Joy and the Fear It Induces #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again late writing my post in the #AtoZChallenge. Today is another hard day. Last week when talking to my support coordinator, I realized one of the problems might be the fact that I think I don’t deserve to be happy. This is not necessarily all there is to my trauma-related symptoms and, besides, is it still paranoia if they are actually out to get you?

I’ve mentioned the fear of joy before. It has been following me forever, since learning that I was losing the little sight I had at around age seven. I always prepared for the day when I’d go totally blind. That day still technically hasn’t come, although I can hardly call the tiny bit of light perception I do have sight.

Then there is Jolanda Venema. Dutch people who are in their fifties or older will no doubt remember her photo in a newspaper in 1988. She was chained to a bed, stripped naked, in an institution for people with intellectual disability. I learned a few years ago that it was actually the institution I live in now. I am not old enough to have actually seen the original newspaper article, but I did learn about a similar case in a child and adolescent psychiatric unit in Utrecht in around 1997. This particular girl, a 16-year-old at the time whose name I forgot, was even more like me than Jolanda, in that she had a borderline normal IQ. Cases like these have always haunted me, but that got worse when I entered the care system in 2005 and more so when I was admitted to the psychiatric hospital in 2007. At the time, staff literally told me that, when I needed more support than the three nurses to sixteen acutely ill patients (if they weren’t understaffed) could provide, I’d be locked up in seclusion. And I was. And coerced into taking high doses of medication to prevent me being secluded tons of times after that.

I know for a fact that I’m not allowed to be truly happy. The adage in care is, after all, that it’s better to provide okay’ish care to two people than excellent care to one. And I would’ve agreed if care ever had been excellent. But it never was in the 20+ years I’ve been in the system and not in the 20+ years before that. At least not for people like me and Jolanda.

This doesn’t mean I never experience moments of joy and I do try to acknowledge them. I’m not purposefully being more negative in order to elicit better care. If anything, the opposite is true. However, as another incident this evening proved, most people don’t nearly try their hardest and they don’t think others do either. Well guess what? I do! That doesn’t mean joyful moments don’t induce fear, but fear is not a choice. Besides, like I said, is it still paranoia if they are actually out to get you? I don’t think so.

Institutional Abuse: Abuse in the Care System #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter I post in the #AtoZChallenge. Today I want to talk about trauma that I for one didn’t experience in childhood: trauma and particularly abuse experienced in the care system. I’m struggling majorly with this, as just this evening I had an aggressive meltdown that led to me being thrown to the ground by one staff and another staff admitting that the only reason I’m not being locked up or physically restrained is the fact that I’m not strong enough.

I want to say here that my choice of words is a bit tricky. Is it “abuse” if the client was themself aggressive, even if it was “just” verbally? I am struggling intensely with the fact that, on the one hand, my wife never locked me into a room or threw me to the ground even though I was quite a nasty person to her at times when we were living together, but on the other, there are just two staff to ten clients here. I try to understand that staff are people too and not necessarily worse people than others are. My wife sometimes said that the staff at the intensive support home were ill-intentioned at best, but I doubt it. My point is, people are part of a system. When that system is purposefully created to oppress some people, yes, the “low-key” oppressors are to blame too, but that doesn’t make them personally bad people. Many unfortunately don’t realize how much they’re accustomed to using (and abusing) their power. In fact, where it comes to care staff, most don’t even have a clue that they’re higher up in the pecking order than us clients are.

That doesn’t mean that the (ab)use of power doesn’t affect us. I mean, I was once, at the intensive support home, told that if I were dragged to my room, I had probably asked for it with my behavior. The thing is, even if I had, that doesn’t make being physically dragged not traumatic. Similarly, I can totally understand why the staff this evening threw me to the ground (I’m not even 100% sure he intended on me landing on my head), but that doesn’t mean my head doesn’t hurt.

