that could show a visible, physical, biological cause, and he didn’t know what my condition was based on the symptoms, and suggested maybe I try some sort of psychological, brain-performance testing, but I refused because I was afraid, given my high or even very high IQ test scores (like over 125) in the past, that such testing would show above average cognitive abilities in certain or even most areas and then I would have a Continuing Disability Review and these above average scores will be used to try and get me kicked off my Social Security benefits, so I said I’ll delay such testing. Also, I know I mentioned pseudoseizures, but most of my old pseudoseizures by this point (in year 2024) have been replaced by involuntarily muscle contractions that come and go with similar frequency as the old pseudoseizures, so I think they’re linked in the same condition. Also now (in late 2024) I’m having involuntarily eye movement with the same repetition or frequency as the symptoms mentioned in the previous paragraph. Really a whole lot of my symptoms over the past 5+ years have all had a similar repetitive come-and-go or on-off-on-off pattern, so I think they’re all linked in the same underlying condition even though the symptoms over time appear different, but I do not know the name of that underlying condition and neither does anyone else. This is an update on April 13, 2023, but while sleeping last night I was woken up by a flashing white light that I saw even though my eyes were closed, a loud ringing noise in one ear (like tinnitus) that came and went and then switched to the other ear, and a sensation of horror. Sometimes a sudden really intense fear is a symptom of a simple partial seizure. I don’t know what the hell it is, but no drug I’ve ever tried appeared to have any effect on whatever condition this is, so at this point I just ignore it and don’t talk about it. Oh, and these don’t look like regular schizophrenic auditory or visual hallucinations, which I don’t have and have never had. I never hear voices or see spiders that aren’t there or anything like that. I don’t really know what I have, it’s pretty ill-defined. If I yelled or made a fuss every time something weird from my brain happened I would constantly be yelling and making a fuss about something that nobody on Earth could do anything about and it would be useless so I just do my best to ignore it and act normal. Like yeah, I’m seeing flashes of light or spots of light or double vision or something like that but I’m just keeping it to myself.

Here’s an additional thing that I’d like to mention. Some time in 2022 I believe I switched from seeing Dr. Alexander Pushka to APRN Edgar Matamoros for psychiatric treatment because Dr. Pushka was billing me each time I saw him for CPT code (insurance billing procedure code) 90833 - 30 minute psychotherapy - in addition to the CPT code for a regular office visit, but he never actually did any psychotherapy. Like each appointment basically consisted of Dr. Pushka asking “How are you?”, me saying “Fine”, him injecting me with the antipsychotic medication Invega, and then me leaving. I think he was trying to squeeze extra money out of my insurance on each visit with the extra CPT code. Also, I don’t think it was an honest mistake because in the “Psychotherapy” section of the medical records he would make stuff up and put it in there which gave the impression that actual psychotherapy happened. Oftentimes he would just copy-paste from a previous record. Edgar Matamoros’s medical records aren’t perfect (like one time he unintentionally put in that I was “noncompliant” instead of that I had a history of noncompliance, which is why I was on the monthly injection instead of the daily pill at the time, but in the next month’s medical record he fixed that). This error concerned me because I heard of people getting kicked off of or rejected for SSDI due to treatment noncompliance, and I really don’t want to get kicked off because I genuinely can’t work, but I think APRN Matamoros just made a transient little honest mistake whereas with Dr. Pushka I think it was more consistent, intentional fraud. I wanted to record my sessions with Dr. Pushka using the microphone on my phone to prove that there was no psychotherapy and he was just making up the stuff in the medical records, but in the state of Florida it is illegal to record a conversation without everyone’s consent and if I just filed a complaint it would be Dr. Pushka’s word against mine and he would get away with it and might have retaliated. I’ve seen about five actual therapists including two psychiatrists who did actual therapy in addition to prescribing medication (with Dr. Mark Root in Michigan it was one-on-one therapy and with Dr. Lewis Winkler in Washington D.C. he oversaw group therapy sessions with me in them) and I never made any progress in therapy or got anything out of it. I don’t have any desire to talk to or see a therapist, and if I were forced to see one I think I would just stare at them and not say anything or ask to leave or not see them anymore after I have given them my backstory. This sentence is being added on April 5, 2023, but basically today I was thinking of maybe going back to an old therapist, Dr. Karilshtadt-Byk, to try and get treatment for my personality (I saw no change or effect from seeing her before), and I concluded that I do not want to say anything to her or see her (even if it were free), and that this isn’t specific to just this therapist. By and large, the issues that I face have no cure and there is nothing I (or anyone else, I believe) can do about them - talking doesn’t help. My plan is to stay on Social Security until I either die of old age or commit suicide or (hopefully) get approved for physician assisted suicide, maybe in Switzerland, at some point in the future. This is an update on March 2nd, 2024, but I am now seeing Dr. Karilshtadt-Byk monthly. I verbally poured my shit on her, but I don’t know if I will be able to keep this up long-term. I’m afraid I’ll eventually get to an appointment where I just say nothing except for maybe a one-word answer here or there. I have never been able to keep seeing a therapist long-term.

