The Staff Have the Key

I have a morbid sense of humor that has sustained me through the darkest times of my life. I remember when I was in a suicidal crisis in 2007, being held at the police station while waiting for the crisis service to assess me, telling the officers how I wasn’t all that creative, since I had thought out only a few ways to die. I think one of the officers tried to distract me by saying that I must be creative, since I have a blog, but I wouldn’t listen.

Once I had been admitted to the psychiatric hospital, locked ward, with no privileges (as they are called) to leave the ward unsupervised by staff, I started to crack jokes. They were rather lame jokes if you ask me, jokes I’d plucked off the Internet, such as those about the differences between the patients and staff on a psychiatric ward. First, the patients get better and leave; second, not all patients believe they’re God; lastly, the staff have the key.


This post was written in response to this week’s Six Sentence Story Link-Up, for which the prompt word is “key”.

Heal

Today’s prompt for Five Minute Friday is “Heal”. I read several of the responses before writing mine. Some left me feeling all sorts of things, which I will try to articulate in the below freewrite.

Is it possible to heal from a hurt you can’t explain in words? Can something that you can’t describe in words, a memory that is just visceral, even be traumatic? I am referring to preverbal trauma, of course and, in theory, I know the answer: yes, it exists and yes, healing is possible.

However, in reality, how can I prevent my cognitive processes from constantly interfering with my experiences? Or should this be prevented at all? I mean, if I can rationalize that I’m now in 2022, living in the care facility and not in whatever danger my body thinks (feels?) it’s in anymore, does it even matter that I endured preverbal trauma?

After all, it’s a fact that I did: I was born prematurely, spent the first three months of my life in hospital and had several complicated surgeries before the age of five. The question is whether said possibly-traumatic events affected me and, if so, how to heal from them.

The Future Is Not Clear #SoCS

SoCS Badge 2019-2020

Exactly a month ago, I made the decision to start the process of looking for another care facility to live in long-term. I felt, at the time, that it’d take at least two years before I would’ve found a place and I was fine with that. Now, though I am still fine with the fact that it might take years before I’ve found the near-perfect place, my forever home as it were (oh boy, that sounds like the afterlife to me, haha), the path inbetween not being clear, doesn’t sit right with me.

I like to have control. I don’t like to have made my wishes clear and then not hear from the care consultant for months until he’s heard from an agency or something and they want to meet me. I don’t like the fact that a lot might’ve been discussed by those agencies with my behavior specialist or the care consultant or whatever without me knowing anything about it. That feels too vague. Besides, it feels as though I have no influence over it. Which may or may not be true.

In this sense, the fact that I’m intelligent, works both for and against me. My fellow residents, who have severe to profound intellectual disability, don’t even know anything about such big decisions. Yesterday, the least intellectually disabled of them moved rooms and he seemed to have had little say in the matter. That sounds very scary to me. I want to have a say. Yet if I can’t, and things are made clear at my level of understanding, as they were with him, then maybe it’d be easier.

Now, I do intellectually understand a concept like two years or more, but emotionally, it’s very hard to grasp. I wish the future were more tangible in this sense.


This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “clear”.

Locus of Control

Like I said on Tuesday, I am regularly reminded of the need to change my attitude rather than my external circumstances, such as my living situation, in order to improve my quality of life. There may be some truth to this, in that I will always take me with me wherever I go. In this sense, having an internal locus of control – a sense that I myself can change my outlook on life, irrespective of external circumstances – may be the more functional choice. But is it true?

Ultimately, whether I change my attitude or I change my circumstances, doesn’t really matter, in that I am the one doing the changing, and in this sense am the one at least apparently in control, when in reality, I’m not. I, being a Christian, believe that God is ultimately in control, but even if He isn’t, control seems to be a rather elusive thing.


This post was written for the Six Sentence Story link-up, for which the prompt word this week is “control”.

