(A note before I begin: This entry is going to talk a lot about the goings-on inside an acute-care ward within a mental health facility. For that reason, I am going to use aliases and flat-out mess-ups of names in order to protect anonymity and privacy. Please do not ask me who is who, because even if I do remember, I am not going to tell you. Similarly, if you recognise yourself in these writings and would like to be completely blanked out, feel free to comment.)
Being autistic and over the age of eighteen in today’s world presents us with many challenges, most of which I would never wish upon anyone excepting those who display a profound level of ignorance. People like Autism Speaks, for instance. But that is not what I want to get into here. What I want to talk about is how those challenges mounted, drove me to the edge, and pushed me to do things that I did not think I would ever do.
My arrival in Sydney was not exactly a happy one. How could it have been? The stink of Queensland was all over me. I could feel it in my clothes, in my mind, in my soul. It was like being stained with something so incredibly persistent that acid could melt me down to the skeleton and the stink would still be there. So I was extremely sad when I came to Sydney and made my way to the place I grew up in. Enthusiastic, yes, but also very, very sad.
Then the problems started. Problems securing housing where I could shower safely. Problems securing an internet connection. Problems reintegrating myself with society at large as it existed around me. Problems. Problems. Problems. Not exactly unexpected, of course, but the problem that turned sweet to sour was the extreme difficulty I found in securing actual, workable solutions to the problems. That saying about how family is the best support an autistic individual can have? Well, I am here to tell you that in cases like mine, that is the biggest pile of smelly, rotting, worm-ridden shit you can possibly imagine.
(This is not to say that one of my mother’s brothers is that bad. Just that as a whole, if you needed multiple people in your corner for any reason, you should run, not walk, the hell away from my parental units, most of their siblings, and my cousins.)
So after taking a number of emotional beatings, I was… well, very emotionally battered. When I could be buggered getting out of bed, I was very unpleasant. My ability to sleep without risking hypoglycaemia and seizures was almost non-existent during the times when most people expect people to sleep. And when you add to this the fact that the kind of people I was involuntarily linked to seemed to be cheering and clapping as certain folk were selling their murders to the public at large, well, it is small wonder that I could not cope.
During this time, the more Human reason I came back to Sydney, a friend who happens to be a registered nurse, a lovely lady, and a little troubled herself (I am being secretive to a certain degree here), noticed things were wrong. Well, she had been noticing that since I was doing time in
prison Queensland, but I believe she was worried because instead of the improvement she expected to see when I came back to Sydney, I was instead getting worse. Although I was incredibly frustrated with her for several reasons when she ‘phoned the mental health unit in her local area and the police got involved by the time word filtered to the equivalent in my area, she is pretty much blameless in the whole thing. She just wanted to do what she thought was the right thing, and I do not blame her. None of what followed really met her expectations in terms of procedure or care for my emotions, either.
However, there is blame to be placed, and almost all of it belongs to the various parts of the New South Wales health system that I dealt with.
You see, normies are a very funny bunch. They spend untold millions of dollars on advertising campaigns to convince those who suffer from some form of mental illness that it is okay to seek help and it will not have a negative impact on their place in the world. But when it comes to delivering solutions to have a positive impact upon the lives of these people, those folks quite plainly could not give a shit.
Later in this episode, I had occasion to discuss matters a little with one particularly awesome member of the staff. I will refer to him as Glóin for two reasons. One, although he was relatively bright and cheerful for a psychiatric nurse, he was incredibly plain-speaking. Seriously. In my conversations with him, he had a visible bullshit content of zero, just like a Dwarf would. That moment when Al Pacino says he always tells the truth even when he lies during Scarface? Al was impersonating a Cuban drug-lord impersonating a Dwarf. And Glóin exemplified the fact. Even if Glóin was just humouring me at times, I had no idea because he was frank and honest the rest of the time. Which brings me the the second reason I thought of him as a Dwarf. He has that Dwarvish look. I have no idea how much Scottish ancestry he has, but if the coarseness and orangey colour of his beard is any guide, I would say a lot.