Here is the third-to-last paragraph of this essay containing the final reason why I’m not working, and it’s one that people often don’t talk about. I don’t want to. I remember working for Amazon as a computer programmer and waking up every morning not wanting to go to work. I remember struggling every day to do everything in my power to avoid getting fired for as long as possible. I was never good at any job I’ve ever had. I have never received any sort of promotion at any job I’ve ever held. I remember being slower and less capable than everyone else at my job (due to cognitive issues), and needing help from a very kind, very patient, more experienced person (sort of like a mentor employee) on almost every task. A person who I was lucky to have helped me through the job, but who will not be there at every job (he and I don’t talk anymore; I tried to reach out to him, no reply). I remember breaking the work rules during my most recent work attempt by emailing work from my work email to my home email to try and get ahead by putting in extra work at home, and being unable to do the work even with extra hours. It didn’t matter how many extra hours I put in because I literally couldn’t do the job beyond the level of an intern or new hire—other people learned to do it with experience but I didn’t learn. I remember getting fired for delusional manic psychosis without being told that I was crazy—I just got a text to meet my recruiter and bring my work laptop and keycard and he just collected them and that was the end of that job. No warning, no explanation. The Social Security Administration likes to talk about “financial independence through work”, but the reality is that financial independence through work really means financial dependence on private corporations and the loss of the federal government as a source of money. Once you start receiving money from the federal government, it is hard to completely cut you off. In order to get kicked off SSDI against your will, multiple people at multiple different levels have to come to that decision. You can hire a lawyer, fight it, and appeal repeatedly (something that I will do if necessary). You can contact a politician asking for help with a federal agency. With private corporations in the US on the other hand, you are an at-will employee and at-will employment is law (at least in Florida, where I live). That means they can fire you at any point without ever specifying a reason. A manager or a manager of managers at a private corporation can fire you just because they don’t like you or because they like someone else more. They can intentionally hire more people than they need, measure each person’s performance without them knowing, and then without warning fire the bottom people after an arbitrary amount of time (and in some industries they do this sort of thing, it’s called “hiring with the intent to fire”, or hiring extra people so there are “sacrificial limbs” to cut when higher management reduces budget as they are expected to). Some companies who need computer programmers will hire contractors, often through a third party, for some time duration specified in their contract and only hire them directly as full time employees if they’re good, allowing their contracts to expire for the rest (this is called “contract-to-hire” and is something I’ve seen in the tech industry). Totally unexpected mass layoffs are a thing in the private sector (“This just in, after an increase in the interest rate and a change in the stock price, Google is firing 10,000 software engineers effective immediately”). While technically it is illegal for a private corporation in the US to fire someone because of their race, religion, or sexuality, private corporations have learned just to not give people a reason for their firing to avoid even the possibility of something like that being an issue—in many cases they leave you to figure out the reason you were fired. Like I assume that I was fired for delusional manic psychosis before I was involuntarily committed to a psychiatric hospital, but they never actually told me why they fired me, so I had to figure it out after the fact. Ultimately the federal government is a much more reliable source of money than private employers, and it is much harder to get kicked off of SSDI against your will (especially if you can afford a lawyer and have sympathetic representatives) than it is to get fired from a private corporation, especially if there is something mentally wrong with you, and there is definitely something mentally wrong with me (even if my symptoms don’t all fit into the box of a stereotypical mental condition like “typical” bipolar or “typical” schizophrenia or even “typical” schizoaffective disorder). Also, I’m not good at keeping things concealed and potential employers can generally pick up that there’s something wrong with me or that I don’t want to work or don’t care in the slightest about the company or the job. Like I could write a cover letter that says “looking for any job that will hire me - I don’t care but I have impaired ability to pick up or learn work related things” (I didn’t use these exact words when I actually was applying but I did indicate that the reason I was no longer seeking tech jobs was because of cognitive issues) and the general reaction was throwing my resume in the trash. After I was no longer able to do the job of a computer programmer but before I was awarded disability, I applied to virtually every job imaginable and in almost every case my application was ignored or rejected without even giving me an interview. According to the Wikipedia page for SSDI, SSDI was put into effect in 1956, at a time in US history when there were a lot of jobs like “nut sorter” or “bolt tightener on an assembly line”, jobs where the work was completely menial and involved almost no brain work or human interaction. For example, there is a very famous scene in an episode of the old sitcom I Love Lucy (titled “Job Switching”) in which Lucy and Ethel get jobs in a candy factory or a chocolate factory, jobs based off of real jobs at a real candy factory that existed in the US at that time, and they struggle to take chocolates off a conveyor belt and wrap them before they pass by (YouTube search “I Love Lucy chocolate factory”, it’s very funny). Those sorts of jobs have been replaced by machines or outsourced to poorer countries. There was a time in US history when someone with brain damage, no interest in seeing other people, and zero interest or passion could be employed doing something completely menial like that (and make enough money doing it to support a wife who doesn’t work or to buy a house with a few years worth of work if they’re not also supporting a wife and kids), but that time is gone and is not coming back. Employers are looking for people where their job is more than just a job—they’re not looking for someone who is seeking out any employer who will give them money in exchange for their time. On Feb 3, 2023 Joe Biden, from the Twitter account @POTUS, sent out a tweet that began with “My dad used to say, ‘A job is about a lot more than a paycheck. It’s about your dignity’.” Well being recognized as officially disabled by the federal government and not just as a chronically unemployed loser who lives with his parents is in a way a form of recognition and dignity for me. When people ask me “What do you do for a living?” and I reply “I’m on disability due to issues involving my brain”, that gives me a justification or excuse which is better than just saying “I am chronically/permanently unemployed”. People who are chronically/permanently unemployed without being officially recognized as disabled are perceived as lazy, entitled, freeloading parasites who suck money out of their parents who earned it. That form SSA-1099 Social Security Benefit Statement that I get in the mail every year is more than just a tax form—it is proof and validation from the federal government that I am a real disabled person and not just some lazy freeloader. There is no dignity in begging for money, like a homeless person out on the street. If I’m put in that situation I think I’d rather just kill myself.