Dream Small

It’s interesting that, since deciding to want to start the process of finding me a more suitable care home, I’ve had the lyrics to the Josh Wilson song “Dream Small” in my head a lot. This is a Christian song about the fact that, while there’s nothing wrong with wanting to change the world in big ways, small contributions matter too.

Of course, that’s probably not the meaning behind these lyrics being stuck in my head. I don’t dream of ending world poverty or solving the climate crisis. In fact, the reason I want to move to another care home, has little to do with wanting to improve other people’s lives.

However, in a sense, the title of this song speaks to me, as do certain points in the lyrics. I may want to change my life in a big way by moving to another care home (assuming one can be found), but that doesn’t mean I don’t need to pay attention to the little ways in which I can improve my life right now. I still need to focus my attention on my current quality of life.

I am grateful that I finally found the motivation to look up a polymer clay video tutorial again. I couldn’t at the time actually go and work on the project taught in the tutorial, but I will later this week.

I am also grateful to have started reading again. I finally picked up Thrive by Kenneth Oppel, since I really need to finish the Overthrow trilogy even though Hatch was a bit disappointing.

All that being said, dreaming small does mean that small setbacks can get me to become unstable easily. For example, yesterday I found out that the headphones I bought at the end of March and that stopped working two weeks later, most likely hadn’t been sent out to the manufacturer by the store I bought them at. The lack of clarity about this sent me spiraling out of control. It may just be a pair of headphones – material things, money if you will -, but to me, the situation was quite unbearable.

With respect to the care home situation, I am also reminded of a fellow patient on the locked psych unit who told me I needed to focus on changing myself, not my living situation. This was over fourteen years and four living places ago. I do not fully agree, but partly, I do, in the sense that my distress is partly caused by internal sources. If I keep focusing my attention on external circumstances, these internal sources will not change. If I can reframe my thinking around those, I can decrease my distress. The problem is, I can’t usually reframe my thinking.

Unconsciously Incompetent #SoCS

When I was in college studying applied psychology (it was really an orientation year to Bachelor’s of social work or related fields), my tutor had an interesting theory about how we learn by first being unconsciously incompetent. Then we move on to being consciously incompetent, by which she meant we are aware of our lack of knowledge and skill. Then, after years of college, we move on to being consciously competent. Once being experienced in the workforce, we then become unconsciously competent, which means we no longer need to be aware of our competence, since it’s become muscle memory.

I reached the stage of conscious incompetence when my tutor told me flat out that she was passing me for communication skills only if I promised never to enter the field of social work, psychology or any related field of study or work again. Thankfully, I was aware that my communication skills exam had really gone badly just before she told me, so I didn’t just need to be dragged into conscious incompetence.

I think I might need a similar experience with macrame. I started practising on Thursday and, though I managed the square knot, spiral knot and lark’s head knot quite easily eventually, I am pretty sure I’m still unconsciously incompetent. In other words, my work is horribly ugly but I think it will do.

The only thing is, because I sort of know I might never reach the stage of even conscious competence, I am too scared to show my work online for judgment. After all, as much as I am self-conscious about it, I also would really like this to work out!

Similarly, though I knew before that horribly messed-up communication skills exam at least on some subconscious level that I’m not suited to become a social worker or psychologist, I wanted to be one. That’s probably why I went into linguistics, which, though it isn’t necessarily within the helping profession, is still a communicative field of study. I only went into it to have a student psychologist tell a newspaper that “a blind autistic who wants to study something communicative” is going to have a pretty hard time of it, when they were promoting their autism buddy program. That pretty much sent me into conscious incompetence as soon as I read it, which thankfully was six weeks into the academic year. I guess that’s what happened the time the first person to comment on my question about macrame told me it would be really hard too. Only that’s before I’d started. I’m not sure that’s conscious incompetence though. It looks rather like low self-esteem.

This post was written for Stream of Consciousness Saturday, with the prompt of a word containing “Comp”.