One last thing I want to discuss, is the fact that institutional abuse may technically be a staff’s action (or inaction), but it is the result of a long line of decisions made by management, the Care Office or other funding agency and ultimately the government. It is not the client “choosing” to be restrained/locked up/drugged/etc. with their behavior and, like I said, the staff are the ones doing it, but if the government chooses a lock or shot is cheaper than support, they are the ones ultimately responsible.

Autonomy: Learning That I Can Do Things and That My Opinions Matter #AtoZChallenge

Posted on by Astrid

Hi everyone. Today is April 1 so this means the #AtoZChallenge is starting. I haven’t prepared any posts in advance, but since I am going to write on healing past hurts, the concept of autonomy spoke to me for my letter A post. Autonomy is the ability to be self-reliant and independent, both physically and emotionally. It starts to develop in toddlerhood.

As I learned about emotional development as it relates to developmental disability (I discussed this in 2023), I realized in many ways I’m not there yet. I struggle with even basic decisions like what clothes I want to wear.

When I was 30, I was told I have dependent personality disorder. This disorder is characterized by passivity and the inability to make decisions independently, as well as a pervasive need to be taken care of. It is often related to lack of encouragement of autonomy in childhood.

I don’t have many memories of my early childhood, but I do know I wasn’t given a lot of autonomy when I was older. It’s not that my parents didn’t try, but as soon as I got frustrated, they gave up. They genuinely believed they were giving me autonomy and that I was just too stubborn to want to be independent. For this reason, they claimed and to this day still claim it’s my choice to be in the care system.

My psychologist back in 2016, the one who diagnosed me with dependent personality disorder, sided with them. She said I did have the assertiveness to stand up for myself, but wasn’t doing things I was (thought to be) capable of. That’s not what dependent personality disorder is though: lack of confidence in one’s own physical capabilities is but one criterion out of eight. And please note: it’s specified that the reason someone isn’t doing something, is in fact lack of confidence, not lack of skill or motivation. In other words, unwillingness to do things independently that you can do, is not dependent personality disorder, but care misuse.

And for clarity’s sake: I am not and never was misusing care. However, that’s exactly what my psychologist thought I was and according to which presumption she treated me by kicking me out of the mental hospital with virtually no support. She once again didn’t encourage me to develop autonomy. Refusing to help someone who clearly asks for help, contrary to the current idea in mental health services, may be politically useful, but it is not autonomy-supportive.

I am only now, now that I’m nearly forty, learning that I in fact was conditioned by both my parents and the psychiatric hospital to disregard my own opinions. Yes, being able to do things independently, is one aspect of autonomy, but so is the ability to make your own choices. One can hardly exist without the other.

March 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and that means I’m joining Natalie for her monthly wrap-up. March was a tough month. As I say this, I hear a little voice in my head saying I’ll never be happy anyway as I’m so negative. One of my staff on Sunday said I have nothing to complain about because I get regular support workers and my day schedule is followed. I still wonder how much of my dissatisfaction is indeed due to circumstances that can be changed, such as my day schedule, how much is due to the inherent nature of my being multiply-disabled and living in long-term care and how much is my attitude.

In any case, early in the month I heard that my activity-based day schedule would be taking effect on April 1. That’s tomorrow. Unfortunately, on the same day, the staff’s hours are going to change and this, even though the literal hours they are in the home won’t be cut, means my support will be cut a little. We’ll see how that goes.

I tried to adapt to the new support hours already and this was incredibly hard. I also tried to myself follow a schedule with more meaningful activities. This was partly successful, especially with staff who are already able to help me get more meaningful activities done. For example, last week, one of the staff helped me create a unicorn-themed card for a former fellow resident from the intensive support home, who had her birthday that day.

Thankfully, one staff, with whom until then I’d only been doing dice games and going for walks, herself took the initiative to ask a colleague to orient her to the polymer clay activity.

I have been cooking and baking more than I used to. For example, I baked so-called “healthy” brownies that I fully intended on handing out at the monthly local brain injury meet-up. They weren’t all that good though.

Later, I found out I had a Trojan on my computer that came with the recipe manager app I used to download random recipes off Facebook into, including this “healthy” brownie recipe.

