Echolalia

Posted on by Astrid

Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.

Behind My Anger #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Many people think I’m angry a lot. It was written in my reports from psychologists as early as age 8 and maybe even younger. I do sound angry sometimes, but behind that anger are many other emotions. I mean, I rarely feel genuinely angry, but I express many strong emotions as rage, irritability or other forms of anger.

I don’t blame other people for not seeing it. I see anger a lot when others claim there isn’t any. But it’s hard for me to look beyond (my perceptions of) people’s surface expressions. When it feels as though an angry person stands in front of me, or worse yet, behind me, I shrink inwardly, but react outwardly. This is really hard for others to comprehend, but I have the same feelings as everybody else. So do you, even if it appears I only see anger. We all need to look beyond what seems to be in front of us.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “in front” and/or “behind”. Linda’s also doing #JusJoJan again, which stands for Just Jot It! January. I will write a post when the prompt appeals to me, but I do really hope to be blogging regularly this month (and the rest of 2025).

My 2024 #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “my year”. I don’t usually review my year until December 30 or 31 and, since this post is supposed to be stream-of-consciousness, I cannot do it now either. That being said, I can write down what my year reminds me of.

I am first reminded of the fact that I’ve been tapering my medication since the beginning of the year and am now 10mg down with my antipsychotic and completely off my topiramate. The taper could’ve gone faster had I not landed in crisis just before my first antipsychotic taper and had the behavior specialist not subsequently decided to do the “minute-effing”, by which I would have to compensate for every minute I was in distress during my unsupported time by having less support at my next moment.

The year also reminds me of my continual attempts to get actually reasonably good care, after that system of minute-by-minute compensating was abandoned in late March. I sometimes feel like I could’ve come across like a very hungry caterpillar, but so what? I don’t purposefully experience distress, as the powers-that-be used to think.

I’m also reminded that this is the first full year since 2021 that I didn’t move. Back in 2021, I told my care plan review that I was 95% sure that I wanted to stay in Raalte, but hardly a year after that, I was gone. I resolve for 2025 not to repeat the same mistake.

Overall, 2024 started tough but things have improved ever since. I can’t go into every detail of what I was struggling with in early 2024 and let me just hope and pray that 2025 won’t be the same. That is, improvement is always welcome, of course, but let’s hope and pray that early 2025 won’t bring a setback.

Everything Will Be Okay… #SoCS

Posted on by Astrid

This week’s prompt for Stream of Consciousness Saturday is “wish”. What a timely prompt, as we look back at 2024 and look forward to 2025. I don’t usually have any new year’s resolutions, like I say. Rather, I call them “hopes”. They’re just the same, like I say every year, but calling them hopes rather than resolutions gives me an excuse not to think about them again until the end of the year. Then, if I didn’t make any happen, I could say they were just hopes. Like wishes, they feel a bit devoid of reality sometimes.

I mean, for 2025, most people could wish for world peace. Not gonna happen, baby! In fact, as I read the news recently, I’m more and more scared that even in a country that hasn’t been at war in almost 80 years, we won’t see a full year of peace.

And now I’m scared that by voicing that fear, I’m single-handedly making it happen. That’s my twisted mind playing tricks on me though.

I do wish for there to be many more years in which this country can live in peace. I know that, in a similar way to what I said in my previous paragraph, my constantly saying that “everything will be okay in 2034”, when the “2034” aspect of it was based in a twisted way on the idea that World War III will start then, might be tempting fate. Thankfully, I don’t believe in manifesting in this sense. Besides, don’t many faiths believe in reversal of good and bad? Like, in the Christian tradition, there’s this thing about the first who will be last. Either way, I hope and wish that my twisted words about 2034 will indeed be true and everything will be okay.

No Bad Food #SoCS

Posted on by Astrid

This week’s prompt for Stream Of Consciousness Saturday is “food”. I immediately thought of the title for my post: “No bad food.” This is a phrase used in health-conscious communities to clarify that there’s no such thing as a “forbidden” food when dieting. I had the comment that no food is forbidden written at the bottom of my weight loss food plan in early 2022. That is, the goal wasn’t even weight loss for me, but rather, to have a healthier relationship with food.

This is also what health gurus who use the phrase “no bad food” aim to accomplish: for dieters to be aware of their healthy or less healthy choices rather than rigidly stripping foods off of their “allowed” list.

I’d like to take it a step further and say that the only food you shouldn’t eat is food you’re allergic to or food that’s gone bad. And I mean this absolutely. Yes, some food choices are healthier than others, but when you’re already a restrictive eater and you’re limiting yourself even further because, for example, chocolate spread isn’t “healthy”, you’ll end up with worse problems.

I mean, when originally starting my food plan in 2022, my dietitian gave me a standard weight loss plan because I was significantly overweight. I however wouldn’t eat at least 75% of the food on it, especially the foods she recommended for breakfast and lunch. Thankfully, rather than deciding not to eat at all, which my eating disordered self might’ve done, I negotiated foods I found tolerable and that were still considered somewhat “healthy”.

Now I happen to have the privilege of being at an almost healthy BMI, but the fact that I struggled to maintain a healthy eating routine (or any eating routine, for that matter) when trying to stick to a weight loss diet, did convince me that, truthfully, there’s no such thing as bad food.

Indeed, there’s no such thing as a good or bad eating routine. Yes, some choices are healthier than others, but there’s nothing wrong with making “unhealthy” choices when those are the “healthy” choices given your personal circumstances. Honestly, in fact, I believe there’s no moral wrong in eating whatever you feel like eating. Placing the blame for obesity on the individual, is, in my opinion, ignoring the fact that many people are struggling to stay afloat mentally and physically without having to deal with restricting their food intake.

