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.

Birth: The Effects of a Complicated Start in Life #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter B post in the #AtoZChallenge. I’m doing this challenge on healing past hurts. Today, I want to go far into my past: I want to talk about the effects of a complicated birth.

As regular readers know, I was born prematurely and spent the first three months of my life in hospital. Of course, I have no conscious memories of this time, but that doesn’t mean my complicated start in life didn’t have an impact. There is evidence that many people who were born prematurely or otherwise had a difficult start to life, experience attachment problems into adulthood. Now of course I didn’t have the most positive childhood either and there is no way of knowing whether I would still have attachment issues had my parents been well-attuned to me. Of course, this is also a difficult question, since my parents experienced their own trauma having me prematurely.

The thing remains though, a child who was born prematurely, spends time in a clinical setting that they should’ve spent literally inside their mother’s body. There are attempts to lessen the burden this has on children (and parents). For example, kangarooing, in which a baby experiences skin-to-skin contact with their parents, is encouraged as soon as it is possible. However, for preemies and other NICU graduates who are now adults, this may not have been the case. Many older NICU graduates hardly saw or heard their parents for the first few weeks to months of their life. My parents, thankfully, lived in the same city I was in the neonatal unit in, so they were able to visit often.

One thing that haunts me though, and I’ve mentioned this several times, is the effect my being medically complex from birth on left on my parents’ attachment to me. Like I said, whether I would’ve experienced attachment issues had my parents not mistreated me as a child, is a difficult question because one of the reasons they treated me so poorly is their difficulty coping with my being disabled. My father quite literally asked the doctor whether it’d make sense to keep me alive after I’d had a brain bleed a few weeks after birth.

It’s telling, in my opinion, that when you look up “birth trauma” online, what comes up most frequently is not the effects a child’s own start in life could’ve had on them, but the effects of complicated childbirth on parents. And like I said, one goes hand-in-hand with the other.

A Good Mood

Posted on by Astrid

Hi all on this rainy Wednesday. I just found Esther’s writing prompt for this week, which is “mood”. Since I’m in a pretty good mood right now, it feels appropriate to write about it.

Yesterday, I had a meeting with my support coordinator and the behavior specialist who’s filling in while my home’s regular one is on maternity leave. As regular readers of my blog might know, we’re in the process of designing a new, activity-based day schedule for me. Initially, the draft didn’t appeal to me, because for one thing I’d wanted it to include time for me to have a cup of tea in the living room later in the evening. As those who’ve followed me for a long while will know, I introduced this cup of tea last summer and it helped me through a dark period. Of course, I’ve mentioned more than once that if a cup of tea is the only thing to lift my mood during a day or even week, that’s not really all that good. I mean, yes, it signifies that I’m not majorly depressed, but it isn’t particularly a sign of good quality of life.

My support coordinator yesterday told the behavior specialist about my daily positives and negatives, which I’ve been sending out to her and my assigned staff on a weekly basis. She mentioned that my positives usually include activities that have meaning for me, such as crafting, cooking, baking or the like. My negatives usually involve situations in which the staff don’t adequately support me based on my needs of that moment, such as when they place too much responsibility on me.

Yesterday, I for the first time in a while had a day in which I didn’t see any negatives. When I wrote in the Gratitude app in the evening, I even rated my mood as “good”. Not “great”, but I don’t expect to feel great. I usually rate my daily moods as “okay” at best.

I listed several positives yesterday too. One was my having made another batch of homemade granola. This takes only about half an hour total, but it significantly lifts my mood to make it.

Similarly, on Monday, we had twenty minutes left of my long activity time slot in the afternoon after having gone on a walk and having had coffee at the institution townhouse. My staff initially proposed we play a dice game, but I suggested we try making a simple bracelet. My staff questioned whether we’d have enough time to finish this, but I challenged her by saying we could at least try. Usually, I’m the one suffering from inertia because I fear we cannot finish an activity within my allocated time slot. That’s one reason I proposed doing a more activity-based day schedule, of course including approximate times for the activities. Anyway, guess what? We finished the bracelet on time!

Today, if nothing major happens to diminish my mood, I’ll also have a day with no negatives. This morning, I started off by feeling a bit stuck by fear of there not being time for an activity. Thankfully, I pulled myself through it and guess what? I made not just the one thing out of polymer clay I’d wanted to make, a rolling dice for a staff who’s leaving and with whom I used to play dice all the time. I also started on a project for a staff who’s just become a father. Of course, since the dice had to be painted, I didn’t finish it right then, but I did in the afternoon, just on time for the staff’s goodbye.

My support coordinator is definitely right that meaningful activities are what help me get in a good mood. Isn’t that normal though?

January 2026 in Review

Posted on by Astrid

Hi everyone on this last day of the month. I’m joining Natalie for her monthly wrap-up. I started the month with optimism, but as I write this post at nearly 10PM on the 31st, I’m struggling to remain hopeful that anything will ever get better. And is it is, life is a battle.

