Not Dead Yet

Posted on by Astrid

“Not dead yet.” That phrase has been on my mind almost constantly for the past few days. It’s the name and/or slogan for a disability rights organization most specifically focused on campaigning against the “death with dignity” lobby.

Though I am 100% in support of every individual’s right to die when and how they want, the key here is “individual”. This means no-one should be pressured into dying either by family members or relatives, doctors or the government. This is why the phrase resonates with me.

My best friend and I are now almost officially divorced. I say “almost” because we’ll still separately have to talk to a lawyer via a video call next week. I however already updated my Facebook status and told my parents. This may’ve been a mistake less than two weeks before my birthday, but I can’t undo it now.

My parents are saying they’re worried I’ll end up lonely in the institution. No amount of me telling them nothing’s changed about the relationship with my best friend, convinces them otherwise. They’ve actually invited me (and explicitly just me, without my best friend) for dinner at a local-to-me restaurant on my birthday. Too bad I’ll already be meeting my best friend.

That’s not the worst though. The worst are all the comments my mother made on the phone about how she’d rather die than live like this, how hard it is for her to see relatives in care facilities, how I’ve only deteriorated over the past 20 years, etc. She herself claims she’s already made plans of ending her life in the event my father passes before her. I respect that choice, because like I said I’m all for the right to die. But it has to be a right. The way my mother spoke, it made me feel pressured to end my own life.

As poor as my quality of life is at times, I’d still like to be the one making the decision whether it’s so unbearable without a prospect of improvement that I’d rather be dead. I don’t need my parents’ opinion on that. And at this point, I’m choosing to stay alive whether my parents like it or not.

#WeekendCoffeeShare (June 13, 2026)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 7:40PM as I start typing this post, so I’ll soon take a break for my evening soft drink and chips. I made a smoothie for myself and my fellow residents about an hour ago. It was good. I used frozen mango, pear, flaxseed and soy milk. Feel free to grab a virtual cup yourself (I’m pretty sure the real smoothie has all been consumed). Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, we had daytime temperatures around 18°C. We also had rain, wind and some thunderstorms.

If we were having coffee, next I’d tell you that this week, the institution’s four-day evening walking event was held. That is, two out of four walks were canceled because of a code yellow weather warning for thunderstorms. On Thursday and Friday, the walk did go on, but we were soaked in rain on Thursday.

If we were having coffee, I’d share that I’m still going strong with my movement goal on my Apple Watch despite the weather. I’m not meeting my exercise goal each day, as sometimes the weather only permits one short walk, but apparently it’s still easy enough to burn 300 active calories each day. I am currently only 1kg overweight, by the way, which is why it kind of surprises me I still meet my goal relatively easily.

If we were having coffee, I’d tell you my week has been hard in other respects. Early in the week, I needed support during the night, waited patiently for a staff to make his way from the main building to me only to find out later on he’d been spending ten minutes putting away dangerous objects from the living room before seeing me even though there hadn’t been a reason to think I’d use them. I heard him rummaging about in the living room, so asked what was going on, thinking maybe it was a fellow client. He said it’d been him, the night staff. “And it’s night, so please go to sleep.”

A few nights ago, I did go to the kitchen and pulled out scissors but didn’t use them. This prompted the night staff to request the kitchen be locked at night again because of the time it takes the staff to make their way here. This request could’ve been reasonable (if a little overboard), if not for the fact that the kitchen only has a gate, not a full-size door. This means I can easily climb over the gate using a chair, causing a fall risk that in my opinion outweighs the risk of me self-harming using one of the objects in the kitchen. Besides, if you want to eliminate every risk of a client self-harming, well, you’d need to drug them up and tie them down. This question, whether clients need to be kept safe from harm at any cost, has been on my mind a lot. As much as I cling to life itself though, surviving is meaningless if my quality of life is poor.