Before I found out I had malware on my computer, I had been obsessing over the idea of cooking vegetarian curries. Most of the recipes, I got off English-language food websites like BBC Good Food, so I’m not sure I’ll be able to use them. After all, though my English is quite good, my staff’s might not be.

Last Saturday, I cooked a delicious cauliflower, tomato and chickpea curry. This recipe was in Dutch, by the way.

Now that I look over this post, I wonder what made the month so tough, given that I once again did more meaningful activities than I used to. I do believe part of the problem is the fact that I’m still not adequately supported when I’m struggling. I mean, highs and lows are to be expected even when you’re having the proverbial time of your life. When people expect me to have a positive outlook because “I have nothing to complain about”, that is horribly invalidating. Life in the care system isn’t great and it isn’t meant to be. I don’t expect to ever rate my days higher than a seven out of ten, but when staff do have this expectation of me, it’s incredibly frustrating. I’m hoping something can be done about this.

Of course, this was also the month I finally realized I’ll never have an okay relationship with my parents. It’s tough realizing I never experienced a proper bond with my parents and even tougher to know that no-one can replace it. However, I do think I’m more capable than I used to believe. I’m not sure how I feel about that.

Three Wishes, Revisited

Posted on by Astrid

Hi all. Last Tuesday, I saw the Writer’s Workshop prompts for this week. Several of them spoke to me but I somehow didn’t give myself the time to actually write on them. Today, I’m finally back on the blog and I’m choosing the prompt in which you’re granted three wishes. I did a post on this topic already in 2020. Let’s see how things have changed over the years. What would I wish for now?

1. Unlimited door-to-door transportation. I listed ParaTransit access as a wish in 2020, but now that I’m actually using it for things other than getting to my wife, I realize that it’s not that having unlimited kilometers would solve my problems getting to places. I’d also need the driver to actually drop me off at the place I want to go to. Transportation, after all, is one of the reasons I don’t go to cerebral palsy meetings as often as I’d like, because they’re often organized at restaurants, which taxis can’t reach.

2. My ideal room/apartment within a care facility. In 2020, I wanted to be closer to my wife, but if I have my transportation desires covered anyway, that’s no longer a necessity. My ideal place wouldn’t be much larger than my current room, but it would have a private bathroom and its own kitchen, in which I could prepare my own food with assistance. It would also not be as close to communal areas as my current room is, because well one of my main problems right now is overload from all the sounds coming from the living room.

Looking back, I can’t believe I didn’t list more care hours as a wish in 2020, being that I didn’t have my one-on-one at the time. I do now and of course I wish for it to stay the same.

3. Improved physical and mental health. Don’t we all wish for optimal health? I listed it in 2020 too, as my first wish in fact. Since then, my physical health has improved in some ways and declined in others. For example, I’ve lost significant amounts of weight that I indeed needed to lose and as a result, no longer have high blood pressure. I can also walk for longer. On the other hand, my tremors have gotten significantly worse and I believe my cognitive functioning has declined a bit too.

My mental health, I think, is better than it was in early 2020. I hope it improves more though.

Now that I compare my wishes to the ones I listed in 2020, I see an interesting trend, in that despite better quality of life, my wishes are still largely the same. No, that’s not entirely true: they’re bolder, in fact. I wonder what this means.

#WeekendCoffeeShare (February 27, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s just past 5:30PM as I start typing this blog post, so I’ll still have my evening coffee at 7PM. If you’d like to grab a drink too, feel free to get yourself a cup or glass of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been crazy! Crazy good in my opinion, in that yesterday and on Wednesday, the daytime temp climbed to 17°C. Today we had a daytime high of 15°C and more wind. It’s raining now too, which I’m told is necessary, as the winter has been horribly dry over here.

If we were having coffee, then I’d tell you that I reached my movement goal on my Apple Watch each day this week. Yesterday and on Wednesday, I even doubled it. I also broke my exercise minutes record yesterday. I mostly went for walks, but on Tuesday, I also rode the side-by-side bike to Deventer to get some shopping done. City representatives were having a survey about the bike-friendliness of the city. I accepted the flyer because the person handing it out was making a fuss of how special the side-by-side bike is. And also, we got a free serving of “poffertjes”. Note to self: actually do that survey!