I fully intended to experience more in the creative and culinary departments in 2026. This was not a total failure in January, but I didn’t start off the year with the bang I’d secretly hoped for.

I did create a few things out of polymer clay this past month. I also crafted a few new bracelets and a necklace. My last crafty project, however, was over a week ago. I created a crocodile out of polymer clay. No picture, as I haven’t even baked it yet. I did make plans with one of my staff to finally create the standing unicorn sculpture I have been meaning to create forever. Let’s hope it doesn’t just remain a plan.

I also didn’t cook a main dish even once. That’s sad, but on the other hand, I did manage to bake a few things. Most recently, yesterday, I baked granola. I ate it this morning with my quark and it was delicious!

In the blogging and general writing departments, the beginning of the month was also a lot more successful than the last couple of weeks. I once again gave up on #JusJoJan pretty early on and only managed to do my Morning Pages for a few days. I do however still have a streak going on in Day One, my preferred journaling app. Granted, I only write some snippets in response to a daily template, but oh well. I still like the Gratitude app, but don’t use it as faithfully as I’d intended. Then again, I realize that pressuring myself to write everyday, isn’t helping my joy.

In other news, none of my staff nor me have heard from the Center for Consultation and Expertise (CCE) yet. On top of that, the behavior specialist went on maternity leave a few weeks ago. She has someone subbing for her, but I doubt this has been communicated clearly to the CCE. Even if it has been, I sort of believe the consultant gave up on me when she got the impression my quality of life is okay.

I realize my support coordinator and assigned staff are well-meaning and really want to help me improve, but I get the impression part of the team doesn’t believe that I deserve or need anything to change. I’m still haunted by the words of my intensive support home assigned staff. She believed that, because of my attitude, there was no way I would ever be happy anywhere. This might be partly true, though it’s not because of my attitude but because living in a neurotypical world as an autistic person is hard. However, just because I’ll never be perfectly happy, doesn’t mean no-one should try to improve my situation. Then again, maybe I’m just one giant nagger of a person.

My 2026 Word of the Year

Posted on by Astrid

Hi everyone. I’ve been debating for a few weeks now whether to choose a word of the year (WOTY) this year. I did so some years, but haven’t had a WOTY for a few years. I just came upon Deb’s announcement of her WOTY and this gave me the kick in the behind I needed to decide on one.

So what will my word of the year for 2026 be? I’ve had a few on my mind, but finally settled on: EXPERIENCE.

This year, I hope to experience more of what life has to offer. This includes being more mindful of my daily activities, purposefully choosing ones that enrich me. This includes crafting, cooking and baking, blogging and writing in general and reading. Today, despite struggling quite badly and feeling depressed, I managed to craft and write.

Like I shared when writing about my hopes for 2026, I also intend to expand my social circle. I feel rather insecure about this, being that I’m nearly 40, autistic and multiply-disabled. However, I’m embracing the opportunities to socialize that come my way. Today, I did try out Discord again in hopes of finding the community I used to find on forums back in the ’00s. It’s not the most intuitive social networking app, but I’m getting the hang on it.

I should say that I used to do with Discord servers what I do with Subreddits and Facebook groups, ie. I collect them as it were. This needs to stop. After all, social circles aren’t based on the number of likes or comments on a social media post. It’s about quality, not quantity. I struggle with this. It’s probably in part related to my anxious attachment and the fact that I’ve had more than a few groups I was deeply invested in only to be kicked out. Then again, I didn’t invest in genuine personal connections other than with my wife. That needs to change. If I want to experience all that life has to offer, I have to offer a part of myself too. This is scary, but I hope it’s doable.

What If 2034 Isn’t the End After All?

Posted on by Astrid

Hi everyone. I’ve been struggling quite badly with lack of meaning in my life lately. I mean, last week was pretty productive, but unfortunately that didn’t last.

Last Sunday, I was also discussing my comment that everything will be okay in 2034 with my wife. As regular readers of this blog know, I got the idea from the book 2034. Not that I’ve read it, but it’s about the next world war and I somehow decided to flip things around and say that everything will be okay. Originally, I was sort of serious, like I used to be about 2021 back in the early years of my blog. Now though, the only way I can picture 2034 is it being the end of the world in some kind of nuclear war.

My wife put things into perspective for me, saying that while it’s possible there’ll be a war between the U.S. and China in the coming decade, Europe most likely won’t be involved. That doesn’t mean there aren’t other risks, of course, but it sounds unlikely that the world is going to be blast to hell in 2034 or before.

This, however, doesn’t feel entirely comforting. The thing is, I’ve built my life around the idea that I won’t have ten more years to live. I’ll be 48 in 2034. That isn’t young, but it’s way too young to be dying of natural causes.

It somehow feels safe to say I will die in 2034 anyway. This allows me the luxury of not making any long-term plans. It allows me to take life day by day, week by week. It also allows me not to worry about my quality of life in the long run, which if I do think about it, doesn’t look good. My one-on-one has to be reassessed at the end of 2026. I’m scared that it’ll be cut and I’ll be forced to take more sedating medications to deal with the resulting challenging behavior. If that’s my life from 2027 on, all I can hope for is that it doesn’t last long.