I mention all of this about Glóin because he told me a few bits and pieces about why this hospital is in the state it is. It is not a pretty picture. Now, according to what Glóin has told me, twenty percent of the population of this country will experience some form of mental illness during their lifetime. That is, one in every five people. Let us round down Australia’s populace to twenty million for a second. (I think it is twenty-two million and change, but work with me here.) That is four million people. Now, of that four million people, Glóin has said, another one in five or twenty percent will need to be hospitalised as a result of their illness. That is eight hundred thousand people. Even compared to the hospitalisations that result from diabetes, asthma, or cancer, that is a pretty significant amount.
So, one might ask rightly why this mental health facility from one gate of which Westmead Hospital can be walked to is treated like the birth-defected cousin that the bright and celebrated hospital of the area does not want people to know about (to paraphrase the way Glóin put it). Why, another excellent question goes, do certain health “professionals” act so surprised when people like myself respond very fearfully when told they are going to what I will call Hideyhole in keeping with the general demeanour of this write-up?
In fact, that is exactly the way an ambulance worker put it when they saw me. I was sitting in the Emergency Room of the bright and celebrated hospital of the area, asking to talk to a doctor and explain my situation. In walk two ambulance workers that I, as a younger man, could have gotten some rather long-lasting hits in with. Probably still could today, in fact. The elder just looks at me, and, as if he is addressing a five year old who just threw food at a wall, saying “you’re going to [facility name redacted for privacy protection reasons]“. Gee, thanks pal, it is not as if I already have a stack of paperwork detailing how much abuse and mistreatment I have received in a hospital environment. And because of that, even when the nurse attending me is sweet-talking me and trying to calm me down, I am practically pleading to resolve the whole thing in Westmead Hospital.
(When I explained this part in different wording to Glóin, he was even less impressed. One would think a health staffer would be wanting to back up a colleague. I think the reaction may have something to do with the fact that during the initial stages, it makes his, and the other nurses’, jobs variably more difficult.)
Now, you just saw me (as an aside) about making the nurses’ jobs harder. Well, that big stack of bad and unhappy history I just mentioned also makes the doctors’ jobs harder. I will refer to the doctor that I was assigned as Doctor Why in keeping with my desire to keep myself the only identifiable person in this document (barring any requests from the people concerned in the opposite direction). Doctor Why had the unenviable task of not only explaining to the nurses why one cannot withhold my Lantus from me on the basis of low blood sugar, she also had to reason with me about her desire to start me taking Fluoxetine in mornings and a very low dose of Seroquel in the evenings. To be quite honest, I have no idea what diagnostic label she could have been working from. Very likely, she was instructed in advance to not use any diagnostic labels in conversation with me.
Fluoxetine is an antidepressant that may also have anti-anxiety properties (I forget if Doctor Why told me if it did). Seroquel is an anti-psychotic that can be used to regulate sleep and quell racing thought processes in small doses. A typical dosage for its on-paper use starts at 600 milligrams. Doctor Why wanted me to take 50 milligrams. She started with 25 milligrams, and used the words “baby dose”, but upped it to 50 milligrams after a day.
So, medications used and sussed out, thus began a long game of waiting. This is where the group dynamics of the ward, and some sore points for the nursing staff, began.
In order to understand the latter point, one has to understand the purposes and designations of wards. There are low-security, longer-stay wards where things are fairly relaxed and the patients are pretty much free-range other than stopping for meals or conferences with doctors. There are more medium-security wards for what we will call “acute cases”. That is, cases where the agitation and upset are fairly high, but doctors are fairly confident that they can bring that down to better levels quickly. That is the kind of case I was designated as (for good reason, as it turns out).
There are two other wards where patients are literally locked in, have next to no privacy, and I believe are forbidden most kinds of aural or visual stimuli. The kinds of wards that you would only put an autistic individual in if they proved excessively violent, or if you were particularly sadistic. This point may become important later.