On Wednesday I also rode the side-by-side bike to the nearby lakeshore to have a cup of coffee and a piece of caramel pie. No pictures this time, but it’s the same caramel pie I had a few times last year too. I must say, this place is pretty budget-friendly, in that I only paid €6.95.

If we were having coffee, I’d provide an update on my medical situation. I had bloodwork done on Monday because of increasing IBS symptoms. Thankfully, nothing came out of it. I’m okay just dealing with the pain and discomfort, knowing that at least it’s not something more serious.

This is not necessarily the case with respect to my involuntary movements and tremors. Like I shared on Saturday, my doctor says they’ll only get worse because I’m getting older. I call bullshit to that, in that, while literally everyone gets older, it’s not like I’m elderly at 39. My wife looked up tardive dyskinesia (TD) as a result of medications, which my doctor didn’t mention specifically but then again she never mentions anything specifically. If I have this, there’s some medication for it in the works, but it isn’t available in Europe yet.

My wife at one point mentioned that this medication is prescribed to people with Huntington’s Disease too. I know there are similarities between tardive dyskinesia and Huntington’s, but I didn’t know how far these go. I finally joined a TD group on Facebook and asked. Thankfully, TD is not a death sentence and it may not even progress. That doesn’t mean I’m no longer distressed, because, quite frankly, unlike my IBS symptoms, the involuntary movements significantly impair me.

If we were having coffee, I’d tell you I decreased my antipsychotic again starting today. I’m now on 9mg of aripiprazole. I’d expected to get one 5mg tablet and four 1mg tablets, but for some stupid reason I got nine 1mg tablets. This means I can now just about barely swallow all of my pills at once.

If we were having coffee, finally I’d share that the talk with my support coordinator on Sunday was a bit disappointing. There are several things about my care that frustrate me and she told me it’ll take months before there’ll be any significant changes. Thankfully, she didn’t mean my day schedule. That might change a little sooner. She also scheduled a meeting with the behavior specialist who’s now responsible for my home now that the regular one is on maternity leave. That meeting will be on March 10.

This Divorce Thing Stirs Up More Than I’d Like to Admit…

Posted on by Astrid

Hi all. Earlier this evening, I started in a book called something like Bitchslap Journaling. It is a spiritually-based journaling guide. The original Bitchslap prompt is to write down what you desire, need and expect. The author advised readers to use tarot cards for further reflection.

My initial thought re my desire was related to my care. I desire to experience more, do more fun activities, finally create that standing unicorn…

Then I drew a tarot card on Labyrinthos: I got the Seven of Cups. Cups are about relationships and love. Off the top of my head, I can’t remember what the author of the Bitchslap journaling book said Sevens mean and my Kindle app keeps crashing, but it wasn’t pretty.

Today, my wife had a visit from a person to determine the value of our house because of financial aspects related to our divorce. The outcome of this assessment doesn’t change my opinion on financial matters, but it is yet another reminder that we’re truly divorcing.

Last Sunday, when my wife and I were talking about the divorce, I said I couldn’t care less about it. What I meant is I couldn’t care less whether we divorce or stay married, in that little has changed to make me want to divorce. I was pretty clear when we first got married that we wouldn’t be living together. The thought of living together did enter our minds about a month after we got married when a living place that I’d been on the waiting list for over a year for turned out not to be suitable for me. Regular readers know the rest: after years of constantly making up our minds about whether we wanted to live together or not, I was forced to live with my wife because the psychiatric hospital kicked me out. This is one positive of us divorcing for me: the care agency won’t be able to use my wife as an excuse to kick me out.

Other than that though, even though I know rationally that we never had the kind of relationship spouses usually do, this whole thing makes me feel distressed.

I don’t want to go into the details of why my wife and I are divorcing on a public blog. Suffice it to say that, like I said, we never had the kind of relationship spouses usually do. We were always more like best friends than lovers and that’s not going to change. Looking back, we should never have gotten married.

