#WeekendCoffeeShare (July 26, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 9:45PM, so all I’ll have to drink before going to bed is water. I don’t mind though and hope you don’t either. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been raining all week, but temperature-wise, it’s been nice. We had daytime highs in the low 20s Celsius most days. Today, the temperature rose to 25°C. I hadn’t expected it to rain, so didn’t take a jacket with me when driving to Apeldoorn with my spouse. Thankfully, it only rained when we were in the car or somewhere else inside.

If we were having coffee, next I’d share that my spouse and I may not be divorcing after all. It’s a long story that is too personal to share on a public blog. The short version is that I sent an impulsive text last week asking my spouse to finally make arrangements, because I wanted to live independently. The reason for the text had nothing to do with my spouse, but it did get things set in motion. As it turns out though, it’s probably not practically in our best interest to divorce.

If we were having coffee, I’d go into the reason for said text: one of my “favorites” among the staff is leaving and this is at a time when I’m struggling significantly with most other staff seeming at once not to agree on any way to support me but somehow agreeing that I’m a pain in the neck. At least on a weekly basis, I hear stuff like “You can’t go anywhere anyway” or “Your spouse doesn’t want you in this state” when I’m being restrained or otherwise having my autonomy taken away.

Furthermore, it looks like my staff have decided that neither I myself nor my spouse have my best interest in mind, while in that order, we’re the ones most adamantly advocating for me. However, I saw impulsive comments my spouse made after we found out divorce may not be an option cited in my report. This wouldn’t have been such a big deal, had staff also objectively reported their own comments, like all the “You can’t go anywhere anyway” stuff. The way it sounds now, my spouse sounds like the bad one.

One of my assigned staff even got me to agree on getting more information about guardianship because she somehow feels that a person who doesn’t know me but knows the law is better able to make decisions for me. I have yet to tell my staff no on this one.

If we were having coffee, I’d share that I did finally work with polymer clay again. I made a parrot for the staff who’s leaving, because this staff has two parrots. We have plans for making her other one out of polymer clay sometime this coming week.

If we were having coffee, lastly I’d share that I’ve been obsessing over recipes and cooking again. Like I said yesterday, I made a curry for myself and my fellow residents on Tuesday. The staff who helped me with it, proposed we do cooking again this coming Tuesday. This time, I chose a pasta bake. I’ve also been making smoothies and overnight oats recently.

I have an app on both my PC and iPhone to organize my recipes. It’s called Recipe Keeper and I’m half convinced it’s spyware like TikTok. Other than that, its only drawback is the fact that somehow I can’t have my password manager remember the password. This has me paranoid too. However, it’s the only app that’s available on both iOS and Windows that is remotely useable for me.

Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.

A Letter to My Younger Self #Write31Days

Posted on by Astrid

Welcome to day nine in my #Write31Days series on personal growth. Today, I chose yet another prompt from The Self-Exploration Journal. It asks what one piece of advice you would give your younger self if you could go back in time. Ths question couldn’t be more timely, as I’m facing a lot of regrets from the past right now as I face the decision to apply for long-term care. I am spinnning this questioon around a little and going to write a letter to my younger self. I don’t have an idea for the age of this younger self, but the piece of advice should be the same anyway.

Dear Younger Self,

This is your 32-year-old self writing. I want to reassure you that I see you. I see your struggles for autonomy, for self-determination. And yet, I see your struggles with your limitations. You have yet to come to terms with the fact that you’re multiply-disabled.

I see that peope try to control you. Your parents consider you worth parenting only so long as you prove that you’re going to give back by contributing to society. Your support staff try to please your parents, sending you out to live on your own despite knowing this isn’t in your best interest. Your psychologist in Nijmegen, no matter how helpful she is in some respects, still doesn’t provide you with the opportunity to go into the right type of care. She, like eveyrone before her, values your intelligence over your need for support. Your psychologist in Wolfheze blames you. She robs you off your last bit of self-determination by kicking you out of the institution without proper after care.

I want to reassure you. I see your needs. I’m fighting for them to be met. I don’t have enough support yet, but I have people around me who are fighting for it with me. I can’t promise you that you will ultimately get into long-term care, as that’s up to the funding agency to decide. I can however assure you that I’m fighting for you.

If there’s one piece of advice I could give you, it’s to fight for yourself. No-one can live your life but you. You don’t owe your parents anything. You’re past that point. Care staff do only their job. This isn’t to discount the good work my current care staff do, but it’s just that, work. They will eventually fade out of our life. Even your husband, the only person who will most likely stick by you for a long time to come, doesn’t have the right to control you. I know you want to please him, because you love him, but that is different. Pleasing your husband is founded on love, not authority, and it is mutual. Even so, your husband does not live your life. Ultimately, the only person who will live the entirety of your life with you, is you.

I don’t mean this to criticize you at all. I see how hard it is for you to stand up to controling people. But you’ll learn to do so in time.

With love,

Astrid

What one piece of advice would you give your younger self?