How I’m Feeling (Or Something Like It)

Posted on by Astrid
Daily writing prompt
How are you feeling right now?
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I’m not sure how I feel right now. It’s past 11PM and I badly want to write, but don’t have the slightest idea what about. That’s probably why I’m turning to the WordPress Daily Prompt, which is quite generic today if you ask me. Or is it? Maybe it’s just that I, being quite intellectually-focused, don’t know how to answer this.

Wait, I was an Enneagram type 4, right? I guess not. I’m perpetually confused as to whether I’m a 4w5 or 5w4. Maybe that means I’m some other type entirely. Or the Enneagram is just pseudoscience (which I know it is but feel in my heart that it’s not).

But I digress. I’ve been feeling all sorts of things today. In the afternoon, I rode the side-by-side bike to the next town to buy some groceries. I also bought a hand mixer and a baking tray, because next week I’m going to bake Biscoff blondies. This was a fun activity, so I felt good. Retail therapy, I guess.

In the evening, I felt overloaded because my spouse was telling me a story on the phone at the same time that a staff entered my room. This had me feeling stressed out for an hour or so.

Then I felt excited again, as I was going to craft a special coffee for my fellow residents and staff. It’s special because it had hazelnut-flavored coffee syrup in it and foaming milk on top. I’m no barista or even close, but I liked the activity. One of my fellow residents, the last time she got my special coffee, was over the moon about the “liquor” in it.

Now it’s 11:30PM and I’m probably supposed to be in bed, but I don’t really feel tired. I think I’m just going to read some more blogs and then go to bed.

Simple Pleasures #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “simple”. When I saw the prompt yesterday, I immediately thought I had to write about simple pleasures. You know, the little things that make life worth living when all else seems rather grim.

I could of course nag on about the cup of green tea. The one I got at 9PM one day over six weeks ago and that, while enjoyable, also triggered a flood of negative emotions because, really, is life all about a cup of tea? That being said, I’ve tried to make it a more regular habit to ask for a cup of tea at around 9PM.

Most of the simple pleasures I can think of right now, involve food, but not all do. Birdsong is also a simple pleasure I enjoy. So was a shower I took on Thursday when I was feeling particularly miserable.

As a multiply-disabled person living in an institution, I sometimes find joy in things that are out of the ordinary for me even though these things are normal for most people in my country and the rest of the developed world. They are, however, luxurious to people in less fortunate parts of the world. I also realize I am privileged to be able to go online when I want, as even in some other developed countries, people in the care system can’t. That doesn’t mean my life is easy. It’s not. I may have it better than people in many parts of the world, but that doesn’t mean my struggle isn’t real.

However, I do try to find positives each day. It sometimes feels like an obligation, because I used to be told all the time that I’m being negative on purpose. However, it does genuinely help me to acknowledge the simple joys each day provides.

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.

Romantic?

Posted on by Astrid
Daily writing prompt
What’s your definition of romantic?
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Well, this is an interesting question. One could define romantic as a form of attraction, ie. being in love or having a crush on someone. In that sense, I would say I rarely if ever experience it. I mean, I had childhood crushes, but the reason I called these crushes was more because that’s what everyone else called them. You know, when a girl and a boy hang out, they are almost automatically assumed to be in love. And even when I found out I liked girls more, I still said I was “in love” because everyone my age had a boyfriend or girlfriend.

When I met my now best friend, both of us probably had similar thoughts of what sharing our life was supposed to mean. We now realize we weren’t looking for a romantic partner but for a best friend. So that’s what we are. We are technically still married, but we aren’t in love. Honestly, never were.

Then, “romantic” can refer to an expression of thinking someone is special. In this sense, I am quite romantic. I am a sucker for hearts even though they make my best friend feel slightly uncomfortable now that we’ve clarified to each other that we aren’t in love. In this sense, the feeling of having a crush on someone, for me, is quite different from feeling that they’re special. I must admit I’m still figuring these things out though.

…Not Life Experience Deductible

Posted on by Astrid

Hi all. As I shared before, my birthday is next week. I’ll be 39. This means that next week will mark the start of my 40th year on this planet. It isn’t necessarily something I take too seriously, except that my best friend, who is “only” 36, loves to remind me that I’m the older one of us. Then again, life starts at 40, right?

We were joking about age again this afternoon when my best friend came up with a new mantra for me. I’d have to explain here that, for years when I was in the psych hospital, I had a profile signature at the forum my best friend and I know each other from (and at many other autism and mental health forums). It was: “Time spent in psychiatric institutions is not life experience deductible.” With this mantra, I meant to counter the professionals who told me that proper help and treatment, a long-time place to reside, etc. could wait because I was still young. Yes, seriously.

Now the mantra my friend came up with was: “The first 40 years aren’t life experience deductible.” This is actually the polar opposite of “Life starts at 40”.

While I believe that, indeed, the first (nearly) 40 years of my life matter as much as however long I have left here on Earth, I do believe that it’s never too late to create a brighter future. And that doesn’t have to include huge leaps forward. It can include small sparks of joy. In this sense, nothing I go through or accomplish each day is life experience deductible. Yes, it’s incredibly frustrating that things in the care system progress at such a slow pace, but that doesn’t disqualify the meaning of everyday pleasures.

Written for Fandango’s One Word Challenge for today, which is “mantra”. I love doing these little freewrites.

Bittersweet Birthday

Posted on by Astrid

Hi everyone. As you may know, my birthday is next week. It is a bittersweet day in ways that it isn’t for most people. After all, yes, many adults, particularly those who are childfree, no longer celebrate their birthday because they have the money to buy themselves presents and a day to remind yourself that you’re getting older isn’t special to them anymore. It never was to me, as I hated growing up as a child due to all the expectations set on me.