Still, my wife feels like my safe person and I fear that’s going to change once we’re divorced. The house is only a symbol of that. I know that if I showed up at her doorstep saying I was going to live with her again, things’d be much, much messier than they are now. Still though, it hurts to know I essentially signed myself up for a life in institutions and there’s no going back on that one. There I’m returning to my original desire before I drew the tarot card.

#WeekendCoffeeShare (January 17, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again today. It’s nearly 7:45PM, so I’ve had my last cup of coffee for the day and am soon going to step away from the computer to have a soft drink and chips. Grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Last Sunday, it was freezing still with nighttime temps as low as -9°C. Yesterday and today, the daytime high was 10°C. Mother Nature is having mood swings.

If we were having coffee, next I’d share that, this week, I’ll probably have a perfect week with respect to my Apple Watch activity rings. I’m not all that ambitious about it, honestly, but it’s nice to see a virtual medal. Yesterday, I did complete the New Year’s challenge, which is to close all of your rings seven days in a row sometime during January.

If we were having coffee, next I’d update you on the assigned staff/support coordinator thing. I mentioned a few weeks ago that my assigned staff is in training to become a support coordinator and after that, it’d originally been decided she’d be both my support coordinator and assigned staff, with some stupid comment about me being able to come to anyone with my concerns. That was rather frustrating for me, as then everyone would be making decisions about me and my support would be even more chaotic than it already is. Well, yesterday I was told that my current support coordinator will remain my support coordinator for now and my assigned staff will remain my assigned staff.

I did have an argument about this with another staff today. There’s been made a decision about my showering routine which she disagrees with and she’d been telling me how she felt about it. I told her to stop coming to me for changes to my support agreement, instead going to either my support coordinator or assigned staff. She then claimed that she would no longer be doing fun activities with me, as that’s an assigned staff’s job too. That’s not true and it felt like she was using black-and-white logic. Unfortunately, this particular staff isn’t very able to accept criticism.

If we were having coffee, then I’d tell you I did enjoy some fun activities over the week. On Thursday, I went to have lunch at the institution townhouse with a staff. I chose a poke bowl.

Yesterday, I rode the side-by-side bike to the market in the next town. I bought olives, feta-filled green peppers (which it turned out I like despite thinking I don’t like feta), arugula and spinach and tried to buy fried chicken, but it was almost sold out. The vendor gave me what he had left over for free.

If we were having coffee, I’d share that my wife and I are pretty certain we’ll get a divorce after all. On Tuesday, she and I will be meeting up with a financial advisor to discuss the financial consequences of getting a divorce. I’ll still need to do some official ID stuff before that, but my wife is going to help me with this when she’s here tomorrow.

If we were having coffee, finally I’d share that I bought new earbuds. Yes, again. I bought JBL earbuds, because, though I have AirPods and JBL headphones, I prefer earbuds to headphones and yet the AirPods don’t work well with non-Apple products. I’m not yet entirely sure I like the new earbuds, but they weren’t horribly expensive.

Don’t Get Me Started… #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “Don’t get me started”. Oh my, don’t get me started… or I’ll rant forever.

I have this habit of ranting about my care to whoever will listen. Not even about my current care, but about my care at the intensive support home. This afternoon, I was telling a staff who’s just quit smoking that, now that institution grounds are officially a non-smoking area, I no longer permit staff cigarette breaks during my activities.

I say that grounds are “officially” a non-smoking area because, in reality, no-one listens and even the higher-ups smoke on grounds.

I am a non-smoker and yet I understand the fact that clients want to smoke in the yard. Who are the higher-ups, whether they abide by the rules or not, to prohibit smoking in our own home? Well, outside of it, of course, because yes the non-smokers have a right to a smoke-free home.

Staff, however, are usually the ones who smoke the most and I don’t fully understand that. I mean, yes, it’s an addiction, but it’s also a habit. And, besides it being just plain yuck, staff are taking extra breaks in order to meet their “needs”.