It is January 5th 2023 and I had another thought, so now this will be the second to last paragraph. I have a representative payee, but I really do not believe I need one. I went on a manic bipolar spending and money giving away spree before I applied for disability, but I haven’t since. I’m actually very financially responsible. For example, I hold on to all my restaurant receipts and check to make sure the correct tip amount went through the transaction on my bank account. While I could try to apply to no longer have a representative payee, I am afraid to do so because I heard no longer having a representative payee can trigger a long-form Continuing Disability Review which can result in being kicked off benefits, and that would be very bad for me because I have no other way of getting money (except maybe selling the fluid portion of my blood if I could convince my parents to drive me to a blood plasma donation place). Like I said, I tried everything from applying to every minimum wage job I could to applying to the armed forces to even applying to be a sperm donor—I can’t make money (and I really don’t want to have to sell the fluid portion of my blood for food money like some sort of blood cow, and selling as frequently as is allowed only pays a few hundred dollars a month anyway). There are some inconveniences associated with being assigned a representative payee for my disability benefits, but I think the fact that the government has deemed me “not a competent adult” in this manner may be a good thing because if the government thinks I’m not competent to manage my own money, how can that same government think I’m competent to survive on my own without benefits? That’s my thinking at least. But I can manage my money; (in year 2023) I use the NerdWallet app on my phone which is hooked into my bank account for my Social Security benefits. Also, like I said before I don’t really know if the medication I was on, Invega, does anything other than give me sexual dysfunction (I was on Invega for about two or three months before my delusions that caused my psychiatric hospitalization went away, but my symptoms can go away on their own after a few months without any medication, so I don’t actually know if that was a coincidence or not). In psychology and psychiatry there is this thing called an A-B-A-B test. From Google: “The A-B-A-B design represents an attempt to measure a baseline (the first A), a treatment measurement (the first B), the withdrawal of treatment (the second A), and the re-introduction of treatment (the second B).” If the condition gets better on every B and worse on the switch from B to A, it can be said that the treatment consistently produces the desired effect, but if it just so happens to get better from the first B but stay the same after the switch from B to A and then get worse on the second B, then the medication doesn’t consistently make things better, so the improvement from the first B was a coincidence. I never had an A-B-A-B test with this medication. With some drugs like Adderall or Caffeine you don’t need to do this sort of testing because the effects of the drug just hits you right away, but if it’s a drug that takes weeks or months to work and symptoms come and go on their own in a matter of weeks or months as well then it’s necessary to A-B-A-B test to know the effect wasn’t a coincidence. My mother doesn’t want me to discontinue medication, though, and my psychiatrist APRN Edgar Matamoros doesn’t even want me to reduce the dose. When I first saw him I said the Invega I was on works well, but I never actually knew if it works well, I just said it does and stayed on the drug because I was afraid that if I went off the drug and had a Continuing Disability Review it would look like I didn’t have schizoaffective disorder if I wasn’t taking the drug Invega which is the only drug FDA approved for schizoaffective disorder. I imagine a Continuing Disability Review is sort of like a case and if I have the diagnosis of schizoaffective disorder on my medical records and I’m taking the medication for schizoaffective disorder, that can build up the case that this is my disorder, but in reality I don’t know if the medication works or if my diagnosis is even accurate given all the weird neurological stuff I also experience. I have some reasons to believe the diagnosis isn’t accurate, for example from Wikipedia it says “the main criterion for a diagnosis of schizoaffective disorder is the presence of psychotic symptoms for at least two weeks without any mood symptoms present”, but in the past my delusions almost always went along with elevated