Now though, I no longer mind getting older. In fact, when I turned 30, it felt exciting because I could finally join the over-30s groups on Facebook.

I do still have mixed feelings about my birthday though. I shared more about this last month. My birthday is rather bittersweet. However, bittersweet does include sweet.

For the most part, I like to turn the end of June into a celebration. It’s summer after all, which is my favorite season. This year, I am once again going to make a cheesecake for my fellow residents and treat them to a burger and salad. I am also still childishly excited about my presents. I know, I can buy myself whatever I want. That is, not really, of course, but I mean I have the financial security to buy my own presents. Still, it’s fun to know what others come up with as gifts for me. Yes, even the rather odd thrift store finds my parents usualy come up with. And by odd, I mean that they’re cheaper in the regular store than at the thrift store. I’m not a thrift store gal, but I appreciate those who are.

Sharing this post with Moonwashed Musings.

Shades of Blue

Posted on by Astrid

Hi everyone. This month, the Weekly Prompts Colour Challenge is “blue”. I have written several posts addressing the color blue. It is one of my favorite colors, probably my favorite after purple. Oh wait, now that I think of all the beautiful shades of blue, I actually believe as a general color category, blue is even better than purple. Sorry, lilac.

There are so many wonderful shades of blue. I once took a quiz on Dictionary.com to determine how much I knew about the different words for various blues. The only one I got wrong the first time I took the quiz, was the meaning of “cerulean”. I was unsure when I retook it today too, but remembered that my first instinct had been incorrect back then so selected the next thing that came to mind. And this time, I scored 8 out of 8 correct answers. That doesn’t mean that I don’t tthink cerulean should be purplish.

Since the quiz did not explain every shade of blue clearly, and there are many more that weren’t mentioned in it, I just looked a few up. Since I do have some concept of color despite being totally blind now, I can imagine what colors would look like. No-one can be sure whether I’m correct, but that applies to sighted people’s internal perception of color as well.

Blue is the color I have the most shades of in polymer clay and I don’t even have all of them. I have Fimo blue (true blue, so blue as blue should be, apparently), brilliant blue, pacific blue, aqua, blue ice quartz, blue agate and peppermint, which contrary to common sense is blue not green. I also have Premo cobalt blue and ultramarine blue, as well as Cernit in several shades of blue that I can’t remember. In this sense, it’s interesting to note that I hardly create anything primarily blue out of polymer clay. I think I need to change that.

Blindness Doesn’t Bind Me

Posted on by Astrid

I am blind. This is, in a sense, an advantage. Not because it means I’m more capable in some way than sighted people. Of course, I could be more capable than some sighted people in some ways, but that’s not due to my blindness.

I say my blindness is an advantage in that it allows me an easy explanation for my challenges when I don’t want to elaborate. Other blind people – those in the “competent blind adult” community – may think I’m setting a bad example. Honestly though, I don’t care.

I know blindness shouldn’t bind me. It shouldn’t keep me from achieving my goals. But neither should autism. Or mild cerebral palsy. Or any of my other disabilities alone.

But I don’t want to have to pull my every disability apart to see how it does or does not – or should or should not – limit me. I am not blindness, autism, cerebral palsy or whatnot. And yes, I know I’m more dependent than other people with my diagnoses. But I am not my diagnoses. I am myself and I lead a meaningful life as much as I can. And that includes not letting other people define what that is.

Written for Three Things Challenge #MM75. I didn’t know how to fit in the word “abound” and actually had to look up its definition to be sure I would, if using it, use it correctly.

When Pluto Was a Planet #SoCS

Posted on by Astrid

This morning, I read on a major Dutch news app that a dwarf planet had been discovered on the outskirts of our solar system, reducing the chances that there’s a ninth planet in our solar system to extremely low.

Wait… there are nine planets, right? That’s what I was taught in school and I’m not that old, am I? Or Maybe I am, since it’s been nearly 20 years since Pluto was officially declassified as a planet. It’s now a dwarf planet just like the newly-discovered one, even though Pluto is four times the size of this one.

That brings me to nostalgia in general. That time when Pluto was a planet, when there were 15 million people in the Netherlands… that’s a song, but there are now 18 million. I guess either time flies or I’m getting old or both, since there will always be 15 million people inn the Netherlands and Pluto will always be a planet. Oh, that’s rather ignorant.

This post was written for Stream of Consciousness Saturday, for which the prompt this week is “that time”. I’ve included the Spotify link to the song because YouTube doesn’t seem to work properly.

Like a Rolling Stone… #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday is “favorite place”. I am not a fan of traveling, so I have absolutely no idea what my favorite place to go on vacation would be. I did go on a postponed honeymoon in 2012 to the Swiss town of Zug and it was beautiful. That is, walking through the mountains was quite an experience. The town itself was full of top-notch expensive cars.

We haven’t been on vacation since 2014 and, though my best friend and I (my best friend currently still being my spouse, for those who don’t know) have discussed vacation plans, neither of us is keen on going anywhere, honestly.

I would probably be considered a homebody. Except, what is my home? My staff often refer to the care home as “home” when talking to me, but it still feels off. And though I have no plans of traveling to any exotic locations anytime soon (or ever, considering most truly exotic locations are not easy to get to for someone who hates flying), I wouldn’t consider my room in the care home to be anything close to a favorite place. Or maybe it’s my least hated place out of all. After all, I’ve never truly felt home anywhere. Not with my parents, not in independent living or with my spouse nor in any of the places in the care system I’ve resided in.

I guess I’m like a rolling stone. After all, I’ve never truly connected to any particular place. This feels sad.