This same issue came up on Wednesday when I saw the physical therapist. She’d recommended I start using a rollator walker. I’m not altogether against it, although I did say so when she came by with it, but that’s more because she claims she won’t do anything for me unless I start using the walker. The reason I’m leaning towards rejecting it for now is the fact that with it being incompatible with a white cane, it’d lead to even further dependence on non-disabled people than I already experience. I know it’d theoretically at least cause me to walk more safely, but the only times I’ve fallen over the past year have been times I didn’t wear my orthopedic footwear for one reason or another (usually because it was at the repair shop yet again). The physical therapist keeps saying nothing can be improved about the footwear, promised me an extra pair of shoes but never got to actually making sure I’d get one and is now saying I shouldn’t walk as much as I do. She isn’t giving me any alternatives to walking either. This and other things make me believe the professionals’ feelings about risk are more important than my feelings about my quality of life.

If we were having coffee, I’d share that I’m stressing quite a bit over the divorce. The final appointment with the mediator was supposed to be last Tuesday but got postponed a week for practical reasons. I’ll also have a meeting with the client confidante, my assigned staff and the behavior specialist on the same day. I try to separate the divorce from my care situation. However, the fact remains I’ll be literally homeless without the care home from this coming Tuesday on.

If we were having coffee, finally I’d share that I was on the phone with my wife between my evening soft drink and finishing this post. I told her I’d been making smoothies. Then we got talking about blogs. My wife joked that mine isn’t juicy enough for the divorce mediator to read, so I replied that I’d have to share smoothie recipes to make it juicier. That made her laugh out loud.

#WeekendCoffeeShare (June 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I just had my evening coffee and will probably take a break from writing this post to have my soft drink and chips at 8PM. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been less hot and more humid than it used to be. The daytime temperatures this week were often around 18°C and it’s been rainy. We also had quite a few thunderstorms. I’m not liking the rain and still sweating as it’s still warmer than I’d like (is this perimenopause hitting?), but I tell myself this weather’s more normal climate-wise.

If we were having coffee, I’d share that I reached a perfect month with respect to my movement ring on my Apple Watch in May. So far, I’m still meeting my goal each day, though it’s been challenging with the rain. I didn’t complete my monthly challenge for May, by the way.

If we were having coffee, I’d share that I’m still struggling with my care situation and whether it’ll actually work here or not. The behavior specialist did reassure me that they can’t kick me out even if it turns out this place can’t provide the care I need.

I was worried about being kicked out after I had several more incidents in which staff used excessive force and I was quite blunt that I won’t have to put up with it. The meeting with the care confidante has been scheduled for the 16th. The substitute behavior specialist will be gone by then and the regular one will have the meeting with us. She can be a bit, well, challenging. This caused me to feel scared that, if I put my foot down that I won’t have to deal with force unless absolutely necessary to prevent/avert serious problems, she’s going to turn it into a battle around care refusal. I had this experience before. Let’s hope the meeting goes as well as possible.

If we were having coffee, I’d share that I did have some positive experiences this past week. On Monday, my staff and I decided to take pictures on our walk on grounds. I ran them through the image description tool built into JAWS and it was really good.





On Thursday, the same staff offered to help me create a soft pastel drawing using one of my unicorn templates. I hung it onto my bathroom door, but unfortunately it crinkled when I opened the door too many times, so I removed the drawing. I did snap a picture though.

If we were having coffee, I’d share that I cooked dinner twice this week. On Wednesday, I cooked minced meat, rice and vegetables for just myself. I didn’t really enjoy it, because I’d gotten it in my head that the mince was infected with prion-borne disease. My wife, who is a vegan, isn’t the right person to comfort me in this respect (though she did try), but she is the right person to advise me on how to cut back on animal products and eat more healthfully in general.

I decided to cook a vegetarian pasta dish this Saturday. On Wednesday, I had to make a grocery list for it and I decided kind of impulsively to cook the dish for my side of the home. I cooked orzo with spinach and tomatoes. I initially thought I wouldn’t like it (don’t ask me why I picked it then), but I did and so did my fellow residents!

I just ran the photo of this dish through the image description tool and I’m not as content with the description this time.