Also, if life drags on past 2034, there’s no urgency to help me improve my quality of life. Not that there is according to the powers that be anyway. The team manager literally asked me what I’d do if everything isn’t alright by 2034. This was six months ago, when I was actively considering ending my life. I’ve not been actively suicidal since, but my life being finite has been on my mind all the time. And I’m not sure how I feel about this. On the one hand, I really want to make the most of the remainder of my life, but on the other hand, I am paralyzed by, well, I honestly don’t know what, and this leads me to think that I’d be better off dead.

The Good and the Bad: How I’d Rate My Days

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is rather relevant for me. In it, Sadje asks us how we’d rate our day. I’m not going to pick a specific day, but use this as an opportunity to write about the quality of my days and as such my quality of life.

When the Center for Consultation and Expertise consultant met with me last September, at one point she asked me how I’d rate my quality of life on a scale from 1 to 10. I find this difficult to say, as some days just about completely suck while others are okay or even somewhat joy-filled. I said that, on my absolutely awesomest days, I’d still rate them 7 out of 10 due to the fact that I experience pain and other forms of discomfort daily. Honestly though, I’m being optimistic when I do this. Even on my greatest days, after all, I hardly experience any noteworthy things. Like, I consider cooking or crafting to be enjoyable, but is my day really more than just about okay when I have done one of these?

This also signifies that my life could still very much be improved with just a few in my opinion relatively minor changes to my care. However, my staff see it differently, because they believe I can’t do a cooking or crafting activity when I’m in distress and, I believe, they also think I should be happy with just a walk and a dice game each day. Which, honestly, I’m not.

This makes me feel bad. In the words of my assigned staff at the intensive support home, when the staff follow my day schedule perfectly and I get all familiar staff, my day should be perfect. I replied, in my opinion truthfully, that no-one ever has a perfect day.

Now, to answer Sadje’s question about how I’d rate today: I’d probably rate it a 4 out of 10. I was rather distressed due to another incident yesterday. I also didn’t get to do anything other than go for two walks and play a game of Yatzy. I did, however, manage to do some reading and, as you can see, am writing this blog post. This signifies that, despite my distress, I’m still relatively able to function. My days could still be a lot worse. Besides, I had a cup of green tea in the evening. Oh wait, there I was being cynical, because green tea has become my symbol for how I actually feel about my life: when a cup of green tea is the highlight of my day or even week, that’s rather odd.

Quality of Care

Posted on by Astrid

Hi everyone. Today, I filled out a survey by the Dutch disabled people’s lobby group Ieder(in) on the quality of my care and its impact on my quality of life. I filled out the same questionnaire in 2023, a month or so before moving to my current home. Back then, I rated my quality of care 2 out of 10 and ticked almost every box on incidents I’d been involved in (as a target).

Today, I could think of only one incident box to tick: incidents due to lack of oversight, such as elopement. I mean, I myself have been aggressive towards staff, but that’s not what was meant. I also rated my quality of care 5 out of 10. That’s still not good enough, but it’s a lot better than it was back at the intensive support home. As my wife jokingly said, maybe in two years I’ll rate it 8 out of 10.

That’s not even entirely impossible, because as I explained in the field for additional comments, the bureaucratic framework for better care exists. By this I mean that I have a budget for one-on-one care that’s sufficient and that on most days, the home isn’t too short-staffed to provide me most of the care I need. What still makes me judge my quality of care as insufficient, is the fact that the way my care is organized in practice, doesn’t work for me.

There was a question about whether you have familiar staff or not. Back in 2023, I think I answered that I almost always had unfamiliar staff. Now I can’t remember which box I checked, but I did put into the comment boxes that the team including so-called regular temp workers is so large and new staff are oriented so chaotically that I essentially deal with a lot of near-strangers.

Speaking of which, my support coordinator thankfully agreed to another chance at orienting the new staff I mentioned on Saturday. Today, she attended my evening activity and we just chatted in order to get to know one another. I still feel some discomfort around letting her be oriented to my morning routine tomorrow, but agreed to it anyway. The fact that the staff even gave me a choice, shows improvement.

I must say I’m less willing to accept awful care now than I was two years ago. After all, let’s face it, almost no-one in the outside world accepts a random stranger into their house who refuses to leave and demands to do personal care tasks for them. I was forced to do exactly that until a year ago (and on Thursday, but thankfully my support coordinator changed that). In that sense, I wish there were a question on the survey asking me how my care compares to two years ago. I mean, in early 2023 I wrote a pretty cynical post about a day with optimal care. I reread it just now, thinking I’d claimed my care was actually optimal back then. I fully intended to contrast my revised idea of what constitutes “optimal care” now with my screwed view back then. Thankfully, my perception wasn’t as screwed in 2023 as I thought it was. In fact, I said pretty much the exact same thing I said on the questionnaire today: the framework is okay, but the practical reality isn’t. I do feel my reality is better though than it was then.

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.