Now, as Glóin put it, the wards that presently exist are too large. Each ward in the hospital can house approximately thirty patients. I think the cut-off point at which they start to divert patients in the case of the ward I was in is thirty-five or thereabouts. Now, the thing is, there are generally only about ten nurses working to care for and supervise that thirty-some patients. On a ward for patients with cancer, breathing difficulties, or diabetes, this is acceptable. Perhaps it is even overkill. But in a ward for persons who are emotionally disturbed, ready to kill themselves, kill each other, or attempt a futile escape, this can stretch nurse and patient alike to their limits.
Ironically, this is not dissimilar from school classrooms. Just as lowering the patient to nurse ratio in a mental health unit allows more individualisation of treatment, and thus delivers greater benefit to the patient, lowering the student to teacher ratio does the same. Odd, that.
This brings me to how the wards as they presently exist can make the life of an autistic adult very difficult. Were it not for the fact that I was sweet-talked into ingesting neurochemistry-altering substances, one of which has a remarkable potential to cause drowsiness, I probably would have been unable to sleep at all during my stay. Not merely because I am, and likely always will be, an erratic sleeper at the best of times. But also because I am not comfortable sleeping with people nearby. And if you have not already figured this out, a facility that houses thirty-some people means (in most cases) two or more people sleeping in the one room.
Now, in any mental health facility, the primary problem for the nursing staff, and to some extent the doctors, is how the patients get along with one another. From the doctor’s point of view, there is also the problem of how receptive the patient is to them. But the point I am getting at is that a mental health facility is designed to help with one of the least talked-about aspects of Human health. That is, the ability to get along with oneself and others.
Please allow me to reiterate a point for a second. The Commonwealth government of the farce that is Australia spends millions of dollars on awareness ads in places like men’s rooms, bus stations, or the sides of buses (among other places, I am sure). They put up this calculated façade to try and convince populations all over the world that it gives a shit in a swimming pool about the mentally ill. Yet not only does it not spend nearly enough money to run a mental health unit in one of its most populous areas effectively, I would be unsurprised to learn that it is taking money out of that unit and putting said money into the pretty, façade-y hospital that can be walked to from it in minutes flat.
In fact, Australian media likes to portray mental illness as if it is fun. A fashion statement. A quirk. Call it what you will. But mental illness is exactly like autism in that when Australian media, in fact media in general, tries to portray it on purpose, the attempt is so superficial and misleading in nature that it becomes an insult.
When you are autistic and sent to this particular mental health unit, you can, at the very least, expect what I termed to one friend a “sensory fukk-fest”. Have issues with touch and the feeling of dirty objects against your flesh? Well, I do, and that is part of the problem. I have a lot of sensory issues. I will give a strong example. But first, a little prelude.
I cannot reasonably count the number of psychologists and psychiatrists I have been made audience to, voluntarily or otherwise. It numbers in the hundreds, but I am not sure where. Regardless, I would guesstimate the percentage who have either been beneficial or not done me serious harm/wrong at maybe a whole percentage point, or half of a percentage point. And that is being generous. The lady I refer to as Doctor Why is one of those people. In fact, the medicines that she has prescribed and the reasoning make more sense in just a few sentences than months of jaw-waggling with other specialists have ever done. She even prescribed a vitamin D supplement, not because she is a health nut, but because blood tests revealed a low level of the stuff in my system. Apparently, the amount that the doctors thought I should have is 50 ng/mL. (That is, fifty nanograms for every millilitre of blood. Sources vary concerning how much blood there is in a Human. Based on this document, I can guesstimate the volume of blood in my body at about five litres, maybe more.) The blood test that was done on me came back at 32 ng/mL. Now, since the only two reliable sources of vitamin D are sunlight and supplements, that did not leave a wide variety of options. And Doctor Why explained all of this to me in a manner that made me believe, which is saying something.