If we were having coffee, lastly I’d share that the final meeting with the divorce mediator will be on Tuesday. I’m struggling quite a bit with the reality of my wife and I divorcing. I mean, I try to tell myself we’ll remain best friends, but I can’t just shut down my anxious attachment style.

Besides, the behavior specialist does seriously wonder whether I’m in the right care home. I did tell her that, if it turns out it’s in my best interest to move again, I don’t want to be handed over like a parcel, like I was when I left Raalte and when I came here. This does have me consider several factors involved in potential new care homes, including the distance from my best friend. Like, if the most appropriate care home for me is across the country, does this mean I’ll be all alone there? It’s all quite complicated and stressful.

May 2026 In Review

Posted on by Astrid

Hi all! It’s the last day of the month and this means it’s time for my month in review. The month of May was harder than the month of April even and, if I had to summarize my attitude in one sentence, it’d be “I’ve had enough, this is the limit!”. Unfortunately, my saying that I’ve had enough, doesn’t mean people around me actually listen.

The month started with a weekend in which I experienced a major breakdown, during which I expressed quite a lot of hopelessness, leading to suicidal ideation. I expressed my despair in the living room with several other residents present. I realize this isn’t acceptable, but I can’t take full responsibility for the situation either. This among other things led the staff to decide to drag me to my room the next Monday for the crime of appearing in distress while in the living room outside of my one-on-one.

This was the final straw for me with respect to my staff disregarding my rights under the guise of my (or rather, other people’s) best interest and I decided to contact the client confidante on involuntary care. So far, even though I had the initial meeting with her three weeks ago, no luck planning a meeting with my support coordinator and behavior specialist and I doubt it’s ever going to happen. I’m currently at a very low point in my perpetually low trust of the powers-that-be. I would like to say I’ve hit rock bottom, but each time I say this, I realize things can get even worse.

All this does diminish my joy in the fun and meaningful activities I do engage in. Mind you, I still do occasionally do meaningful activities and I might start cooking for my side of the home again soon, but I doubt that with the way my staff are struggling to support me, it’s ever going to work.

My wife and I had two meetings on our divorce this month too. It’s been quite stressful even though we’re in agreement about what we want. The next meeting will be for us to sign the agreement and then our part of the process is over I think.

I’m noticing that, despite my hope of expanding my social circle this year, I’m self-isolating more. I did attend the monthly brain injury meeting this month but that’s as far as it goes. Nobody seems to want to support my hopes and dreams either and this frustrates me to no end, because with my executive dysfunction, I can’t pursue them without help.

I did start working in a neurodivergent-friendly dialectical behavior therapy workbook after I’d had the umpteenth argument with a staff. I’ve also let my support coordinator and assigned staff know I’d like to get help regulating my emotions, but I doubt it’s going to happen in a way that works for me. I mean, my staff obviously would like to see me suppress my needs and feelings again, while I do realize I need to express them less aggressively but this does mean expressing them earlier on.

A few weeks ago, the topic of whether I’m at the right care home was brought to the table yet again. I can’t shake the feeling that, so long as I haven’t become unmanageable to the staff yet, nothing will change and, if/when I do become unmanageable, I’ll be kicked right out. The higher-ups are trying to reassure me I won’t be kicked out “just like that”, but truthfully I don’t know what’d be worse: being kicked out or remaininng in my current place while nothing improves indefinitely.

Divorced Woman Laughing…

Posted on by Astrid

Hi everyone. I’m still struggling quite a bit with all sorts of things related to my care. Haven’t heard back from the client confidante yet and it looks like either way my staff, including my support coordinator and assigned staff, don’t care. All I can do right now is power through and make the most of my day.

My wife and I had a meeting with the mediator on our divorce today. We are 100% in agreement about what we want, so it’s really an easy process for the mediator. That’s what she actually quite literally said. My wife joked on our way out that for once we’re the easier ones. We literally left the building laughing.

This is my main positive for the day. I can’t stand it that my staff all seem to assume the divorce is a major stressor in my life. I understand why, since most have probably gone through a break-up and none have been institutionalized. However, I’ve probably explained dozens of times that my best friend and the complicating factors involved with our friendship (like the divorce) are the least of my worries at the moment.