mood (mania), and also I never had schizophrenic style visual or auditory hallucinations like hearing voices or seeing angels and devils or spiders that aren’t there or anything like that (I have heard a ringing noise in my ear that went along with my neurological symptoms but that’s not schizophrenic auditory hallucinations and I have seen shimmering in my field of vision or lights twinkling but those are more like occipital lobe seizures or more properly occipital lobe pseudo-seizures, which is a neurological symptom, than schizophrenic visual hallucinations). Also I read that people with schizoaffective disorder have “disorganized speech and thinking” like people with schizophrenia do and I think based on the organization and clarity of my writing that this description does not apply to me. I was never the one who made the diagnosis of schizoaffective disorder, some psychiatrist at some mental hospital that I was involuntarily committed to (for thinking that the FBI was spying on me and threatening them if they wouldn’t stop) made the diagnosis based on my symptoms at the time, and I don’t know if the diagnosis he made is accurate, but I believe bipolar schizophrenia or schizoaffective disorder (bipolar type) is what’s on my medical records and is the condition I was granted disability benefits for (although maybe some other form of bipolar disorder was in there as well). The symptoms I’ve experienced over the years have all actually happened and there is definitely something wrong with me and my brain, but maybe my actual condition is something other than schizoaffective disorder. Anyway, I tried to tell my psychiatrist APRN Edgar Matamoros about the neurological stuff I also experience but it was hard for me to recall and describe most of the neurological stuff in words so I put it on paper and left the paper for him, but he was out that day so I left it to the front desk lady and told her to give it to him, but he never mentioned it so I don’t know if he got it. I also tried to leave it as a note in MyChart (the medical records system) but he never replied to it or mentioned it or anything so I don’t know if he read it. Even if he does read it, the neurologist Howard Kreger didn’t know what my neurological symptoms were and again the EEG and brain MRI he ordered and the EEG epileptologist Alberto Pinzon ordered didn’t show anything medically wrong so I don’t expect a psychiatrist would know either. I don’t know. I think the right thing to do is conduct an A-B-A-B test on my Invega and settle the presence or absence of a cause-and-effect relationship between Invega and my delusions for sure (it would also clarify whether my difficulty walking is another neurological thing or an extrapyramidal side effect of the Invega), but again I imagine not taking psychiatric medication when I’m on disability for a psychiatric condition could hurt my case for my Continuing Disability Review, especially if the decision to go off medication goes against my psychiatrist’s guidance. Honestly I’m so scared of my upcoming Continuing Disability Review that I saved this essay on my phone and I update it regularly. I also printed out short-form and long-form Continuing Disability Review forms and practiced filling them out to prepare for it. I’m so immensely nervous about it because I’ve never had a CDR before and if I get kicked off benefits I have no other way of getting money. My disability is not clear or obvious so I’m afraid about having to prove it. This is an update on March 2nd, 2024, but I passed my short-form CDR and I went off the Invega and as I went off the Invega I also came off the delusion that a girl named “Erin” who I temporarily fell in love with and who I was fervently internet stalking was just pretending to not be interested because she was recruited into and being paid by an FBI/CIA conspiracy. This makes me strongly believe that the medication doesn’t work because why would going off it make me sane? It seems like I just go through these cycles and changes regardless of medication. Also, I still have the muscle rigidity and walk with the cane despite not being on any drugs anymore. Also, before I tried taking significantly more antipsychotics than the doctor prescribed and the muscle rigidity, cane walking, and pseudo-Parkinsonism didn’t get any worse. I don’t know what the cause is. I really don’t have a logical explanation for what I go through, and honestly nobody really does. This next paragraph was written at an earlier point in time so you can ignore the part about my muscle rigidity being caused by the medication as that has been disproven.