And I don’t mean that people can’t make healthier food choices, or that they shouldn’t be encouraged to do so within the limits of their own personal circumstances. Like, I eventually settled on low-calorie jelly for on my lunch bread rather than chocolate spread and for regular muesli rather than crunchy muesli for breakfast. These are healthier choices and I am glad I made those. However, if I could not have made those choices for whatever reason, it’d still have been better to eat my crunchy muesli and chocolate spread on bread than to starve.

Moon Phases and Seasons

Posted on by Astrid

I, being blind, haven’t been able to see the moon in at least a quarter of a century and for most of this time, I didn’t pay much attention to its existence. I didn’t have a clue which phase the moon was in until a year or two ago, when Apple introduced moon phases as part of its weather app. Even then, I saw the moon phase as just some random factoid I liked.

That is until a few months ago, my staff told me about a fellow client who is usually very cognitively impaired and withdrawn but lights up significantly during the time around the full moon. I haven’t yet figured out whether moon phases impact me too, but I wouldn’t be surprised if they did. I’m just not as aware of the moon because I can’t see it.

Which brings me to the topic of seasons. Fall here has been incredibly warm and I’m struggling to conceptualize the fact that it’s late October. I can still see whether it’s light or dark outside when I’m actually outside, but I am starting to struggle more with the concept of seasons. I do still know that it’s late October, but I don’t “feel” it, if this makes sense. I don’t know how much of this is my blindness and how much, if anything, is cognitive decline.

I’m sharing this post with Friday Writings, for which the optional prompt is the moon. Yeah, I know it’s Sunday, but who cares?

Clawing My Way Out

Posted on by Astrid

There have been many times when I had to creep out of a very dark, deep pit of despair. I try not to wallow in depression, but, as an Enneagram type Four (and I in no way mean to blame that for all my shortcomings), I struggle to disengage from my feelings and actually live. That is, unless I so completely disconnect from my feelings that I’m in fact pretending they’re nonexistent, something that in turn can lead to my feelings eventually overpowering me and my falling back into the pit. When this happens, I can choose to either stay there or claw my way out and so far, I’ve thankfully always chosen the latter!

I’m thankful that, even though it’s fall and this is usually a season for misery and melancholy for me, I haven’t found myself in the dark valley yet. Let’s hope I can skip it this year!

This post was written for this week’s edition of Six Sentence Stories. The prompt word is “claw”.

“Feeling Blue” Makes No Sense

Posted on by Astrid

Hi everyone. I’m a little late participating in this week’s Sunday Confessionals, as rather than Sunday, it’s Monday night. However, as someone who only “sees” color as it’s presented to me synesthetically, I felt the prompt of “feeling blue” appealed to me.

Blue, as I see it, is not a sad color at all. As such, “feeling blue” has never truly had its intended connotation to me. Blue is the color of clear skies (at least, in our perception). I associate it with inward-directed energy. As such, blue is the color of the letter T, which represents “Thinking” in the MBTI. It might be associated with introspection, but it’s definitely not associated with depression. I’d choose grey for that instead.

I am not a color-to-emotion synesthete, although if I want to, I can describe the feel various colors have to me. Red is angry, as one might expect. Yellow, on the other hand, isn’t as upbeat as most people associate the color to be. I would describe it, depending on its shade, as slightly content in a light shade to optimistic in sunflower yellow. Give me green as the representative of joy anytime. And purple, and especially lilac, is authentic, even though there’s no purple letter in that word.

What do you think? Do colors have emotional meanings to you?

September Dreams and Memories

Posted on by Astrid

Last night I dreamt of being admitted to the psych hospital. It’s no wonder, since the anniversary of my actual admission isn’t very far away, on November 3. September 23 is my anniversary of going into long-term care and last Wednesday, I celebrated one year in my current care home.

I was reminded yesterday that September is a bittersweet month. That is, I was reminded of the sweet aspect, ie. it being me and my spouse’s wedding aniversary yesterday. The bitter aspect has overshadowed my days with flashbacks and my nights with dreams more than I’d like. I am, thankfully, still coping.

I am hoping that, as I acquire more pleasant memories here at this home, the flashbacks and nightmares will lessen. I know I was saying something similar when reclaiming November in 2021. I hope this time around I will choose following my dreams and aspirations over re-enacting the past.

Sharing this post with Friday Writings #145, for which the optional theme is dreams and memories. This was more of a freewrite than anything else, but oh well.

Phones #SoCS

Posted on by Astrid

Today’s prompt for #SoCS is “phone”.

I’ve had an iPhone for just over seven years now. Before that, I had a sturdy regular cellphone. I once had the earliest model of a smartphone-like thing, a Nokia 6230i, but I could still only use it to make calls. I got it with my then new phone plan because I wanted to make use of a scheme by which cellphone calls would be charged landline fees. Remember, it was 2007, so cellphone rates were still very high and I didn’t have a landline. That is, I wanted to get one while living independently in Nijmegen but had just got it installed when I landed in crisis. I in fact had my home phone that I intended to use in my apartment with me when I was hospitalized.

The reason I could only make calls with a phone that was almost a smartphone, is the fact that it didn’t have MobileSpeak, the earliest excuse for a phone screen reader, on it and it couldn’t get it installed even if I wanted to. I’m surprised at how things have changed. Then again, I really shouldn’t be surprised. Life progresses, after all.

My current iPhone, I use for all kinds of things, almost like a handheld computer. That is, not actually almost, really, since I don’t even take my iPhone with me when I leave my room. I really want to do that more, so that I can take pictures when I notice something interesting. Like the rainbow my staff saw a few days ago. I really wish I’d had my phone with me then.