When We Said Our Vows…

Posted on by Astrid

When my wife and I said our vows to get married in September of 2011, we were clear about the reason for getting married: it wasn’t about money, it wasn’t about living together, it wasn’t about kids, rather it was about us making a vow to always be soulmates.

My wife and I have been talking divorce for over a year now and, though we canceled the lawyer’s appt last summer, we’re now pretty certain that we’re going to divorce after all.

The reason, once again, has little to do with our love for one another. We still say “I love you” almost every time at the end of a phone call – and there are plenty of phone calls between the two of us. Neither of us though mean this in a romantic or sexual context. If I’m being fully honest, we should always have been best friends rather than partners, as that’s what we are and that will (hopefully) never change.

This post was written for the Six Sentence Story blog hop, for which the prompt this week is “vow”.

My Life Is Virtually Virtual

Posted on by Astrid
Daily writing prompt
In what ways do you communicate online?
View all responses

I get almost all of my social interaction from the Internet. I mean, yes, I do interact with my staff offline, but I mean interaction for fun and connections. Heck, without the Internet, I wouldn’t have met my wife. I have probably told the story of how we met a few times before, but it all boils down to one message I put on a forum back in 2007 and my now wife’s desire to expand her social circle. Had I not moaned about being bored and feeling lonely living on my own, she might never have reached out.

As for the types of online communication I use, these have evolved a lot over the years. Forums are no longer a thing. Neither is Facebook or so I’m told, but I still use it almost daily. I rarely post anything to my personal wall, but I do participate in groups and gather information off Facebook (though obviously one might wonder how much of that information is actually misinformation).

I’ve been told blogging is no longer a thing either. It’s probably partly true, in that for a blogger I’m young at 39 and eventually the generations above me will die out. I have been blogging on WordPress for 19 years next month, though I’ve only had my current blog for 7 1/2. Oh wait, I briefly had this blog back in 2011 too and till this day remember an embarrassing post about my wife from just after we got married.

So what types of online communication are actually still a thing today? I doubt I use many of them. I never used Snapchat and only watched a couple TikTok videos several years ago. I did try Instagram several times, but didn’t like it. I do watch YouTube videos, but will never create video content myself and that does make it less fun.

I do try to use Discord for expanding my social circle but experience that I’m a dinosaur compared to most of the users even on adult-oriented servers. Oh wait, someone half my age is already an adult. I remember explaining that Discord is like IRC and mentioning this in a Discord server and no-one knew what IRC was. I got a comment asking how it felt to be older than Google and responded that I’m even older than the World Wide Web.

As I get older, I find it harder to adjust to the new developments in online communication. I mean, I’m typing this post using the Block Editor and that’s a major struggle for me already. I learned WhatsApp with relative ease in 2017, but Discord is very hard for me to adapt to. However, I do want to keep up with the changing world of Internet-based interactions. If I don’t, I’ll lose the most important vessel of connection to the outside world. After all, my life might’ve become less exclusively virtual since living in a care home, but like I mentioned at the start of this post, the Internet is still where I gather most opportunities for leisurely interaction.

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”.

Janie Mac I’m Nearly Forty…

Posted on by Astrid
Daily writing prompt
What are your thoughts on the concept of living a very long life?
View all responses

Last Monday, I had a meeting with the intellectual disability physician who prescribes my psychiatric medication. The first thing we needed to discuss, was me tapering my antipsychotic. That’s going on, thankfully. However,I also had been complaining for months about increasing tremors in my right leg and hand, decreased mobility and more pain. Unfortunately, according to her, there’s nothing that can be done about these issues to make them go away. I mean, she’s referring me to occupational therapy, but it’s not like that’s going to lessen my symptoms. More like make them more manageable, I hope.

She says my symptoms are due to the brain bleed I suffered as an infant. She however added: “You’re getting older.” Ouch! I’m turning forty this year. That’s not old, or is it?

I’ve always thought that I wouldn’t live a very long life. I mean, my paternal grandma made it to 94 and, when I was a child, my parents thought I took after her. Now, not so much. My other grandparents all lived to be in their late seventies or early eighties. My father will be 77 next week and my mother will be 71 in April. Familially speaking, I’m not at risk of dying young, even though my maternal grandmother suffered from heart disease and diabetes for decades before her death.