Now, two events are pertinent in this. The first concerns events after a meeting with Doctor Why. It became apparent to myself and several of the more observant patients on the ward that I had more of a smile and giggle after such meetings. This was especially clear to my most frequent conservation partner when a group of nurses came by. One appeared to be some sort of student nurse. He was carrying a form that contained a list of names and boxes to tick. It is a long story, that list. But anyway, when Wormer, my conversation partner, was asked for his name, he just gave it normally. But when my name was spoken aloud, in a sort of “where is…?” fashion, I decided to have a bit of fun. I was on a high. So, in the manner Stephen Furst uses during one awesome scene in Animal House, I said hello. A sort of “hell-looooo” way commensurate with a host on Play-School that has just finished the last gulp of a bottle of vodka (and the rest), if you get my meaning.
The nurse with the list had a deadpan look on his face, leading Wormer to conclude that he was without even the slightest idea that anything was up. The other two nurses, Odin love them, were visibly trying to contain a burst of laughter. Wormer, the conversation partner, on the other hand, would not shut up about the event after. So much so that I rang out this manner of greeting another two times. But much manic giggling was had for hours after. Such is the high I received from conferences with Doctor Why.
Unfortunately, the following day went the exact opposite way. It was also the first weekday I spent at this hospital without seeing Doctor Why. Funny how that works. Anyway, the day started out fairly normally, and Wormer and I began conversing with a woman who at some point in the conversation revealed herself to be a nurse. By this time, for several days, we had an idiot on the ward. I will call him rat-face because that is what his appearance brought to mind. He had a sharp face, a fairly squinty look, and was rather inelegant in styling himself.
He always spoke in a million words an hour. That is, hespokelikethisanddidnotappeartogiveashitinaswimmingpoolthatpeoplehadgreatdifficultyunderstandinghim. (Very possibly, he was too spaced out, fukking stupid, or both, to realise that people might have difficulty understanding him. He certainly did not get the fact that personal space is not the title of a videogame. Or that when you are in a mental hospital, signs that say only female patients and staff are to go beyond this point should be taken very seriously.) So as he started to try to get my attention during a conversation with these people, I tried several times to tell him to go away. Perhaps I was annoyed, but I was not as polite as I might have been otherwise.
Go away means different things to different people, but this joker seemed to take it as a cue to become increasingly aggressive. Yeah mate, as if a person you are unsuccessfully trying to grab the attention of is going to give it to you if you act sufficiently “tough”. As if I was somehow obligated to speak to him. When his ability to understand an entire sentence, especially the sort that normally come out of my mouth, is limited at the best of times. So after a stroll across the grounds, I told a pair of nurses very simply that if he was going to persist in making it difficult to converse with the people I wanted to, I was going to knock his head off. This prompted the nurses to cross the grounds and lead him back inside, where after a subsequent tantrum he was then placed in what is referred to as seclusion. (Seclusion is basically a room in which your chances of physically hurting yourself (or others) is so close to nil as makes no odds.)
Now, rat-face ended up being diverted to a more secure and restrictive ward. I felt guilt about that at first, but I realised that my input probably had very little to do with what had happened. Rat-face had done something that no contestant on a live-in “reality” television show had ever succeeded in. He managed to piss off everything in the ward, from the Human inhabitants to the cockroaches. Even the walls were happy to see the back of him. But the important point here is that for hours after the event, I was feeling surges through my body that some would agree felt like bursts of electricity. Soldiers who have killed or seen their allies kill know what I mean.
Two more incidents followed. The nuts and bolts of them are unimportant. Both of them ended in feelings of anger and hostility towards members of staff. Who these members of staff are is also not really important. What was important was that once again, people were presuming that they know how to maintain and control my diabetes better than I can under my own power, and doing a thorough job of proving themselves wrong. That, sadly, comes with the territory of being in hospital and having diabetes. Also accompanying being in hospital and having diabetes is that often every single word you hear out of the health professionals is diabetes, diabetes, diabetes. It is not funny when you are trying to talk to them about having multiple skin cancers. It is less funny when you are trying to talk to them about how disruptive an impact they are having on your life outside of their care. It is patently unfunny when the results of their behaviour are making you feel sick enough that it makes you feel violently toward them.