I did ask the client confidante about my daily records and whether there are guidelines on what to write in them and not to write in them. The reason is the fact that, at least once (admittedly a while ago), my then assigned staff almost word for word wrote out an argument with my wife I’d told her about. On the other hand, staff are extremely cautious where it comes to reporting on issues I’ve had with them or their coworkers. They don’t use names at all, which I can sort of understand, but they also go to great lengths to make it sound like I was always the bad one in the interaction. For example, I’ve seen staff report that I was “being rude” or “twisting their words” without elaborating on what they and I said. The reason said staff wrote out the argument I’d had with my wife, she said, was that she worried I might be stressed about it later on. Then for goodness’ sake write out the interactions I do say stress me out! But they won’t, because they don’t want to make their coworkers look bad… so they choose to throw me and my best friend under the bus instead.

After the mediation meeting, my wife and I went to Burger King to grab a vegan burger. It was good. All the while, we kept calling each other “participant A” (my wife) and “participant B” (me), since those are our formal titles on the agreement (thankfully the mediator uses our first names most of the time). At the next meeting, we’ll sign the agreement. It will probably take a while after that for our divorce to be registered. In that sense, the title of this post is a little misleading, but I like it this way.

Chosen Family #WotW

Posted on by Astrid

Hi everyone. Today, I’m joining in with Anne’s Word of the Week linky, as well as Natalie’s #WeekendCoffeeShare. My word of the week (or rather, phrase, as it usually is), is “chosen family”.

First, as I usually do when writing my weekend coffee shares, I’d like to write about the weather. Over the weekend, it was good: relatively warm and somewhat sunny too. I even sat in the sun for a bit on Sunday. However, most of this week brought cooler temperatures and rain. Today, the daytime high was 9°C. That’s considered normal for this time of year, which I honestly believe is crazy but oh well.

Now here’s why my phrase of the week is “chosen family”: several things this week made me realize my wife is more like family than my birth family. Yes, even now that we’re officially in the divorce process.

You see, we had our first meeting with the divorce mediator and financial advisor on Tuesday. I won’t go into detail as to what we’ve been discussing, but it looks like we’re both going to be okay and we’ll find a way together to make this work. We’ll have our next meeting on April 14.

On Saturday, I was at our house too. I got strange queries in Chrome so had run a full virus scan two weeks ago and it’d found a threat. I initially brushed it off, but finally told my best friend/wife. She was a bit stressed, because I had not paid attention to the full implications of this and for example changed my passwords. I didn’t know what the malware might’ve done, so went to our house on Saturday so that she could check it over. It looks like no actual damage was done, thankfully. In case I’ve mentioned the name of the recipe manager I used though (I’m pretty sure I touted it as the perfect app) and anyone’s installed it too: that was the source of the malware. No more Chrome extensions for me.

Today, my mother texted me to check on me. I, stupidly enough, called her. We’ve been in very limited contact for years now due to her attitudes towards my childhood trauma. After I got more of the same shit, among which comments insinuating that I should move closer to my family because my friendship with my best friend may not be forever, I had had enough. I don’t know yet what will happen in the long run, but for now I’m genuinely done with my family of origin. My best friend feels more like family than my parents do and yes, I’m aware that our friendship might dissolve over time. Then again, no relationship is forever.

Feeling Love #SoCS

Posted on by Astrid

Hi all. Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “love”. I was immediately reminded of a moment, about seven years ago, when I learned of emotional development and learned that seven-year-olds can feel and understand complex emotions like love. I can’t say I don’t value people, but I have no idea what “love” feels like. When I told my wife about this, she was upset until I explained that it doesn’t mean I don’t consider her special. Maybe “love” is just not the right word for it, or maybe it is.

Now that we’re in the process of divorcing, I am the one feeling the most distress over the idea of not considering my wife my partner anymore. I wouldn’t say I’m very romantic, like I wrote last year in response to a WordPress daily prompt, but I’m the one out of the two of us who feels the most comfortable with romantic gestures, such as giving one another heart-shaped gifts. In fact, I feel slightly sad that my wife would prefer I no longer make “romantic” gifts for her.