Back to my not permitting staff to take cigarette breaks anymore. Every staff here understands, even the hardcore smokers, but back at the intensive support home, not so. I told this staff about a staff doing my morning activity time slot. At the start of it, she said that it’s long, right? It’s ninety minutes. “Can I have a cigarette?” I told her to stand on my balcony and discard her cig safely. Half an hour later, I was doing a clay project. “You’re now busy with the clay anyway. Can I smoke again?” I reluctantly let her use my balcony again. Half an hour later still, an hour into my activity, she was like “I’m going to need to discuss something with a coworker”. And off she was. When she came back ten minutes later, I told her I didn’t like her essentially taking three breaks during a ninety-minute support moment. “But you don’t have one-on-one,” she ranted, saying that with my “just having extra care” this means she could leave me alone whenever she needed to. And besides, she didn’t need to offer up an explanation to the client for her decisions. Well guess what? Yes, staff do need to justify their decisions to me when these affect my care.

And don’t get me started on the difference or lack thereof between one-on-one and extra care. They’re both just sums of money the institution receives for a client. Yes, some clients have more one-on-one hours or extra care hours or whatever than I do, some even having 24-hour one-on-one. However, these sums of money are based on average amounts of care a client needs. If a client has 24/7 one-on-one (which none of the clients at that home had), it means they on average need one staff with them all the time, but sometimes two and sometimes briefly none. I at the time had seven hours of extra care/one-on-one support a day and my support coordinator claimed that my day schedule at the time spanned nine hours. There are various reasons why firstly this wasn’t true and secondly it doesn’t mean I had two hours of support that wasn’t being paid for, but don’t get me started on that…

Trying to Celebrate Small Wins #JusJoJan

Posted on by Astrid

Hi everyone. I have been struggling with mixed feelings about my day schedule and the things I accomplish or don’t accomplish during the day. Sometimes, I feel like there’s been quite a lot I’ve done, but on other days, I focus on the hours I’ve spent staring at the wall.

The difference isn’t just dependent on how much I actually did in terms of crafting, cooking, walking, reading, etc. It’s sometimes also a matter of perspective. I mean, I spent most of my allowed activity time slots just chatting with staff today. I could focus on that and on the fact that, with some help, I could’ve turned them so much more productive. Then again, I could also focus on the things I did achieve. Today, for example, I crafted a polymer clay snake.

It frustrates me to no end that my day activity goal is so vague that it’ll be achieved regardless of what I do or don’t accomplish during the day. I had worded the main goal myself, saying I’d like to do at least one meaningful activity each day. To this, however, my then assigned staff added examples, including dice games, and a caveat that if it looks like I’m in distress or tired, the staff can suggest doing smalltalk or extra moments to lie in bed, saying everyone needs rest. By this logic, each day is meaningful even if I’d spent it entirely in bed.

And that’s not entirely untrue. What makes it untrue is the part where staff decide for me which activities give me meaning and when it’s appropriate for me not to engage in them. In other words, it’s worded as an excuse for staff not to help me find and engage in meaningful activities. If I chose to lie in bed all day, like I did last September when sick with probable COVID, it’s quite different from all the times staff have suggested I lie down. If I chose to be lazy, it’d be on me, but if the staff choose to be lazy and twist it to mean they’re meeting my needs, we’re having quite a different situation.

I do try to celebrate the small wins though. Like today’s snake. That doesn’t mean I can’t wish for improvement, particularly because a lot could be improved without me getting more support hours. Would it be harder on the staff? Possibly, but not necessarily. I mean, listening to me moan about my quality of life, is no doubt exhausting to some staff too. And besides, it isn’t my task to make staff’s work day meaningful.

However, it does help me personally to focus on the things I do achieve rather than the things I don’t. I’m genuinely happy about the snake I crafted. Yesterday, I even did two crafty activities and met my movement goal on my Apple Watch by walking. I try to celebrate that. Celebrating my small wins gives me joy.

This post was written in response to today’s prompt for #JusJoJan, which is “celebrate”.