That was when I knew I had to have a serious talk with the doctor. So at first, when I was brought to a conference with Doctor Why and her boss concerning my good self, I was a bit preturbed. The boss did most of the talking. But the gist of what went on at that point was that after some red tape was processed, I would be released the next day. That, as of this writing, was yesterday. Wait, let me start over. They released me yesterday.
I am going to go over this point again. Not only has popular media decided to try to portray mental illness as something fun, exciting, or even fashionable, they have in the process created a caricature of it that harms not only mentally ill folk, but also their families, friends, and community. Think I am exaggerating? Well, walk with me on a certain point.
Contrary to the line used to advertise one film I will not glorify by naming here, not every family is a bit “mental”. Nor is it normal to be what the word “dysfunctional” really means. Normally dysfunctional… think about that. It is a contradiction in terms.
I bring this up because during my time on the ward, a lass aged approximately sixteen years was admitted. Now, this ward was a fairly relaxed one and designed for acute care, but from the marks on one of her forearms and the fact that the admission was meant to be a stopover whilst she gets transferred to an adolescent-specialising facility in the area, well, something was up. And from listening to her talk, I had a funny feeling that her home environment was similarly toxic to the one I had when I was her age. I kind of miss her, though. Although she seemed unable to sit still, she was good company for the half hour we spent speaking. And what can I say? Even though I am biologically old enough to be her father, the fact that she is a nice-looking redhead with a bit of spirit was too much of a counter to the environment we were both in to resist trying to have a quiet chat.
Unfortunately, the manner in which she was unceremoniously extracted from the ward by her family, and the general vibe I got from watching the last of her conversation with family and staff. Well, there really is no way to end that sentence nicely. I did tell her I did not want to come back to the facility in twenty years’ time and see her there. I would not mind coming back to it in twenty years’ time and find it has changed quite radically, however. As in structurally and procedurally, not just a new coat of paint.
When a government tells the public that it is serious about caring for the autistic and mentally ill population, but denies one of its largest population those changes, it is lying.
We are lied to all the time. We are lied to by those who proclaim that they love us. We are lied to by people who want to use us. We are lied to by people who think, rightly or wrongly, that they own us. We are even lied to at times by ourselves. Some of the lies are big ones. Some of them are small. But one of the biggest and most pervasive lies in our world is the half-baked concept of democracy that we are told as children. That doing whatever fifty percent plus one say is best will mean we are cared for and looked after as best we need. Bullshit.
A true democracy means that everyone’s rights are taken care of as best as possible, regardless of how powerful or disenfranchised the people are. Unfortunately, this is far from the case not only for the autistic, but also for the mentally ill. Or both, if you were unlucky enough to be born autistic before 1990. So, given a similar level of education in the matter, I doubt any of the people I met during the past couple of weeks would agree that this society is democratic.
And this exposes the inherent hypocrisy of the mouth-breathing, self-centric morons who chant phrases like “love it or leave it”. I think they believe that that phrase is the answer to everything. Every discontent, every complaint, every idea that they cannot comprehend. The problem, as is frequently the case with such gross oversimplifications, is that the two clauses contradict one another in execution. That is, those who least love the society in question are often the ones who are least able to leave it. This was the case for millions of European Jews during the 1930s, and pretty much the entire populace of Cambodia during the 1970s and 1980s. Just to cite two examples (there are many).