It is January 26, 2023 at the time of writing and this is the last paragraph. I have recently been unable to walk more than a few steps, and even been unable to use my kick scooter for the last few days. In my neighborhood’s gym there is also an arm bicycle for people whose legs don’t work, but due to muscle rigidity I’ve been unable to use that either. I need some form of exercise and I have been unable to get any. Also, I can’t get to the nearest place to my house that has food and my parents only cook one meal a day (I would be lucky if they cooked two). I get hungry and can’t get to food (also food delivery costs more than the food, although companies like Uber Eats hide the full price by increasing the cost of the food and sneaking in fees and mandatory delivery driver tips at the end). These physical issues might be a side effect of my antipsychotic medication (a possible side effect is “extrapyramidal side effects” such as muscle rigidity, dystonias, muscle contractions, pseudo-Parkinsonism, etc). I just sent my psychiatrist, APRN Edgar Matamoros, a message on MyChart medical records system saying that I can’t live like this and am discontinuing injections. I also let my pharmacy, health insurance, and the nurse who administers the injections know (just sent her a text, don’t know if she got it). I have an emergency supply of Invega pills and I can go to the psychiatric hospital if necessary. Honestly, my biggest concern is that not taking psychiatric medication will be noticed during my Continuing Disability Review and could possibly negatively affect my benefits being renewed. I will still be seeing APRN Edgar Matamoros to keep him in the loop and to keep my medical records up to date. Update: APRN Matamoros called after getting my message and said he thinks my symptoms are caused by the medication and is allowing me to transition to a different formula (possibly the pill version). Honestly, I initially started having muscle rigidity before I started any formulation of this medication, even when I was on no medication, and it gets better and worse all the time even with no change in medication, so I don’t know if there is necessarily a cause-and-effect relationship between the Invega and the muscle rigidity, but I’m not going to correct him for now. Honestly, nothing is known without an A-B-A-B test, which I talked about previously. Maybe there is some link to my weird neurological stuff. I sent APRN Matamoros a message on MyChart saying that I would like to be put on the lowest dose of Invega that they make, the 1.5mg daily pills, which is probably not a high enough dose to cause extrapyramidal side effects, but is enough to be able to show on my medical records that I am taking something for the bipolar schizophrenia or schizoaffective disorder (bipolar type), which I don’t even know if I really have. The pill formulation would also save Medicare over $800 a month (the injections cost a lot more than the pills, especially if you buy the pills through celebrity entrepreneur Mark Cuban’s https://costplusdrugs.com/ ). I’ll see what APRN Matamoros says on April 21, 2023. This is an update from April 21, but Matamoros sent the prescription for 1.5mg Invega (the lowest dose they make) to CostPlusDrugs, they received it, and I ordered it from there for a fraction of the price and plan to take it for the rest of my life. It came in the mail and I am taking it every day. This is an update on March 2nd, 2024, but I am no longer taking Invega or seeing a psychiatrist, see previous paragraph where I explained why. This is another update, now on 9/9/2024, but I am seeing APRN Edgar Matamoros again and taking the injectable form of the antipsychotic Abilify (Aripiprazole) and I don’t know if it works but the side effects are mild and it checks the box for treatment compliance so I’m taking it. Also Cogentin (Benzatropine) and Benadryl (Diphenhydramine) failed to have any effect on my muscle rigidity and I later found that the Parkinson’s disease drug Amantadine does have some effect, but nobody knows why, and I asked like a hundred Reddit psychiatrists (by making a bunch of posts over time on the AskPsychiatrist subReddit on Reddit). Nobody knew about my neurological symptoms either. I swear psychiatrists are clueless, you might as well outsource all their jobs to idiots who experiment with psychiatric drugs and read Reddit psychiatry stuff and groups. This is an update on Dec 11, 2024, but I plan on switching from Abilify to Lithium because I was less suicidal when I was on Lithium than when I wasn’t on Lithium and also the Abilify appears to increase my appetite and make me fat.