Allowed to Rest #SoCS

SoCS Badge 2019-2020

Like I’ve said multiple times over the past week, I’m self-isolating with COVID right now. Today is day four of my five-day mandatory quarantine. I have taken each day as an opportunity to stay in pajamas, because I didn’t feel like getting dressed now that I wasn’t allowed to leave my room anyway. That being said, taking my much-needed rest, has been more of a struggle.

Both on Wednesday and this morning, I was up in the middle of the night really, or early morning, depending on your perspective. On Wednesday, I was up by 3AM and couldn’t sleep. Today, I could stay in bed till 4AM. The other nights, I managed to sleep for at least ten hours, sometimes twelve.

It isn’t that I’m not tired, really. Or maybe I’m not, but it does feel kind of like I am. However, my brain won’t shut off. It’s like my body is exhausted and in need of rest, but my mind continues to tell it to carry on. It isn’t even my brain. Well, you know, my mind is in my brain too, but I mean, it isn’t that I’m not cognitively tired too. But I keep beating myself up over it.

Then again, if I can allow myself not to get dressed, why can’t I allow myself to lie in bed and sleep this whole thing off? I can’t force myself to sleep, of course, but I can try to get some rest. Instead, I’m writing this mindless blog post. Thanks for reading! I’m allowed to rest now. Or read what the rest of you have to say.

This post was written for Stream of Consciousness Saturday, For which the prompt today is “Rest”. I just realized that, in my second-last sentence, “you” is a better fit than “I”, but editing is against the rules. Oh well.

Right to Health

In his daily prompt yesterday, Scott Andrew Bailey asks us about the “right to health”. I purposefully put that between quote marks, as obviously no-one has a right to health. We all get sick and die eventually. Okay, that was my autistic brain’s literal thinking acting up again. What Scott means is the right to medical care.

Scott asks whether medical care is something the government should provide for the people or whether it’s best left to the private sector. Are there drawbacks to your choice?

The answer to that last question is, of course, yes. Any system has its drawbacks. My answer to the first question, on the other hand, is: I’d like it to be a little of both. For my Dutch readers, the answer can be short: I like my own system best, despite its drawbacks, such as the mandatory copay and the diagnosis-treatment combinations which dictate that you’ll get care based on a diagnosis, not your needs. Those were a particularly problematic thing in mental health. I believe they’ve been altered to something else this year, but I don’t know whether it’s better or worse.

For my international readers, here is a little explanation of how the Dutch system works and why it has the best of private and public healthcare combined. Basically, what is called basic health insurance is more or less public, even though it is covered through the same insurers that will cover your additional insurance should you get it and the insurance companies are private. The government decides which care is covered under basic insurance and insurers must accept every Dutch resident for this package, regardless of health status. The basic package covers visits to your GP, hospital care, most medications, specialist mental health services (ie. services for people with more severe mental health problems), etc. Things that are not covered include physical therapy, dentistry for adults over 22 I believe, contraception (even though Christian parties have been demanding it gets put into the package to prevent women needing abortions), etc. When I lived with my husband, I had mostly just the basic package (I did have some physio coverage but didn’t use that) and I didn’t have to pay a lot of extra money for things that weren’t covered.

You can decide to get additional coverage for things like dental care, physical therapy, alternative medicine, etc. However, insurers can refuse you for those. They usually don’t for the cheaper packages, but then again getting these hardly outweighs the cost of paying for care out-of-pocket.

Basic health insurance currently costs about €133 a month if you want to have free choice of healthcare providers (I do). You can opt for a cheaper policy where the insurer has contracts with only certain providers and you have to pay 30% of treatment costs if you go to an uncontracted provider. Like I said, there’s a mandatory copay of €385 a year on your healthcare. GP visits do not count towards this.

Like I said, I think our system has the best of both public and private worlds. Before the current system was put in place, low to medium income people were covered under the sick fund, which was similar to the UK’s NHS, including its problems of extreme waiting lists and bureaucracy. People with higher incomes would need to get private insurance, but I don’t think it was much better for them, in the sense that those with private insurance would be treated favorably. That’s a good thing.