However, I do have the brain bleed. Cerebral palsy in itself doesn’t limit one’s life expectancy. Autism, statistically speaking, does. And it’s probably due to my mental health that I won’t make it to old age. I’ve had more close calls in the last few years than I’d like to admit.

My wife and I recently had a discussion about who would go first. She doesn’t cling to life as much as I do, but I’m far more impulsive. I hope both of us will make it to old age and in relatively good health too.

The above song has been on my mind for a few months already. My wife and I have been together eighteen years, but oh well…

Beating Myself Up Over Failed Intentions… #JusJoJan

Posted on by Astrid

Hi everyone. Today I’m struggling quite badly yet again. I’m feeling quite depressed and like life is slipping me by. That’s not good, but sometimes it’s the best that can be.

When I set my hopes for this year, I fully intended to experience more, yet here I am, six days into the year and I’ve abandoned Morning Pages, am in bed a lot again or just blabbering on to my staff about whatever.

However, feeling guilty about not having made the most out of the day, means even more of my time and energy is wasted. Rather than beating myself up over a day gone to waste, I’d much rather make the most out of each moment. And sometimes “the most” is pretty little.

About half an hour ago, I was talking on the phone with my wife again and responded to the question of what I’d done today by saying that I’d gone on a walk and played dice, so not much. Then I realized that I’d also made a necklace. Remembering that made me smile to myself.

Of course, my day schedule is still not working as it should and that might never change, but it’s up to me to make my life meaningful. And sometimes, that means hyperfixating on some random thing, like the fact that I almost certainly finally found the perfect recipe manager. It’s my fifth or so, so this did mean having to transfer my recipes from my previous one into this one. However, this did give me another opportunity to look up interesting recipes.

Now it does often frustrate me that, even though I make plans to cook or bake, they rarely come to fruition. However, like I said above, fretting over this means even more time and energy has been wasted.

This post was partly inspired by today’s #JusJoJan prompt, which is “intentional”. One thing I beat myself up over, is the fact that I didn’t blog yesterday and hardly wrote anything else, so in that sense who am I participating in #JusJoJan? There’s however no jotting police other than my own inner critic.

The Magnifying Glass #JusJoJan

Posted on by Astrid

When I was about eleven, my parents gifted me a magnifying glass for my birthday. It was a small hand-held magnifier that magnified everything eight times. That way, I was able to read large print for a little while longer, albeit slowly. That is until my vision deteriorated even further and, even with the magnifier, I could no longer read the large print atlas that I so loved. That was sad.

Now that I’m totally blind and couldn’t care less about that large print atlas, I do wish I’d kept the magnifying glass. Not for myself, but so that staff can more easily help me with my crafty pursuits. Many of my staff struggle with the detailed work involved in jewelry-making or with reading small print.

Then again, with the print, I could easily point my iPhone camera at it and have Seeing AI, Envision or another related app read the text for me. Intriguingly, yesterday I was chatting with a staff about learning to write and she asked me whether I could still write by hand. I asked her to hand me a pen and a piece of paper and wrote my first name onto it. Envision didn’t give me any feedback, but Seeing AI read everything except for the A. Of course, every letter except for the A was an inch tall. I am however pleased that it was legible by AI.

Not that it’s of any use in daily life. I mean, when I had to get a new passport a few months ago, it was decided that my handwriting isn’t readable enough for me to write my signature. That’s in part because my signature has always been a mess because I never quite understood the concept. However, my handwriting has definitely worsened over the years. I’m glad though that I got the comment on my passport that I’m unable to sign, because that way until I’m due to get a new one in ten years, no-one will ask me to try and then conclude that my signature looks nothing like the one on my passport. I had that problem when my wife and I were buying our house. Thankfully, the solicitor was able to ask to colleagues to sign in my place. Next time, official people will know beforehand thanks to the note on my passport.

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

My Existence Is a Medical Miracle, Or Is It? #3TC

Posted on by Astrid

Hi everyone. I just stumbled across Today’s #3TC prompt. In response, carol anne shares about her premature birth. She was born three months prematurely in 1980 and considers herself to be a medical miracle.