Does this mean I feel love? Or is it just something I’ve rationally connected, like when my wife and I got married thinking this was the way to go if we wanted to show each other that we’ll always be together? I wonder about this many times: how much of my expression of my emotional experience is genuinely in alignment with my actual feelings and how much is learned as part of the process of growing up? In some ways, it doesn’t matter, as emotional development is partly learned in all people. However, what I mean is, do I actually no what I feel or am I just mimicking how I see other people label certain experiences?

In this respect, I am always reminded of a snippet in a book on autism. A mother had explained to her autistic son that he was feeling jealous when his sister got a doll and he didn’t. The next time he expressed jealousy, this time at his sister getting attention while he didn’t I believe, his mother again said he was probably jealous. The boy then replied that jealous is when his sister gets a doll. This is often how I express feelings too. Does it mean I love my wife because we’re on the phone for at least an hour everyday? Does love only count when I give her heart-shaped gifts? Can I love other people besides my wife? Does it, in this respect, matter if we were to stay married or now that we’re divorcing but will remain best friends? I honestly have no idea.

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.

Wife #WotW

Posted on by Astrid

Hi everyone. No #WeekendCoffeeShare this week, so I thought I’d find another way to sum up my week. I’m joining Word of the Week. It’s often hard for me to pick just one word or phrase to summarize my week. This week’s is “wife”. I contemplated other words and phrases, like “divorce prep”, “stressors”, etc., but my wife is the one who’s pulled me through most of the stressors.

For those not aware, my wife and I, who have been best friends for over eighteen years and married for over fourteen, will be getting a divorce sometime in the next couple of months. The reasons are personal and mostly irrelevant, as we’ll remain best friends hopefully for life.

Last Monday, my wife found out that the practical part of the reason we didn’t go through with divorce when we were first deciding on it last year, isn’t likely relevant to us. This was a financial reason that I won’t go into. Suffice it to say that, when we saw the mortgage advisor on Tuesday, we found out that even in the worst case scenario, both of us will manage financially.

I do struggle emotionally with the idea of divorce and particularly the fact that our house will be fully signed over to her. Not that I ever lived in that house or that I’m ever going to again. Practically, it’ll make no difference, but it does feel kind of off that I’ll essentially be signing myself out of the opportunity to live in a “normal” house for life. Then again, in reality, I did this in 2019 when moving into long-term care.

On Wednesday, my wife and I established a pattern of multiple, long phone calls. That day we were on the phone seven times. I was struggling with feelings of self-hatred over the ways I’ve treated my wife poorly over the years. Particularly, I was struggling with the idea of emotional vs. cognitive empathy. I’m an emotionally sensitive person or so my wife says, but I still end up hurting my wife and other people regularly. I guess that’s me being autistic though.

I also talked to my wife about how I’m regularly being confined to my room for having meltdowns in the living room. I somewhat see the reason behind this, though not fully because my behavior scaring other residents, isn’t the full story (there’s also some part about my being presumed competent enough to hold it together). However, what I clearly don’t understand is staff’s inability and might I say regularly unwillingness to help me prevent having a meltdown. I’m still kind of struggling with the battle between autonomy and protection.

Yesterday, I was trying to figure out how to get to a cerebral palsy meeting in Utrecht next week. The restaurant the meeting is being held at, cannot be reached by ParaTransit taxis. I might be able to travel by train, but that’d be quite a challenge too. Again, it was my wife helping me make decisions. I’ll most likely not go to the meeting this time, but remain in the WhatsApp group so that I’ll get a feel for the other people attending and have more time to make arrangements. By the way, my wife and I had four phone calls and she said we’d better create a new pattern or we’d have to call each other a negative amount of times tomorrow (7-4-1-etc.). Maybe I’m wrong though, as my wife said the number of times we’d be calling each other had to be a prime number and four isn’t one.

#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.