Sign Off with Date

Date writing completed (without final edits): July 23, 2023

Date writing updated: March 2, 2024

Date writing updated again: Sept 9, 2024

Date writing updated final time: Dec 11, 2024

Bonus Paragraphs Added Later

Bonus Paragraph 1:

Bonus Paragraph 1 has been removed for brevity.

Bonus Paragraph 2:

Bonus Paragraph 2 has been removed for brevity.

Bonus Paragraph 3:

I want to talk about the tendency of hospitals and some doctors to shift blame. For example, take this quote from my medical records:

…

I can’t find it, but basically I’m going to paraphrase and say I recall it said something like “The patient [John Michael Reed] failed to show progress in IOP [Intensive Outpatient Program]. He only went for 1 month despite it being a 3 month program”.

Now here is a quote by me from this essay showing my side of the story:

“… in the past I did outpatient behavioral health at Larkin Hospital and the longer I did it the worse my depression got, and then it gradually got better after I didn’t do it anymore. In practice I don’t think the outpatient behavioral health caused my depression to get worse, I think it naturally just so happens to get worse and better on its own and the timing just so happened to coincide with when I went to outpatient behavioral health, but I also don’t think outpatient behavioral health made it any better either (this is the case with a lot of treatments I have tried).”

Notice how when the hospital talks about it, they use the phrase “the patient failed” wheras when I talk about it, I explain why it didn’t work. Also the hospital is the one who discharged me after the surveys they gave me showed my depression getting worse the longer I was on the program [I think when my insurance saw and they started refusing to pay], but the hospital made it look in the medical records like I just walked out prematurely. I think hospitals try to shift blame for legal liability reasons, and also they pad the medical records with huge amounts of irrelevant fluff, which may make it harder to find mistakes that they made. For example, at the psychiatric hospital of Memorial Regional hospital in Hollywood, Florida, they thought I had depression because I was sleeping during the day, so they gave me an antidepressant. In actuality I had the opposite of depression [mania, which can be made worse by the antidepressant], and I had been sleeping during the day and awake most of the night for years, see the section on sleep issues:

But yeah, the psychiatric hospital prescribed the wrong drug. Stuff like that has happened multiple times before, but you almost never see “We messed up” in the hospital electronic medical records for legal liability reasons (ex. hospital doctor malpractice, etc.). I personally find this frustrating.

Bonus Paragraph 3 completed: Oct 26th, 2024

Bonus Paragraph 4:

This is an update. I posted the following in the Reddit AskNeurology forum:

https://www.reddit.com/r/askneurology/comments/1ghg9f5/should_i_shrug_this_off_as_conversion_disorder/

A neurologist replied:

https://www.reddit.com/r/askneurology/comments/1ghg9f5/comment/lwqepon/

In particular, this point from my essay, this essay, wasn’t correct:

“the reality is that pseudoseizures virtually always resemble whole body shaking or passing out or in rare cases staring into space, not the symptoms I’ve had which more closely resemble simple partial seizures or focal aware seizures (but without the accompanying readings on an EEG, so they’re not “real” focal aware seizures), and I can’t find any record of pseudoseizures having ever resembled what I have”

In particular, the neurologist said that wasn’t correct because pseudoseizures (non-epileptic seizures) can in fact resemble simple partial seizures or focal aware seizures and that I have “functional neurological disorder” (conversion disorder without cause by psychological trauma). I talked to another doctor, a psychiatrist named Stephen Ghazikhanian at Johns Hopkins, about it and he said “We can’t do anything about that”. I tried maybe 5 different mood stabilizers and 10 different antipsychotics and nothing had any effect on my “functional neurological disorder”. Talk therapy made no difference either.

Bonus Paragraph 4 completed: Nov 27th, 2024