A note about those who cannot afford to pay for health insurance at all: as a general rule, basic insurance is mandatory and there are several ways in which the government aids low-income people, but ultimately if a person doesn’t pay at all, insurers have the ability to stop insuring them. In that case, hospitals can refuse care, but not in acutely life-threatening circumstances such as when someone has a heart attack. In that sense, you have a right not to die on the health system, but not an ultimate right to medical care.

Most Relaxed When I Am Slightly Distressed?

I had a meeting with my nurse practitioner today to discuss my topiramate. Like I mentioned last Sunday, the increased dosage isn’t doing what it should. I was experiencing slight tingling in my hands and feet and, more annoyingly, increased drowsiness. Moreover, the medication wasn’t working for my hypervigilance; if anything, it was making it worse. The slight tingling in my hands and feet has decreased to the point of almost disappearing over the past few days. The drowsiness has not. Neither has the hypervigilance.

A theory I came up with recently, in a conversation with the care facility’s behavior specialist, is that my ideal level of alertness is really slight distress. In terms of the care facility’s signaling plan, phase 1 rather than 0 is really when I’m most relaxed. The reason, in fact, is that relaxation scares the crap out of me because it includes a sense of loss of control.

I am reminded in this respect of my last surgery as a child, when I was eight-years-old. I clearly remember going under the anesthesia – I had refused a tranquilizer to calm me beforehand – and I also vividly remember keeping on talking, even when my speech became slurred, up till the moment the anesthetic knocked me out. I was deathly afraid of letting go of my control.

I am also reminded of my fear of going to sleep, which goes back to early childhood. It may in part be related to my trauma-related symptoms, because of course my traumas started as early as infancy. However, I wonder whether this is also somehow related to the fear of losing control.

I once heard that benzodiazepine tranquilizers are no good for people with borderline personality disorder, precisely because the anti-anxiety effect causes aggression in them. I am not sure whether my current diagnosis includes BPD or not, but something similar might be going on with me. I don’t generally become aggressive when I’m under the influence of tranquilizers. However, as my nurse practitioner said, this thing does show that alertness and distress are not some linear thing on a scale from -2 to 3 (on my care facility’s signaling plan) in real life.

The bottom line is that we don’t yet know what to do about my topiramate. We’ve so far decided to wait another week or two to see if, since the drowsiness should decrease with time, this will cause the positive effects to start becoming noticeable. If not, we may go back to my old dosage, but I’m not yet sure what to do about my PRN quetiapine then. After all, we upped my topiramate in hopes that I could do without quetiapine then. Right now, I’ve felt like I would’ve needed a PRN medication quite regularly, but I’m trying to suck it up for now. That’s pretty hard. I’ve had a few almost-sleepless nights over the past week and am pretty anxious most evenings. But yeah, I’m muddling through. Thankfully, my nurse practitioner did give me an extra appointment next week to check in on the meds.

Treatment Plan

While in the mental hospital, every six weeks, or later, every six months, I’d have a treatment plan meeting. Not that my treatment or its goals changed anything over the 9 1/2 years that I remained in the hospital; my treatment goal was always to find me a suitable place to live and my treatment involved, well, what, actually? I honestly can’t tell you even now that it’s been over four years since I’ve been out.

What did change, were my diagnoses; from autism and an adjustment disorder (which explained my acute crisis that had led to my admission), to autism and impulse control disorder, to autism, dissociative identity disorder and PTSD, to eventually no autism at all and just borderline and dependent personality disorder and a little bit of depression (not otherwise specified) thrown in (just because with just personality disorders on my file I would have had to be discharged right away). The nurses said the psychologist who’d added depression, did me a favor that way. I think they were just completely clueless as to what they were doing with a complicated case like mine.


This post was written for the Six Sentence Story Link-Up, for which the prompt word this week is “Treatment”. I am not sure I did it right this time. I hope I did.