I, often, believe the same. I mean, I was born just over three months prematurely, albeit six years later than carol anne. I weighed 850 grams or 1lb 14oz at birth. I spent three months in neonatal care.

When I was younger, I’d occasionally half-jokingly say that I’m a calculation mistake. The reason is the fact that I was born at sometime between 25 and 27 weeks gestation. The official paperwork says I was born at 26 weeks 4 days gestation, but this wasn’t always easy to determine back then. My mother claimed that, back in 1986, the line between actively keeping preemies alive and only treating them when they showed genuine strength, was at 26 weeks. I never cared to look up whether that’s true, but I do know that my doctor was adamant he was keeping me alive. In this sense, not a miracle.

In another respect though, I’m definitely a medical miracle, in that obviously I wouldn’t have survived without medical technology.

Yesterday, I read about the Dionne quintuplets, who were born in 1934 and the last one of whom had just passed away. Compared to them, I’m not a miracle at all. I’m glad about that, as they were on public display throughout their childhoods.

Like carol anne, I realize I didn’t just survive thanks to medical technology, despite the fact that’s what my doctor more or less said when my father questioned him whether I should be continuing to receive treatment after my brain bleed. I wouldn’t have survived had I not had the will in me to survive.

This is somewhat of an interesting realization in light of my suicide attempts over the years. In 2017, I survived two medication overdoses and, this past summer, I cut my wrist. Thankfully, I survived and, in the case of the incident this summer, without medical intervention. I realize this means I still somehow have a desire to stay alive.

The War on Time #3TC

Posted on by Astrid

Hi everyone on this cold Boxing Day. When I saw today’s #3TC prompt, I was reminded of a newspaper article my father shared with me in late 1999. It was called something like “The war on time” and was about all the ways people have fought over timekeeping and calendars over the centuries. It included, of course, the change from the Julian to Gegrorian calendar in 1582. I gathered from that article that our calendar’s still not fully aligned with the sun, so that it’s proposed that the year 4000 won’t be a leap year.

By the way, can you believe we’re closer to that year now than we are to the year Jesus was born? Interestingly, in that same article I read that Jesus wasn’t born in the year 0 (which I’m pretty sure no-one had a number for back then) or 1. He was probably born at least five or six years before then and most certainly not on Christmas day. It makes some sense to celebrate his birth around the end of the year though, but that would be closer to March rather than January. Then again, back in the day the months of January and February didn’t exist.

I used to love learning all about timekeeping and calendars. I could probably find a lot more info about it now, over 25 years later and with my having access to the Internet. But I can’t be bothered, honestly. I’d rather be writing random ramblings.

Now going to turn off my little electric heater. The heating in the care home broke down on Wednesday. I noticed I was freezing, but didn’t connect the dots, since it was supposed to be -5°C outside too. I spent the holidays with my wife and came back around 5PM this evening to a home that was still cold. The staff figured out the problem yesterday and it got fixed, but with the type of heating we have, it takes forever for the entire home to warm up, hence why I put on the heater.

Fear (Or Another Four-Letter F Word)

Posted on by Astrid

Fear. I’ve used this word as a starting point for my writings many times. The idea comes from Mari L. McCarthy’s journaling prompts. The idea is to pick a four-letter F word and write about it or use it as a prompt. Well, I’m doing that now, but I doubt I’m actually going to write about fear. I honestly don’t know what to write at this point and am not feeling anything in particular. That is, I guess I “should” be feeling something, but I don’t know what. Alexithymia. That’s what I believe this is called. Any emotional state for me is “good”, “bad” or “neutral” like right now. I don’t ever feel totally relaxed I believe. There’s always some level of stress or anxiety or fear in my body or mind.

My movement therapist tries to tell me that my body needs to get used to the feeling of being relaxed, because due to my early childhood trauma, it never learned to trust this feeling. That makes some sense, in that I almost always feel like I’m on high alert even when I’m half asleep. Is that even possible? And if so, isn’t it just normal? Do I even know what “normal” is, being that I’m autistic and otherwise neurodivergent, multiply-disabled and a trauma survivor? I doubt it. But if I’ve lived my life like this for nearly four decades, is there any way of changing it? I hope there is, because this feeling of always being on high alert is exhausting.

This is another freewrite I originally typed up in Google Keep, then finished here.