Another problem with the whole “love it or leave it” nonsense is the question asked during one of Black Sabbath‘s best songs (which is saying a lot), Megalomania. Early on in the song, Ozzy Osbourne sings in his trademark manner, “Where can I run to now? The joke is on me.”. And that says it all. Where can I run to, Australia über alles dickheads? Point me to a State where autistic adults who are not rich and in need of aid are not treated like something people hate to tread in. I will not just go there. I will swim, paddle, or walk for years if I have to in order to get there.
Another inherent problem with the idea is expressed by a recitation of a well-known Marine Corps. credo: we do not leave our people behind. Eventually, you have to stop running or coping with your environment and start doing something about improving it. As Kruma Steward wrote in one of my favourite articles, you do not improve a situation by learning to cope with it. You improve a situation by fighting the things that are wrong with it, or changing them. So “love it or leave it” is really code for “I am an ignorant lazy bastard who thinks everything should remain static regardless of what it does to people”.
The mental health facility I speak of in this article is an excellent example of that. Multiple staff members, including Glóin, told me that the people running the facility would really like to renovate it and retool it into something the bright and bubbly crowd would not be ashamed to look at. But the money to do so is instead being poured into, or thrown at, the norm hospital mere minutes’ walk from it.
I just cannot get my head around the level of ignorance it takes for someone to look at a society in which any population, regardless of how awkwardly it fits into the rest of the world, is treated like a pile of shit to be swept under a rug, and think this is somehow acceptable. Especially when the society is, out of the other side of its mouth, trying to assure the rest of the world that it is taking care of this population. The equivalent is a bit like the Vietnam experience had by American soldiers: in order to save the village, we had to destroy it. No bloody wonder America and its allies lost. And therein lies the rub. As long as the current attitude to both autism and mental illness prevails, we cannot have progress in the true sense. Both people and the society they are part of need to be honest with themselves to a degree that they presently are not.
So I get my discharge from the hospital, I am pointed toward the pretty hospital, and I head home. I come home to a letter stating that the landlord has advised the real estate agent that they do not wish to continue my lease for the current residence. I am ambivalent about this. It took way too much effort to get the place properly connected to the world for me to really want to just up and leave. But on the other hand, I dislike just enough about the place to want to leave.
If you have read prior entries in this journal, then you know that I love a great deal about the Central Western Sydney area and what is in it. But it also has a lot, I mean a lot, of painful memories for me. One of the reasons I was so reluctant to go to the hospital I have talked about so much is because its brighter, sparklier cousin has piles of paper written about me. Those piles of paper are best summarised in a song written by Kevin “Bloody” Wilson. Half of what you read is bull, and the other half is all shit. Can you imagine what it must be like to have lies and ignorant assumptions about you not only following you around for decades, but treated as fact? It destroys one’s ability to trust in just about anything. Hence the panicked reaction when told I was coming to another hospital.
Trust is a bit like heroin. It is more expensive than gold. That is where the similarity ends, but the point here is that I find it hard to give because of its propensity to come back and bite me like a lion bites its prey. I do not trust doctors, not one itty bit. Even Doctor Why, if I were to meet her again after this event, would need to make an effort to reestablish a sufficient level of trust to make me follow her directives. She is not a bad person, as far as I can tell. In fact, she seems like a very good person in that she genuinely wants to do the right thing. But the system and environment she works in are not conducive to complete trust.
Where to from here is a good question. During the hours leading to my discharge, I was handed a form and asked to fill it out. I did so, but at the bottom margin, I found small text saying “no writing”. Being so out of my natural environment and still in search of giggles, I just could not resist writing “okay” next to it. Small comforts can make a big difference.
Plans are in the future. I have a desire to write a story detailing the misadventures of a class of Mages, for instance. The title Mage Academy came to mind, but it sounds a bit trite. Maybe I will use it just for the smart-arse implication of association with the Police Academy films. But depending on whether I want to be serious, comedic, or both, I will mull this over more in future (feel free to offer comment about it).
And if you have read all of that, thank you. Please pass it on to the health ministers for New South Wales, Queensland, and any other state you care to include. Together, we can push situations like what I am describing into the past where they belong.